Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

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• Note: please do not feed trolls posing as doctors or medical students who post messages here about how CFS is "funny" and is not taken seriously by doctors.

◄██ Unit 5 (Talk) ██► 18:26, 14 December 2006 (UTC)

He did not say CFS is funny, he said the article is funny. He did not say CFS is not taken seriously by doctors, he said many doctors consider it to be a somatoform disorder. And it was not trolling. Despite being a CFS sufferer, I was able to see where he was coming from. 86.129.148.112 10:29, 15 December 2006 (UTC)

CFS Community Link

I have a Chronic Fatigue Forum and Blog, I wanted to add it to the CFS Links Section. My site is www.chronicfatiguetreatments.com There is also a pretty extensive treatments blog and CFS News. Let me know what you guys think

My vote is no. I don't think it is appropriate. Perhaps have a link to your site placed in a relevant section of the Open Directory and then place a link to that. Jklsc 19:27, 24 April 2007 (UTC)

I agree with Jklsc, at this point links need to be trimmed. If it's not hard science it needs to be left out. Only so much can be gained from forums and blogs, imo this article is at its limit for them. Thank you for consulting first though, it shows that you actually care about the topic rather than promotion. Foolishben 10:58, 24 July 2007 (UTC)

Methylation cycle

I wanted to add some information about methylation cycle and cfs. Im using that treatment right now and its helping me alot. Is it ok if i write about it ,if so where should i put it

You could put it in the "Descriptive list of other etiologies/treatments". - Tekaphor 09:07, 28 February 2007 (UTC)

Added a blurb about research including a link to a poster paper. 68.85.119.250 23:04, 3 April 2007 (UTC)

Australian Guidelines

In the (now archived) discussion page, MikeEsp made the following statement:

"The Canadian definition has I believe influenced the latest Australian guidelines though I can't remember what that said exactly and I've lost the link I had for that."

I know of at least two such guidelines issued recently in Australia, both serious documents worth reading:

1. http://www.sacfs.asn.au/index.html

(Check the right hand column for downloads. The specific document is 'ME/CFS Guidelines: Management Guidelines for General Practitioners (English)', but there are also other interesting documents available on this site that people may wish to read.)

2. http://www.mja.com.au/public/guides/cfs/cfs2.html

(Has a PDF version link on this page.)

The final version of the MJA guidelines, done under the auspices of the Royal Australasian College of Physicians, was published in 2002 (with the original draft released in 1997). So it cannot have been influenced by the Canadian guidelines, which were published in 2003.

However, the 'ME/CFS Guidelines: Management Guidelines for General Practitioners' were published in 2004, and list the Canadian guidelines in the references section, so probably were influenced quite a bit by them.

Bricker 20:59, 15 December 2006 (UTC)

Thanks for that, Bricker! MEspringal 23:55, 11 June 2007 (UTC)

dividing this article up

Just been looking at the Multiple sclerosis article, a disease just as confusing as ME/CFS, but with a much more sensible article structure and division. Perhaps we should begin to move bits of the article to other pages, such as "Proposed Etiologies for Chronic Fatigue Syndrome" and so on. The article is fairly long and doesnt appear properly at all on a modern AXIM PDA. And maybe also get rid of that table - it doesnt look very nice and I dont think the formating is amazing either. Thedreamdied 00:35, 30 December 2006 (UTC)

Other pages could be CFS Research, CFS Proposed Etiologies and CFS Controversy, so the endless repetition of how hard to diagnose/how people dont understand etc etc could go elsewhere and make this a purely medical article. Thedreamdied 14:44, 4 January 2007 (UTC)

Unsure where to put new research

This article is very confusing in its present state. There has been some new research into CFS and memory, showing a difference between CFS patients and controls regarding medial prefrontal region activation in n-back tests. The abstract is here. Gregs 23:48, 3 January 2007 (UTC)

I agree, the article is ridiculously confusing. There needs to be a new break-off page entitled CFS Research, or similar, for this kind of thing. Thedreamdied 14:43, 4 January 2007 (UTC)

Just read this and thought I'd pop it in here... http://www.sciencedaily.com/releases/2007/01/070108191506.htm 9 January 2007 — Preceding unsigned comment added by 24.6.90.165 (talk • contribs)

"Psychiatric" stigma?

I came across this article after reading about Ken Wilber's recent seizures and serious medical problems. I was wondering about the sentence referring to "... the damaging public (and even medical) perception of CFS as a psychiatric or even psychosomatic condition." I've heard this a number of times, but I've never understood the, shall we say, ladder of stigma implied by this. Why would it be damaging to investigate or consider a psychological origin or component to the condition? Sure, health insurance is much more likely to pay for physical health care than for mental health care, but isn't that irrelevant compared to actually finding out what's going on so it can be treated? If suggesting (for example) psychologically-based therapies for CFS is considered damaging, or worse, insulting or even taboo, doesn't this have a chilling effect and bias on the overall program of research?

I ask because I tend to think that ultimately medicine in general would be much more effective if everyone (patients and doctors alike) considered behavioral changes to be the best first-line of prevention and even sometimes treatment. I think this is already widely discussed in terms of the major killers such as heart disease and obesity, which are certainly not psychiatric in any sense. No one who had a heart attack is insulted when their doctor tells them they need to start exercising more, and no one thinks that means their heart attack wasn't real, or that they're a bad person, or anything like that. Is there some reason to believe that CFS is considerably less amenable to the same kind of, say, holistic approach?

By the way, I hope it's obvious that I'm not trying to say that Ken Wilber's 13 seizures were "psychosomatic"...

Anyway, I haven't participated in the Talk section of wikipedia before, so I apologize if these comments are inappropriate to this forum. I am sure they will be edited out promptly if necessary! Omgoleus 00:49, 27 January 2007 (UTC)

I just removed that sentence. It was added a year ago as part of a number of "minor edits and clarifications". However it is inappropriate here. It is very unfortunate that there is a huge stigma to psychiatric conditions among the public, and this makes CFS research very difficult. Psychosomatic illnesses have an even greater stigma, and even many doctors think that psychosomatic = imaginary illness (which is incorrect). This is strange considering that psychosomatic illnesses account for over 50% of doctor visits and disability payments, as a result of stress-induced illnesses. --Sciencewatcher 22:23, 7 February 2007 (UTC)

Sciencewatcher, you apparently have problems differentiating between Chronic Fatigue and Chronic Fatigue Syndrome. The latter is a neurological Illness (as classified by the WHO), and has - according to the CDC - a biological, not a psychological root. Your personal opinion in this issue is of no importance. Therefore: Please back up your POV with factual evidence and avoid weasel words - otherwise I and others will revert your edits. A note of caution: If you try to back up your psychological constructs, see to it that the Papers you cite use the current CDC (Fukuda) selection critera. (This is not the case in most publications which "prove" that CFS can be cured by psychological interventions, so be warned, basing your arguments on those will not get you very far...) —The preceding unsigned comment was added by 192.68.211.173 (talk • contribs).

Agreed. Sciencewatcher is way out of line.

Do your homework properly, SW, and back your arguments with some solid evidence, or sod off. Bricker 13:45, 8 February 2007 (UTC)

I concur, avoiding bias in controversial articles is important. Please be cautious, SW. Thedreamdied 14:07, 8 February 2007 (UTC)

I just checked my edits, and I don't think I said anywhere that CFS has a psychological root. Please clarify. Also, the only place I didn't post evidence was in the (now reverted) section I added to the controversies section, but none of the other comments there have evidence backing them up either. Bricker: this is no place for insults. Also, a correction: the CDC has never stated that CFS has an organic cause. --Sciencewatcher 19:08, 8 February 2007 (UTC)

Wikipedia might not be a place for insults - it is not the place to peddle outdated myths either :::and your edits seemingly serve that purpose.

Here is a quote from Julie Gerberding, dated November 2006: "In April of 2006, a group of :::scientists led by CDC’s Drs. William Reeves and Suzanne Vernon published some ground breaking :::research suggesting a biological basis for CFS". Its on the CDCs Website for CFS.

As for your other edits: Back them up with facts sticking zu CDC-Criteria conform CFS or their :::gone.

(The review backing up "the alternative view" openly stated it included patients selected by :::(sic!) ANY criteria. That is not the CDC Critera.)

Good luck.

Bricker and thedreamdied, please take care SW's psychosomething POV, I won't have much time till next month.

Perhaps you should actually read the research done by Reeves and Vernon. It is basically saying that some people have a genetic predisposition to CFS. But the same is true for depression. And saying it has a biological basis does not mean it is organic. Depression also has a biological basis. I'm not saying that CFS is depression, just giving an example. Your comments go a long way to showing the anti-psychiatric bias that is present in CFS research, and it appears to be you who is peddling outdated myths: namely that psychiatric illnesses cannot have physical, neurological and physiological symptoms. --Sciencewatcher 22:18, 8 February 2007 (UTC)

Yes. And physical illnes also has physical, neurological and physiological symptoms. And that's why there is a controversy. And that's why you are going to back up your psychobabble with CDC-Criteria conform research or have it reverted.

Since the brain is part of the body, there must be a point beyond which the distinction between the mind and biology starts to blur.

I have CFS and I believe that it is a mental condition (no more insane than other daft things people do to themselves, such as warring with neighbours or getting fat by overeating, but financially more damaging). Until someone comes up with a full explanation and a cure, we will not know for sure. Tantalising evidence is not proof of anything, so for the time being nobody can say just whether it is a physical illness, or a mental condition caused by some combination of a genetic predisposition and an unfortunate life history. The angry people on this page would do well to remember this: nobody knows for sure. 86.141.59.2 12:50, 9 February 2007 (UTC)

192.68.211.173: which "psychobabble" of mine are you going to revert? If I have neglected to put any references in any of my edits, of course I will be happy to rectify that. You will just need to point out which ones. As far as I am aware I have included references where necessary. Also, I never actually said anywhere that CFS is a psychiatric illness - I merely brought up the discussion here to point out that there is a psychiatric stigma, which you and others here have nicely proved. There are many CFS patients who will simply not believe that the illness can be psychiatric in origin, no matter what evidence is presented. This POV attitude makes wikipedia articles such as this one of dubious value. --Sciencewatcher 21:19, 9 February 2007 (UTC)

SW, your an ideologist. So rather than wasting time with discussion of the broader picutre, let's look at your ravings. Removing the bracket was the first useful thing you did for this article. The other edit is completely unacceptable. The CDC published a toolkit in November which in fact states the need for medical treatment. Bricker and thedreamdied, please take over from here, I really don't have the time right now.

192.68.211.173: you still haven't said which edit of mine you have a problem with. Do you mean this one: "CBT should always be used in conjunction with medical care and treatment, as it is not a substitute for such, and cannot treat the physical basis of CFS"? As I said in my edit, I removed this comment because it is biased, POV and untrue. First of all there is no agreement that CFS has a "physical basis". Secondly, research clearly shows that CBT does cure the physical symptoms of CFS. If you want me to post references, let me know. I just had a look at the CDC CFS toolkit, and it says "Of the CFS treatments studied to date, two have demonstrated the most promise thus far. The first is activity management/graded exercise, which is covered in another sheet in this toolkit. The second is cognitive behavioral therapy, or CBT, which has been shown to be effective in small, short-term trials." Speaking of CBT, it looks like this article is in serious need of a large-scale overhaul, as most of the CBT sections of the article are biased, POV and untrue, and the factual information has been relegated to the "alternative view". I'll post a proposal in a few days with my suggestions for changes. --Sciencewatcher 17:14, 12 February 2007 (UTC)

What technique - of which I am not aware of - do you use to determine what's true and what's not?

The toolkit calls for the use of medication to adress certain symptoms. So your argument that the entire sentence is untrue, biased and POV has no basis, at least not in your above comment. So come up with something better, or I will revert it.

Certainly medication can help the symptoms of CFS, but that is not what the sentence said that I removed. By all means you can say that medication can address certain symptoms. However it is untrue to say that CBT cannot address the physical symptoms of CFS. It is also untrue to state as established fact that CFS has a "physical basis" (if by that you mean an organic cause, which is what I assumed the sentence meant). --Sciencewatcher 18:15, 15 February 2007 (UTC)

First let me say the stigma of ME/CFIDS is far worse than that of mental illness. People with mental illness may sadly be discriminated against in certain quarters but will they be told that they only have a belief they have an illness, have no clinical provision whatsoever and worse still be given inappopriate or dangerous, relapse-inducing therapies? Will they experience profound neglect not due to lack of funds but as institutional policy? The difference is that mental illness is (decreasingly) discriminated against for what it is, while ME is (increasingly) discriminated against for what it is not. People who are just a shade too PC to crack jokes about mental illnesses feel it's Christmas when it comes to ME or CFS because as one psych said it is seen to lie in a "grey area" without validation while psychiatry and the media have for decades done a really good hatchet job on sufferers.

"considered behavioral changes to be the best first-line of prevention and even sometimes treatment. I think this is already widely discussed in terms of the major killers such as heart disease and obesity"

I'm sure at least some people with heart failure would be leery of getting an RX for psych/lifestyle change without getting any treatment for the actual disabling heart symptoms, whether that be "merely" pain medication, or co-Q10 for mito disease (yes I know that's been called into question), or antivirals where they exist for viral cardiomyopathy, beta blockers, calcium agonists, oxygen for cardiomulmonary problems or even surgery. Not to mention that magnesium and potassium have been used to treat cardiac problems. As for obesity in general modern sense, well, few will see that as a medical disease, end-stage complications and some controversial theories aside. If you think ME is anything like obesity as a health issue, boy, you really are POV. Maybe you're simply ignorant of the fact that "lifestyle changes" for severe, unstable, decompensated heart disease have to be at least contiguous with medical treatment, if they're relevent at all. People with severe heart disease simply cannot be rehabilitated (unless they have a successful transplant which is beyond the scope of any analogy with ME/CFIDS) as it's too dangerous and leads to further precarious deterioration. Your first problem here is the assumption that all heart problems are equal.

You say obesity is not psychiatric, yet it seems almost unanimous that lifestyle/behavioural factors (lack of exercise, poor diet, comfort eating perhaps due to depression or affective disorder) are solely causal. If there's an obesity virus or gene, it's still waiting to be discovered and there are no abnormalities that can't be explained by the above lifestyle factors (unlike ME/CFS).

"No one who had a heart attack is insulted when their doctor tells them they need to start exercising more, and no one thinks that means their heart attack wasn't real, or that they're a bad person, or anything like that."

Actually that is pretty insulting and it says a lot that you can't see it. What you are effectively doing is assuming that lack of exercise is a causative/perpetuating factor in ME (with all the inferences and associations of "phobic avoidance", "laziness", "trivial" and "fatigue") and completely subverting the sufferers experience, supported by the historical data and opinion, that ME actually deteriorates through even trivial activity, nevermind exercise, because a very profound, progressive, exertional disease is at it's heart (pun intended). That's like suggesting anorexics are eating too much. (I've never met a sufferer who was doing "too little" and don't believe any such sufferers, if they exist, are at all representative). This is a very serious pathological reaction which (I gather) is nothing like common "lifestyle" heart disease, perhaps because as Dr Cheney suggests, viral cardiomyopathy may be a contributory factor if not a cause. This is corroborated by Dr Lerner's findings of fibrosis of the heart tissue as well as inverted T-waves etc, and Peckerman's findings of left ventrical dysfunction. The autopsy on Casey Fero found cardiac scarring which "shocked" the pathologist. By contrast "heart attack" is a very broad term, and no-one is saying that heart disease doesn't exist, yet "re-attribution" is a central feature of CBT, at least in the UK. Here are some quotes regarding the exercise/heart pathology issue:

“When [sufferers] stand up, [they're] on the edge of organ failure due to low cardiac output.” - Paul Cheney MD [OI is a very common feature of ME/CFIDs and one of the main disabling features]

"ME/CFS is actually more debilitating than most other medical problems in the world”9 including patients undergoing chemotherapy and HIV patients (until about two weeks before death)." - Carruthers et al citing Jason.

"Recovery time is inordinately long, usually a day or longer" - Ibid. [NB the researchers Lorna Paul(?) noted this was certainly pathological, and perhaps unique(?)]

"Upon limited standing, the patient experiences overwhelming exhaustion, an urgency to lie down, confusion, malaise, and

worsening of other symptoms. ... Lying down helps alleviate symptoms." Ibid. [NB doesn't sound like the kind of one-off heart-attack that's rehabilitative, does it.]

"Lower stroke volume and cardiac output, and reduced circulation correlate with symptom severity37. Treadmill walking suggests

significantly reduced vagal power38. Autonomic dysfunction underlies COI and its subtypes of neurally mediated hypotension, postural COI, orthostatic hypotension, and orthostatic narrowing of pulse pressure." Ibid

"It is essential that the patient does not exceed his/her endurance limitations or activity boundaries too often or

too deeply because this can cause a severe, long-term relapse." [NB Many sufferers were mildly affected but were forced to struggle on regardless with just essential daily living not exercise, but are deteriorating profoundly through adverse reaction to that activity]

"The cardiac index of CFS patients is so severe it falls between the value of patients with MI and those in shock" Cheney, 2007 IACFS Conference

And lastly you're in complete denial that there is a vocal school of psychiatrists who claim very much that ME (read "medical disease" if you prefer) does not exist and that all can be explained due to deconditiong and avoidance (see the KCL web page "explanation"). It is totally bizarre to on the one hand claim that CFS can be "cured" by CBT -- which although I'm sure there are a few sporadic quackish, carefully engineered studies that claim such, has no good evidence or consensus at all, except perhaps in the UK (I don't know if the Netherlands count since they don't recognise ME or CFS at all...) and on the other claim that CBT can be used to treat *underlying* medical pathology. I guess that's why all the RCTs into cancer treatment with CBT have been a dismal failure that have not prolonged life at all.

"A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based on the premise that the patient’s impairments are learned due to wrong thinking and “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the

interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patient’s life, but could be potentially curative”46. Supporters suggest that “ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes”47. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients’ symptoms, blame them for their illness, and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc. Dr. A. Komaroff48, a Harvard based world authority, stated that the evidence of biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest”. Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them “CBT”. We urge such doctors to use the term “Self-Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy”." Ibid

MEspringal 01:30, 12 June 2007 (UTC)

CBT is actually a recent corruption of two previous treatments that I am more familiar with that preceeded CBT, namely CB (cognitive behaviour) and BT (behaviour therapy) for a good example on how they used to be applied a decade ago in CFS see the Article subheading Essential Fatty Acid Treatments. It seems to me that the current term is a corruption of these two because not only is it a new term, but it has been restricted to a narrow focus to suit the agenda of a particular group of therapists. The problem is they have poisened the water for others, and given the whole approach that has merit when applied as origonally designed, a bad name. Whats in a name? everything if it turns patients off! That’s why I think you are looking for a new name, for the origonal approach, am I wrong?Jagra 11:44, 19 June 2007 (UTC)

Proposal: moving the CBT "alternative view" to main article

As it stands, the CBT section contains a biased POV view from patients

Actually all the criticisms come from MDs and biological researchers into the illness. See my quote from Carruthers et al about CBT above. Your attempt to use this to discredit and character-assassinate sufferers won't be tolerated.

which does not correspond with the science, while the "alternative view" contains the current scientific facts. It is my proposal that the "alternative view" of CBT be moved to the main article, and the current CBT article either be moved to the "alternative view" or deleted completely. My own view is that it should be deleted completely, as it is mostly biased, false and POV. However as the view is shared by many CFS patients, support groups and researchers, we could leave it there as the "alternative view", while pointing out that it is not supported by science.

This is going to cost you a lot of time and you will end up with a lengthy section about the controversies of CFS/ME and CBT. Other people have tried that before you and that's about the optimum you can achieve.

Please do not post insults or abuse - you will be ignored if you do. Stick to the science and the facts.

And I respectfully suggest restraint from patronising supercilliousness good form too. You don't have some special god-given insight into the "science".

Anticipating the arguments in advance that this proposal is likely to generate, here are responses to some of the most likely objections:

"all the evidence supporting CBT is based on the Oxford criteria, so the people may not even have had CFS in the first place" - the reason why most studies use the Oxford criteria is because most of the research comes from the UK, where the Oxford criteria is the main research criteria used. However if you actually read the case studies of people who have recovered from CFS using CBT, you will see that they also conform to other criteria for CFS, such as the Canadian definition (Carruthers), and the latest CDC criteria (Fukuda).

No, most of the BEHAVIORAL reasearch comes from the Netherlands/the UK.

As for the applicability across definitions - so far you only came up with weasel words (that's no abuse, look it up in wikipedia). Prove it or forget it. Anecdotes don't count. Nor do your personal interpretations of what single cases had or had not.

If you insist on your Oxford stuff in an Article about CFS, you will have to live with the controversy around it.

LOL The "Oxford" arguments and counter-arguments are so early 90's don't you think. CDC CFS is such a car crash of a concept it doesn't need Oxford to mess things up. And peer review is often so poor that the criteria are still seen as optional despite claims to using the CDC definition (Judith Prins anyone).

"CBT can only cure psychiatric symptoms such as depression, anxiety and fatigue, it cannot cure the physical symptoms of CFS, such as exercise intolerance, myalgia, NMH, shrunken adrenal glands, hypoactive HPA axis etc." - research into IBS has shown that behaviour therapy significantly reduces the physical symptoms of IBS (PMID 10763948). Also, if you read the case notes of people who have been cured of CFS using CBT you will see that it does cure their physical symptoms as well. All of these physical symptoms are seen in other stress-related illnesses such as PTSD and burnout.

Good for CBT. But we are talking about CFS. So prove your point. Also, if the case notes are anecdotes, you are waisting everybodies time.

Also choose your "physical symptoms" very well ScienceWatcher, even though they're not all officially part of the CDC criteria. I'd like to see you do the same with pyrexia or subnormal core temperature, chronic delayed OI with POTS, blackouts, ataxia, dysphasia, exertional respiratory dysregulation, dyspnea, diastolic cadiomyopathy, white matter atrophy, etc. Where is the evidence that physical signs (which many CBTers actively refute exist, hence their excision from the 1994 criteria) are cured? From the CBT studies I've seen claiming success, this is not what is reported as happening. Perhaps we should talk of the biologica findings rather than mere signs/symptoms, but I doubt the CBTers bother looking for Rnase-L, activated elastase, arterial stiffness, ventrical dysfunction etc... as they might not find them in their patients...

"Many people recover naturally from CFS over time, so anyone who recovers due to CBT was probably about to recover naturally, and the CBT had no effect" - clinical trials show that CBT results in significant improvement over "natural course" treatment (doing nothing at all) (PMID 11265953 and others).

The study you cite did not use the Fukuda Criteria. Read the entire study. It did not require the 4 out of 8 criteria.

BTW: the government just examined the CBT/GET CFS-Centers, and they did not live up to the promises made in the Prins et al. studies. Weasel words from me, but I can provide you with a link to the report.

Another quack study into CFS. Ho hum.

"If you recovered using CBT then you couldn't have really had CFS in the first place" - this argument is founded on the firm belief that CFS cannot be psychiatric in origin, and it is expounded every time someone says that they were cured by CBT or indeed any psychosocial intervention. However when you actually look at the evidence, by looking at the actual case studies of people who have recovered from CFS using CBT and similar therapies, you see that they did really have CFS as described by all the major criteria (Fukuda, Carruthers, Oxford, etc).

Are you going for anecdotes? Weasel words, prove required.

Where's the actual "case studies"? And of course the Canadian definition doesn't say remission is impossible. I know a few sufferers who've had temporary or lasting remissions, and if they don't recognise a relapse-remitting potential these "natural causes" comparison groups may be as weighted as their success groups. WHich sometimes required an increase of just a few points on the ratings scale (from +60% to start off with)

"CBT is based on a flawed, unproven etiology of CFS" - this I would tend to agree with. However, just because the treatment is based on a flawed theory of the illness does not imply that the treatment does not work. Lithium has been used as a treatment for bipolar disorder for over half a century, but its exact mechanism of action is still unknown. Further research should refine CBT - both the therapy itself, and the theory of how it cures CFS.

I also tend to agree with this. Your suggestions for further research are your suggestions, and there are other suggestions.

From the new, public founded studies in the USA 6 out 7 center on physical research.

"CBT does not cure everyone" - agreed, CBT only results in significant improvement in between 27% and 50% of patients, depending on the study. However just because it doesn't cure everyone does not mean it should be rejected. The research shows that CBT is significantly more effective than doing nothing at all.

Depending on the study, that's what I agree with, too. Unfortunately everything looks always good for the oxford criteria and rather bleak for everything else. So come up with the studies, than we take it apart peace by peace.

Get with the programme SW, CFS is *heterogenous*, so of course some people with nonspecific symptoms such as fatigue, sleep problems, headaches, sore throat and lymph nodes have a psych illness. That's not in question. What is in question is that such cases aren't wholly representative and don't tally with the original "aim" of CFS based on the Lake Tahoe etc ME epidemics and the original Holmes definition which while still flawed had physical signs included.

"CBT can be harmful to some patients" - there is no evidence that this is the case. In addition, many of the clinical trials state that no harmful effects were noted.

If a patient with leg pain (to use an example from an episode of House is admitted, has a treatment and immediately feels (audibly) worse, is that "evidence"? The fact is that there have been more than one patient survey where for the severely affected particularly (for whom just seeing a visitor will make them worse, assuming they're not expected to overcome being house/bedbound). One patient's experience was that she relapsed after a three-hour introductory interrogation, sorry, session. Most severely affected sufferers struggle to talk for more than fifteen minutes.

And that's before the inevitable Graded exercice (GET) part of the CBT kicks in. Yes, "re-exposure" is part of CBT.

Well, in theory it should not be harmful. In reality "if you look at the case studies" (<-- sorry, but you started that...) you will find that patients feel that they are blamed for their own misunderstood illness - which has a long tradition in psychiatry. Just think about diabetis, multiple sclerosis (<-- once called: 'The fakers disease') or psychologies latest disapointment: Helicobacter pilory infections.

I wouldn't argue though, if you edit that one out. In my personal view, it's an undue waste of money and undue airtime for psychiatry, but not harmful.

BTW - "Sciencewatcher", if you can take some advise - and that I mean in all earnesty - don't devote too much time to this. You can probably edit some overshooting or too edgy wordings - but you won't be able to turn the tide for CBT. The godfather of psychologising in CFS, Prof. Wessely disengaged already.

Supporters of a purely somatic point of view (and you can argue that that's wrong until your blue in the face - the not*psychology*world won't listen anyway, be that right or wrong) have the comfort of an exponentially growing and converging body of evidence in their back - so its a downhill battle for that group. The two countries which are currently devoting the most money to CFS Research(Japan and the USA, with Japan being No1 in the world right now, they supposedly have an own ministry for it) are not investing into psychological viewpoints, so you can guess which way the wind blows in terms of the paperwork they are going to produce. The turning point in both countries came when the figures about annual economic costs were published. Money, money money, isn't it funny?

--Sciencewatcher 00:18, 14 February 2007 (UTC)

Okay, now I'm confused as to whom I was responding to... -MEspringal 02:15, 12 June 2007 (UTC)

I agree that there is bias against psychiatrie. Part of it is due it's crass

CBT Evidence

Actually I was wrong. I assumed that because the studies were in the UK they used the Oxford criteria, but I actually looked at one study and it uses the CDC Fukuda (1994) criteria (see http://www.kcl.ac.uk/content/1/c6/01/47/68/QuarmbyComparisonofoutcomerswithinandoutsideconfinesoftrial2006.pdf). Anyway, this removes the argument that the studies are invalid because they only use the Oxford criteria. And even if they did use the Oxford criteria, that does not mean they are not talking about the same illness. --Sciencewatcher 18:49, 15 February 2007 (UTC)

PS, don't use the term "weasel words" to describe my arguments. According to wikipedia "Weasel words are almost always intended to deceive or draw attention from something the speaker doesn't want emphasized, rather than being the inadvertent result of the speaker's or writer's poor but honest attempt at description." By using the term "weasel words" you are saying that I am deceiving people, which I resent. Stick to the facts and keep things civil please. --Sciencewatcher 23:31, 15 February 2007 (UTC)

I'm sure if you were using weasel words you'd say that ;) MEspringal 02:15, 12 June 2007 (UTC)

Resolving the CBT/exercise user debate

While the studies on CBT and graded exercise seem to show that these can help *some* people with CFS, if the article is going to mention those studies I think specific statistics and more careful wording should be used to give a more accurate impression about their efficacy. Someone mentioned above that "CBT only results in significant improvement in between 27% and 50% of patients, depending on the study" - statements like this should be included in the article; and perhaps the users who are skeptical about the studies are uncomfortable with the current wording, as saying "effective treatments" without included statistics is too vague when assuming its specific effectiveness.

I think this disagreement can be eventually resolved; and while I personally tend to be extra critical about any claims of efficacy with CBT and graded exercise in the severely affected, I believe these studies have their rightful place in this article as long as statistics are included and the wording is contextually careful (without any strong conclusions being drawn until more studies are completed).

I also re-read the recently referenced review published in the Journal of the Royal Society of Medicine and found that the following important points should be included with any attempts to re-write the CBT-exercise subsections, but I have listed them here for now as suggestions and I may add them myself later on:

(1) no intervention had been proved to be effective in restoring the ability to work ...

(2) no severely affected patients were included in the reviewed studies of graded exercise therapy ...

(3) more research is needed on severely affected patients in general - especially since many clinical studies require patients to attend a clinic, which may bias the results towards those with less severe symptoms (a trial that gives access to severely affected patients is underway and should be finished by 2008) - the review also states that "surveys by patient organizations highlight the fact that those with the worst symptoms often receive the least support from health and social services", further adding to possible bias ...

(4) more research is needed on the adverse affects of treatments (they may be under reported or poorly quantified), although immunological treatments often had obvious adverse side effects.

Tekaphor 06:48, 21 February 2007 (UTC)

Thank you for your sensible comments, Tekaphor.

I have not been sitting still on this issue, and will have a detailed response to Sciencewatcher's comments and claims soon. But for now, my basic position is that for ME/CFS patients

1) CBT is not even remotely curative, especially of physical symptoms, on either a theoretical or an empirical basis. At best it is a very modest, generic, supportive therapy that may help some patients cope better with their situation, but which does not in any way improve the main underlying problem, and

2) that graded exercise therapy (GET) is not remotely the same as 'activity management' or 'pacing'; and that GET, particularly inflexibly graduated, sustained aerobic exercise, has very serious theoretical and empirical risks associated with it, and is fundamentally inappropriate and unsafe for ME/CFS, (though it may be of some value for the separate and unrelated diagnostic category of 'chronic fatigue'), and

3) the patient selection criteria (and also outcomes assessment criteria) MUST be taken into account when judging the relevance, reliability and generalisability of any particular research results.

Bye for now.

Bricker 13:10, 21 February 2007 (UTC)

In response to Bricker's comment that "CBT is not even remotely curative, especially of physical symptoms, on either a theoretical or an empirical basis" - this is untrue. Read some case studies and you will see that CBT does cure people, including physical symptoms. On a theoretical note: if the symptoms are caused by stress (which is a known trigger in most patients) and CBT helps the patient to resolve those stresses, then theoretically CBT can cure the physical symptoms.

As always, the debate is not really about the science or the facts, but rather whether people like or don't like a psychiatric explanation for the illness.

I don't have the time or ability myself to rewrite the CBT article to most people's satisfaction, so if anyone else wants to do it, feel free. I'll just tidy up some things.

--Sciencewatcher 23:02, 21 February 2007 (UTC)

Poor attention to syntax, together with what appears to be poor grasp of terms and a lack of understanding seems to be behind this debate, since in science the meaning and use of words are all important. Alternative is used when there is a choice between two things (or states), either of which can be chosen but not both. Therefore, alternative view is not appropriate here as there are accepted differences in exercise tolerance between some of the different diagnostic classifications and in some it is not even considered (don't mix up classes!). Second, scientific facts and the results of studies or trials must not be confused as being one of the same thing, so requests to 'stick to the facts' are misdirections. The fault in part must lay with some health institutions that have regressed to mindless repeating this sort of promotional rhetoric coming out of the health industry and so in their turn – go on to confuse the public. I think others have already covered everything else but I fear whilst such confusion about the basics exists, it will be pointless to elucidate. However, in view of the reason given for last edit, then might I suggest: the article on Parachute needs a certain editor's immediate attention as there is no scientific evidence that they work and so the article must be made to reflect this grave omission -and who better to do it. See British Medical Journal http://www.bmj.com/cgi/content/full/327/7429/1459.--Aspro 00:44, 22 February 2007 (UTC)

I just want to add one point to what Aspro said, regarding diagnostic criteria for CFS. Just because one definition of CFS does not require a certain symptom does not mean that patients selected by that criteria do not have that particular symptom. It is a common belief that the patients selected by the Oxford criteria are mostly psychiatric patients, while those selected by the Fukuda or Canadian definitions are suffering from a different, organic disease, but there is no evidence for this. The Fukuda definition's requirement of 4 out of 8 symptoms is unnecessarily restrictive and means that many CFS patients are ruled out by it for no good reason.

Also, were you talking about my last edit, Aspro? There is good reason to believe that a paracute works because of theory. However there is no good reason to believe that CBT can cause damage. In fact, it is hard to imagine how a therapy, which involves the patient talking to a therapist, could cause damage. That, together with a lack of evidence showing damage, is a good reason to believe that CBT does not cause damage. That is the reason why I removed that comment. --Sciencewatcher 15:43, 22 February 2007 (UTC)

I haven't been following the debate, but Sciencewatcher, here you are wrong. "There is no good reason to believe that CBT doesn't cause damage" - this is your opinion - those sufferers in the so-called "25% percent group" of severely affected patients are severely affected by ANY effort - this includes speech and can have post exertional malaise affects for days after such a session. To these patients, CBT would not be merely ineffective but damaging. However, you are right in saying there is no evidence, sources are needed. Thedreamdied 15:58, 22 February 2007 (UTC)

-

I agree with Bricker about the potential risks - hopefully some new studies will quantify them. Thedreamdied makes a good point, that there is at least a good reason for some people with CFS to be cautious about CBT - this probably applies even more for exercise approaches. While Sciencewatcher is right by saying that just because one definition of CFS doesn't require a specific symptom it doesn't automatically mean the selected patients using that criteria don't have that specific symptom, it also doesn't automatically include them and I disagree with SW that the Fukuda definition is unnecessarily restrictive (it would help more if the medical profession agreed on definite subcategories of CFS).

We should all be able to agree that CBT and/or GET seems at least partially effective in some people with CFS; although we are still debating the wording to be used in the article and the relevance for people with the Canadian definition for CFS (which puts more requisite emphasis on post-exertional malaise), right? The statistical phrasing of 'significant improvement' usually means an improvement that is noticable, it doesn't mean cure and shouldn't be presented as such. I'm not currently aware of any treatments that showed a significant number of cured participants in properly conducted studies/trials that use the Canadian definition for CFS. One small study referenced in the article (click here for the abstract) done with 9 to 17 year olds showed a 'complete resolution' of CFS in 43% of the participants in a 'rehabilitation program' (graded activities/exercise programme & family sessions). However, despite most (62%) of the participants being described as having 'severe CFS' (determined by either or both a wellness score and school attendance of <50%), the study used the CDC/Fukuda definition of CFS.

As for the effectiveness of CBT and/or GET in adults, it is to the credit of these therapies that the recent review published in the Journal of the Royal Society of Medicine showed them to be the only treatments offering positive effects for CFS patients, but even the authors carefully stressed the need for more studies and better conducted trials. The actual statement of principal findings regarding CBT/GET was: *A number of RCTs suggest that behavioural interventions, including elements of CBT, GET and rehabilitation, may reduce symptoms and improve physical functioning of people with CFS/ME*. So, can the fans of these therapies at least concede that they are not cures, that they usually only help the minority gain some improvement, and that more studies are needed on severely affected patients who distinctly have the Canadian definition of CFS regarding severe post-exertional malaise?

Even if there are individual cases where the patient attributes their recovery to CBT and/or GET, many other patients have similarly attributed their recovery to all sorts of supposed cures (most of which are shamelessly promoted over the internet). Obviously this is why randomised controlled trials are used to determine the objective efficacy of treatments, and individual case studies may be noteworthy but should not be casually presented as highly relevant to the majority or even a significant minority. Many CFS patients are probably skeptical about treatments or claimed cures because they have tried a wide range of them and found them to be ineffective. I'm guessing that some of these people are fellow wikipedia users here who could probably cite their own 'individual cases' of failed treatments, including CBT and/or GET, and these examples wouldn't be any less valid than testimonies of supposed cures.

Tekaphor 03:25, 23 February 2007 (UTC)

Tekaphor: you seem to have a pretty good overview of the situation, so you might want to have a go at updating the article. We really need to merge the "alternative view" into the main article at the very least. --Sciencewatcher 19:13, 23 February 2007 (UTC)

-

Thanks Sciencewatcher, I agree that it should be merged, but as Thedreamdied openly warned you it has taken me more effort than I initially anticipated. Today I performed several phased edits, which I have been working on offline over the last several days. Hopefully it will be agreed upon and/or improved by all the concerned parties here, and I have tried to merge all the previously relevant text without altering it too much.

I also liked Thedreamdied's suggestion of splitting the article up and getting rid of the big table. I think only one additional page is needed, 'CFS Proposed Etiologies', as this the largest section. Also, the huge entry on the Ampligen treatment has been reduced as it seemed to have been just copied and pasted from a news press that could be referenced to instead of further bloating the article.

Most of the references I used are from acceptable news sites but someone (if not me later) may want to hunt down more official source URL's. When we finally settle the CBT/GET debate I suggest that we move most of the 'proposed etiologies and corresponding treatments' text to a new page.

Tekaphor 16:33, 24 February 2007 (UTC)

I'm glad we're finally making some progress here. Good edit, Tekaphor. Thedreamdied 20:52, 24 February 2007 (UTC)

Me too, thanks Thedreamdied. Tekaphor 03:14, 27 February 2007 (UTC)

It's better, but I think it still needs a bit more work. Here are my observations:

You talk about the "above mentioned systematic review", but I don't see it anywhere, and I don't see any overview of the research into CBT or any comments that it is one of two treatments that has been shown to be effective in clinical trials. Also, you talk at the start about CBT being used for managing the illness, while later you say "This approach aims at active rehabilitation rather than just adapting to the illness" but it isn't clear that you are talking about a different approach.

Also there are a few unsupported statements such as "it is difficult to see how changing one's schemas, as CBT theory contends, would effect improvement in these serious pathological symptoms" and "it seems to be most effective in those with less severe forms but much less effective in the severely affected". As far as I can tell these are two statements are based on personal opinion, and they should probably be removed unless there is any evidence.

--Sciencewatcher 17:26, 26 February 2007 (UTC)

Hi Sciencewatcher ... to address your raised points:

• (missing "above mentioned systematic review" etc) ← its already there, do a page search for "An updated systematic review which was published in the Journal of the Royal Society of Medicine" and you will see it above, with the mention of CBT/GET being the only two known effective treatments - the introduction to CBT/GET was just before the subsections devoted to them, but I just made an edit to give CBT/GET a more obvious division, with a main title and two subtitles.
• (the text about managing the illness vs active rehabilitation etc) ← I didn't write those, I included them from the previous text so perhaps this subsection needs more work, but for now I reworded "This approach aims" to "Some approaches aim".
• (about schemas) ← I didn't write that either, it was another inclusion, so for now I reworded "difficult to see" to "uncertain".
• (the "unsupported statements") ← they are from the Gibson Report (also mentioned above in the introduction) and should remain.

I also moved the 'other findings' list to the beginning of the section because they are more about etiology than treatment. Hope the above helps fine tune our efforts towards a resolution - Tekaphor 04:37, 27 February 2007 (UTC)

Tekaphor - I completely missed the "CBT and Graded Exercise" section above CBT. Now that I read it, it all makes sense. You've done a good job of tidying up this section, thanks. I might just edit it to add a comment explaining how CBT could help the pathological symptoms. --Sciencewatcher 23:16, 27 February 2007 (UTC)

Thanks Sciencewatcher. For further research you might be interested in this quote from the Gibson Report about the opinion of one of the people who contributed to it: "Prof Chalder suggested that CBT has a biological effect on the body." - Tekaphor 08:17, 28 February 2007 (UTC)

Hi Everybody, I just wanted to drop in to present you all with a quote from the CDC's Toolkit that my be used to reign in "Sciencewatcher"'s frantic claims about patients not accepting that it might be psychiatric/psychological/psychosomatic: "After more than 3,000 research studies, there is now abundant scientific evidence that CFS is a real physiological illness." Link: http://www.cdc.gov/cfs/pdf/Basic_Overview.pdf 192.68.211.173 18:36, 26 February 2007 (UTC)

It is interesting to see that the discussion is still very much on the "prove it" level. I have no idea why the CDC is claiming "3000 papers" to prove a physiological basis in the pdf that you referenced. Extraordinary claims require extraordinary proof - can anyone supply ONE convincing paper? — Preceding unsigned comment added by 84.72.176.123 (talk • contribs)

192.68.211.173: the CDC also say that people with CFS might be genetically predisposed to not handling stress very well (which I don't quite agree with), and research shows that stress is a trigger for the majority of CFS patients. Stress will cause physiological symptoms and is a real illness, but the basis is psychosomatic. There is no research disproving a psychosomatic basis for the illness, but quite a lot pointing towards it. PS I don't see how my claims are "frantic". I'm just pointing out what you will see in any discussion forum. Any mention of psychosomatic causes of CFS brings instant hostility and foaming at the mouth, and objective facts go out the window. --Sciencewatcher 23:02, 27 February 2007 (UTC)

@84.72.176.123: You can have 3000, just search medline. However you can claim for all eternity "Well, yes, but I AM not convinced. It could still be all in the head!" We are a free society, knock yourself out.

"Sciencewatcher":Wether or not you agree is of no matter. Research also shows that it's triggered by an apparent infection. There is no disproving psychsomatic illnes that's right. There is also no prove for it, at least not in CFS and I doubt anywhere else. And for me it's totally understandable that patients are foaming after having been denied treatment and research for about 20 years thanks to people like you. — Preceding unsigned comment added by 192.68.211.173 (talk • contribs)

Resolving the 'psychosomatic' issue

The CBT/GET issue seems mostly resolved, but I would like to comment on the associated 'psychosomatic' issue since it is still causing agitation on the talk page.

It is totally understandable why some people with CFS have a strong resistance towards the word "psychosomatic", when for so long it has been commonly associated with accusations of being 'just in the mind' or 'not real', plus its likely they have received such bias from others in the course of their illness. Also, its no surprise that the mind-body split currently affects the medical profession regarding poorly understood illnesses like CFS when it still troubles philosophers and scientists after many centuries of advancements. Personally, I think there is a very wide and complex 'grey area' between the traditionally classed 'physiological' and 'psychological' aspects which remains to be understood.

On a more subtle note, 'psychosomatic causes' should be emphasised as being different to 'psychosomatic illnesses'; in other words, even if psychosomatic causes (i.e. stress) contribute to CFS, it doesn’t automatically mean the illness itself is psychosomatic. A good example of this is how multiple sclerosis was once viewed as being just psychosomatic but is now commonly accepted as physiological, and yet a large study in Denmark found that parents who had lost a child unexpectedly were 50% more likely to develop MS than parents who had not[1], suggesting that psychosomatic causes also influence the development of MS but obviously don't necessarily make it a psychosomatic illness.

I think the studies on genetics and stress are major breakthroughs; with these aspects likely being interrelated in the development of CFS. If people have an inherently different ability to handle stress, it makes sense that genetics are proposed as a factor. Its also interesting that 'psychological problems' don't seem to be a factor in the development of CFS[2] (and perhaps neither its prognosis?), yet a 'stressful childhood' can greatly increase the likelihood of acquiring it.[3] Perhaps some of the same people who reported a stressful childhood were also more likely to report one because they were inherently/genetically more 'sensitive to stress' than others, further suggesting a predisposition.

Conclusion: if stress remains the only identified 'psychosomatic aspect' associated with acquiring CFS, the article should stick to the term "stress" rather than flame agitation with the term "psychosomatic".

Tekaphor 09:27, 28 February 2007 (UTC)

I haven't checked the exact dates but I have read that homosexuality was removed from the DSM and that CFS was added at about the same time, approx 20 years ago. The idea was that no substantial progress was being made and that perhaps acceptance was the best bet. That was also the subject of protracted debate about causality. The fact that CFS patients appear to want medical care is the principle reason that the disorder was added to the DSM. I see a lot of overlap in the two conditions; what does anyone think? I am trying to say that we have a variant here of the nature vs nurture debate, or indeed any disagreement when entrenched views develop and that we should concentrate on hard facts?

--Onlooker 10:19, 28 February 2007 (UTC)

As far as I am aware, ME/CFS isn't in the DSM, and I doubt adding it would be beneficial. - Tekaphor 05:25, 24 March 2007 (UTC)

Something to do

Since there's been a lot of activity here recently, maybe someone can spend their energy sorting out the 'etiology' section. If you think about it, virtually none of the sections (eg malnutrition, underactive thyroid, allergies) are actually etiologies of CFS at all - they are illnesses that have similar symptons, which are not relevant at all to this article, except in a "CFS can be confused with..." section. I would remove them all now but I just wanted to make sure someone agrees with me? Thedreamdied 15:25, 28 February 2007 (UTC)

Good point! Yeah, remove the descriptions and just leave a list titled "other etiologies confused with CFS" or something. - Tekaphor 16:27, 28 February 2007 (UTC)

Steady on. The conditions and the accompanying explanations listed under etiology should go back under the Diagnosis section, as they are needed if readers are to make sense of Diagnosis of exclusion in the way that they considered and discounted in CFS. It is important to make clear as well (in the diagnosis section) that having one condition in the exclusion list does not necessarily exclude the possibility of suffering from a second fatiguing condition concurrently. These condition are I agree serve no meaningful purpose where they are at present but to remove them is misguided. It might be time to print the article out and take some time to look at the whole picture again, rather than continuously doing lots of little edits (end up with a mince meat of an article). For instance just having a list of Tests is not very informative to the reader. It might be better to have them reinserted where they would be called for during the process of elimination (I don't what to generalize here but tests are better for showing what you probably haven't got, rather than proving what you have). --Aspro 17:58, 28 February 2007 (UTC)

Thanks for the support Tekaphor. Aspro, I'm not sure I clearly understand what you're saying. My interpretation is that, for example, a mini-article on dysautomnia, what causes it, and how to treat it, is totally irrelevant to Chronic Fatigue Syndrome. At best, it should be mentioned that "Chronic Fatigue Syndrome has many symptons similar to other diseases and conditions, such as dysautomnia, impaired thyroid function, x, y and z". We don't need to explain these conditions, that should be done on the relevant article's page. Thedreamdied 19:52, 28 February 2007 (UTC)

Only have time right now for a brief reply in two parts:

(Maybe the question we should be asking ourselves is how do we stop this article growing into a book.)

I looked back to see if the originator left any clue as to why he added this section on etiologies.

At this point [4] there was an introduction to this section and the info itself was in a table --which was easier to scan and take in. It contains information that is not necessarily present in the main article on these other conditions. If we take your example about the thyroid: Some people with CFS experience very much 'transitory' ( two weeks at a time) thyroid like symptoms but these don't seem to be a problem with the thyroid per se and are best ignored ( Primum non nocere). In such a case it would be wrong to consider it a thyroid problem. Yet the 'symptoms' can be so powerful that it can convince the person that they have hypo/hyperthyroidism. (Not to be confused with the medical student disease because there, the symptoms develop after reading about it and not before) So I think that part on hormones does a useful job that would not be well served by the respective main articles on these hormones. Same goes for the others listed; which is why, I suppose, they were added.

Second part:

What first caught my eye, when I first looked at your suggestion, was your comment that it might be called "other etiologies confused with CFS" The reader that comes to this page may have had several tests and been asked a lot of questions that clearly indicate which conditions their GP is considering. Do you think the GP will thank you if that sort of phasing gives the impression that she is confused and doesn't know what she is doing, or is ignoring the suggestion that it is ME etc? If the patients financial and family situation is under strain the emotions can (and do!) run high and Dr/Patient relationship can suffer. This section gives some indication as to why it is not a quick diagnostic process (equally, it might be something more serious and even perhaps, readily treatable). You've given me the impression -rightly or wrongly- that you want to delete what you don't appreciate or perhaps understand properly -that is all. I don't know if that helps you to see where my concerns are coming from. You'll be relieved to read, I'll may have to leave it to you from here on, as I've too many other things coming up. --Aspro 19:21, 1 March 2007 (UTC)

Aspro makes a good point, at least in that the descriptive list of other proposed etiologies/treatments is relevant to the exclusionary diagnosis process. However rather than reinserting all of it into the diagnosis section, perhaps it could be given its own page with a summary and link left on the main page. Although its already mostly covered at the beginning of the diagnosis section, perhaps more details could be included about how the process can be long or confusing for the patient, using Aspro's thyroid example. As for the "confusion" part; obviously it would be the patients who experience the most confusion and frustration, but to aid the doctors' position, the phrase "other etiologies confused with CFS" could be changed to "other etiologies to rule out". - Tekaphor 01:15, 2 March 2007 (UTC)

How about this division: (1) proposed etiologies, (2) etiologies to rule out. The proposed etiologies (eg stress and genetics) should be based on research and remain on the main page, while the descriptive list of other known illnesses with similar symptoms to rule out could have its own page (since its a big list). - Tekaphor 03:27, 9 March 2007 (UTC)

I agree 100%. Thedreamdied 13:49, 9 March 2007 (UTC)

www.me-cfs-treatment.com

I revoked jdwolff's change. First, if you actually look at the site you will see that Dr Smith has done peer-reviewed research (PMID 14500310). Also, considering that Dr Smith is a former medical advisor to the ME Association and he has done considerable research into CFS as well as treated a large number of patients, I cannot see how you could term him an unreliable source. Also, regarding jdwolff's disparaging comment about using antidepressants and children: Dr Smith's peer-reviewed study showed that 83% of the patients believed that the antidepressants helped them. There was no placebo control, so we don't know if the antidepressants had any actual effect, but it seems that they didn't make things worse. --Sciencewatcher 22:29, 28 February 2007 (UTC)

So can't we cite his peer-reviewed work rather than using his website as a reference? And are you comfortable with the absence of a control group? Do you think this is a medically useful trial? JFW | T@lk 23:25, 28 February 2007 (UTC)

The reason I cited the website is because of his theory about the causes of CFS, not because of this trial. But if you want to discuss the clinical trial, I do think it was useful because it found that "Return to normal health or significant overall improvement was reported by 29/36 subjects". The study shows that the programme was useful, but the lack of controls means we don't know which parts of the programme were actually effective. --Sciencewatcher 16:48, 1 March 2007 (UTC)

Important factor about the study: ...

Sciencewatcher, you present Dr Smith's study as being successful at treating children CFS patients with antidepressants, right? However from what I can tell, most of the participants were also undergoing a physical and mental rehabilitation program. This is an important factor to consider because one of the other successful studies with children[5] also involved a physical and mental rehabilitation program (but without antidepressants) and both these studies had a similar success rate! Without controls in Dr Smith's study the role of antidepressants becomes even more questionable, and while most participants in his study believed the antidepressants were helpful, a similar number also believed the physical/mental rehabilitation was helpful; an interesting coincidence? To its credit, this study does further suggest rehabilitation can be quite effective in some children with CFS, but it doesn't seem specifically suggestive of success with antidepressants when compared with the other study I mentioned previously (and with what we can infer from the general success of CBT/GET related treatments in adults). Even if there is a study that demonstrates a higher success rate with antidepressants with rehabilitation, compared with rehabilitation alone, obviously it would be due to a mild drug enhancement of an already successful rehabilitiation program rather than a strong case for antidepressants.

As a side note: I find it interesting that despite the high success rate, 1/3 of the students still failed their classes; because this reminds me of the review which found no intervention had been proved to be effective in restoring the ability to work, and I think the ability to study or work is a very practical measuring tool of treatment effectiveness.

Tekaphor 01:56, 2 March 2007 (UTC)

Dr Smith's explanation: ...

He suggests that CFS is "almost invariably associated with long standing negatively directed pre-morbid stressor factors" and includes both physiological and psychological stresses (with more emphasis on the latter). This explanation doesn't seem significantly different from the general findings of some studies that stress increases the likelihood of acquiring CFS. He also states that a previous mood disorder is commonly associated with developing CFS, but personally I wonder if those mood disorders were the first symptom to manifest before the deeper etiology 'snowballed' into CFS after the mood disorder increased the stress load on the predisposed. Afterall, many people experience a mood disorder in their lives but the vast majority of them don't develop CFS, so how can "negative stress" be the sole etiology? I do find his explanations interesting and even agree with most of it, but psychosomatics seem to be a trigger or co-factor, not the CFS etiology. - Tekaphor 02:32, 2 March 2007 (UTC)

"Sciencewatcher, you present Dr Smith's study as being successful at treating children CFS patients with antidepressants, right?". No, incorrect. I didn't present his study as being successful at treating children with antidepressants. I just pointed out that the antidepressants didn't have a negative effect, as jfdwolff implied in his edit comment. I agree with you that the rehabilitation programme was probably the most important factor. Regarding Dr Smith's theories, if you look at the "trigger factors" section of his website he gives more detail. He says that CFS is caused by multiple negative stressors over a long period of time, which I think is the critical factor. In my view this, combined with factors such as genetics and mental attitude, is what causes CFS. Again, the reason I cited his website is because it is the one which I think has the best explanation of how therapies such as CBT could cure CFS. --Sciencewatcher 15:56, 2 March 2007 (UTC)

OK on the antidepressants issue. So it seems well tolerated in children but not particularly effective. Anyway, I did view his explanations, thats why I already wrote a paragraph about it above. If a large study of more than 16 000 people over 30 years couldn't find "psychological problems" to be a factor in developing CFS, and the majority of people who experience constant negative stress or mood disorders in their lives never develop CFS; this clearly suggests another factor that distinguishes those who end up developing CFS from those who don't. Earlier on the talk page you said you disagree with the CDC that genetics can predispose people to a reduced ability to handle stress, but above you said genetics is a factor; so are you conceding genetic disposition or are you viewing genetics as a factor only when CFS has developed? Dr Smith's opinion makes some sense and is supposedly based from his experience with reviewing CFS; but unless there are related studies to reference, other wiki users might have a problem mentioning the website. The Gibson Report states: "Prof Chalder suggested that CBT has a biological effect on the body." This is an opinion also worth mentioning if we are to mention Dr Smith's. Alternatively, Smith's hypothesis could be located in the "psychosomatic" subsection of the "proposed etiologies/treatments" section. - Tekaphor 05:52, 4 March 2007 (UTC)

Tekaphor: feel free to mention Chalder's comment. I didn't add it because I didn't find any references to back it up - it just seemed to be a comment made by her. But a lot of the other things in this article are comments or personal opinions, so there's probably no harm in adding it. Regarding my comment about genetics: I do think that some people are predisposed to CFS, but that doesn't mean that they are genetically predisposed to not handling stress well. There is a difference. I know many people who have recovered from CFS and can handle stress just like anyone else. It is the nature of the stressors and the mental attitude to them (along with a genetic predisposition) which seems to trigger CFS: a combination of multiple long-term negative stressors at the same time. --Sciencewatcher 23:14, 4 March 2007 (UTC)

Sciencewatcher, I tend to agree that it may involve a combination of multiple long-term negative stressors, although I am interested in an elaboration about the "mental attitude" aspect. - Tekaphor 00:24, 6 March 2007 (UTC)

Tekaphor, the difficulty with research into the effect of mental attitude on CFS is differentiating what is a factor in causing the illness and what is a symptom of the illness itself. From what I have seen, anger is a major factor in causing CFS. This isn't surprising, as anger causes significant activation of the HPA axis. There is also research showing that CFS patients tend to be "Defensive High Anxious" (PMID 11595249). I also think that the attitude to the stress is important: whether or not there appears to be a benefit to continuing with the stressful activity. To give an example: living in a poor country and struggling to find food to eat would seem to be a major stressor, but it doesn't appear to cause CFS, whereas working in a high pressure job might seem less of a stressor, but does cause CFS. The difference is that basic survival goals are programmed into the brain, whereas working to earn more money to keep up with the ratrace is a more abstract goal. My own theory is that CFS is a protection mechamism against unnecessary long-term stress. The people who don't have this protection mechanism tend to die of heart attacks when under long-term stress, so it is clearly a survival advantage. --Sciencewatcher 15:44, 6 March 2007 (UTC)

You are right that its difficult to distinguish between cause and symptom; I still suspect they are interactive. What you said about anger and "defensive high anxiety" is interesting, although I would view CFS/ME as more of a system malfunction than a protective mechanism (even if it may act as such in some situations). - Tekaphor 03:19, 9 March 2007 (UTC)

References to the "Gibson Report"

There are a number of references to the "Gibson Report" throughout the CFS page. I would question the basis upon which this report is being cited as a reliable source. Additionally the title of the group as listed in [41] and elsewhere is incorrect.

The group which published the "Gibson Report" has been referenced as "The Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis". This is incorrect. The "Gibson Report" was published by a group set up and chaired by Dr Ian Gibson, MP, which comprises three members of the House of Lords and a number of cross party MPs. This "inquiry" was not commissioned by Parliament nor any government department nor was the group which undertook to carry it out a Select Committee. The report does not have the authority of Parliament or any government department - it is an opinion piece. In December 2006, the Assistant Registrar of the Office of The Parliamentary Commissioner for Standards provided written confirmation that although the group is on the Register of All-Party Groups it is not on the "Approved List"; groups that are not on the Approved List are not allowed to use the terms 'All-Party', 'Associate' or 'Parliamentary' in their title; in parliamentary terms, all-party groups have no official status and are viewed as informal, their reports therefore have only the authority of those who produce them. In terms of status, the "Gibson Group" sits below that of an all-party group.

It would be incorrect, therefore, to refer to the "Gibson Inquiry" as a "Parliamentary Inquiry", to refer to the "Gibson Report" as a "Parliamentary Report" or to list the name of group which published this unofficial report as "The Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis". The correct title is: "The Group on Scientific Research into Myalgic Encephalomyelitis". Unfortunately, this unofficial inquiry has been misrepresented on the internet and in the press as being a "Parliamentary Inquiry". The report, which has been published in electronic format only by the group, themselves, is not published by Parliament or any government department. It contains a number of as yet unaddressed factual inaccuracies and ambiguities (some of which have already been reiterated by journalists) for which the UK national charities AfME, The ME Association and The 25% ME Group have requested rewrites. The report also omits the inquiry's Terms of Reference, a full list of Witnesses who provided oral evidence and a list of Submissions. I hope this will clarify any confusion as to the status of the "Gibson Inquiry" and the status of the report published by this group in November, 2006. It would be appropriate for the title of the group to be amended to "The Group on Scientific Research into Myalgic Encephalomyelitis" wherever it appears in the CFS article, in keeping with the requirements laid down by the Office of The Parliamentary Commissioner for Standards for all-party groups. It would also be appropriate to give some consideration as to whether this report can be reliably cited as an authoritative reference source. MEagenda Posted 3 March 2007

Thanks MEagenda for pointing out the "Parliamentry" mistake. I'm not sure who introduced the Gibson Report, but I must have missed the exact phrasing when I later expanded on it. The 25% ME Group's main issue with the status of CFS research is that it seems biased towards and promoted as psychiatric rather than neurological/biological, with funding being directed accordingly. On their website in the "25% ME GROUP Submission to Gibson"[6] they view both CBT and GET as not only just being unhelpful but also dangerous/harmful to many severely affected CFS patients, while the Gibson Report only uses the word "unhelpful", so I can see why they would want a rewrite (and this should be mentioned in the wiki article). So far I have only skimmed over the other group's responses, so I'm not sure if the Gibson Report remains qualified, obviously this is an issue for discussion. If it remains, something should be written about the related group responses. - Tekaphor 05:12, 4 March 2007 (UTC)

Thanks for amending the two references on the CFS article page to the name of the group which published the "Gibson Report".

As noted above, the report published by the "Group on Scientific Research into Myalgic Encephalomyelitis" (aka the "Gibson Group" and the "GSRME") does not include the inquiry panel's Terms of Reference, nor a full list of Witnesses who presented oral evidence together with their specialities and the capacities in which they gave evidence and made presentations, nor does it append a list of Written Submissions. Some presenters of evidence, for example, paediatric ME specialist, Dr Nigel Speight, are not listed in the report at all, nor has any reference been made to their submissions. A lack of citations and references undermines the scientific credibility of the report, in general, and the sections covering ME in children, potential causes, and treatments, in particular. This makes it very difficult for the reader to refer to evidence on which the panel has based statements made within the report or on which it has formed its own views and opinions or for the reader to establish precisely what evidence, papers, reports, books and other material the GSRME evaluated throughout the process of this "inquiry" or obtained for itself in order that its panel members might fully inform themselves of the issues surrounding ME. The status of the group that undertook the "inquiry" and hence the status of the "inquiry", itself, has not been defined within the report - another omission.

Whilst some aspects of the "Gibson Report" have been welcomed by ME charities and patient organisations and by the ME patient community, the GSRME has received criticism about the way in which this unofficial inquiry has been administered since the project was first initiated, about the content of the report, itself, and for its political worth. It has also been questioned by the ME patient community whether, in undertaking to evaluate scientific evidence with limited resources in terms of financial and administrative support and with no dedicated research staff assigned to the project, in becoming prescriptive in the section on treatments, in pronouncing on the prevalence of ME in children and on the prevalence of MSBP in association with various age ranges (and thereby giving legitimacy to the unproven and very shaky construct of MSBP), that this group of parliamentarians had, in some areas, exceeded the scope of the project they had taken upon themselves, whilst failing to scrutinise other areas which might have been considered to have been within their remit. But this entire "Gibson Inquiry" project has been dogged by a lack of consultation on the part of Dr Gibson with the ME community as to what precisely the scope of this inquiry should have been. [For those unaware of the background, the original intention of Dr Gibson was that a high level and properly resourced inquiry with a panel of experts should be instigated. When Dr Gibson failed to secure an inquiry at this level, within his self-imposed time-frame, he set up his own group, canvassed for panel members and chaired this inquiry committee, himself, with no funding and very little administrative support.]

The lack of scientific rigour evident in some sections of the report was raised at a public meeting with the GSRME in February, 2007. The Countess of Mar (GSRME panel member) responded: "The other thing is that quite a lot of the criticism that I've seen has been for the fact we got the science wrong. This was never, ever, ever a scientific inquiry - it was a political inquiry into the science. So please don't think that we're scientists trying to put out a duff scientific report - we're not. It's got nothing to do with technical science as far as we're concerned..." [Quote from: Transcript of extracts from audio of public meeting, 6 February 2007]

On 27 November 2006, The UK national ME charity AfME published a response to the "Gibson Report" Review of Gibson Inquiry Report in which they called on the GSRME for a reconsideration of the section on children and teenagers with specific reference to the potentially damaging implications for families resulting from ambiguities and misconceptions in the text of this section, as it currently stands.

On 7 February 2007, the UK national ME charity the ME Association published a summary of their key points of concern raised with the GSRME in writing and at the public meeting Key points raised by The ME Association and Transcript of extracts from audio of public meeting, 6 February 2007 in which concerns were also raised about the section on ME in children and teenagers and calling for a rewrite of this section. But the ME Association also raised concerns regarding the omission from the report of a full list of Witnesses; the group's evaluation of the evidence provided by Dr Byron Hyde in relation to MRI, PET and SPECT scans; the group's evaluation of a possible link between vaccinations and ME, and in relation to factual inaccuracies in the section of the report relating to benefit entitlements (which have since been reiterated in the press) and for which the ME Association is calling on the GSRME for corrections to be made.

At the public meeting in February, a representative for the 25% ME Group also raised concerns about statements made by the GSRME in the section on potential causal link with vaccinations and also called for a reconsideration of the section on children and teenagers. [Transcript of extracts from audio of public meeting, 6 February 2007]

In addition to factual inaccuracies, ambiguities, omissions and lack of references in support of statements made within the report, there are also contradictions. A good example of this is the GSRME's apparent recognition of the shortcomings of some research criteria, including the Oxford Criteria, on the one hand, and their interest in the results of CBT studies carried out by Professor Trudie Chalder, whose studies are not based on subject groups selected through rigorous research criteria (cf the Canadian Criteria), on the other. Dr Gibson is also on record as having said that the group did not want to get involved with "anecdotal evidence" and yet the report includes a statement attributed to Prof. Trudie Chalder in which she is said to have "suggested" that CBT has a biological effect on the body but for which no citations which might support Prof. Chalder's "suggestion" have been given. The report also lists "pacing" as a "psychosocial therapy" along with CBT and GET - yet another point of concern raised by the ME Association with the GSRME with a request for revision.

The report underwent no review process prior to being submitted (complete with errors, omissions and ambiguities) to the NICE consultation process or before it was published and sent to the press, to all UK MPs, some government ministers, the CMO, Colin Blakemore of the MRC (Medical Research Council) and to selected others.

There isn't room, in these Talk pages, to provide a comprehensive critique of the report, from either a scientific or a political view point (perhaps this would not, in any case, be the place to do so) but critical analyses and deconstructions have been published by the ME patient community. Unless or until the GSRME has addressed the points of concern raised by the ME charities, patient organisations and the ME patient community, which include but are not restricted to those mentioned above, I would advise that caution needs to be exercised over whether this unofficial report can be cited as a reliable source of reference.

The following document: The One Click Group Report: The Gibson Inquiry has been informed by and compiled following consultation with the ME patient community and provides an overview of the background to this "inquiry", comment on the political implications and critical analysis of the content. MEagenda 12:58, 4 March 2007 (UTC)

Thanks for the extra information, I made an edit to mention this criticism. I was working on another edit to expand the 25% ME Group's position on the harmfulness of CBT/GET, but the preview seems to be malfunctioning so I will try again tomorrow. I haven't (yet) removed/edited the other specific references to the Gibson Report, but I think the report should at least remain "introduced" (simply because its relatively well known and the subject of debate). - Tekaphor 15:52, 5 March 2007 (UTC)

I think the Gibson Report is worthy of its own page, since it so often referenced in this article. I don't have any prior knowledge of the Gibson Report so I'm not inclined to create the page myself. —The preceding unsigned comment was added by 67.82.232.151 (talk) 04:13, 15 April 2007 (UTC).

It should be noted that on 18 May 2007, the GSRME issued a public statement announcing that this unofficial group of parliamentarians had already disbanded. Three members of the committee had been unwilling to continue with the project, or to attend further meetings to discuss the consideration of amendments to the Report following calls for revisions by national ME charities, campaigning groups and individuals. This Statement and Minutes of the dissolution meeting can be read on the official Gibson website. Ann Cryer, MP, Secretary to the committee, had resigned immediately following electronic publication of the Report, in November 2006. Five members of this unofficial committee had, apparently, been willing to discuss (limited) revisions to correct factual inaccuracies and address omissions, misconceptions, contradictions and ambiguities within the document, for example, potentially damaging comments in relation to ME in children and to MSBP (FII) in the section on Teenagers and Children, and inaccuracies in the section on Benefits. However, since the group has already been dissolved, following the resignation of a further three members of the committee, this document cannot undergo revision and will not now be amended. It is of considerable concern that in some quarters this unofficial "inquiry" was being promoted as a "Parliamentary Inquiry". It needs to be understood that the "inquiry" was not commissioned, nor was it carried out by Select Committee and it does not have the authority of Parliament or any government department. Since there are no lines of accountability due to the unofficial nature of the Report and due to the unofficial status of the committee that undertook this "inquiry", at the behest of Dr Ian Gibson MP, this uncorrected and largely unreferenced document - essentially an opinion piece - remains flawed and unfit for purpose. Which is why I have questioned on what basis this document, per se, is considered to be a reliable source of reference. If the commentator above has not already done so, I suggest they familarise themselves with this document - it is less than thirty pages long, and a very "light" read and that they download a copy of the full "Gibson Report" and do not rely on "summaries". MEagenda 09:24, 25 May 2007 (UTC)

"Flavours" of ME - or are there many misdiagnosed cases?

First off, I must say I'm somewhat sceptical about ME. Just being honest. However, for the purpose of this post, I'm assuming ME is a very real syndrome. This is no attempt at trolling, I would just like to hear the opinions of a spectrum of those diagnosed with ME and this seems to be the best place to start.

Now, in the last 10 years I've known 4 people who suffered from ME. One of them would try very hard just to do the normal things, and would get stuff done. Never really mentioned he had it.

However, the other 3 of these people mention it daily and only have the energy for things they want to do e.g. skip work "because I'm too fatigued!" but then comes clubbing later. Or goes out drinking until 3am on a work night but then blames ME when they can't get to work the next morning.

Also, I notice that the discussion page here has the longest discussion posts I've ever seen! For me, one who doesn't have ME, it would take me a lot of time and effort to write many of these posts... I'm not trolling, it's an observation.

So, is it that there are two "flavours" of ME, where one is full-time fatigue in all things, and the other is a general apathy (thus plenty of energy for fun things). Or, is it that there are people who are misdiagnosed as having ME because the doctor can't diagnose them as "doesn't like doing boring things much".

Many thanks in advance. —The preceding unsigned comment was added by 81.86.138.193 (talk) 23:55, 7 March 2007 (UTC).

ME and ICD CFS are indexed at WHO ICD G93.3 See: WHO Classification You will find that many ME sufferers in the UK and elsewhere prefer the use of the term "Myalgic Encephalomyeltis" to "CFS". ME is a serious neurological illness. Some specialists in the UK prefer to use the term "CFS" for ME but this is felt by many sufferers not to adequately reflect the nature of the condition. Additionally, "Chronic Fatigue Syndrome" is a term which is also applied in some quarters to those who suffer only from fatigue (in some cases, fatigue and anxiety) and who do not present with neurological signs and symptoms (cf Oxford Criteria). Sometimes those suffering from chronic fatigue will erroneously ascribe their condition or self-diagnose as having "Chronic Fatigue Syndrome" or "ME" - and there lies the rub. Some patients have, indeed, been misdiagnosed, it is not unknown for those given an initial diagnosis of ME, ICD Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome to be later rediagnosed with MS, Lyme Disease, Hughes Syndrome, adrenal, thyroid or other conditions.

As as online support and information list owner, I come into contact with, and also carry out advocacy and representation work on behalf of, severely affected ME sufferers and carers of adults and children. Some are bedbound, some have problems with bowel and bladder control, some have children who have had to be tube fed. Some are only able to walk short distances perhaps once a week, others not at all, or not for weeks or months on end; some do not have the strength to change the sheets on their beds and require social services carers for personal care, shopping, household tasks. Some need be "lifted" at night and need overnight carers.

Do not assume that because some of the entries on the CFS Talk pages and the archived pages are lengthy, that those who have written these entries must have energy to spare. For some, especially those with cognitive impairment or pain in their hands/arms or ocular pain, that may be the only effort they will have been able to put out that day; others will have used voice recognition software to compose their comments in Word and will then have pasted them into the editing box; some ME sufferers need to use an amanuensis for corresponding with the agencies they have to deal with as they cannot sit up to use a keyboard.

Not all of those who leave comments on these pages will be ME sufferers themselves - some of us are carers of children and young people with ME. When my son first developed ME, his symptoms were so severe that he was initially referred for an MRI scan to rule out a brain tumour. He had 24/7 severe, intractable headache, could barely stand, lost the ability to write, to hold a pen, to copy diagrams, to process information and had severe hyperacusis. In some respects, in particular the cognitive impairment, his symptoms were similar to a stroke. Eight years later, he is still unable to tolerate the noise of domestic appliances, or even normal speaking voices, TV, music etc. and his quality of life is still very much compromised. The impact on his education has been significant. If you are genuinely interested in the problems that children and families still encounter when faced with living with this illness, have a look at the letters at: BMJ Online Letters. Incidently, there are also some responses, there, from "Supporters" of Dr David Smith and also responses from UK ME charities. I sincerely hope this will give you a better insight. MEagenda 14:05, 8 March 2007 (UTC)

Many thanks for that. As a bonus, the article makes more sense now I've read your post.

So it would seem quite likely that one or more of those I have known, diagnosed with ME, is misdiagnosed or self-diagnosed. It's apparent that those who are diagnosed with ME and then run about clubbing until 3am most nights probably don't have ME! Hypochondriacs/self-misdiagnosed people aren't really doing much to help anyone here, especially as there is no commonly accepted test for the condition.

-

In addition to what MEagenda said, I think there can be different levels of severity. Consider this example, taken from personal observations: Person A may have quite strong symptoms and also experience severe "post-exertion symptom exacerbation" (severe enough to be scared of any exercise despite a willingness to be active), and they may also experience sensitivity to drugs (therefore scared to drink any alcohol despite tolerating it in the past). Person B's symptoms may also be "idling" almost as strongly, but their post-exertion symptom exacerbation could be relatively mild in comparison to person A's (not severe enough to avoid exercise), and they may not have any apparent sensitivity to drugs yet (they can get drunk and may be inclined to do so to numb their symptoms, although their "partying ability" could be somewhat affected). Both people may experience significant hinderance in their lives, but person B at least has the ability to push themselves further, although doing so may be a constant battle which barely gets easier with practice and may even worsen the situation in the long term. Furthermore, person C may start out in person B's situation, but then; during the course of their illness and/or as a subsequent side-effect of attempting treatments and/or pushing themselves too hard, firmly and unexpectantly ends up in person A's situation. I am not defending the people who go clubbing regularly and then claim to have CFS/ME, but I hope this example highlights the possibility of different severities and the transitional "grey area" between them. - Tekaphor 02:39, 11 March 2007 (UTC)

To the person who asked for information from people who have ME/CFS or have direct contact with someone with this dreadful illness, I think I can help. My partner has this illness, and is disabled to the point where she is completely bed bound, and unable to feed herself (I care for her 24 hours a day). Her level of disability is not imposed by feeling fatigued, but by a myriad of other bizarre symptoms (If only this disease was just about feeling "fatigued"). Many people who are affected severely by this disease will not be able to contribute to this Wikipedia page, because using a computer, or staring at a computer screen can cause an accute worsening of their symptoms. My partner was finally diagnosed in January of this year (2007), by an ME/CS specialist (I can provide the name of the specialist if required), who said that she fulfilled all the criteria in both the CDC and Canadian definitions of this illness. Some of her symtpoms include, endocrine disturbance (dehydration, excessive urination), disturbed gut mobility (IBS like symptoms, recurring constipation and diahorrea, nausea, vomitting, which stop her from eating properly for weeks at a time), sleep disturbance (unrefreshing sleep, too much REM sleep, nightmares, waking after only a few hours sleep), pain (Headaches, burning neuropathic pain all over her body), autonomic problems (POTS, postural orthostatic tachycardia syndrome, small drop in blood pressure upon standing + increase of heart rate to over 120 bpm, is even affected when sitting in a chair), cognitive problems (poor concentration, forgetful, sensitiviy to light, sound, and moving images), post execise malaise (She is unable to manage even the most basic of exercise, as even small activities such as talking now do the same thing, and worsen her symptoms), and fatigue that has persisted for than 6 months (in my partner's case 18 months).

To "Sciencewatcher", please take your dogmatic comments elsewhere, you do not know what you are talking about, I can assure that my partner's life has not been destroyed due to poor patterns of thought, and if you don't believe this, I can provide her consultant's telephone number, and would also suggest you come and pay her a visit, and employ the various methods of psychobabble that have too long been forced upon sufferers of this terrible physcial illness, or failing that, look after her for an appreciable amount of time. Any anxiety she now feels is due to the duration, bewildering symtoms, and extreme disability, caused by ME/CFS. --83.244.149.133 14:48, 2 May 2007 (UTC)

Testing

The "testing" section starts by saying that the NIH recommends a number of laboratory tests. However it seems that people have just been adding additional tests to this list, and there are quite a few there that I would very much doubt if the NIH would recommend them. Does anyone have a reference to the actual NIH document? --Sciencewatcher 17:50, 14 March 2007 (UTC)

Notable sufferers

This really needs looked at. It includes two fictional characters (neither of whom are said to suffer CFS in the fiction) and an awful lot of (frankly bizzare) speculation. Daibhid C 21:48, 17 March 2007 (UTC)

I've removed the fictional characters, and two others that I'm fairly certain were intended as "jokes", and added a "sources" tag. I suspect the whole section may need wiped, but I'd like an expert opinion. Daibhid C 21:54, 17 March 2007 (UTC)

I'm no expert, but my opinion is that every notable sufferer should have a source found, or be deleted. Thedreamdied 23:45, 17 March 2007 (UTC)

I agree. Most of the wikipedia entries for those people don't mention CFS. - Tekaphor 13:53, 19 March 2007 (UTC)

ICD-9

As far as I know, CFS was not listed in the ICD-9. The link leads to the ICD-9-CM, a USA-local, non-WHO classification based on the ICD-9, not the ICD-9 itself.--Guido den Broeder 00:11, 18 March 2007 (UTC)

The ICD-9 doesn't seem to be available at the WHO website. I did however find this at the CDC's website:

ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD-9/ucod.txt

- Tekaphor 01:40, 18 March 2007 (UTC)

Thanks, there is indeed no mention of CFS. In fact, there is no two-digit code at all.

780.7 Malaise and fatigue

Asthenia NOS Postviral (asthenic) syndrome

Lethargy Tiredness

Excludes: combat fatigue (308.-)

fatigue during pregnancy (646.8)

neurasthenia (300.5)

senile asthenia (797)

I therefore submit that the link should be removed. --Guido den Broeder 09:46, 18 March 2007 (UTC)

If that is the code that CFS is coded under then it should not be removed at all. There is no code for CFS per se in ICD-9, but 780.7 comes pretty close. I can give you several examples (e.g. HELLP syndrome) where ICD-9 has limited backwards compatibility. JFW | T@lk 15:22, 19 March 2007 (UTC)

Perhaps this helps? AvB ÷ talk 16:20, 19 March 2007 (UTC)

What I am saying is that the code given in the article does not exist, so the information is incorrect. Pointing to 780.7 is an option, but only if the link is made to the actual ICD-9. On the other hand, the ICD-9 is obsolete, so why mention it at all? --Guido den Broeder 08:33, 20 March 2007 (UTC)

Thanks for explaining. The problem as I see it, if it is a problem, is that Wikipedia in this respect is USA-centric. As you know, in the USA, ICM-9 has been superseded by subsequent ICD-9CM versions. The ICD-9 template ({{ICD9|780.71}}) automatically refers the reader to ICD-9CM in all articles that use the template. This would address your problem if we could get the infobox to reflect the fact that it points to ICD-9CM. A better solution might be to give all three codes since Wikipedia can and does give obsolete information in many instances, mainly for historical purposes. However, as I've just found out, the infobox seems to resist such changes. AvB ÷ talk 09:04, 20 March 2007 (UTC)

PS I've proposed a solution on the relevant talk page. AvB ÷ talk 09:33, 20 March 2007 (UTC)

CFS, ME, PVFS

Present text: "Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS)"

The above seems not to be in accordance with the ICD-10, nor with the point of view of the CDC, nor with the historical meaning of the terms. CFS, ME and PVFS are not synonymous:

• PVFS is the title of G93.3. This is an umbrella term. At present, only ME appears in the tabular classification as a form of PVFS, but more could be added just as is the case with other codes.
• ME is a diagnosis listed under the header of PVFS. It is not a group term but a specific diagnosis, pretty much defined by its name.
• CFS appears only on the alphabetic list of the ICD-10. It has been given the code G93.3, which means that it falls under the header of PVFS. That, however, does not imply that it is identical to PVFS or another name for ME. There are several more terms on the alphabetic list with the same code, too.

Historically, CFS is a working case definition, nothing more. It is what is used in research because it is expensive to diagnose ME. To be certain, one would have to do an autopsy, which is a rather taxing procedure to the living patient. CFS targets the ME patients, but it is not ME itself, and people can get diagnosed with CFS that do, in fact, not have ME, but another disease like Lyme, Hashimoto, depression, metabolic disorder etc.--Guido den Broeder 10:12, 18 March 2007 (UTC)

And how could you diagnose ME from an autopsy? Thedreamdied 19:28, 18 March 2007 (UTC)

I agree that CFS/CFIDS/ME/PVFS may not all be exactly the same illness, however they are clearly used synonymously in the medical profession quite often - I don't think CFS is the best name but it still seems to be the most common one. At wikipedia both ME and CFIDS lead directly to the CFS page, and PVFS has a short entry which also leads to CFS. If the name PVFS was adopted in an attempt to represent CFS/ME more accurately (although this is debatable), doesn't this further highlight how the names are used synonymously? So unless someone is going to rewrite separate definitive articles for each one of these, I don't think its practical to remove the ICD references from the CFS page, especially when these illnesses have so much overlap and whose etiologies remain murky. - Tekaphor 04:12, 19 March 2007 (UTC)

Just because someone put a redirect on the ME page to CFS doesn't mean it should be there. i.e. Just because many people use the terms synonymously does mean they are synonymous. There should be seperate pages for seperate things. However, I do agree that there should be links between the pages in appropriate context. —The preceding unsigned comment was added by 82.41.24.187 (talk) 07:11, 15 April 2007 (UTC).

You are right. It has become increasingly obvious to me lately that the original term C.F.S. was too loosely created, over-emphasizes fatigue and under-emphasizes the other symptoms; at the expense of the more severely affected patients who are being lumped into the same group as those who lack additionally disabling key symptoms of M.E. such as Myalgia and post-exertional malaise. I now better understand why some people are angry at this discrepency. - Tekaphor 09:27, 25 April 2007 (UTC)

article cleanup

This article has the potential to be a really good one, but it's very long and gets sloppier and slopper (also redundant) as it progresses. Informal tone and careless punctuation are a problem. Also, inconsistent and inappropriate formatting styles are used.... basic copyediting, tone formalization, and re-formatting could make it a standout piece. LeSaint 01:07, 22 March 2007 (UTC)

I have added a cleanup tag to the article. The article, and this discussion page, has grown substancially since April and is no longer appropriate. How anyone with CFS is expected to read it and take something meaningful away with them is beyond me! Please see "Forking", "A push forward" and "More on need for new Site Design" below. Jklsc 12:42, 1 September 2007 (UTC)

Forking

This page is far too long. I tried to fork it but Jfdwolff unforked it because:

"Such moves should only be made after ample discussion on the talk page, especially in such a controversial topic.

The page is presently too large. I'd much rather that time is spent removing irrelevant or off-topic material and concentrating on the various schools of thought in CFS. There is a lively discussion on Talk:Chronic fatigue syndrome"

That may be so but everyone here agrees that the page isn't good enough and it's length far surpases the wikipedia norm. I think that it should be forked now so that people can actually read it! It is completely inaccessible the way it is. Sure, it needs to be tidied up but that isn't going to happen any time soon so, let's have a little discussion and then fork it. Jklsc 19:24, 24 April 2007 (UTC)

How or where might we fork it? A central article that has summaries and links to other articles? Split according to competing and frequently incompatible definitions? Other? -- Strangelv 07:24, 29 April 2007 (UTC)

If we decide to fork, this article should be turned into solid gold without NPOV issues. For instance, if we were to fork a history of the chronic fatigue syndrome we would need a concise but very good, heavily sourced and uncontroversial paragraph titled "history" on this page, with a {{main}} link to the content that has been split off. JFW | T@lk 12:04, 29 April 2007 (UTC)

The simple way to fork it would be to keep the subject headings that we have, move their content to seperate pages, and leave summaries on the main page. Sections 3 (Proposed causes and pathophysiology) and 5 (Treatment) in particular are too long and should be the first to go. We should then take stalk of what we have left. Jklsc 21:44, 30 April 2007 (UTC)

Today I was going to add my few months of work to the CFS article; but I didn't continue because it would just further bloat an article that is already too large. I believe these additions are important, with the work being on (studies into): physical fitness, neurocognitive dysfunction and neurological abnormalities, psychological and psychiatric factors, immunological abnormalities, oxidative stress, and history. Maybe Jklsc has a good idea about each large section being forked with a brief summary remaining on the main page, although JFW has a good counter point about quality control. However, I have come across articles before that implemented a similar structure, and as long as each page was clearly linked to all related pages, it seemed to work well. Another reason I now support forking is that the section on controversy needs a lot of work and is obviously going to become larger since most people here seem to want to expand/contribute to it. JFW, it may be slightly hypocritical of me to make suggestions for trimming/removing since I have a few pages of text I want to introduce, however, my suggestions would be (besides general copy-editing and/or condensing): some of the proposed etiologies that seem unrelated to CFS could be reduced to a list of bullet points with one sentence descriptions; the list of notable sufferers could be severely shortened; the paragraph in the "activity levels" section about 2 people could be removed. - Tekaphor 10:26, 5 May 2007 (UTC)

A push forward

Jfdwolff wipes mouth, folds serviette, and rises, unfolding notes deftly pulled from a pocket in his dinner jacket.

Dear friends, it is time to make this article a shining example of Wikipedia's collaborative approach. CFS/ME is probably one of the biggest controversies of modern medicine, and a paradigm for a group of conditions where the patient clearly perceives things while the health professional cannot objectify the disease in a way that he/she would diagnose a heart attack, cancer or diabetes. That makes it an immensely fascinating condition, both from the diagnostic and from the therapeutic perspective. Sadly, over the years, some more oldfashioned medical minds have dismissed the condition as nonexistent. That is - in my mind - even worse than postulating a non-organic cause.

There is no doubt that CFS exists, leaving alone its nomenclature. The doubt is as to its etiology. The doubt is also as to its optimal treatments. Nothing is certain. What is certain is that no school of thought is definitive in its approach to CFS. All the more so, no treatment regimen is to be regarded as perfect (and that includes heavily tested regimens such as CBT, GET and equally all sorts of immune-boosting, virological or biochemical treatments).

I suggest we make quite a few cuts in the article. We need to start by using WP:MEDMOS, a time-tested format for articles on medical conditions that is employed extensively throughout Wikipedia. It gives plenty of room to list all symptoms, postulated causes, treatments and epidemiological data. It even allows for the obvious controversy to be treated fairly.

I would also recommend that WP:MEDRS is used as much as possible. Secondary sources (i.e. those papers that review clinical studies and assess their quality and importance) are probably the most helpful here. Presently we quote many primary studies (even some pretty hardcore immunology stuff) that may not nececssarily be relevant to CFS/ME at all; I suggest many of these are slashed. For the politics (see below) we need sources that take a bird's eye view of the whole thing - it would save an immense NPOV job.

With regards to the politics, I need a commitment from all regular editors that we will respect each other's views. At the moment nobody has the final word, and it would be an NPOV failure if we failed to recognise this from the start. Of course we should quote the major outlets of opinion (e.g. the recent Lancet review PMID 16443043 that took a largely psychological approach but equally high-quality papers that postulate immune or toxicological links) but always in context and with the necessary NPOV caveats.

I don't personally treat many people with the condition, nor am I personally close to any sufferers. The good thing is that this liberates me from the shackles of personal interest. I'd be very pleased if we could agree on the above. JFW | T@lk 12:04, 29 April 2007 (UTC)

A sound proposal JFW. No forking would be ideal, but if we need forking to shrink the article size, I would suggest creating a new page that includes the research findings as well as the proposed etiologies and corresponding treatments, as this is the largest area in the article. The research edits I am working on as previously mentioned (which will be ready within a few days) only take up a few pages of visible text in total, but they are embedded with many references and therefore will significantly increase the "invisible" size of the article. - Tekaphor 15:03, 29 April 2007 (UTC)

Either that is an example of a bad after dinner speach (i.e. at less than 3 minutes I'ld suggest Jfdwolff you don't charge by the minute) or a shinning example of how salient points can be expressed succinctly in under an hour and requiring neither OHPs nor handouts :-) As for Tekaphor's point about forking off sections, the very real risk would then be that each sub-topic gets both unnecessarily expanded and each gets written as it is were the whole truth of aetiology or treatment approach. We would then loose, or at least make it much harder to maintain, the overall NPOV and sense that the understanding of this condition remains incomplete as Jfdwolff so well expressed. David Ruben ^Talk 16:59, 29 April 2007 (UTC)

Forgive me if I speak in error, because I am not an expert on this subject. But in a sense, the forking issue is a little different for a diagnosis of exclusion, like CFS. No one is disputing that CFS is a real condition with real biological causes. But as soon the cause for a patient's CFS is known, then by definition, the condition isn't CFS. Looking for a cure for CFS is like looking for what's north of the north pole -- it's a misuse of terminology. I think that most of the content on this page should be split to the existing pages for the corresponding etiologies, and the CFS article should focus upon what remains when every known cause has been ruled out. --Arcadian 20:59, 29 April 2007 (UTC)

I'm going to second Arcadian's point about "forking" off content relating to well-understood organic diseases, although I think it is more a need for "merging" them into the corresponding articles (I also agree that is would be a mistake to create new CFS sub-articles). I agree that the bulk of this article should deal with the idiopathic syndrome, and there should be little more than a list of links (and perhaps a diagnostic algorhthm, but certainly not treatment), for non-controversial disease entities which may present as "chronic fatigue syndrome." -Rustavo^{Talk/Contribs} 22:55, 29 April 2007 (UTC)

I'm going to speak against restructuring around the diagnosis of exclusion model. For starters, the CDC definition is not the only definition and is becoming increasingly controversial. Indeed, the very concept of a diagnosis of exclusion is imperfect: having ailment X does not make you immune to an ailment that someone is trying to define (therefore it should be a desperate, last-resort means of defining something, and we have enough information to not need such desperate resorts at this point, even if the information we have is still not as conclusive as we need it to be). Furthermore, there are too many competing models to use one for a basis for organizing this article: we do not have a sufficiently definitive diagnostic to use for a basis, not even the Canadian one. -- Strangelv 01:37, 30 April 2007 (UTC)

I disagree with Arcadian that we should treat CFS as a diagnosis of exclusion. That certainly does not preclude an underlying cause that has not yet been identified. Campaigning groups make this point repeatedly when insisting it should be labeled a neurological condition (and lobbied the WHO to assign ICD-10 G93.3), and certain research groups have reported biochemical changes (e.g. RNase L activity as reported by the Brussels group). It would be a POV problem to insist on labeling CFS as a "diagnosis of excusion by definition". JFW | T@lk 13:45, 30 April 2007 (UTC)

On the NPOV issue, there are two core camps that are not on speaking terms with each other and routinely produce mutually exclusive results, possibly by virtue of selecting patient groups using very different diagnostic criteria that exclude different patients from consideration. Something I've contemplated has been to propose a restructure centered around the two competing camps, their preferred diagnostic criteria, treatments, et c., but have not had both the time and energy (yes, I'm a patient, which probably indicates which of the two camps I'm more sympathetic towards -- when such a large percentage of the patients pick one such camp over the other, it should probably set off more than a few alarm bells among neutral and objective observers, but I digress). -- Strangelv 01:37, 30 April 2007 (UTC)

Do you have any evidence to support the assertion of "two camps"? This may well be the case (it is certainly my impression, reading the discussions in the public domain). However, unless someone has spelled this out the way C.P. Snow spoke about The Two Cultures, it would be quite innovative and quite possible WP:NOR to approach matters this way.

I'm grateful you've stated your POV from the outset. Your views are highly important in this debate, but I hope you will also aknowledge that at the moment no single approach has been confirmed or disproven, despite the strong antagonism against one of the schools by patient groups. One need only remember that what Charcot labeled "hysteria" turned out to be something quite different - labels and approaches change as medicine evolves. JFW | T@lk

Jfdwolff and Stranglv, you are speaking from the bottom of my heart. Stranglv's pointed observation of two camps with diametrically opposed views is in my view the key to achieving long term stability in the aritcle.

Due to several factors (about which I could elaborate for pages and pages...) it is possible that both camps can come up with growing heaps of material deployable to beat members of the other camp over the head with. There has been heated exchange for over 20 years, there extensive scar tissue - and most importantly - the aggregated stakes of the camps are unusually high for wikipedia standards. I personally do not expect this to improve during the course of the next month and years.

Coming to the point: I think a conventional approach to this topic which tries to sideline the nature and background of the controversy via a brokered set of rules and compromises will be subject to perpetuated wear and tear given the ongoing bitter and growingly high powered trench war in the real world.

I therefore humbly suggest that we should indeed make an innovative and uncommon stab: Let's embrace the controversy in a proactive way, aiming at maximum instead of minimum exposure for all camps, as early in the article as pragmatically possible.

Before you snort at the idea consider this:

1. It might be the only way to preemptively take the wind of hate out of the sails of desperation and hubris of future edits, if you will.

2. It would be a way more accurate description of reality than the attempt to sweep the controversy and the existence of the trench in the scientific world under the rug.

3. It would give the inevitable heat of future exchanges an "offshore" area to target, rather than the content of the article.

This, of course would come at a price: Both camps will be taking it in the ribs and will have to stand it (but that's much easier, if the other side is taking some punishment as well). Camp soma will have to stand the (possible catch22) accusation that they simply will not accept a psychiatric diagnosis, camp psycho will have to live with their (potentially damaging) long list of erroneosly psychologising somatic diseases like MS, parkinson, stomac ulcers, etc.

If we don't drag the dirty laundry in the bright light of the day, it will keep flying back and forward on the discussion page and will be used as ultima ratio for endless reversions until the end of time or beginning of biomarkers.

As for my POV: I am a Patient with a professional interrest in studies and analytics. Experiencing the illness first hand combined with the new estimates of prevalence, I think psychiatry is dancing on the volcano.JayEffage 19:17, 30 April 2007 (UTC)

You missed my point on the proof that there are two camps. Can you demonstrate the existence of such a clear dichotomy with a good reliable source? I thought my C.P. Snow analogy would be sufficient to indicate what kind of problem we're facing.

You may think psychiatry is dancing the volcano. I think that creating false hopes by attributing CSF to particular agents is equally deplorable. Most of these theories are floated online before properly designed trials have been caried out (see our exchange on a "diagnostic test" above). I urge you not to dismiss the psychiatry paradigm out of hand just because you instinctively disagree with out. JFW | T@lk 13:06, 1 May 2007 (UTC)

Jfdwollf, I did not miss your point, I just read it to the effect of you being willing to give some thought about a possible unconventional and NOR approach, but apparently I misunderstood you, no hard feelings. Common sense would suggest the dichotomy, I can not proof it, and I doubt anyone can, especially as the psychiatric school of thought retreats to statements like "...not suggesting it's all in the head...can't seperate mind from body...intervention is holisitic apporach" in external communication. Again, my point is that calling a spade a spade and offshoring the battleground might give the article more long term stability, but that was just a suggestion.

Off the record: I agree that attributing CFS to single causative agents might be a questionable practice - but only to the extent where somebody claims having found the holy grail. However, as we are talking 7 or 8 digit numbers of patients world wide, it would -in my eyes - be equally foolish to assume that IF a certain single causativ constellation can present as CFS that you would not be able to find [x]* patients suffering from that exact cause. I did not instinctively disagree with the psychiatric school of thought, but I see that you can read that out of my statement above - as always, reality is more complex, and in this case for the time being not directly relevant for the article JayEffage 18:12, 1 May 2007 (UTC)

I agree to the extent that a concise statement defining the controversy is important enough to this topic that it should probably be in the introductory paragraph to the article. Perhaps you were suggesting that we write an entire first subsection on this topic? That idea is interesting, but potentially perilous (it would have to be very well-written, and consensus might be hard to come by). However, I think we should stick to a standard disease format for the bulk of the article - to do otherwise perpetuates (unwittingly) the notion that CFS is not a 'real' disease.

At the risk of opening a can of worms, I think the idea that there is a distinction between "psychiatric" diseases and "somatic" diseases is itself POV. There is every scientific reason to believe that diseases like obsessive-compulsive disorder, schizophrenia, and in many cases, clinical depression, are just as based in pathological processes of cells and tissues, as "neurological" diseases like multiple sclerosis, or post-herpetic neuralgia. The brain is not walled off into neat little compartments of "neurology" and "psychiatry", and to base an article on such a false dichotomy seems like a bad idea to me. Saying that a disorder is "neuropsychiatric" in etiology is very different from saying it is the product of a delusional psychiatric disorder, or of malingering.

Since we're all sharing, I'm a medical student, soon to be a pathology resident, and have no experience with CFS.-Rustavo^{Talk/Contribs} 00:09, 1 May 2007 (UTC)

I don't know how anyone can refute the existence of two opposing camps. Look at the work of Professor Jason which deals with such controversies, especially differing opinions on case selection. Stuff like the Heim et al study is only possible while twisting the case selection until what comes out appears to be a form of PTSD. Many reviews and editorials start off acknowledging the subject's disputatious history. Even the early papers on ME cuationed against misdiagnosing psychosomatic illness, suggesting association through a differential. The Canadian guidelines and the Gibson Inquiry both make some mention of it. The problems is that around the edges of both camps are blurred, murky areas where even the controversy is controversial. (An example might be the CDC's recent attempts to revise the case definition resulting in an explosion of the incidence of CFS while severity plummets to the extent that apparently 80% don't know they're ill.) ANyway I would welcome expanded, forked articles on this and other sections. (Is a fork is basically a subpage?) MEspringal 23:39, 11 June 2007 (UTC)

OK, I hope I wasn't too bold, but I decided to take a crack at reorganizing the existing text according to WP:MEDMOS, per Jfdwolff's suggestion. I think once we reach consensus on a basic structure, it will be easier to get down to the nitty-gritty of what does and does not belong. I'd appreciate feedback from the page's regular contributors. -Rustavo^{Talk/Contribs} 03:43, 30 April 2007 (UTC)

Thanks Rustavo, that was immensely helpful. JFW | T@lk 13:45, 30 April 2007 (UTC)

I do prefer the new structure as it is more accessible. In my opinion, the text is still far too long and most isn't relevant to this type of article. I see no reason why we can't fork much of it and keep all sides happy. This is an Encyclopedia and I expect that most contributors and readers want it to stay that way. Therefore, we write what is relevant, keep it short, and refer to more detailed information (in case a reader wants to learn more). In other words: stick to standard operating procedures and this article will be fine. This isn't the first topic on which a lot of people have had a lot to say. Jklsc 22:12, 30 April 2007 (UTC)

It's looking much better! One suggestion I have is to cull or at least stop adding to the "notable sufferers" list. I don't see what it adds other than trivia at best. Cynics are not going to be convinced by celeb sufferers and one person's fame is another's infamy. MEspringal 23:39, 11 June 2007 (UTC)

One obvious thing that still stands out is that structurally the CDC definition is presented as THE definition. The main definitions should be presented as coequal, and there's quite a few of them. -- Strangelv 23:44, 30 April 2007 (UTC)

Second this. One thing I wanted to do before I became too ill was to do a comparative table of the criteria. Maybe I still might if no one else does first and I have no other demands. MEspringal 23:39, 11 June 2007 (UTC)

Forks are a great idea, it allows more discussion on particular issues.

For instance "causes" could have a general summary and a link to a main article just listing causes. The same could be done for "definition", "treatments" and "controversy". Each has a general summary and a link to a main page with more conversation.

This is what we did at Lyme disease with Lyme disease microbiology, Lyme disease controversy and the POV uncited Lyme Disease Military history [[[User:67.82.232.151|67.82.232.151]] 02:04, 1 May 2007 (UTC)]

The latter page is a clear POV fork, and a rather silly one at that. While a tempting way to try to make peace with a nutty editor, it's not very helpful in the long run. I suspect that Lyme Disease Military history will not be with us for very long. -Rustavo^{Talk/Contribs} 05:18, 1 May 2007 (UTC)

Forks should happen after the most irrelevant material has been trimmed. Ridiculous notions could be perpetuated on subpages just because nobody has bothered to edit the content properly. JFW | T@lk 13:06, 1 May 2007 (UTC)

Explanation for the symptoms section edit ... - The leading sentence stated, "according to the 1994 Fukuda definition", but the descriptive list given wasn't characteristic of the Fukuda reference and was much more like the Canadian definition. Also, "post exertional malaise", which is listed in both the Fukuda and Canadian definitions, wasn't even listed as one of the 8 in the article. Furthermore, "psychological/psychiatric symptoms" was listed in the article as one of the 8 but aren't mentioned in either definitions in that way. So I made changes to bring it in line with the Canadian definition. I also; added a few symptom specific references, mentioned the possibility of psychological/psychiatric symptoms at the end, and suggested the reader to visit the "proposed causes and pathophysiology" section for related information about the listed symptoms. - Tekaphor 14:04, 1 May 2007 (UTC)

More on need for new Site Design

This site is definitely too long, my wireless server drops out before I can even make a contribution, not everyone lives in the fast lane! You are probably all at this time, beavering away dividing it up anyway, but allow me to make a suggestion, Rather than divide it up along some ideal medical template, I would suggest you split it up to suit the uninformed who are likely to visit the sites. For instance

Article 1 CFS Deinition and Diagnosis ‘So I have CFS, what is it’, “what do I need to know to discuss it with my practitioner’?

Article 2 CFS Treatment and Therapies ‘What can I do to help myself’, ‘What can my pratitioner do’, ‘what other options do I have’?

Article 3 CFS Research ‘If there is no cure where is Hope’ ‘What is in the pipeline in the future’,

Article 4 CFS Hypotheses and Controversies ‘ I have been told or heard this or that but it does not fit with my experience, are there other opinions,?

More Articles as need be, in other words stucture the site to suit potential users, not just contributors. Some great stuff here, now the challenge is to make it more accessable.Jagra 11:44, 19 June 2007 (UTC)

references for the psychiatric vs physiological debate

The below document is a clinical guideline on ME/CFS for psychiatrists written by a psychiatrist (featured on a link from an earlier talk page post by Bricker), and may be a good starting point to explore for issues relating to the psychiatric vs physiological debate: http://www.sacfs.asn.au/download/guidelines_psychiatrists.pdf

Of particular interest are the references contained in the following sections:

• 2.4 Etiology (p5)
• 3. ME/CFS is NOT a Psychiatric Disorder (p7)
• 3.1 Rates of Psychiatric Disorder in CFS Are Similar to Rates in Other Chronic Medical Conditions (p7)
• 3.2 Rates of Personality Disorder in ME/CFS Are Not Elevated (p7)
• 3.3 Genetics of Depression and ME/CFS Are Independent (p8)
• 3.4 Physiological Measures Between ME/CFS and Depression Differ (p8)
• 3.5 Illness Severity and Not Psychological Factors Predict Outcome (p8)
• 8. Treatment Issues (p17)
• 8.1 Drug Dosage and Drug Sensitivity (p17)
• 8.2 Utility of CBT/Graded Exercise in ME/CFS (p17)

Hope this helps. - Tekaphor 06:18, 27 March 2007 (UTC)

Tekaphor: this article seems to be very POV - the psychiatrist is really just putting forward her view that CFS is not a psychiatric disorder and using selective evidence to do that. For example, she says that CFS patients are no more likely to have personality disorders, but she neglects to point out the many studies that show CFS patients have different personality traits and coping styles from controls. She also points out the CFS is not depression, but that does not mean it is not psychiatric. Depression is not the only psychiatric illness out there. The document above is only useful to people like Bricker who are trying to promote their POV that CFS is not psychiatric. --Sciencewatcher 03:57, 1 April 2007 (UTC)

Sciencewatcher, you were kind of right, the paper was of limited value for the research I wanted to do so I searched PubMed instead, however in that process I also came across studies finding comorbid and even possibly premorbid personality traits in neurodegenerative disease. Perhaps CFS is partially neuropsychiatric. - Tekaphor 06:24, 5 May 2007 (UTC)

Sciencewatcher, you said that there are "many studies that show CFS patients have different personality traits and coping styles from controls". Do any of these studies demonstrate a causal link? In the study you posted previously that found there is a higher rate of defensive high anxious coping style in people with CFS, it is proposed that this is a way to deal with poor self esteem. However, the majority of the participants with CFS in the study didn't have this coping style and it isn't clear how it would cause all the CFS symptoms for those who do, and what about those who don't have poor self esteem? Also, without access to the full text I don't know what illnesses the "chronic illness controls" were affected with, which is important since neurological illness can also cause mood/personality disruptions. Without demonstrating that a particular coping style is causal of CFS and only that it exists more commonly in people with CFS, it may still be a maladaption or even a symptom. CBT may improve this, but it also seems to help the coping strategies, psychological wellbeing and perceived health competence of people with multiple sclerosis.[7][8] - Tekaphor 13:04, 1 April 2007 (UTC)

Sciencewatcher, ME/CFS is a neurological disease by definition. To be exact, CFS is a working case definition for Myalgic Encephalomyelitis. You could (wrongly) claim that the disease doesn't exist, but you cannot claim that it is something else.--Guido den Broeder 01:51, 4 April 2007 (UTC)

A study of gulf war veterans suffering from CFS (PMID 11033371) showed that biopsychosocial factors (including personality, negative coping strategies and wartime stressors) were significant predictors of current physical function. Nobody is saying that a particular coping style is causal in itself, it is just a factor. The most likely explanation for CFS is that it is burnout caused by stress, and all of the evidence seems to point to this. --Sciencewatcher 15:16, 1 April 2007 (UTC)

There is no such evidence. What you are saying is by definition impossible. If any patients that were diagnosed with CFS later appear to be suffering from a psychocological or psychiatric disorder (and this not as co-morbidity), then they were simply misdiagnosed.--Guido den Broeder 01:51, 4 April 2007 (UTC)

What "all the evidence points towards" is still open to interpretation and debate (not to mention the need for more research), although some kind of "burnout" triggered by stress does make some sense (using the word "caused" may be premature) - stress seems to promote many different illnesses, some psychiatric and some physiological. A proven physiological etiology is what seems to separate assumed psychiatric illnesses from known neurological illnesses, so I'm guessing that your main point on this issue is that unless a physiological etiology has been identified for CFS, it remains a candidate for psychiatric status because of the stress factor? - Tekaphor 08:08, 3 April 2007 (UTC)

Not necessarily. Positive proof is there in terms of people going from severely disabled with CFS to full recovery after undergoing treatments which are psycho-social in nature. The problem is that not all people are cured by the current treatments. I think this is partly because CBT is based on a flawed theory of the illness, and patients won't invest the necessary belief/motivation/energy (or whatever is required) if they think the treatment is a load of crap. A fibromyalgia study showed that self-efficacy was the biggest predictor of recovery for patients undergoing treatment, and I think the same will be shown to be true for CFS. --Sciencewatcher 13:39, 3 April 2007 (UTC)

There is no such proof. On the contrary, there is proof that CBT has no curative effect on the illness (e.g. the RIZIV evaluation study in Belgium, 2006). The few studies that claim a positive curative result are flawed. Patients that participated simply did not have ME/CFS, among other things, and the results have been polished by deleting participants whose condition deteriorated.--Guido den Broeder 01:51, 4 April 2007 (UTC)

If that was the study where the Belgian Government found out that CBT did not live up to psychiatrists promises it should be taken into the article, if not already contained. —The preceding unsigned comment was added by 192.68.211.173 (talk) 10:34, 4 April 2007 (UTC).

This is the reference: RIZIV, "Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS), evaluatierapport 2002-2004", Brussels, July 2006 —The preceding unsigned comment was added by Guido den Broeder (talk • contribs) 10:59, 4 April 2007 (UTC).

It would help if the reference was in English. Different studies showed different results; hence the value of systematic reviews, which have so far found that overall CBT seems partially effective in some people with CFS. But even if there were inclusion errors or biased results, its still too early to say that those who recovered with CBT/exercise "never had real CFS" (perhaps it aided the natural recovery process). CBT seems generally less effective in severely affected patients and while individual disbelief or reluctance towards CBT would reduce it effectiveness, even with positive belief and effort in the treatment it would be harder to effect neurocognitive change when one's energy is reduced (not to mention the other symptoms, biological disturbances and the possibility of a physiological etiology). Correlating self-efficacy and outcome isn't necessarily a good guide, since it could be based on the severity of the illness rather than the patient's confidence, with severity of illness also appearing to be correlative to the outcome. In regards to the article, I think we should represent and reference these issues adequately until more definitive studies are available. - Tekaphor 06:14, 5 April 2007 (UTC)

Comment that was pasted to article space

1. 84.70.87.190 03:00, 3 April 2007 (UTC) this page is appaling vast improvements are needed. VOTE IMRPOVEMENT support thedreamhasdied and other ME sufferers in VOTING THAT THIS PAGE NEEDS THE EXTRA CARE IT DESVERVES!!1

I think the article is much better than it was. People such as Tekaphor have done a good job of improving it recently. --Sciencewatcher 13:42, 3 April 2007 (UTC)

"Diagnostic test coming soon"

I must disagree wholeheartedly with Thedreamdied that the Glasgow research is anything else than just another blip on the map of CFS research. The New Scientist is a rather poor source when it comes to this. We know for quite some time now that CFS is not just in the mind, and the Glasgow research doesn't change that. But the page you offered re. a diagnostic test is so utterly vague I cannot possibly support the claim that this is a revolution in CFS diagnosis. Kenny de Meirleir in Brussels has been working on RNA stuff for years. One could equally claim that his research represents the "definite pathological substrate" for CFS, and that diagnostics in this pathway would equal a useful diagnostic tool. We know this not to be the case.

The article must not make claims that cannot be supported. That is why I removed the draconian claim from the intro. I will not see it back without a fight - it would be irresponsible to claim that CFS has a definite pathological substrate and that objective diagnosis is therefore possible. JFW | T@lk 00:21, 8 April 2007 (UTC)

I disagree - Dr Gow's team at Glasgow University are working on a diagnostic test for chronic fatigue syndrome, and claim it may be ready within a year (dubious, but thats what they say), which clearly deserves a place in the article. And the difference with Dr DeMeirleir is that this genetics based research is being carried out by at least 3 teams worldwide, in Glasgow, London and some place in America with the same restults. And yes, it would be irresponsible to claim that 'cfs has a definite bla bla', but thats not what we're saying - we're saying it is suggested by research.

And incidentally, why then do you allow this line - "Recently, genetics and stress have been found to be factors in the development of CFS." in the introduction to stand, without source or reason? Thedreamdied 12:28, 8 April 2007 (UTC)

When adding the details and references about genetics and stress to the etiologies section, I also added the related short statement to the end of the first paragraph because that area seems to function like an introductory summary. I can't find Dr Gow's latest genetic work on PubMed, only the early results in the already referenced BBC News article ( [9] ) dated 28 May 2005 which contains the "one year" statements but also that more funding was needed (not a good sign for work that's nearly one year overdue). Besides, there are already more reliable references to CFS genetic studies in the article. CFS may not even be a single entity and perhaps the clinical diagnosis will end up being "further supported" (but not necessarily confirmed) by a series of biological tests to find any of the genetic/neurological/immunological abnormalities that seem common in many patients. JFW is right that these studies do not guarantee a definite diagnostic test is around the corner, although as Thedreamdied suggests they are obviously encouraging. Perhaps a solution to this dispute is to state something similar to: these findings "improve the possibility of a diagnostic test and perhaps even a cure but further research is needed" (that is what I wrote in the etiologies section but feel free to remove it or improve it). - Tekaphor 14:28, 8 April 2007 (UTC)

A agree with JFW that it is too much to expect that genetic research will produce a definite test any time soon. Definite tests for diseases are rare. There may simply not be such a test for ME beyond the direct observation of cns inflammation. However, we don't need it. There are other tests, called markers (usually biomarkers), which are good enough. Such tests provide no absolute proof by themselves, but they are used to distinguish one disease from alternatives. Markers need always be combined with the patient's story, the physician's observations and a range of standard tests before the diagnosis can be made. But by the end of the day, the RNAse L fragmentation test is about the best marker one can wish for, and it has been properly confirmed after the initial discovery by Suhadolnik. Another excellent marker for ME is low perfusion in specific areas of the brain, which can be measured with SPECT scans.--Guido den Broeder 16:56, 8 April 2007 (UTC)

Guido, what is the actual evidence that CNS inflammation plays a role in CFS at all? And wouldn't SPECT scans show the same changes in anyone with small-vessel disease?

Tekaphor: if that group has not even managed to get their results into a peer-reviewed journal we should definitely not be holding our breath. But the way, "more research is needed" without stating who says it is WP:NOR. JFW | T@lk 23:22, 10 April 2007 (UTC)

Yes, there is evidence from a number of autopsies, dating back to the 1950's. Remember that CFS is nothing more than a working case definition for ME, and ME is inflammation by definition. I was named thus by Acheson because of the autopsy results back then. You are correct about the SPECT scans, but such is the nature of markers. To distinguish between ME/CFS and other causes of the same vascular problems one needs a different marker, for instance peroxynitrite. Guido den Broeder 00:06, 15 April 2007 (UTC)

Ok ok, lets focus on the issue here, our opinions on the likely success or otherwise of research isn't really relevant to the article. And Tekaphor, couldn't find Gow's work but Kerr's is very similiar, here, and so i think we should at least mention it in the article, as its being undertaken by at least 3 teams worldwide and theyre all optimistic. What about "genetic research has been recently carried out by different teams worldwide who believe they have discovered distinct biological markers for Chronic Fatigue Syndrome, and believe this may lead eventually to a diagnostic test and even a cure" Thedreamdied 21:51, 11 April 2007 (UTC)

And just found similar research from the CDC, as far back as 2002: here Thedreamdied 22:07, 11 April 2007 (UTC)

Personally, I expect more from proteomics than from genetics when it comes to (additional) markers. Guido den Broeder 00:06, 15 April 2007 (UTC)

A test for CFS is elusive, because it is predicting that their is one antigen causing the disease, when CFS can just as easily be a manifestation of varied diseases (viral, bacterial or other) with the same neuroimmune insult. CNS inflammatory markers include the tests neopterin and circulating immune complex C3D (antigen-antibody bound complex), amongst others. —The preceding unsigned comment was added by 67.82.232.151 (talk) 04:09, 15 April 2007 (UTC).

Well, one should rather test for ME. There may be more than one virus involved, but that need not be a hindrance if the disease is the same. RNAse L fragmentation, for instance, is generally found, and so is hypoperfusion. Guido den Broeder 18:35, 25 April 2007 (UTC)

Thedreamdied, according to this website ( [10] ) this is what happened to Dr Gow's work: he applied for further funding, but was refused, with the money going towards "market research into ME" instead. - Tekaphor 11:57, 27 April 2007 (UTC)

Dr. Gow is continuing his work elsewhere. He also received a number of gifts to keep his research going. Guido den Broeder 08:39, 28 April 2007 (UTC)

Edits by User Talk:67.82.232.151

Ok, a massive change to the article, with no edit summaries whatsoever, or any order to the changes. Theres been quite a lot of arbitrary removing of information, and a massive new section, with bias, on anti-depressants. However, lots of the new additions have been great, so im thinking we should revert to the last good version, then selectively add in User Talk:67.82.232.151's edits? Thedreamdied 03:19, 15 April 2007 (UTC)

REPLY

Didn't mean to make "wholesale" changes, without edit summaries.

I fixed a lot of the references that weren't entered properly.

I added a lot of new research, including research on psychoneuroimmunology (which the page referred to already), and new studies on antidepressants having to do with cell-mediated immunity. It's all well researched and scientifically valid.

I also broke up some paragraphs fore ease of reading.

I also know I need to get a user name ;) User:67.82.232.151 April 15 2007

History

I've added some info to the history of ME/CFS. It transpires that several references now appear more than once. I don't know how to point to an already existing reference, so who can help out?--Guido den Broeder 08:48, 15 April 2007 (UTC)

Where the reference is first mentioned, instead of having <ref>(reference information)</ref>, type <ref name="whatever">(reference information)</ref> and when you want to mention the same reference again later on, just type <ref name="whatever"></ref> (note that whatever can be any label you want and the rest of the reference information doesn't need to be copied again). - Tekaphor 15:38, 17 April 2007 (UTC)

Note: Leave a space in between the two tags or there will be an error message. - Tekaphor 15:20, 1 May 2007 (UTC)

T-Cells

My mother was diagnosed with CFS many years ago and something that pointed to it was something about her T-cells. Can someone please put something in the Testing section on that. I think that would be of great benifit. SadanYagci 02:57, 19 April 2007 (UTC)

This will be covered by an immunology edit I am still working on, however it doesn't really belong in the testing section yet. Previously, this section became bloated with tests and someone ended up simplifying it with the exclusionary testing recommended by the CDC. Even though some studies have shown lowered T-cells in some CFS patients, it doesn't seem to be officially recognized as a reliable diagnostic tool. - Tekaphor 08:50, 23 April 2007 (UTC)

Paragraph on CBT

I see a lot of claims in this paragraph without proper references. The text is also somewhat at odds with the text immediately above it. To my knowledge, so far there has been no evidence that CBT has any healing powers whatsoever when it comes to ME/CFS. There have been claims but when CBT research is examined closely it usually transpires that there is a mispresentation of the outcomes and/or there is doubt that the patients that were treated did in fact suffer from ME/CFS. At best (RIZIV, 2006), patients report feeling somewhat better but objective measurement shows no change in their disability. Guido den Broeder 18:07, 25 April 2007 (UTC)

I have just added quite a few references to this section. Some of the parts you have marked do not need references, in my mind, but I have left them in for now. Have a look at the studies - they show that CBT is effective in treating CFS. CBT results in significant improvements in physical functioning, and in a certain proportion of patients results in full recovery. Don't believe the "claims". Look at the research yourself, and talk to patients who have recovered. Until you do this, you will have a biased, subjective opinion on the subject. --Sciencewatcher 21:43, 4 May 2007 (UTC)

Well, sciencewatcher, RIZIV 2006, was a government conducted study in the netherlands which showed that there is NO change in physical functioning - which is the exact opposite of what you are claiming. Guido, is there definitely no english translation?

Besides, for the umpteenth time, "talking to patients who have recovered" is euqal to "subjective statements" which is euqal to"IRRELEVANT" if we are talking evidence. If you think otherwise, what goes around, comes around and the following statement is true: "Sciencewatcher, until you have talked to patients which were either not affected at all or made worse by CBT you have a biased and subjective opinion on the subject." —The preceding unsigned comment was added by 88.217.1.92 (talk) 22:14, 4 May 2007 (UTC).

88.217.1.92: have a look at PMID 10796733 and you'll see it says "These trials demonstrated that CBT significantly benefits physical functioning in adult out-patients with CFS when compared to orthodox medical management or relaxation." This was a comprehensive review which looked at all of the studies into CFS. They only found 3 studies which they determined to be of high quality, and their summary is based on these trials. Can you translate the abstract of the RIZIV study into English so we can look at it? Regarding talking to patients: I was merely suggesting that you do that as well as looking at the evidence, as you seem to have a biased opinion against CBT and talking to patients who have recovered might help you understand how CBT and similar therapies could cure CFS. --Sciencewatcher 23:30, 4 May 2007 (UTC)

When studies are not entirely consistent, systematic reviews are especially valuable; with the latest one published in October 2006 by the Royal Society of Medicine ( [11] ) concluding that: "A number of RCTs suggest that behavioural interventions, including elements of CBT, GET and rehabilitation, may reduce symptoms and improve physical functioning of people with CFS/ME."; although they pointed out several issues, including lack of information regarding dropouts, lack of studies for the severely affected, and even possible bias in the CFS literature. I don't think the apparant effectiveness of CBT for CFS should be dismissed out of hand, but I share some people's concerns and criticisms over these studies. The discrepency between trial results and patient group surveys has been noted by the P.A.C.E. trial group, who are conducting a larger more detailed study into CBT etc ( [12] ). I have skimmed over the protocol and fortunately it seems that they are requiring participants to experience post-exertional malaise, although they will be excluding anyone with contraindications to any therapy involved (which again might exclude severely affected patients?). - Tekaphor 06:04, 5 May 2007 (UTC)

The review already points out some weak points in CBT research so far. It misses a few as well: (1) the percentage of cases where CBT has a positive effect (according to the researchers) is almost exactly equal to the percentage of cases where improvement occurred without any treatment whatsoever, and (2) while authors claim to have used the Fukuda criteria, in fact they may not have done so at all and used more relaxed criteria of their own making instead, while at the same time they denied inclusion to the severely ill. Guido den Broeder 18:02, 5 May 2007 (UTC)

Guido: in future please do not remove valid research just because you don't like it. I've added the review that you removed, as well as adding the more recent one discussed by Tekaphor above. --Sciencewatcher 00:01, 7 May 2007 (UTC)

You were, and are again, mispresenting the findings. This old review is also of very little value because at the time there was zero interpretable research on CBT. We can't list all 4,000+ publications on CFS in this article, there has to be a quality standard. Furthermore it is non-E since the review has been replaced by a more complete one. And, finally, you messed up the section because it is in the wrong place. If you still want it in after reading this, first give your arguments here, and if they are good we might give it a place. Guido den Broeder 08:29, 7 May 2007 (UTC)

Actually I didn't mesrepresent the findings - I copied the summary from the review itself, so how is that misrepresenting? It appears you have a dislike for CBT and you will misrepresent and use weasel words to prove your (wrong) point. Anyway, I see that the newer review is already there and the comment about physical functioning is there too, so I'll just leave it the way it is. If you had pointed this out in the first place it would have saved all of this nonsense. --Sciencewatcher 14:21, 7 May 2007 (UTC)

Hi, you can't trust summaries that way, they tend to be more positive than the actual findings since their purpose is to attract attention. With regard to my view on CBT, it all depends what cognitions and behaviour we're talking about. Experience and practice show that it can be marginally helpful to improve coping with a chronic condition, but ME/CFS patients find other methods like pacing and envelope to work better. However, when the idea of CBT is to heal someone who supposedly keeps his condition poor by having silly thoughts about being ill for real, the facts are that not a single ME/CFS patient has ever been healed this way, while many come out of this therapy damaged (also because in these cases CBT is usually combined with GET). If it were different, I would be the first to try it and I couldn't care less about what philosophy it is based on. But that's experience. The Wikipedia deals primarily with evidence. Now, IMHO the research into CBT so far has been appallingly poor to the point that the section would really need to mention only the latest review and the RIZIV evaluation study, and even then one should be careful. If you read the new review carefully, you will notice that any positive remark on CBT is based solely on one recent publication by Bleijenberg a.o. But meanwhile it has already been shown that that publication is not reliable. Guido den Broeder 16:19, 7 May 2007 (UTC)

Even though the review published in 2000 may be older, it isn't true that there was "zero interpretable research on CBT" as the review says it found 3 adequate trials. Sciencewatcher may have ommitted the weaknesses of the review, but I don't think there was a total misrepresentation of the findings. As I have implied before, it cannot be reasonably denied that CBT seems at least partially effective for some people diagnosed with CFS, and I don't think its helpful to totally deny these findings when the real issue is with diagnosis/selection. Obviously the severity of CFS varies greatly, but so might the strength of any psychological aspect to the disability even if the cause of the symptoms is physiological; and this may help explain why a CBT/GET approach works only for some. CBT requires considerable and consistent effort, so clearly this is going to be a difficulty for many CFS patients. Besides, even if CBT only "improves coping skills", this alone could still improve physical functioning somewhat; and even "pacing" can be used to increase overall physical functioning to the maximum sustainable level if applied properly and safely. - Tekaphor 04:25, 8 May 2007 (UTC)

These trials were, among other things, too small. Note that there have been several critical comments on this review and that the new review does not consider these three studies to be worthwhile. As for the rest, define effectiveness. Coping skills: fine. But beyond that, the most likely reasons why some participants in the published studies are measured to be a little better after CBT/GET are:

• they are not really ME/CFS-patients;
• they are a little better despite CBT/GET;
• the measurement is based on a subjective questionnaire and they have been made to believe that they are better (the essence of this form of CBT);
• they had significant co-morbidity,

where the first reason is probably be the most frequent. All of the studies that have so far been carried out, except for the RIZIV study, have in common that participation was highly selective against the severe or even moderately ill and impure with regard to clinical evaluation. Guido den Broeder 08:46, 8 May 2007 (UTC)

I think the problem is that your view of CBT is clouding your judgement. If the entire purpose of CBT was to change "illness beliefs", then I would agree that it couldn't possibly work. However if you think of it as an attempt to rehabilitate the patient physically and mentally, then it is easier to see how it could work. The patients I have seen who have recovered from CFS due to therapies such have CFS have never recovered due to "illness beliefs" alone. They have recovered because they have used a therapy to help them rebuild their lives, and removing the stress/burnout factors which caused the illness in the first place. As I have discussed here before, the problem is that there is no overall theory about how CBT works, and therefore people come out with these crackpot theories about it being purely based on illness beliefs. Illness beliefs may be a factor with some patients, in that they think they will never recover so they do the wrong things which makes them stay ill, and CBT might help with this, but that is just a small part of what CBT is for. Perhaps the reason that it isn't very effective is that the practitioners of CBT also don't really know how it works. But simply rejecting it out of hand is not very useful and will not benefit anybody. --Sciencewatcher 21:20, 8 May 2007 (UTC)

If the illness was caused by burnout factors, then it was not CFS but, as one might guess, burnout. Meanwhile, I am not rejecting CBT. I am rejecting unfounded claims, bad research and bad practice. What CBT does is change the patients' perception and management of their situation (if a therapy does something else, it should not be called CBT). That means that before applying it one should establish whether there is something wrong with the patient's current perception and management. If there isn't, CBT comes down to brainwashing and conditioning, which in the case of ME/CFS potentially means imminent danger to the patient's health. Guido den Broeder 22:15, 8 May 2007 (UTC)

As far as I can see, CFS is essentially a form of severe burnout. The research shows that stress is a major factor in causing CFS, and that is the experience of patients themselves. I have seen many CFS patients who were managing their illness very badly, so CBT is useful in those cases. I think a lot of patients don't realise they are managing the illness badly, which in itself causes a problem because they are less likely to be receptive to therapy and it is less likely to work. --Sciencewatcher 15:27, 9 May 2007 (UTC)

No, it is entirely different from burnout. There are no postexertional or immunological symptoms in burnout, for instance. Yes, there are CFS patients who manage there illness badly, but that does not mean that they should follow CBT. They should only consider CBT if the mismanagement is a consequence of a wrong perception. Otherwise, they should simply get practical help and advice, or follow pacing and/or envelope therapy. Guido den Broeder 15:59, 9 May 2007 (UTC)

Sorry, but to suggest "CFS is essentially a form of severe burnout" defies all sensible analysis. Thedreamdied 17:18, 9 May 2007 (UTC)

If you actually have a look at the research on burnout, you will see that it does actually have the same symptoms and signs as CFS. To reject the possibility "defies all sensible analysis". CFS and burnout are essentially the same illness. Also, many CFS patients do have a wrong perception of their illness. Whether or not that is a factor in perpetuating the illness I cannot say. --Sciencewatcher 15:14, 10 May 2007 (UTC)

Sciencewatcher, let me complete that groundbreaking thesis: All CFS patients who say CFS is not burnout have a wrong perception of their illness!

After these profound and irrefutable observations - which are certain too earn you praise and admiration on this page and in the halls of science - I do think time has come for you to chose a new Nickname, henceforth reminding us of our own limitations in the presence of your awsome mental powers. Something like "FatherOfWisdom" would come to mind, or "InventorOfAllScience" and "BeaconOfTruth". Maybe "StallionOfEnlightenment" or even "SeerOfTheActual".

The last one would certainly reflect your unrivaled mastery of seeing the truth behing complex entities by "actually looking".

Let your light shine down on us, "Sciencewatcher", your recent postings have - and that I mean in all earnesty - started to warm my heart. —The preceding unsigned comment was added by 82.135.87.116 (talk) 22:01, 10 May 2007 (UTC).

Thank you, Sciencewatcher, for making everything so clear to us. We had no idea. Guido den Broeder 09:17, 11 May 2007 (UTC)

I do have to defend Sciencewatchers psychological stand point just slightly, not that he's right, merely that CFS was once thought to be a psychological problem. I have had CFS for 14 years and the general census I got from doctors was that it was either simply psychological or a form of hypochondria. I had one doctor that believed it existed that had diagnosed me, after that it was impossible to get a doctor to give me serious attention. Its only in the more recent years that it was given its due as a full blown neurological problem, sometime after Fibromyalgia came into the lime light. So perhaps a section showing the past, now incorrect belief on what CFS really was? Morriganrane 19:32, 19 June 2007 (UTC)

The whole article

I have tried to improve this article over the last six months, albeit somewhat sporadically. Having read it again today, after a gap of a month or so, it is my sad conclusion that it is more anecdotal and less scientific than when I first read it six months ago. I sincerely believe that the article is so far removed from a scientific approach that it is not worth saving. I suggest that Wikipedia should simply delete it and start again. — Preceding unsigned comment added by Wilson48 (talk • contribs) 21:26, 28 April 2007 (UTC)

I went ahead and replaced your edit of 22:57 (UTC), 28 April 2007 with the more standard Wikipædia "{{POV-check}}" tag. In addition, please note that my goal is to bring this article to GA criteria.

69.140.164.142 05:19, 29 April 2007 (UTC)

Those boxes are, in my experience, generally unhelpful. They will not change anything in the editing. I do sympathise with Wilson48 regarding deletion/recreating - a lot of junk has crept in over time. I would support a fresh start. JFW | T@lk 05:49, 29 April 2007 (UTC)

As I see it, cautionary notice may be better than no cautionary notice, but I feel that Wilson48's cautionary notice seemed inflammatory, versus the box being more "standard."

69.140.164.142 06:19, 29 April 2007 (UTC)

Over the last few months I have been gradually working on some important additions/references for the article. They are nearly ready and I am just further condensing the wording. The areas briefly covered include studies relating to: exercise capacity, cognitive dysfunction and neurological abnormalities, psychology and psychiatry, post-exertion symptom exacerbation, oxidative stress, immunology, plus minor additions to several other sections. It won't necessarily fix the neutrality issue, but at least add references for some of the existing content. Lots of research has been done and isn't being mentioned in the article at all. After that I will focus on cleaning up the article and/or condensing content. - Tekaphor 06:33, 29 April 2007 (UTC)

I think we should avoid boxes. See also my comments below. JFW | T@lk 12:04, 29 April 2007 (UTC)

Another concept I've thought in terms of would be to construct a parallel article under this talk page. A completely new, optimized structure, and create fresh content as well as port over usable content, and then with enough approval and completeness, switch to the new page. I have to agree about a seeming decline in quality despite our now referencing sources. When I first thought to look here maybe a year or so ago, it was a place I pointed people to. Not anymore. -- Strangelv 19:46, 1 May 2007 (UTC)

Many thanks to all for your comments. I have again looked at the article, after a gap, and my criticism of it still applies. It is confusing, contradicts itself in different sections, and is the ultimate "Curate's egg" - only good in parts. I would agree with Strangelv, that it is not an article for those who wish to learn about CFS. I entirely agree with Jfdwolff, in his/her suggestion below, that the only way forward is to embrace the controversy by making it explicit. Then no-one could argue that the article does not tell it like it is. As to the proof of two views or "camps", no proof is required beyond re-reading this page and the history page. As to how to achieve this, I would support writing a new page from afresh with the MEDMES (?spelling) template as suggested. I would suggest a title of "Chronic fatigue syndrome controversy explained". I was tempted to start this off, but suggest we need a consensus to agree this way forward before embarking on it. Wilson48 13:48, 5 May 2007 (UTC)

Fatalities?

I think the "deaths" section should be merged into the sub-section on "outcome," or in the alternative, the material in "outcome" regarding fatality should be merged into the section on "deaths." 69.140.164.142 06:19, 29 April 2007 (UTC)

I agree with moving the "deaths" section into the "outcome" section (as a subsection). - Tekaphor 06:36, 29 April 2007 (UTC)

It belongs in a section on "prognosis". JFW | T@lk 12:04, 29 April 2007 (UTC)

fMRI

A paper on MRI in CFS: PMID 15240435. JFW | T@lk 12:04, 29 April 2007 (UTC)

Changes to intro

I reworked the intro a bit with a few specific goals in mind. First, I tried to make it a bit more concise. Second, there seemed to be a consensus on this page that the existance and scope of the controversy should be well addressed in the intro, so I emphasized that a bit more. Third, I took the terms "myalgic encephalomyelitis" and "post-viral fatigue syndrome" out of the first sentence, since the assertion that they are synonymous with CFS, or are appropriate descriptions given the level of etiologic evidence, is highly controversial. They still appear in the opening section, but their controversial nature is noted. Fourth, aside from the above-mentioned two terms, I tried to leave only non-controversial assertions in the intro, since it is really next to impossible to wade into the minutiae of diagnostic criteria, for instance, in a manner which is both NPOV and appropriately concise for the intro. Feedback & improvements are welcome. -Rustavo^{Talk/Contribs} 23:52, 7 May 2007 (UTC)

Good job, now we may get somewhere. Guido den Broeder 09:18, 8 May 2007 (UTC)

That does sound like an accurate depiction of the situation in 2007. Way to go, Rustavo. JayEffage 10:04, 8 May 2007 (UTC)

This is exactly what I had in mind - external sources supporting the general perception of a dichotomy in views. JFW | T@lk 21:46, 20 May 2007 (UTC)

Genetics vs. Gene expression

The two terms have been used interchangably by authors on this page, but they are very different concepts. In common medical usage, "genetics" refers to DNA sequences, and to say that a disease is "genetic" or has a "genetic componant" implies that patients have a polymorphism or mutation in their DNA. Usually, these diseases are hereditary (may be dominant or recessive). In contrast, "gene expression" refers to genes being activated in cells to make proteins, a process that varies between all cell types and changes in response to innumerable internal and external stumuli. There is no disease in existance which does not involve changes in "gene expression", but that does not make them genetic diseases. -Rustavo^{Talk/Contribs} 12:27, 11 May 2007 (UTC)

Thanks for fixing this section. I had contemplated deleting that introduction when creating the gene expression subsection; I knew there was a difference between genetic mutations and gene expression, but did not realize that "genetic component" specifically implied genetic disease so I left it. All the studies mentioned in gene expression are clearly about "gene expression", but I found 7 studies and 1 review not yet mentioned in the article that seem to suggest "genetic polymorphisms" in CFS too, unless I am mistaken?[PMID 17419822][PMID 16316396][PMID 16762155][PMID 14592408][PMID 16610957][PMID 15221876][PMID 16610949][PMID 15554358] - Tekaphor 15:56, 11 May 2007 (UTC)

Yes, these studies do discuss what are claimed to be genetic associations. I couldn't get access to the review article, which seems to be in a pay-to-publish (rather than peer-reviewed) supplement to a journal. Of the studies I could access, they seemed to be very small, and I don't believe any of them validated their findings in an independant cohort (generally the gold standard for all medical association studies). This isn't to say they aren't valid or interesting, just that they are probably too preliminary to be discussed at any length in a Wikipedia article. -Rustavo^{Talk/Contribs} 22:16, 11 May 2007 (UTC)

More research

Please visit User:Tekaphor/CFS_research to review the rest of the recent research I have done on CFS, which I think should be included in the article, but is too much to fit into the current article without forking. - Tekaphor 16:35, 11 May 2007 (UTC)

Hi Tekaphor. I'm very impressed at the amount of literature research you've done - you are obviously very dedicated to this project. I must say, I have a very different impression of the changes which would be appropriate and beneficial for this topic's coverage on Wikipedia. My feeling is that this page should be significantly shorter than it is now, and that few if any forked pages should be created which discuss CFS as a medical condition (forks which approach CFS from another perspective, such as "History of chronic fatigue syndrome", might be more acceptable.)

You seem to be attempting to turn this page, or network of pages as you propose, into a sort of enormous meta-review of all research on CFS. I don't think that is appropriate for several reasons. First, the longer and more complex an encyclopedia article gets, the less useful it is for the casual reader. Second, any attempt to piece together innumerable bits of data from primary sources in the medical literature will require an orginal synthesis of material, which is in violation of Wikipedia:No original research. This creates a problem because no matter how fair you try to be, you will be imposing your own interpretation on the material. Other editors might draw very different conclusions about the imporatnce and meaning of various individual studies you cite. The number and types of studies you choose can also run afoul of the "undue weight" clause of NPOV. The way these problems are avoided in most disease articles is to focus on citing the most authoritative secondary sources available, so that independantly published experts have already performed the synthesis and determined the reletive importance of topics. This is more challenging in the case of CFS, since authorities disagree on so many things, but that is even more reason to be cautious about using primary sources. Only if a primary source represents a true landmark study (independantly cited as such by authoritative secondary sources) is it appropriate to discuss it at length on Wikipedia. I'm not telling you to abandon the huge list of citations you've accumulated, but in general, I think it is best to make very general statements, followed by in-line links to primary sources, without going into detail about those sources themselves. For example, this could be the complete statement on the genetics of CFS (using studies you cited):

"Preliminary studies have suggested that the risk of developing CFS may be influenced by polymorphisms in genes affecting the nervous, endocrine, immune, and/or cardiovascular systems."

To discuss these studies in any more detail would probably require "special expertise," and thus be impermissable. -Rustavo^{Talk/Contribs} 23:09, 11 May 2007 (UTC)

Thanks for taking the time to review it and give feedback; you made some important points. Initially I intended to educate myself more about CFS and assist the article with content that wasn't already covered, but as the weeks continued the size and complexity kept growing; so even if only a small amount of what I did gets used in the article, that's fine by me. I tried to search for some definite findings for CFS; but you're right, it's ended up more like a meta-analysis, which I don't have the expertise for. I am currently dedicated to the article, but that amount of work was a one off. The example you gave above was well done; perhaps a similar approach could be applied to just the reviews I cited? - Tekaphor 08:19, 12 May 2007 (UTC)

I agree with Rustavo. There are thousands of published articles on CFS, with more coming every month, so this way you can keep going for a while, too. The lemma has already grown so long that it won't even load speedily on my pc. While by themselves most references are interesting to me, and Tekaphor's additions are quite conscientious, for the average reader this is simply too much information. My suggestion would be to create a separate lemma on CFS literature and put a large part of this lemma there. Guido den Broeder 09:02, 21 May 2007 (UTC)

No, please no subpages about the sources. What I recommend is using secondary sources (e.g. clinical or systematic reviews, meta-analyses) that carefully delineate which studies are actually relevant. Many of these studies are highly preliminary and are in urgent need of confirmation, while others are methodologically weak.

The CFS research is so dreadfully fragmented that one cannot gain an impression of the research by doing a mere PubMed search. JFW | T@lk 13:12, 21 June 2007 (UTC)

That would be the way to build the main CFS page. A CFS Literature page could then list, group and perhaps rate the original research behind the secondary sources. Of course, there are alternatives: a Wiki Book or even an independent Wiki entirely devoted to CFS. Guido den Broeder 17:31, 21 June 2007 (UTC)

Fringe science

I don't want to get into an edit war here, but the sections that I deleted (and was subsequently reverted) really violates undue weight issues. Vitamins are what anyone should be doing if their diet is deficient. I couldn't find any of the sources that specifically said, "take vitamin B12, and it cures CFS." In fact, it doesn't. And the mitochondrial stuff really belongs with the naturopathy crowd. There's no serious evidence. And one or two articles from less than legitimate sources is not convincing. We can't have people read this article and think "oh yes, that works." That's why we are careful of undue weight. Of all the treatments, maybe these fringe thereapies deserve a line, maybe. That's all. Orangemarlin 20:29, 21 June 2007 (UTC)

Good work. - Tekaphor 02:24, 22 June 2007 (UTC)

Second on the good work. Thedreamdied 00:35, 23 June 2007 (UTC)

It's not that simple.

• While vitamin B12 does not cure CFS, there are two relevant issues, One is deficiency, with is a differential diagnosis, but also occurs as comorbidity in CFS. Another is that large dosages (usually by injection) have improved health for some patients. While the latter is still experimental it is also common knowledge in the patient community.
• The Valganciclovir result is genuine, but needs confirmation. It is a heavy drug and one should be extremely cautious.
• Ampligen study results, otoh, have sometimes been 'manufactured'.
• Gammaglobulin is genuine but rarely used in CFS (perhaps unjustly).
• As with vitamin B12, there are two issues with Carnitine. First, many ME/CFS patients have (acyl)carnitine deficiencies (or at least low values, there is a debate as to which values are still to be considered normal). There is plenty of research showing this. Second, extra large dosages of levo carnitene have helped some patients significantly, but this is still experimental. Note that a mitochondrial disorder, relating to the ATP cycle and channelopathy, is part of the illness. This is core, not fringe.
  • 1994 Kuratsune H, Yamaguti K, Takahashi M, e.a., "Acylcarnitine deficiency in chronic fatigue syndrome", Clin Infect Dis 18(suppl) 11:S62-7
  • 1998 Kuratsune H, Yamaguti K, Lindh G, Evengard B, Takahashi M, Machii T, Matsumura K, Takaishi J, Kawata S, Langstrom B, Kanakura Y, Kitani T, Watanabe Y., "Low levels of serum acylcarnitine in chronic fatigue syndrome and chronic hepatitis type C, but not seen in other diseases", Int J Mol Med. Jul;2(1):51-6
• Detoxifiers for ME would help if they existed. Mercury poisoning from amalgam fillings is genuine, but is not ME/CFS, nor is any other metal poisoning (copper, uranium) even while there is an overlap in symptoms.

Guido den Broeder 08:45, 23 June 2007 (UTC)

Undue Weight!

Compared to what! little works in CFS, certainly few conventional treatments or drugs help patients, if researchers find substances and patients find alternatives that help then the community wants to know. As for Vitamin B12 and homocysteine (hardly fringe science)if researchers such as Demitrack find it disordered and together with physicians such as Cheney advocate B12 treatment and report same in the literature, two giants in CFS research and clinical application, then its relevant in this article, until proven otherwise. I did post these with a peer reveiwed refernce that says B12 helps in CFS, before it was reverted. No one claims anything cures CFS, but do report what science finds helps. Whether or not editors such as orangemartin knows the literature or cant read it in the abstract, If you are going to accuse such people of fringe science then better read the articles, I am sure others here know these authors credentials their contribution to CFS research/treatment and even to the current CDC findings, and the bias displayed in comments to the contrary. Who are you to determine what is or is not fringe science here anyway, and how much line space can be allocated to any edit? (no Wiki core policy) and why is that relevant here if peer reveiwed references are used, and is CFS therefore a fringe disease, as there is no test for it ? some perspective needed.Jagra 07:34, 29 June 2007 (UTC)

Only one of the sources you provide, even suggests a link, and even then it's only from a small sample. The problem with your edits is that they're largely WP:OR. ornis 08:29, 29 June 2007 (UTC)

This is getting old. Just because you throw in a load of what appear to be references, it is clear that you either are engaging in quote mining or you are totally misinterpreting the references. Some of the references are review articles wherein one sentence describes B12 or whatever, but the 20,000 other words in the article discuss everything else. Your edits are becoming problematic. You cannot give paragraphs of information about untested, unproven, and frankly dangerous alternative therapies. These are medical articles. If you want to write about pseudoscience, once again, write in the Herbalism article. I'm sure this stuff will be greatly appreciated there. But in this article, we rely upon references that do not rely upon fringe therapies, or worse yet, assume a fringe therapy out of good articles. Orangemarlin 14:55, 29 June 2007 (UTC)

See if this is quote mining or origonal research. As to undue weight claims concerning vitamins and supplements, in this article. The literature indicates otherwise and that CFS patients, find almost as much benefit from them as drugs.Jagra 01:08, 1 July 2007 (UTC)

<indent reduce>"We clinically evaluated and classified 90 subjects as CFS during the study and also collected clinical data on 63 who never described fatigue. Pain relievers and vitamins/supplements were the two most common agents listed by both groups. Vitamin and dietary supplements constituted the second most frequently identified category of drugs used by CFS and non-fatigued subjects. In a previous analysis of vitamin/supplement use by 30 CFS subjects attending a referral clinic, 89% of patient subjects versus 40% of control subjects reported use of these agents [12]. These observations support the concept that the morbidity associated with CFS leads patients to seek relief of illness by the use of prescription and non-prescription medications and supplements The pursuit of symptom relief in the absence of supportive clinical trials is a strong indication of the desire of CFS patients to improve or to alleviate their symptoms and should serve as impetus for further research into the origins, consequences, and treatment of fatiguing illnesses”. Witicha population study PMID 14651754 “Relatively few research studies or clinical trials have been done on prescription drugs, supplements or herbal remedies for treating chronic fatigue syndrome. In fact, no prescription drugs have been developed specifically to treat CFS.” http://www.cfids.org/ In this environment the expectation that the gold standard of - large scale, randomised, placebo controlled, double blinded studies, etc are to be referenced, is frankly ludicrous. That is not to say they are not needed, but in their absence, any peer reviewed science, or clinical trial that supports or debunks any drug or supplement is worthy of inclusion in this article. More than that is a need to support the call for further study where preliminary science indicates. Preliminary science is not fringe science in the absence of other evidence. The lack of evidence here is not evidence of lack in this field but more like evidence of lack of funding. Treatment is the sharp end of this article, I count around 90 lines assigned to drug/medications that largely do not work, and only 45 limes to supplements, any attempts to limit further the space allocated to supplements/vitamins and supporting science, can thus only be seen as bias and not a Neutral Point of View NPOV.Jagra 01:08, 1 July 2007 (UTC)

Please see pseudoscience. Your commentary is typical of those who push pseudoscience, specifically denying the use of scientific method through double-blind clinical trials. Orangemarlin 01:55, 1 July 2007 (UTC)

Just read the study. A telephone survey. ROFLMAO. I can't stop laughing. A telephone survey????!!!!???? OMG. Orangemarlin 01:57, 1 July 2007 (UTC)

Yes indeed and under the auspacies of The CDC Atlanta what's more, if you have any evidence to the contrary, please post it, I and others would like to see it. And once more refrain from personal attack I have never denied the use of scientific method and would like to see more in CFS, but the attitude that you display above is one used by others to divert research funds elsewhere. I respect Orin's comments as more balanced, and yes there only small studies that have to be cited, at this time, and these give impetus to further research, but that is better than none against. Where a paper has no abstract for ease of checking, knowing that visiting a medical library is derigor here, I will often also cite a reveiw that expands on the relevant point.Jagra 03:25, 1 July 2007 (UTC)

Extracts from Orin's talk page which go to show POV and lack of neutrality on Orangemartin's part at least, and attitude to the limited science in CFS, only consensus demonstrated here, is before it starts, who's next? Jagra

The CFS article is filled with junk. I'm editing, but a couple of POV warriors are reverting. Orangemarlin 21:32, 21 June 2007 (UTC)

Lots of CFS patients use vitamins and claim they help, but all the placebo-controlled trials show that vitamins have absolutely no effect. IV injections of B12 have had remarkable anecdotal evidence of improvement, but no controlled trials have actually evaluated them as far as I am aware. Most likely the placebo effect has a lot to do with this.

The bottom line is this: unless the treatment has a large-scale (or at the very least medium scale) placebo-controlled clinical trial behind it, then there is really no point discussing it in an encyclopedia article. --Sciencewatcher 22:36, 15 August 2007 (UTC)

Well, you could put it in some new age encyclopedia. There's a common fallacy that we have a Western medicine bias vs. Eastern medicine. Well, what we really have is a science vs. pseudoscience bias. And medicine is medicine. I don't think that any physician, and I'm one, would not use something just because it came from India. If sitting a crystal on a patient's heart would cure heart disease, I'd be supportive. But time and time again, clinical trials do not support these pseudoscientific theories. Yes, there are some notable herbs that work--echinacea for example. Pseudoscience can be described as such, and then be allowed in an NPOV article (as long as we don't give it undue weight). OrangeMarlin ^{Talk• Contributions} 23:20, 15 August 2007 (UTC)

Herbalism

Time to clean up this pseudoscientific piece of dung. Hopefully, you're up for it!!!! Once more, into the breech. Orangemarlin 14:43, 29 June 2007 (UTC)

Improved, but I cannot believe this crap. Orangemarlin 22:18, 29 June 2007 (UTC)

It's coming along though. Wonder how long before the herbal healer turn up. ornis 22:30, 29 June 2007 (UTC)

Neuro-Endocrinology of CFS

Despite the length of this article I am surprised to find relatively little on the neuro-endocrine aspects in CFS! Therefore there is a lack of context in which to try and communicate the important findings published in a series of 16 papers by the CDC in 2006. Which probably also goes to the lack of explaination of these findings in the article! It is my intention to remedy both of these matters and are preparing an edit on the subject which I will post in the near future, and welcome any sensible discussion. Jagra 10:04, 31 July 2007 (UTC).

Most of those CDC articles are not that great, IMHO. Nonetheless, the neuro-endocrine aspect is important. Regards, Guido den Broeder 15:43, 31 July 2007 (UTC)

Jagra, perhaps you ought to have waited for a few more responses. How about leaving messages on the talkpages of some major contributors? JFW | T@lk 22:46, 9 August 2007 (UTC)

Perhaps he might choose English over jargon as well. &#0149;Jim62sch&#0149; 23:04, 9 August 2007 (UTC)

Orangemartin, Case for relevance is made by CDC not me, of 15 references all but 4 are about chronic fatigue, and of these at least two discuss CFS in papers, other 2 go to explanation of findings for average reader sorry if you cannot understand, please define your problem, so i can discuss.Jagra 00:14, 10 August 2007 (UTC)

Jim 62 please define 'jargon' you do not understand, perhaps you mean abbreviations and these are defined in article text Jagra 00:14, 10 August 2007 (UTC)

Jagra, your writing is, at best, difficult to read. Second, your points are irrelevant to the disease. Third, once again, you list a bunch of references, none of which support anything you say. I'm convinced you search for references by keyword, and if it happens to mention your keyword, you think it supports your needs. But I guess my use of consumer magazine articles offends your Jungian sensibilities. LOL. OrangeMarlin ^{Talk• Contributions} 00:42, 10 August 2007 (UTC)

<indent decrease> Orangemartin lets not get personal now! but to address your comments one by one, -Points irrelevant to the disease, this sounds more like your POV than fact, I prefer to beleive CDC and thats 7 of the references that you apparently disagree with when you say citations irrelavant to the disease, care to explain your POV? -Other citations Demitrac, and Cleare, thats 5 more, not only mention CFS in the title but also in the abstract and the papers and are all about CFS if you care to read them as i have, Dont see how you can claim these are irrelavant to the disease? -De Kloet papers are about neuro-endocrine GR function, which is what CDC findings in CFS go to, relevant directly to my explanation of the function of GR and serotonin in Neuro-endocrine system and go to significance of CDC findings re GR and serotonin changes in CFS. Cant see how that is irrelevant to disease? -The MC Ewen papers are about explanation of Allostatic Load, which go directly to the CDC finding of altered indices in CFS. The full paper discusses the relevance to CFS and provides 5 other references to support this. Dont see how this is irrelevant to the disease? -So in summary all references are relevant to the disease in the context of CDC findings, it seems to me you either dont understand these matters or have a problem with CDC findings, either way your POV seems to be the issue here? Jagra 02:42, 10 August 2007 (UTC)

Let’s see orangemartin, from comments you have made on this page, you do not accept epidemiology as valid science, you label it pseudoscience, and find it laughable even when conducted by the CDC Atlanta. Your mantra is the pharmaceutical gold standard and you consider nutrition and botanical science irrelevant. This attitude has been discussed on this page and defined there as a philosophy. As you will not discuss further I have to presume you consider the CDC findings which intergrated epidemiological findings with laboratory and clinical findings, using a mulidiscipline team of world renowned reseearchers, as defined here and here as my POV and my pushing fringe theories, accusations made by you here

Perhaps this is the discussion that needs to be held, are the CDC findings valid science and worthy of inclusion in the article? I invite the community to comment. Jagra 06:55, 10 August 2007 (UTC)

Jagra, it is not a matter of my comprehension, it is a matter of what our task is in writing an encyclopedia: what we write needs to be clear to the layperson. Jargon of any type is rarely clear to the layperson. See Wikipedia:Explain jargon. &#0149;Jim62sch&#0149; 09:14, 10 August 2007 (UTC)

Jim 62, I think the ‘jargon’ you keep refering to is the medical science terminology? That is why I went to some length in the edit to link these terms to other Wiki pages that define them, and consider I have dealt with that aspect. You must realise this is a medical science article and if you read any of its content you will need a modicom of such understanding, and I have sought the same level in my edit. Either that or you are unfamiliar with the style of medical abstracts? You will need to come to grips with that if you are to comment on citations. Difficult to read edit! it is a complex subject partularily for those not familiar with the literature, as we have seen, but having said that I take your point and will see if I can simplfy the wording further in a revised edit without loosing its integrity, perhaps you could define further what you find difficult? Jagra 00:54, 11 August 2007 (UTC)

Revised edit on Neuro-endocrinoloigy as discussed above, now posted Jagra 00:55, 16 August 2007 (UTC)

Nope. Still not acceptable. BAd references. Fringe science. Done. OrangeMarlin ^{Talk• Contributions} 01:29, 16 August 2007 (UTC)

Orangemartin your abstruse generalaties are not helpfull and you will need to be specific Jagra 00:55, 17 August 2007 (UTC)

The neuro-endocrinology aspect of CFS is important, and it does need to be added to the article. However I do see some problems with Jagra's edits. The main problem is that your edit goes into far too much detail and scientific jargon for an encyclopedia article - it reads more like a journal article. I would suggest having a shorter summary and making the following points:

- stress has been shown to be a significant contributing factor to CFS.
- stress response (HPA axis and ANS) have been shown to be dysregulated in patients, although research has failed to show a common dysregulation for all patients.
- the stress hormones also regulate/influence the immune system, digestive system and circadian cycles.
- chronic social stress has been shown to cause low corticosterone and weight loss in a subgroup of rats, similar to what is seen in subgroups of cfs patients.
- Selye's experiments showed that long-term chronic stress in rats leads to low corticosterone, shrunken adrenal glands and eventually death. The research is old, but still stands.
- factors influencing stress response include current circumstances, mental attitude, coping strategies, previous life experiences, genetics, etc.

A lot of this is already covered in the "stress and trauma" section, so you might just want to add to it. If you need any help, let me know. There's probably other things you should mention too - the above is really just off the top of my head. --Sciencewatcher 01:27, 18 August 2007 (UTC)

Thinking about it a bit more, here is how I would do it: point out that a subset of CFS patients have low cortisol and shrunken adrenal glands. Animal studies show that chronic stress causes this response in a subset of individuals. This reaction might be influenced by genes and previous life experiences. In humans mental attitude also contributes. Point out how the HPA axis and ANS hormones regulate the immune system, sleep/wake cycle, digestion, energy, etc. In at least a subset of patients, it appears as if CFS is caused by long-term stress resulting in a type of burnout or exhaustion. You don't need to go into great detail about which neurotransmitters or which parts of the brain are involved. Also, stick to solid basic science that is not in dispute. Stress can be blamed for everything and anything, so stick to what has been definitively demonstrated and is not in doubt. --Sciencewatcher 02:59, 18 August 2007 (UTC)

Sciencewatcher, thanks for your support and constructive comments. The edit historical summary could be reduced to the review findings, and if it is considered the terminology is already defined in the broader article, that section could also be reduced.

Stress of course involves more than the psychosocial but also environmental, illness history, injuries, trauma, chronic infections, allergies, etc. many linked to CFS and that leads to the usual arguments on precipitating versus perpetuating events and causative versus oppurtunistic factors. The cumulative measure of the systemic affect of all stressors that modify responses using standard physiological measurements and advanced analytical methodologies seems from the CDC work to correlate with symptoms and neuroendocrine function in CFS without the need to assign any particular stress as causative. Rather it says prolonged adaptive responses cause illness (and that may or may not be in the presence of ongoing stress) an advancement on the stress causes illness approach. Not too sure a type of burnout is a good description, perhaps more a ‘stuck adaptive response’? I agree the current Stress and Trauma section does not set the scene for such findings and could be improved.

The present article as you rightly point out does not as yet include discussion on HPA axis, hormone, ANS and immune system inter-relationships. Given the CDC gene expression findings on the ANS pathways and sympathetics and also have found linkages between heart rate variability, sympathetic changes and immune system dysfunction, there may be a need for such. The changes found in glucocorticoid receptor gene expression is likely profound, as these receptors mediate not only neuroendocrine responses but also mitochondrial function, energy metabolism, essential fatty acid metabolism, amino acid metabolism and immune-factors all related to CFS findings. Again advancement on stress causes changes and directly found in CFS patients, rather than more generally on stress, or in animal studies. Of course the glucocorticoid receptor changes have the potential with the effects on the hippocampus and amygdala responses to be the nexus for the so called competing schools of thought on CFS.

Not too sure about the shrunken adrenal glands as initial studies only on very small sample size suggest it is a subset of a subset, perhaps the end of a spectrum? Plasticity here would suggest changes to the hippocampus also if this was correct? but was not found here suggesting other mechanisms? In addition the CFS hypocortisolism is considered mild (a blunted response) and low dose Synacthen tests may be unreliable.

If the Stress and Trauma section is improved to cover other forms of stress implicated in CFS pathogenesis together with systemic effects and physiological measurement methodologies, then the Neuro-endocrinology could perhaps be merged with the Endocrine dysfunction sectionJagra 01:47, 20 August 2007 (UTC)

The problem is that we don't as yet have a definitive etiology of CFS, so there is a lot of speculation. Perhaps the best we can do in the article is to have a few paragraphs describing the effects of stress. Given that stress has been shown to be an important causal factor in CFS, and given that the symptoms and physiological changes in CFS are consistent with a stress-related illness, it is therefore reasonable to describe how stress can cause the symptoms and changes seen in CFS, even if we don't know the exact mechanism, and even if we don't know for sure whether this is what is happening with all patients. --Sciencewatcher 15:08, 20 August 2007 (UTC)

It seems more probable that the etiology of HPA axis changes in CFS is, like that of CFS itself, multifactorial. Others have said an approach more likely to bear fruit in unravelling the etiology of dysfunction in CFS would involve measuring more precisely the various confounding variables to allow a multidimensional understanding of changes in CFS. The article is largely discussion of such potential variables, which I agree should include stress. It is the heterogeneity of factors that might affect neuroendocrine parameters and the HPA axis function that is confounding in any individual case. However allostatic load indices are a physiological measure of the cumulative affects of such dysfunction on the body at a point in time. In itself it is a measure of stress effects, an aid to diagnosis and is said to correlate to symptoms and HPA axis function of CFS without the need for a precise etiology. Perhaps we can can put together something along those lines you suggest. Jagra 08:01, 24 August 2007 (UTC)

I agree with Jagra that the cause of the changes in the HPA axis are probably multifactoral. Discussion of the HPA axis often focuses too much on psychological stresses when other processes can also be involved. Jagra has put considerable effort into expanding the neuroendocrinological entry, but unless it is simplified and condensed into one paragraph I don't think people here will allow it in the article. - Tekaphor 07:22, 31 August 2007 (UTC)

Protected

Sciencewatcher (talk · contribs) and a horde of anons are edit warring over whether complete resolution is rare. They seem to be blaming the same CDC source. I'm interested in seeing consensus before I unlock the article. JFW | T@lk 11:49, 24 August 2007 (UTC)

"May be rare" isn't exactly definitive. My definition of "rare" would be much less than that. How about we just put in the actual figures from the CDC website ("5% to 10% sustaining total remission")? --Sciencewatcher 14:50, 24 August 2007 (UTC)

Given the vast challenges faced by this page, I am surprised by the intensity of this particular debate. There are so many unknowns with CFS, not to mention many significant scientific debates, which need to be resolved/advanced before "cure rates" should become an issue. Even the CDC admits that recovery rates are "unclear". With many patients suffering from CFS for five, ten, or even twenty years or more, can anyone say with any degree of certainty whether a patient who suddenly feels "better" has had the disease resolve completely or is simply experiencing a partial remission... or a short-term remission... or a long-term remission? And with the etiology of CFS still unknown, a lot of the disagreements on the CFS page are really well before their time.

In the interim we should be satisfied by echoing the CDC simply by stating that recovery rates are unclear, but that a review of data indicates that the disease appears to eventually resolve in about 5% to 10% of patients. (Keep in mind that it may have taken some of these patients fifteen or twenty years to recover.) --- Taroaldo 17:28, 24 August 2007 (UTC)

I agree entirely with Taroaldo. It seems to mme that this protection is unnecessary; just write in the article that "The CDC estimates that between 5 and 10% of sufferers will eventually recover, although rates as high as 80% and as low as 1% have also been claimed", or something similar with better grammar. Thedreamdied 20:41, 24 August 2007 (UTC)

And incidentally, doesn't this talk page need archiving? Thedreamdied 20:42, 24 August 2007 (UTC)

Part of the problem here is that the definition of this illness and who has it are among the sources of severe controversy. If you count people who have other illnesses such as mild depression or almost any unexplained fatigue, it's only natural that you're going to find (potentially far) higher recovery rates than you'll get from a group of patients who all meet the Canadian Expert Consensus Panel definition. I for one have come to trust very little if anything the CDC have to say about some things at this point, including ME/CFS. What are some other figures that we can provide sources from on this? Given that so many arguably or allegedly definitive sources give wildly contradictory information and conclusions, perhaps a large number of citations is inevitable and inescapable. -- Strangelv 21:36, 24 August 2007 (UTC)

I certainly won't disagree with Strangelv's concerns with the CDC, but I really don't think that they've said anything controversial here. They conducted a review of published studies, found varying rates of "improvement" and then declared that the CFS recovery rate is "unclear". CFS is a long-term illness, its etiology is unknown, and there is no blood test you can run and then say "eureka, I'm cured". So this makes establishing specific numbers inherently difficult. The more research I've done, the more I accept the relatively low range of 5% to 10% stated by the CDC. Many patients are suffering for ten years or longer. From the data I've seen, if someone is suffering from CFS for longer than one or two years then their chance of an eventual recovery becomes very low.

And another consideration: many long-term CFS patients have been frustrated with the medical system and have probably given up on it. I'm sure if these patients were tabulated, the recovery percentage would drop even further. --- Taroaldo 23:06, 24 August 2007 (UTC)

A double bike or treadmill test is a straightforward way to test whether a patient has healed. However, this is very rarely done. Figures like these are based largely on what (former) patients are saying and in part on direct observation. Now, since the CDC concept of the disease is very poorly defined I would generally not be ready to trust their figures very much. Reeves in particular seems in the process of totally redefining CFS as a stress disorder. However, this specific figure happens to coincide with other estimates (Jason, for one). The statement that full recovery is rare is true. But it is also known from epidemics that sufficient rest and proper care in the early stage can significantly improve the odds. It further depends on age: children and adolescents have a fair chance to recover fully. Meanwhile, there is no difference between 'recovery' and 'spontaneous recovery', for the simple fact that as of yet there is no known cure. Regards, Guido den Broeder 23:41, 24 August 2007 (UTC)

I agree with Toroaldo: let's put in the estimates from the CDC website and get this article unprotected again. In reply to Guido's comment that there is no difference between 'recovery' and 'spontaneous recovery': spontaneous implies that the recovery is immediate, i.e. one minute you are sick with CFS, the next you are perfectly well. This is very unusual. Most patients recover gradually over a number of years. --Sciencewatcher 14:10, 25 August 2007 (UTC)

Guido - with respect, thats rubbish. A treadmill test is never going to work, firstly because you're unlikely to have the individual's treadmill stats for before they had ME, and also because ME patients, mainly those with less severe ME, would still be capable of running on a treadmill for an extended period, they would simply feel much greater discomfort than a healthy control, and obviously significant aftereffects. Thedreamdied 19:44, 25 August 2007 (UTC)

These aftereffects get measured, with a second test after 24 hrs. Guido den Broeder 19:24, 26 August 2007 (UTC)

Intriguing, I'd never have thought of that. Allow me to retract my 'rubbish' remark. However - i still don't think its a particularly good test. Surely the best test is just to ask if the patient feels that he or she has recovered - i certainly would be able to tell if i was! Thedreamdied 19:39, 26 August 2007 (UTC)

I have gotten a couple of references on exercise (treadmill) tests from Guido. Apparently, study of the efficacy of the "double bike" test is still in progress. I will reserve my opinion on whether it is possible to determine if a CFS patient has been cured until I do some further research, but the notion of using subjective tests to determine if someone has been "cured" concerns me greatly. I say "subjective" because CFS patients are notoriously difficult to pigeonhole, and often their exercise tolerance is wildly unpredictable. A measurement over 24 hours will not be indicative of how the patient will respond two weeks or two months further down the road. And, most importantly, there is no test which definitively indicates a person has CFS, so how can there be a definitive test to indicate that a person no longer has CFS?

Oh, where is a simple blood test when you need one?

BTW, on topic for this section, it seems like there is a reasonable consensus to include a qualified version of the CDC's data. Apparently the disputing anons have vanished. --- Taroaldo 20:47, 26 August 2007 (UTC)

I entirely agree again. And i think the blood test isn't TOO far away... Thedreamdied 23:13, 26 August 2007 (UTC)

Well if you read here blood tests with physiological measurements are an immanent diagnostic, and suggest the article needs updating to reflect this.Jagra 00:46, 27 August 2007 (UTC)

Well - maybe not imminent, this article is about 16 months old. Thedreamdied 12:24, 27 August 2007 (UTC)

Jagra, you keep doing this. You take out-of-date, untested, and out-of-context comments in articles to try to make your point. This has not been published, it has not been examine, and it's nowhere right now. I suggest four years in medical school, four or five years of fellowship in immunology and infection disease, because you are so interested in the areas. OrangeMarlin ^{Talk• Contributions} 12:49, 27 August 2007 (UTC)

Orangemartin you have this annoying habit of trying to play the man not the ball, when you don’t understand the literature, perhaps a refresher course might help!, start here for the findings are published, PMID: 16610949 PMID: 16610957 Jagra 08:45, 28 August 2007 (UTC)

These exercise intolerance tests aren't based on questionnnaires but on observations of heart, blood pressure, breath etc. Guido den Broeder 20:42, 27 August 2007 (UTC)

Yes, but these physiological results only give a snapshot of a person's condition over 24 hours. This does not take into account that many CFS patients can experience huge variations in exercise tolerance over time. --- Taroaldo 21:27, 27 August 2007 (UTC)

No test does, for any disease. The test can always be repeated. Guido den Broeder 22:59, 27 August 2007 (UTC)

Exactly my point. It doesn't determine that a person's CFS has been cured. --- Taroaldo 23:10, 27 August 2007 (UTC)

Given that it is recognized CFS can come on suddenly or gradually, it seems just as probable that it can remit spontaneously or gradually as well, does not seem to have been studied in respect to this. So one person may meet a certain preferred definition initially, but if they improve they may no longer meet that strict definition, but might meet another CFS definition, does that mean they are remitted or cured? surely not. Just as equally they may initially meet one definition, but by degree worsen over time, does that mean they never had CFS initially? What’s in a definition anyway, I see no problem in quoting CDC figures and if really necessary qualifying them. Jagra 00:46, 26 August 2007 (UTC)

I disagree. Strokes come on suddenly but no-one suddenly gets better from then. Without scientific research to back it up, as you suggest, no-one knows. Thedreamdied 12:24, 27 August 2007 (UTC)

Thedreamdied my understanding is that although published 16 months ago, there is a replication study underway at present, any news on that! Personally I do not know about cures or remissions, I think that is a bad descriptor anyway, what seems to be more common are patients who manage their condition well, gradually improving over time extending capabilities to the point that they are able to resume a near normal lifestyle, and maybe even pass a bicycle test? but remain vulnerable if they exceed their personal envelope and trigger fulminations. Jagra 08:45, 28 August 2007 (UTC)

Yes, i agree Jagra. The point being that they haven't really 'recovered' at all... Thedreamdied 15:07, 28 August 2007 (UTC)

But there are also other patients who don't have any symptoms, and who don't have any further relapses after strenuous activity or stress - I'm assuming that this is what the studies are describing when they talk about patients who have fully recovered (the 5-10%). --Sciencewatcher 15:14, 28 August 2007 (UTC)

My personal feeling is that these people probably didnt have true CFS in the first place. But this is just my opinion Thedreamdied 16:21, 28 August 2007 (UTC)

They definitely did. I know some of them personally. There are also quite a lot of accounts of people with CFS who have fully recovered - they are easy to find if you take the time to look, and you can verify yourself that they had CFS by looking at their case history. --Sciencewatcher 23:33, 28 August 2007 (UTC)

Sciencewatcher, what sort of longitudinal follow-up do these cases have? I gather you have observed some over many years? As a ‘stuck adaptive response’, then one would expect the longer they have CFS the less likely such full ‘recovery’ will be, (not to exclude management improvement)? My assumption with the CDC figures was that such cases, occur early on? Jagra 08:07, 29 August 2007 (UTC)

You are wasting your time, sciencewatcher and Jagra, that's Original Research and Wikipedia is not the right place for it. —Preceding unsigned comment added by 192.68.211.173 (talk) 09:54, August 29, 2007 (UTC)

I guess what I am saying is, without the details and definitions a number of interpretations of the CDC statements are possible depending upon perspective. If I can make a suggestion why not say something like, “Full recovery appears to be the exception, although the CDC report recovery rates of 5% -10%” Without the need to define ‘full recovery’ (cure) as long term, normal lifestyle without need for continued management strategies. Or ‘recovery’ (remission) as no longer meets diagnostic criteria, and/or pass cycle test and/or resume near normal lifestyle. Jagra 11:24, 29 August 2007 (UTC)

Jarga, you could say that about virtually and CFS research (and there frequently are arguments over most things that are put in this article). However the CDC figures do correspond with studies that have looked at recovery. You'll need to look at those studies to see what they define as full recovery. Let's just put in the CDC figures, as there is broad agreement here for that. --Sciencewatcher 14:27, 29 August 2007 (UTC)

Thedreamdied told me (on my talkpage) that a consensus version had been reached. From the above conversation I cannot quite distill what the final version is meant to be. Could we decide on this now, please? JFW | T@lk 17:15, 29 August 2007 (UTC)

Happy to use CDC figures Jagra 06:53, 30 August 2007 (UTC)

Yes. CDC figures ok. Basic wording to convey the notion that CDC conducted a review of data which indicates that the disease appears to eventually resolve in about 5% to 10% of patients. --- Taroaldo 07:05, 30 August 2007 (UTC)

My impression is that researchers have found in general the prognosis is less favourable for those with more severe CFS symptoms and/or who fit stricter criteria. Overall, the main characteristics of people I've met with CFS-like history and substantially recovered, were that they didn't experience the full range of symptoms/implications listed in the Canadian consensus document and that they didn't experience "prolonged" post-exertion symptom exacerbation. One told me that she feels worse for several hours after exercise but better the next day as a result, and I found this to be a fascinating insight into the "success" of CBT/GET. Sciencewatcher has previously stated that (even) the Fukuda criterion is too restrictive; this makes me curious about the people Sciencewatcher knew who had CFS and recovered, which criteria did they fit into? Our anecdotes are useless for the article anyway. All criterias involve considerable impairment and CFS patients can be bedbound without fitting stricter criteria, however the prognosis of different criteria can’t be lumped together. Since CFS is currently a diagnosis based on symptoms only, then surely declaring a "cure" would also be symptom based until biological markers are agreed upon? People diagnosed with CFS do recover, but if an ex-CFS patient must constantly apply special management techniques to avoid a relapse while all their friends are living "stressful lives" without ever acquiring CFS, then that is a remission and not a cure. I agree that the CDC figures are OK in the article. - Tekaphor 10:11, 30 August 2007 (UTC)

GET is not widely viewed as a safe or effective treatment for CFS. CBT can be highly effective in treating some of the side effects of long-term illnesses (depression, life outlook, anhedonia, etc.), but it is irrelevant to the wider pathological elements. --- Taroaldo 18:49, 30 August 2007 (UTC)

tekaphor: I have talked to a number of people who have recovered. One person (known personally to me) met all of the various criteria, and had all of the features listed in the Canadian criteria except pain (which is not required for a diagnosis under the criteria). Other people have been bed-bound or in wheelchairs and have recovered. The reason I advocate less stringent criteria is because there appears to be no single set of symptoms for CFS, so if you have a very strict criteria you will inevitably cut out a lot of CFS patients. From what I have seen and researched, both severe and mild CFS are essentially the same illness, and it can have widely varying symptoms. If you want to read a lot of stories of people who have recovered, I would recommend http://alexbarton.co.uk/cfsrecovery-stories.htm (and no, I'm not Alex Barton and I'm not affiliated or related to her in any way). Of course they are all just anecdotal accounts, but you get a good insight into the illness by reading about people who have recovered. And as I have said elsewhere, people who have recovered can live normal lives without having relapses - that is the definition of full recovery (or at least my definition). If you have a relapse after a year or two, or you have to lead a restrictive life, you are not fully recovered. --Sciencewatcher 21:23, 30 August 2007 (UTC)

Sciencewatcher, if that person didn't experience pain, then they didn't "have all the features" of the Canadian criteria, and pain is only optional here when the onset is infectious. I'm not disagreeing that people diagnosed with CFS can and do recover, but when I read recovery stories nothing really stands out that separates them from those who didn't recover; with both groups trying X Y Z etc. I agree that adopting stricter criteria runs the risk of excluding a lot of patients who would be diagnosed with "idiopathic chronic fatigue" (which seems more amendable to intervention), but using slacker criteria also has its controversial problems. Many illnesses have seemed "essentially the same" until new understanding has properly discerned the contrasts. The "issues with definitions/criteria" section of the article highlights that different criteria/symptoms/onset affects the prognosis and treatment response; this is important to consider. - Tekaphor 07:11, 31 August 2007 (UTC)

I didn't think it mattered for pain whether the onset was infectious or not. In this case the onset was infectious, although again I personally don't think that matters: from what I have seen, infectious and non-infectious onset appear to be the same illness. And I agree with you that there isn't really any discernable difference between those who have tried things and recovered versus those who have tried the same things and not recovered. --Sciencewatcher 14:26, 31 August 2007 (UTC)

NICE Guideline

In case you have missed it, the NICE Guideline for CFS/ME is out: [13]. Guido den Broeder 20:42, 27 August 2007 (UTC)

NICE guidelines published

http://www.nice.org.uk/page.aspx?o=449472

A new guideline to improve the diagnosis and management of chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy) (CFS/ME) in adults and children is launched today (22 August).

(NICE is the National Institute for Health and Clinical Excellence)

http://guidance.nice.org.uk/CG53

Summary This guideline is about the care of people with chronic fatigue syndrome, which is also called myalgic encephalomyelitis (or encephalopathy), in the NHS in England and Wales. Throughout this booklet we refer to the condition as CFS/ME for short. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with CFS/ME, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in CFS/ME.

The guideline aims to help you understand the care and treatment options that should be available in the NHS.

(PLEASE add this link as this is a big step in the UK and useful for others too).

RichasAA 22:27, 28 August 2007 (UTC)

Thank you for getting a username just to tell us this. Is there anything else on the subject you'd like to share with us? JFW | T@lk 17:16, 29 August 2007 (UTC)

I have just read the quick reference guide. I am quite impressed by the way this difficult problem has been tackled, and the sensible advice to general medical practicioners on how to investigate symptoms. I believe this guideline should get substantial coverage in this article; for instance, the list diagnostic criteria could well replace our present framework. JFW | T@lk 17:30, 29 August 2007 (UTC)

You can't always please everyone... JFW | T@lk 17:53, 29 August 2007 (UTC)

True that JFW. And of all stakeholders, the patients really are the least concern in a medical guideline. —Preceding unsigned comment added by 82.135.68.65 (talk) 19:04, August 30, 2007 (UTC)

I also had a look at them, and I agree that they are very good in general. I would have preferred them to have acknowledged the etiology as being a psychosomatic illness caused by factors such as stress, but they have chosen to not discuss any potential etiology. In my view this is a cop-out and is bad for the patient - after all, how can the patient cure the problem if the doctor is vague as to the causes? Most doctors will discuss stress and lifestyle factors with their patients anyway, but it would just be good to have this present in the guidelines. --Sciencewatcher 18:38, 29 August 2007 (UTC)

With respect, you are talking absolute rubbish. No-one knows why CFS happens, but 'stress' is most definitely not the cause. Research indicates low-level viral infection and immune dysfunction. To have put such a thing in official guidelines would enforce the kind of ignorant stereotyping at patients that has endured for so long. Thedreamdied 20:34, 29 August 2007 (UTC)

If stress is most definitely not the cause, how come it is the only significant causal factor that has been identified for CFS? There is no research showing that low-level viral infection and immune dysfunction are causal factors in CFS, but conclusive evidence showing that they are symptoms of chronic stress. Please don't accuse people of talking "absolute rubbish" in future just because you don't like what they're saying. --Sciencewatcher 21:42, 29 August 2007 (UTC)

And you shouldn't blame people for reminding you of your intellectual shortcomings and calling a spade a spade. Your above statement consitutes "absolute r******" (not my choice of words) from an epistemological point of view as there is Dubbo Infectious Outcome Study , which states: "The syndrome [CFS] was predicted largely by the severity of the acute illness [different infections] rather than by demographic, psychological, or microbiological factors" (Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group). That renders your point "stress as the only causal factor" ,as implied by your rethorical question, invalid. Dude, I don't know what science you are watching, but I think you are on the wrong wiki page. Try burnout instead. —Preceding unsigned comment added by 192.68.211.173 (talk) 13:31, August 30, 2007 (UTC)

Yeah, this one could get interesting! Stress contributes to a lot of heart attacks and cases of hypertension, but people don't run around calling those illness psychosomatic. Sciencewatcher, where is it stated that stress is the only significant causal factor identified for CFS? The credible studies I have read on psychosomatic links are not definitive (just like everything else with CFS). On another front, playing up words like "psychosomatic" in literature intended for diverse audiences is not wise, particularly in the absence of definitive links. CFS patients have been stigmatized for decades by the uneducated lay-public and by uncaring or disinterested physicians: it's no wonder that they are, perhaps, a bit sensitive to labels. BTW, why would NICE 'acknowledge the etiology as being a psychomatic illness'? I must have missed the press release announcing that the etiology of CFS had been determined! --- Taroaldo 07:44, 30 August 2007 (UTC)

After an initial read of the guidelines, I was impressed with the way they handled some difficult issues Viz, First sentence, there is insufficient evidence for --- next sentence but patients report benefit from--- I think we could learn and do more of this approach. Disappointed they did not find for increased sensitivity of patients to drugs, restricted search criteria! as for instance CFIDS association report and advise on such. Worry about recommendation on use of tricyclics even low dose, without such caveats and/or need for cortisol monitoring. Tanya Harrison dissent report interesting read, although a lot seems to be medico/political UK issues, these do spread! Support her in her summary reasons for dissent and concern about inadequate diagnostic workup tests. Jagra 08:16, 30 August 2007 (UTC)

Intellectual shortcomings, eh? Stress as a significant causal factor is discussed in this wikipedia article (look at the stress and trauma section). I would suggest reading it (if you have the intellectual capacity, that is, 192.68.211.173). Infection is another factor, but it could be secondary to stress - we don't know at this time. Or it could be another stress factor, as infections influence the HPA axis in the same way as other stresses. All the evidence points to stress being the single most important factor, and to CFS being a stress-related illness (unlike other illnesses where stress just makes them worse). --Sciencewatcher 14:27, 30 August 2007 (UTC)

Yes, intellectual shortcomings. "All the evidence points to stress being the single most important factor." That is a statement. And it is wrong. Proof: The Dubbo infectious outcome study is part of the evidence. It does not point to stress as being the single most important factor. It points to the severity of an acute infection as being the single most important factor. Therefore, not all evidence points to stress as being the most important facot. qed. Are you sure you are talking about CFS? —Preceding unsigned comment added by 192.68.211.173 (talk) 14:55, August 30, 2007 (UTC)

For the record - most objective observers will sooner or later realize that the CFS research base in its entirety is jagged and scatterd over just about every medical domain. By no means is it collectively "pointing" anywhere near a discrete entity or definitve medical concept. —Preceding unsigned comment added by 192.68.211.173 (talk) 16:12, August 30, 2007 (UTC)

I don't see stress listed as a factor in the Dubbo study, so how do you come to that conclusion if they didn't even look at stress as a factor? --Sciencewatcher 19:23, 30 August 2007 (UTC)

Who says they didn't look into stress? You, sciencewatcher? Their conclusion is that "psychological factors" are secondary to the severity of the initial infectious illness. By the way, sciencewatcher, would you mind telling us how old you are? —Preceding unsigned comment added by 82.135.81.46 (talk) 16:52, 31 August 2007 (UTC)

I'm not saying they didn't look at stress - I'm saying I don't see it listed in the abstract and I don't have access to the full article. "psychological factors" could mean many things. What psychological factors did they look at? I don't see what my age has got to do with anything. --Sciencewatcher 20:14, 31 August 2007 (UTC)

I too hope that everyone here has read the "stress and trauma" segment, along with the eleven other segments in the section "proposed causes and pathophysiology". (And I'm sure more could be added.) We can debate almost every aspect of CFS ad infinitum because there is a wealth of competing research and so little that is certain. --- Taroaldo 19:15, 30 August 2007 (UTC)

Also have a look at the Onset section, and the references there. In PMID 9201648 85% of CFS patients had stressful events in the year preceeding their illness, compared to 6% of controls. There was an apparently infectious illness preceeding CFS in 72% of patients (but defininte infection was only found in 7%). So in this study stress was the most important causal factor, higher than apparent infection. It was a smallish study (134 patients and 35 controls), however the results have been replicated in other studies, and 85% versus 6% is highly significant even in a study this size. --Sciencewatcher 19:58, 30 August 2007 (UTC)

Whether or not ‘stress’ in the last 12 months was the precipitating factor in any cohort can be argued until the cows come home, however the lifetime stress effects in CFS patients by physiological measures, have been found high compared to controls, and that shows stress is more of a factor in patients, even if not precipitating.. Pmid 16610956 Pmid 16610958So I don’t think it can be argued that stress of all types is not part of the disease, particularly as perpetuating factors, and that is what matters in management strategies. Jagra 08:20, 31 August 2007 (UTC)

Once again Jagra, your interpretation is incorrect. Moreover, stress is a poorly defined psychology. And furthermore, the disease may induce the stress. OrangeMarlin ^{Talk• Contributions} 13:07, 31 August 2007 (UTC)

All of the studies that have looked into it have shown that CFS patients are significantly more likely to have stressful life events in the year preceeding the illness. Certainly CFS does cause more stress, and that can be a factor that causes the disease to persist, but stress does seem to be a sifnificant precipitating factor. And stress is not really "poorly defined": you can very easily measure current stress by looking at the levels of cortisol and adrenaline in the blood. --Sciencewatcher 14:22, 31 August 2007 (UTC)

LOL. Good one. OrangeMarlin ^{Talk• Contributions} 14:59, 31 August 2007 (UTC)

Adding information here. Sciencewatcher, first of all please don't encourage the pseudoscientific POV-pushing of certain editors. Second, I think that levels of cortisol and adrenaline are measurements for stress, but only over short-term. How can you do a retrospective study and measure stress levels? I don't like these research studies, because they are, well, crap science. CFS is poorly understood, and every time I read these studies, someone will go overboard. Remember Occam's razor. Often the best explanation is the simplest one. Stress may cause CFS, but what if the stress is induced by an underlying symptomatic disease state, like a viral infection. Excuse my laughing at your comments, because you're just enabling some of certain editor's POV pushing. You appear to be someone who doesn't like urban BS to rule medical knowledge, and others don't. OrangeMarlin ^{Talk• Contributions} 15:06, 31 August 2007 (UTC)

As far as I understand, the studies looking into stress as a precipitating factor asked the patients about stresses that happened in the period prior to the illness. They did not measure anything because, like you say, there is no physiological test for long-term stress. All of my posts on wikipedia are aimed at reducing urban BS and pseudoscientific POVs. I don't see how this is "crap science". Stress is the simplest explanation which fits CFS. No viral infection has been found, so you're relying on "stealth viruses", which is essentially crap science... --Sciencewatcher 20:14, 31 August 2007 (UTC)

Stress is a factor because it weakens the CNS defence against infections. It does not cause ME/CFS, but it gives an infection the opportunity to pass the blood-brain barrier and cause ME/CFS. By the way, keep in mind that stress is not a psychological phenomenon. It is physiological response. If it lasts, it injures the hippocampus. Guido den Broeder 23:46, 31 August 2007 (UTC)

Orangemartin, Stress is not just a psychological phenomenon, otherwise how do you explain environmental stress, stress from trauma, physical challenges etc . It also seems you are saying that the CDC are pushing fringe science with allostatic load studies, and anyway they have got it all wrong, as the stress is caused by the disease? Let me quote from here

“The primary hormonal mediators of the stress response, glucocorticoids and catecholamines, have both protective and damaging effects on the body. In the short run, they are essential for adaptation, maintenance of homeostasis, and survival (allostasis). Yet, over longer time intervals, they exact a cost (allostatic load) that can accelerate disease processes.” “The bottom right panel of Figure 1 describes a situation in which the hormonal stress response is inadequate to the needs of the individual genotype, resulting in excessive activity of other allostatic systems such as the inflammatory cytokines, which are normally contained by elevated levels of cortisol and catecholamines”. “ Comparable human disorders involving lower-than-needed cortisol include fibromyalgia and chronic fatigue syndrome.” This paper indicates allostatic load is dysfunctional allostasis over longer time periods that leads to diseases such as CFS. Not that diseases like CFS cause allostatic load? although the added stress may well perpetuate it. Allostatic load studies are not fringe science, a better term is an emerging science and the CDC endorsement and that of the quality journals they publish in is evidence of that. Jagra 07:46, 1 September 2007 (UTC)

The NICE Guidance, meanwhile, does (at least) one thing that will cause a lot of turmoil: it redefines the disease to include a multitude of patients who really suffer from entirely different conditions. This is done by requiring only a single primary symptom where the CDC thus far required four - which is already considered too wide a definition. Genuine ME/CFS patients will now be only a small minority among the patients that receive the label, if this guidance is followed. Guido den Broeder 23:55, 31 August 2007 (UTC)

See http://www.drrant.net/2007/08/being-nice-about-me.html for some corroboration from unexpected corners. Avb 12:44, 1 September 2007 (UTC)

It doesn't necessarily "redefine the disease to include a multitude of patients who really suffer from entirely different conditions". As I've stated before, my own view is that all of these patients have CFS. However there is no firm evidence either way at the moment. --Sciencewatcher 14:45, 1 September 2007 (UTC)

Looked again at NICE recommendations on GET 1.6.2.16, and can see why it is so controversial! Says (a) establish baseline activity level that does not exacerbate symptoms and increase from that level (b) sustain that level for a week and then increase by up to 20% weekly. I would suggest from own empirical observations that both of these recommendations are more appropriate for rehabilitating other conditions, but not CFS. This recommendation needs to be integrated with “Envelope Theory” mentioned in section 1.4.6.3 for a more suitable regime. About half the baseline and one third the increment more appropriate, in my opinion. Discusses as if relevant only to fatigue, not mentioning pain, only half the story. Jagra 08:03, 1 September 2007 (UTC)

Less, even. Too much activity also leads to dizziness and failure to concentrate, both of which can be hazardous. Before any increase in activity takes place it should first be established that a patient has the capacity to do so. Regards, Guido den Broeder 09:10, 1 September 2007 (UTC)

What document are you reading? I don't see where it says to increase by 20% weekly. It just says "Agree with them a level of additional low-intensity exercise that is sustainable, independent of daily fluctuations in symptoms, and does not lead to ‘boom and bust’ cycles", which seems reasonable. I don't see any "increase by 20% weekly", which would be ridiculous. --Sciencewatcher 14:50, 1 September 2007 (UTC)

Guido, I agree the first problem is the immediate increase above baseline, it should be reduced substantially when new activity is commenced, then slowly build back to old baseline, building reserves before any increase. Sciencewatcher the increment rate is in this one page 30 section 1.6.2.17 , I can’t imagine when it would ever be appropriate to increment at that rate, certainly not so early on. Problem with such numbers is they get interpreted literally. It says

"Progressing with GET-- When low-intensity exercise can be sustained for 5 days out of 7 (usually accompanied by a reduction in perceived exertion), the duration should be reviewed and increased, if appropriate, by up to 20%. --" Jagra 09:12, 2 September 2007 (UTC)

Yes, it says 20%, but nowhere does it say "20% weekly" as you suggested. Instead it says only to increase if appropriate, and it also says to only use exercise that is sustainable and doesnot lead to boom and bust cycles. --Sciencewatcher 14:58, 2 September 2007 (UTC)

Sciencewatcher, if you have the right start point and right increment they should be able to increase more or less weekly, (7 days out of 7) for if they fail on even one day (let alone unsustainable 2 days out of 7) they should go back a couple of steps until they stabilize at a lower level where they can do 7 out of 7 without exacerbation of symptoms next day. Whether it is on week one, or week 101, a 20% increment on prior level is never likely going to be ‘appropriate’ mild or otherwise so why include such a figure!. It is also disappointing that Nice has not recognised the same general approach applies to all forms of activity, mental and physical and switching between different types of activity extends capability Jagra 08:02, 3 September 2007 (UTC)

Considerable effort went into these guidelines, with some good practical advice. Patients are fighting attitudes of "screw what the neurotic slacker experiences, they must do CBT and GET regardless so they realise the error of their abnormal beliefs/habits", and managed to keep them out of the guidelines; CBT and GET are only "suggested" for people with mild to moderate CFS, and they can refuse it. However, guidelines are usually well-worded and what happens in the real world depends a lot on the doctor's opinions/interpretations. The inclusion of CBT and GET is likely to remain controversial, and what will the implications be "behind the scenes" for those who are non-compliant? I have become suspicious from previous publications that recommendations of listening to the patients' experience or validating it are more of a lip service attempt to gain the patients trust rather than actually caring about the patient. The mandatory inclusion of the post-exertion aspect is a major improvement over the Fukuda criteria, but the sole emphasis on "fatigue" and the requirement of only 1 additional symptom is a disappointment. I think the framework would have been better (but perhaps too complicated) if there was a point system, with points allocated to the "optional" symptoms according to relevance and severity. I'm not sure why JFW wants to exclusively adopt the new diagnostic criteria in the article, but I agree the guidelines deserve coverage. I prefer the Canadian criteria, which perhaps isn't ideal and a little too strict, but was composed by a group of doctors who saw more than 20,000 patients, while other criteria seem to be formulated by mostly academics who review studies based on criteria formulated by other academics. - Tekaphor 02:51, 3 September 2007 (UTC)

They are also in contrast to the CDC-criteria, which (after reengnineering) still require 4 out of 8 symptoms. As for the time being, the CDC criteria are the most widely used. Thus they should remain the framework of choice. —Preceding unsigned comment added by 192.68.211.173 (talk) 09:10, 3 September 2007 (UTC)

Tekaphor, you've got me wrong. I only suggested that the list in the NICE guideline was so complete that it would be better to use that as a framework than the present hodgepodge that isn't based on anything. It would make the article more authoritative. The CDC criteria are okay, but they leave out many symptoms very commonly reported in CFS/ME. JFW | T@lk 09:39, 3 September 2007 (UTC)

I have now added the NICE criteria, which are likely to become gold standard in the UK. Further references to the NICE guideline can be made to <ref name=NICECG53/> (contrary to my edit summary, which included a 0 in the reference name). I have linked to the Quick Reference guide, which is all that is needed for the purposes of this article. JFW | T@lk 10:36, 3 September 2007 (UTC)

Infection and Stress

Just because a single specific virus hasn't been exclusively linked to CFS, that doesn't mean viruses aren't involved. Although the previously mentioned Dubbo study focused exclusively on post-infectious CFS, it discusses a syndrome that develops after exposure to "several different viral and non-viral micro-organisms". As for the other study Sciencewatcher mentioned, what exactly do they mean by "definite infection"? The abstract reads to me something like 72% of patients reported having infectious symptoms at the start of their CFS but only 7% still had definite infectious symptoms now or knew what specific infection they had at onset or were formally diagnosed with an infection at onset. Stress (of any type) appears to be an important aspect in CFS, but as a trigger or cofactor; I disagree with the sole emphasis on psychosocial stress. Similar mistakes have been made in the past with many other illnesses; which were blamed on stress at the time because stress was apparently involved, before more was known about the underlying processes. Sure, stress causes biological changes, but I can't help point out again and again that the vast majority of people in "chronically stressful circumstances" never develop CFS, not to mention the patients who weren't stressed prior to onset. Sciencewatcher mentions that infections influence the HPA axis in the same way as other stresses. If that is true, then perhaps the immune dysfunction (found by Dr Gow's gene expression work) is having a similar perpetuating influence. While stress management is important for other diseases with a psychosocial component (stroke, heart attack etc), the core treatment involves medicine that targets the related pathology, but CFS patients don't have that option yet and some professionals are suppressing such research/treatments as "unnecessary". I have noticed some people seem to believe that biomedical intervention for CFS is a form of "relinquishing personal responsibility of the psychosocial aspects" of CFS; but when it comes to other diseases (or even psychiatric illnesses) which also have psychosocial factors, they view it as a part of an "integral" approach. Some studies have suggested emotional disturbances can increase the risk of acquiring CFS, but perhaps if true this occurs because these experiences themselves are stressful, not because CFS itself is an emotional disorder. Again, the vast majority of people who experience these don't go on to develop CFS either. In the Dubbo study, higher neuroticism and "external locus of control" scores were only associated with more severe mood disturbance but not any other symptoms. - Tekaphor 03:29, 3 September 2007 (UTC)

Tekaphor agree with you on stress involvement in CFS, and yes infection does involve the HPA axis in an acute phase response, where among other actions cortisol is meant to be up regulated to control inflammation, both from an infection and the immune response to it like certain cytokines. The classic fever aids in this through release of heat shock proteins. All of this is normal ‘allostasis’, where it goes wrong though as in the case of dysfunctional allostasis, chronic conditions arise including dysfunctional immune responses and that can be indicated it seems by gene expression changes. I am a little sceptical but hopeful that such changes will prove CFS specific rather than more general process indicative You are right not all stressed individuals develop CFS but a large number do develop other conditions, four types of dysfunctional allostasis are identified, each leading to certain groups of diseases. More evidence is emerging that CFS or subgroups have a lowered cortisol response, but other conditions also have this to one degree or another including FM, asthma and inflammatory bowel diseases, so is it genetics that determine who gets what or are they all just named parts of a spectrum, (one of four maybe!)into which different categories of CFS might exist? I don’t think it necessarily important to identify any particular stressor as causative, because it is more probably a case of the whole being greater than the sum of components, more important I think to acknowledge processes Jagra 08:09, 3 September 2007 (UTC).

Yes, all stresses affect the HPA axis (and other body systems) in identical ways, and in many cases it is a viral infection combined with a psychological stressor that causes the illness. However my own view is that it is the psychological stressors that are important in maintaining the illness. You don't seem to see CFS in animals (although it would be difficult to diagnose for sure). I think that in the absense of any psychological stressors, the human body will always recover from the mild viral infections that seem to trigger CFS. In all the detailed case histories I have read, I have never seen any CFS patient who has not been in the midst of some severe psychological stressor. I think the reason that the same stresses don't cause CFS in all people is simply that people handle stress in different ways. Not all soldiers in the same battle suffer from PTSD. --Sciencewatcher 14:56, 3 September 2007 (UTC)

Agree not all soldiers, but soldiers more generally have been found to have lowered cortisol prior to battle, considered an adaptive response that may predispose some to PTSD, a condition of low cortisol. Much like dysfunctional allostasis may predispose some to CFS. And maybe differentiate gradual and sudden onset. Does it matter which stress is the final straw? For once the tipping point is reached, removing that stress does not cause recovery. I have not heard of any spontaneous cathartic CFS recovery? But granted any stress removal is essential and does aid progress Jagra 09:49, 4 September 2007 (UTC)

The original viral infections caused the disease, but they are not the disease itself. It is brain damage and CNS inflammation that you need to recover from and that is somewhat more difficult. By the way, animals can get ME/CFS, too. Guido den Broeder 17:11, 3 September 2007 (UTC)

There is no good evidence of CFS in animals. "brain damage and CNS inflammation" have not been shown in CFS. --Sciencewatcher 18:21, 3 September 2007 (UTC)

Your ignorance is underwhelming. Guido den Broeder 19:57, 3 September 2007 (UTC)

Thanks. Yours is overwhelming. --Sciencewatcher 20:47, 3 September 2007 (UTC)

POV forking

Jklsc (talk · contribs) has recreated a page at Myalgic Encephalomyelitis that essentially is a WP:POVFORK of this page that caters for the view that ME is not the same as CFS. I have turned that page back into a redirect, because I feel that multiplicity in pages and terminology is harmful to the subject from all perspectives. I ask other contributors to offer their views, and if possible support me in trying to concentrate the content on this page for maximum quality. JFW | T@lk 09:48, 3 September 2007 (UTC)

I have spoken in favour of such a page before. ME and CFS are not the same diagnosis, and a lot of info on ME is not easy to place in this article on CFS. Guido den Broeder 17:13, 3 September 2007 (UTC)

Perhaps we are getting ahead of ourselves. We still can't find general agreement on anything significant in the CFS page. Adding a separate myalgic encephalomyelitis page is highly contentious, especially since the Americans are in the process of changing the name "CFS" to the proposed "CFS/ME" with an eventual goal of having "CFS" changed to myalgic encephalopathy. So then we will have chronic fatigue syndrome, myalgic encephalomyelitis, and myalgic encephalopathy. This will be confusing enough for us to deal with, never mind an innocent member of the public coming to Wikipedia for some info on this disease. Many researchers and patients do not differentiate between CFS and M.E., so at this point could we keep it within the CFS page, perhaps under an expanded controversies section. I think we have a serious responsibility to be careful here: when using one of the large search engines and typing in "chronic fatigue syndrome", the Wikipedia CFS page comes up #3 on the list, so a lot of people may be relying on the info provided here. --- Taroaldo 19:00, 3 September 2007 (UTC)

There would certainly be a need for Myalgic encephalopathy since that diagnosis is vastly broader than Myalgic encephalomyelitis, like Muscular rheumatism before. The reason for the lack of agreement is partly, perhaps largely due to the fact that important defining information is now missing or hidden. Guido den Broeder 19:55, 3 September 2007 (UTC)

Cleanup

I've spent some time doing cleanup today, and boy what a collossal mess. People have routinely disregarded the most basic editing guidelines in their rush to shove in as many references as possible. Most hair-raisingly, I removed an unsubtle solliciting of votes for an E-petition (heaven knows how long that has been on the page!) There were various instances where articles were being referenced multiple times without using proper cite.php linking. I've fixed some of them now. There were other instances where the reference ought to have been a journal source, but instead a nonauthoritative website was used for the same content (e.g. CDC 1994, Carruthers 2003). This is clearly not acceptable.

I urge all contributors to help out with the proper sourcing of studies. At the moment, many references appear to have been copied & pasted from elsewhere. PMID or DOI codes are essential in making academic sources rapidly accessible for readers. With some gentle use of PubMed and Diberri's citation tool this shouldn't be a big deal at all.

We must also show restraint in linking to press releases from all sorts of pressure groups. There are many of them, and their reactions to published scientific evidence are not always useful. I'd much prefer a national news provider citing press releases from CFS/ME patients' associations in their context, and preferably with responses (if the journalist has been doing his job properly). JFW | T@lk 12:48, 3 September 2007 (UTC)

Valcyte, Sciencewatcher

Hola Sciencewatcher, could you link me to the controlled studies that show valcyte to be ineffective? I was unaware that any had happened. I notice the University of Stanford (the location of the uncontrolled trial) are performing a much larger one in the near future. Thank you.

Please someone archive this page. Thedreamdied 18:15, 3 September 2007 (UTC)

Sorry, I was unclear due to lack of space. I meant that no controlled trials have shown antivirals in general to be effective in treating CFS. --Sciencewatcher 18:22, 3 September 2007 (UTC)

Good job, sciencewatcher. Now its either the valcyte section back in or everything non-RCT in the GET and CBT Sections out. Have it your way :-)

Not sure what your point is, Anon. There are lots of controlled trials for GET and CBT which show they are effective, and these are in the article. There are none for antivirals. --Sciencewatcher 20:45, 3 September 2007 (UTC)

I see more reduction in quality, due to Sciencewatcher's most recent edits. Unfortunately I cannot edit the article because it is too long to load properly. Guido den Broeder 22:34, 3 September 2007 (UTC)

Rapid changes to this article are probably not a good idea right now. An incremental approach will give people a chance to discuss on the Talk page. The mood right now is more competitive than collaborative, and this does not do justice to the topic of CFS or to Wikipedia. --- Taroaldo 22:46, 3 September 2007 (UTC)

All of my edits were needed in order to remove POV bias or pseudoscience. Feel free to discuss them here. It seems that Guido is in the habit of believing pseudoscience (see his comment above regarding CFS in animals and brain damage in CFS, and his insult to me when I pointed out that there is no evidence for either), so that is probably why he is annoyed by my edits. Guido is also in the process of edit warring me on the Sophia Mirza article and trying to push his POV biased edits. --Sciencewatcher 00:35, 4 September 2007 (UTC)

You did the right thing, sciencewatcher. Someone has to fight the POV Warriors. And there is nobody more suitable than you. You are free from bias (It's all due to stress), free from POV (It's all due to stress), up to date (It's all due to stress) well balanced (It's all due to stress) and an astoute defender of the dialectic (It's all due to stress). Over time, you - unlike other contributors like tekaphor or JFW - have shown a marked expansion of your knowledge about CFS. When you first came to this page, you, with common psychological bumptiousness, thought it's all due to stress. As time goes by, Lo and behold - you are more and more coming to the conclusion that it's all due to stress. Congratulations.

Sorry, upon reflection I should have put my comment about edit pacing under a new section. I was not intending my remarks to be directed at any specific person or persons. Rather it was more of an observation on the page's overall progression. My preference would be to redo the page completely with new organisation wherein the major diagnostic and treatment notions would all get reasonable play, but where they would not creep into other sections in a way which could be seen as POV. --- Taroaldo 00:44, 4 September 2007 (UTC)

Archive

Can we please have some consensus to archive older discussion on this page? Thanks. --- Taroaldo 22:49, 3 September 2007 (UTC)