Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

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

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

Old talk page archived

• Page was over 160kb, archived.

• 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)

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)

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.

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

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

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.

"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.

"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.

"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.

"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.

"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.

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?

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

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