Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 14
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ANI comment
For anyone who liked my ANI comment (and there seemed to be a couple):
The point seems to have been missed. Everyone can already sort out all of these problems. You all need to calm down, and bite a couple bullets. First, all points of view that can be reasonably sourced (that includes peer reviewed articles, major patient groups, advocacy groups, and authoritative public health bodies) have a place on the page. Second, each edit must be reviewed according to merit, not according to who made it. Third, no information should be removed on the basis of taste - it is inappropriate to say that exercise doesn't help because of X, or pacing doesn't help because of Y, or CFS isn't viral because of Z. From what I know, these are all points of view with supporting and dissenting opinions, so all should be mentioned. They should certainly be qualified, but using reliable sources.
Everyone seems to agree that a neutral party is necessary - well, the acrimony has scared most of them away.
So - bite bullets. Concede points. Find secondary sources. Summarize sources. Leave the other side's sources on the page. Don't be dicks. CFS isn't settled yet - every single section will have point-counterpoint because fundamentally people still aren't sure what it is, what causes it, and how to treat it (or even if CFS is an "it" rather than a "they"). We summarize the mainstream opinion, and the mainstream opinion consists of a series of competing hypotheses, each with a certain degree of interest and a significant degree of controversy. Controversy isn't bad - deciding which side is correct is bad because that is not our job. Right now our job is to document the controversy, not to solve the problem. WLU (t) (c) Wikipedia's rules:simple/complex 16:13, 10 May 2010 (UTC)
- As I hinted at on ANI, I think that while there might be some disagreements, by and large this is what actually occurs here...at least nowadays. There have historically been a couple of editors who've had rather extreme views (that I can think of, one clearly leaning to biological, another clearly leaning towards psychological). While many of the rest of us clearly have our own viewpoints and therefore biases, I think most of us have a clear view that we're not here to find the truth.
- At least one responder to the ANI thread was of the opinion that there was a clique here who basically shut down any users with dissenting viewpoints. Personally, I would like to think that that's not the case, but I'm willing to accept that we may do so, or appear to do so, regardless of our actual intent. That's what I would hope to get most out of a moderator: someone to say "hey, you're stepping over the line a bit" when someone's doing so. When I skim the last few months' contributions and talk page edits, I see a few debates and heated words, but nothing all that bad. Most of the content prior to a couple of weeks ago appears to me to be exactly what you'd expect on a controversial article where there are disagreements, but a desire to work cooperatively. The last time I saw behaviour that slipped over the line (again, prior to a couple of weeks ago) was the UK Freedom of Information discussion in Archive 13, where most of the active users did indeed bully or shut down a user, but only because the content that user wanted to add very clearly didn't meet WP's guidelines.
- So what changed a couple of weeks ago? I'm sure a look at the edits will show that quite clearly. Even then, it pretty much went through a standard BRD cycle, as desired and expected. A moderator here would ensure that if we are overreacting to these types of edits, we know about it before we let it go too far; and if we're not, it would provide a neutral party with no history on the article to say so. —RobinHood70 (talk • contribs) 02:23, 11 May 2010 (UTC)
- A few days ago we had Retro come in and accuse us all of being pov pushing patients hell bent on saying that CFS is physical. Then a few weeks before that we had an Anon come in accusing us all of being a cabal that keeps a psychiatric viewpoint in the article. So if both sides are accusing us of being the opposite I think we must be doing something right. Most of the long-time editors here are pretty reasonable. Terry had a little blowout there, but that is unusual for him. Retro unfortunately seems to be intent on POV pushing and not working with other editors, and doesn't seem to be willing to change. --sciencewatcher (talk) 14:49, 11 May 2010 (UTC)
- I think a background monitor who mediates during disputes is much more preferable to one that "controls" the article all the time. So I'm cool with it as long as this person is not another ME conspiracy theorist, and being "undecided" on CFS is no guarantee of that. The prejudice needs to stop, period. Sciencewatcher also made an excellent point. - Tekaphor (TALK) 01:35, 12 May 2010 (UTC)
prevalence in the UK
This problem goes back a long time on the talk page. There is a need for prevalence information from other regions besides the US, but admittedly the http://www.meassociation.org.uk is probably not the best source. Please discuss on the talk page. Tag with better source needed or someone find a better source rather than just reverting. There should be an easy solution for this. Please discuss a compromise. Ward20 (talk) 21:48, 10 May 2010 (UTC)
- Even though I'm from the UK, I still think it is better just to have the CDC figures as they are a lot more notable/reliable than the ME Association for data like this. If we could find a study published in a WP:MEDRS comparing prevalence in various countries that would be best. --sciencewatcher (talk) 22:26, 10 May 2010 (UTC)
- OK, maybe I picked the wrong tag, but it points here, anyway. — Arthur Rubin (talk) 22:30, 10 May 2010 (UTC)
- "The epidemiology of CFS has been studied in the United States where the estimated prevalence was found to be 0.42% (7), Asia (9), Australia (8) and some European countries (11, 12, 16) (Fig. 1). Most countries where the epidemiology has been studied have an approximately similar estimate with the exception of Sweden (2.36%) and Australia (0.037%). The literature is discordant on the subject of social class: some studies have indicated an increased presence of teachers and healthcare professionals (11) but we have found evidence of an equal distribution among the working classes in accordance with more recent literature (12), and all social classes seem to be affected. In Italy, estimates of the prevalence and incidence of the syndrome are unavailable."
- Propose adding in the Epidemiology section after this sentence presently in the article, "The CDC states that more than 1 million Americans have CFS and approximately 80% of the cases are undiagnosed.[11]", we add the sentence, "A 2009 Italian study states the reported prevalence rates are similar in Asia, Australia and some European countries to those in the US, but higher in Sweden (2.36%), and lower in Australia (0.037%)." or something similar. Once we have consensus on some wording there maybe we can get consensus on replacing the tagged prevalence wording in the lead. Ward20 (talk) 01:13, 11 May 2010 (UTC)
- The only issue with this study is that it is not a review. What about this? --sciencewatcher (talk) 14:41, 11 May 2010 (UTC)
- Thanks. I assume this is the text?
- "Estimates for the prevalence of current chronic fatigue syndrome range from 0.007% to 2.8% in the general adult population (17–19) and from 0.006% to 3.0% in primary care or general practice (3, 20–22)."
- Yes, that's it. Sorry I should have copied it out myself. I just typed "cfs prevalence review" (without the quotes) into google scholar and that was the first result. I find google scholar is the most useful way of finding the best references quickly - it gives you the most-cited and relevant results first, and you can narrow down by date range if you want. With pubmed you basically have to sift through all the results to find the best ones. --sciencewatcher (talk) 23:02, 11 May 2010 (UTC)
- How about this review PMID 15699086 full text.
- "It will be clear to the reader from the above discussion that epidemiological studies and their findings are likely to differ according to the setting in which they were conducted, whether fatigue as a symptom, chronic fatigue or CFS was studied, the definition of CFS used and the rigorousness of the efforts made to rule out alternative medical explanations."
- Ward20 (talk) 02:48, 12 May 2010 (UTC)
(outdent)Any suggestions on the Epidemiology section changes? Then I will try to change the epidemiology material to use secondary sources instead of primary sources and the ME Association in the lead. Ward20 (talk) 23:54, 14 May 2010 (UTC)
Sleep
Sleep problems and quality of sleep are a huge problem and one area where the biological and behavioral proponents seem to agree that early intervention is of significant help to individuals. Looking at the article and subarticles IMO there isn't much weight given to this component of the illness. I am not sure where more information should be introduced though. So I am asking for discussion on this topic. Ward20 (talk) 21:12, 12 May 2010 (UTC)
- Sleep was covered in "the old days" when the symptom list was based on the Canadian definition. When this section was replaced with the CDC-1994 criteria, all the information and research on sleep was removed. I'm not sure where it would go either if we expand the current text on sleep, and obviously a decent review should be used. - Tekaphor (TALK) 02:18, 13 May 2010 (UTC)
- I'd suggest putting it at the end of the 'signs and symptoms' section, using a similar format to the 'cognitive functioning' section. --sciencewatcher (talk) 03:01, 13 May 2010 (UTC)
- There is a section in this well-cited review (same one as suggested above for prevalence) about sleep disruption. --sciencewatcher (talk) 14:15, 14 May 2010 (UTC)
FINE Trial (Fatigue Intervention by Nurses Evaluation)
FINE included relaxation techniques, guidance on sleep issues, graded activity and behavioral components.
Anyone want to comment on this?
Refs:
Not So Fine After All: the FINE Trial Crashes to Earth: http://www.forums.aboutmecfs.org/content.php?123-FINE
Pragmatic Rehabilitation For Chronic Fatigue Syndrome: http://www.bmj.com/cgi/content/extract/340/apr22_3/c1799
Drgao (talk) 05:19, 17 May 2010 (UTC)
- here is the study itself. I didn't put it into the article because the results were negative and we don't have any existing mention of this type of treatment. However if you want to put in a short mention that should be fine. --sciencewatcher (talk) 14:59, 17 May 2010 (UTC)
- Pragmatic Rehabilitation is pretty much just GET, as far as I can see (which these days is often not very far at all). So I think pragmatic rehabilitation needs to be viewed in the context of GET. This page here http://eprints.soton.ac.uk/147139/2/bmj.c1799 says that "Patients [on pragmatic rehabilitation] became significantly less fatigued and depressed, and they slept better than patients who received usual care. However, one year later no significant difference was seen between the groups. This suggests that pragmatic rehabilitation works, but only in the short term." Whether this is significant enough information to mention in the CFS article, am not sure. Drgao (talk) 05:15, 18 May 2010 (UTC)
- Yes, on reading it again I see you are right - it is mostly graded exercise. It is probably worth adding it to the treatment article, and possibly the main article. --sciencewatcher (talk) 14:51, 18 May 2010 (UTC)
- Keep in mind that effect was worded as "short term" and "small", and had no significant impact on physical functioning at any time. This study had the potential to compare the efficacy of pragmatic rehabilitation for those patients who are non-ambulatory (>10% of trial participants) and/or fitting London ME criteria (>29% of trial participants) vs the rest of the Oxford criteria group, but apparently this result was not published and therefore has questionable relevance for the latter groups? There are also some interesting findings such as "29.7% patients had any anxiety and/or any depression diagnosis" (lower than the often cited "majority"?) and 15.2% had "gastrointestinal problems including irritable bowel syndrome (despite talk elsewhere of CFS and IBS being the same illness or having very high comorbidity?). - Tekaphor (TALK) 16:23, 18 May 2010 (UTC)
The FINE trial DOES need adding to give balance, it also is totally eligable to be added to the page and the page does need it, if you dont add it then you need to remove some of the references to GET or CBT working sciencewatcher just becuase a trial gives a "negative" result as you put it, doesnt mean it shouldnt be added to the page, otherwise that is bias or POV 217.39.36.16 (talk) 13:17, 19 May 2010 (UTC)
- I never said that at all - please see above and actually read what I wrote. I never said that it should not be added simply because it gave a negative result (that of course is a good reason to add it, as we already have info for GET in the article). I agree with you. --sciencewatcher (talk) 14:53, 19 May 2010 (UTC)
"no physical signs that identify CFS"
Although this is the exact wording that the CDC website uses, it is maybe a little unclear. Certainly there are physical symptoms in CFS and the CDC and other authorities acknowledge this. However there is no definitive physical sign, medical test or anything else that can be used to diagnose CFS on its own. For example, palpitations and enlarged lymph nodes are pretty typical of many other conditions. I'm not opposed to removing this and just saying there is no 'medical test' as that is what we are really saying here. --sciencewatcher (talk) 13:52, 3 June 2010 (UTC)
- The actual wording is (from the introduction) "The cause or causes of CFS have not been identified and no specific diagnostic tests are available."
- From diagnosis:
- "There are no physical signs that identify CFS
- There are no diagnostic laboratory tests for CFS.
- People who suffer the symptoms of CFS must be carefully evaluated by a physician because many treatable medical and psychiatric conditions are hard to distinguish from CFS. Common conditions that should be ruled out through a careful medical history and appropriate testing include mononucleosis, Lyme disease, thyroid conditions, diabetes, multiple sclerosis, various cancers, depression and bipolar disorder."
I agree that 'medical test' should remain, and therefore never deleted this. However 'physical signs' should be removed, as they are used to diagnose CFS. With other diseases swollen glands can still be used to obtain a diagnosis. Likewise, some diseases may have medical tests, but would not meet the definition of 'physical signs' that you have mentioned, as they would also fail to be definitive, unless they are recorded together. Therefore 'physical signs' should be removed.UYBS (talk) 14:37, 3 June 2010 (UTC) The CDC function is limited to USA, and other diagnostic criteria are used, such as the Canadian or NICE. These use 'physical sign' to arrive at a diagnosis.UYBS (talk) 14:41, 3 June 2010 (UTC)
- I also agree with sciencewatcher that the CDC statement is not the best. A well cited review of the Fukada definition supports sciencewatcher's clarifications in his second and third sentences.
- "CFS is identified by symptoms and disability and by excluding illnesses that could explain them. There are no confirmatory physical signs or characteristic laboratory abnormalities."[2]
- Also:
- "In addition, like psychiatric diagnoses, chronic fatigue syndrome is defined on the basis of expert consensus, and its diagnosis is made on the basis of symptom criteria.[3]
- I would support removing or changing the present wording "no physical signs that identify CFS". I think it is confusing as the difference between signs and symptoms are not well delineated. Clarification along the lines of what sciencewatcher wrote sourced by the reviews might be a way to go. Ward20 (talk) 15:56, 3 June 2010 (UTC)
- The quotes by Ward20 are more clear than the CDC's website, and the reviews are more reliable sources anyway, so we should probably be using them instead. --sciencewatcher (talk) 16:02, 3 June 2010 (UTC)
The line in question is actually the one under Symptoms, 'There are no medical tests or physical signs to diagnose CFS'. Although the discussion may have a bearing on the wording from the introduction.
The NICE guidelines, which made a review of available diagnostic criteria, provides a more accurate description of physical signs. "At present, there are no physical signs that identify CFS/ME specifically. In addition, there are no diagnostic laboratory tests or other diagnostic criteria that can, as yet, confirm a diagnosis of CFS/ME, although research is ongoing." [1]
I suggest changing the line to 'There are no medical tests or specific physical signs from which to diagnose CFS'.UYBS (talk) 18:47, 3 June 2010 (UTC) The NICE guidelines do have diagnostic criteria. —Preceding unsigned comment added by UYBS (talk • contribs) 23:30, 3 June 2010 (UTC)
- UYBS makes a good point. There may be no physical signs "specific to CFS" or even some other diseases which are diagnosed, but swollen/sore lymph nodes are one of the minor CDC criteria used to diagnose CFS! For some patients, they may only have 4 minor criteria in total and would fail to qualify for CFS status without their swollen/sore lymph nodes. - Tekaphor (TALK) 02:11, 4 June 2010 (UTC)
Unless someone objects I will remove 'or specific physical signs'.94.195.15.252 (talk) 22:57, 4 June 2010 (UTC)
- Rather than simply removing 'or specific physical signs', I suggest using the review article ref[4] instead of the CDC ref to state, 'There are no characteristic laboratory abnormalities to diagnose CFS,[2]'
- Ward20 (talk) 01:20, 5 June 2010 (UTC)
That would also be a good solution, Ward20.UYBS (talk) 09:16, 5 June 2010 (UTC)
diagnosis section
I just removed this section for a couple of reasons. First, diagnosis is already covered in the 'signs and symptoms' section, so anything to do with diagnosis should go there.
As for the added content, while I think that something like this would be good to add, the problem with this particular reference is that it is a primary source. If you can find a good review instead, go ahead and add it. --sciencewatcher (talk) 00:01, 2 June 2010 (UTC)
- Agreed on both points. You can't "diagnose" CFS, you can only fail to account for the fatigue being caused by specific diseases. The article is indeed a primary source reporting on a single experimental trial, and therefore its use is discouraged per WP:MEDRS. An actual biochemical test for CFS is pretty much the holy grail of CFS biomedical research; something this big, if meaningful, requires replication and consensus that it's the test for at least certain sub-types of CFS. WLU (t) (c) Wikipedia's rules:simple/complex 00:42, 2 June 2010 (UTC)
Many wikipedia pages on diseases have both diagnosis and signs & symptoms sections, as they are not the same thing. Also, CFS & ME are clearly 'diagnosed'. The NICE guidelines, the Canadian criteria, and Fukuda criteria all contain sections on diagnosis. Furthermore, diagnosis is not a case of fatigue without another diagnosis. Diagnosis is based on a strict set of signs and symptoms, dependant on the criteria used. I suggest creating a diagnosis section, and moving criteria to this.UYBS (talk) 09:27, 5 June 2010 (UTC)
- If no one objects I will create a Diagnosis section under the Pathophysiology section, and move the following from Signs & symptoms, "There are no characteristic laboratory abnormalities to diagnose CFS,[17] so testing is used to rule out other potential causes for symptoms.[12] When symptoms are attributable to other conditions, the diagnosis of CFS is excluded. The CDC specifically refers to several illnesses with symptoms resembling those of CFS: "mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders. Medications can also cause side effects that mimic the symptoms of CFS."[2] UYBS (talk) 20:42, 7 June 2010 (UTC)
- I suggest following the format of the Multiple sclerosis article which is a featured article. The Diagnosis section follows the Pathophysiology section and is not a subset of pathophysiology. Multiple sclerosis has some similarities as it has multiple definitions and can be difficult to diagnose with overlapping symptoms to other illnesses. Ward20 (talk) 22:11, 7 June 2010 (UTC)
'Activity levels' section header
Would 'Disability' or 'Functional ability' be a better title for this section? Thanks. Ward20 (talk) 01:54, 5 June 2010 (UTC)
- Now that it has been brought up I personally would go for the 'Disability' heading.StevieNic (talk) 09:21, 5 June 2010 (UTC)
- Functional implies the symptoms are Functional somatic, which is not reasonable based upon the body of scientific evidence and the current understanding of this disease. It would also ignore the accumulating biomedical evidence for the underpinnings of CFS in the domains of immunology, virology, genetics, and neuroendocrinology. Furthermore, as stated by Ricardo Araya MD: “The absence of a medical explanation [for an illness] should not confer automatic psychiatric labeling (Sept.6-8, 2006; Somatic Presentations of Mental Disorders; DSM-5 Work Group).” [3] I would either leave the heading as Activity levels, or change it to Disability, perhaps another option would be to change the heading to Functioning, Disability and Health, in line with the WHO's ICF. UYBS (talk) 13:19, 6 June 2010 (UTC)
- OK I understand where that's are coming from as some phycological researchers use functional somatic syndromes as nomenclature linked to Somatization disorders.[5]. Biological researchers use functional impairment in the usual way as disability assessment in CFS.[6]. It appears to be used in mental disorders also.[7]. "Functioning, Disability and Health" seems wordy, but it is neutral and descriptive of the section so I support it. Perhaps tt would help to have a quality of life statement with a good source in this section also. Ward20 (talk) 18:31, 6 June 2010 (UTC)
Link to CFS doctor database
Would I be able to add a link to a CFS doctor database i built in the external links section? It has over 300 doctors in 4 countries and im working on adding user reviews and a rating system. http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-doctors/ Garrett12345
I didnt hear any response to adding the CFS doctor database, so im going to try and add it. Let me know if anyone has problem with that. thansk garrett Garrett12345
—Preceding undated comment added 04:59, 22 May 2010 (UTC).
- Sorry I didn't get to this earlier, but I think the link is weak on the grounds of WP:ELNO specifically # 2 and 11 where a lot of the information seems to be unverifiable. I want to hear what others think. Ward20 (talk) 20:12, 23 May 2010 (UTC)
- I'd also potentially categorize it under #13 and 14 of WP:ELNO, though I'll be the first to admit, that's a broad interpretation. My concern is that the article isn't supposed to be a resource for CFS, it's supposed to be about CFS, and a list of doctors, while helpful to many patients, isn't actually about CFS itself. —RobinHood70 (talk • contribs) 21:00, 24 May 2010 (UTC)
- In general I'd say that it fails WP:ELNO but I'd like to make two more specific objections. Firstly, why is a CFS doctor database necessary at all? Over at, say, Bone fracture or Psychosis we don't have lists of doctors specialising in those particular problems. Secondly, the bar down the right hand side looks like an A-Z of fringe theories around CFS. There's extensive praise for vitamin injections, Sarah Myhill (a British doctor who is currently in a lot of trouble with UK medical regulators), acupuncture, a barrage of different "tests" ...
Let me just add that a database for CFS doctors is very necessary. When you have an illness where 50% just want to put you on anti-depressants and tell you that you are nuts. Its pretty important to find a dr. that understands it. Also since there isnt a whole lot of mainstream medical research, all you have right now is alternative medicine and supplementation. As for Dr. Myhill, she's in trouble for giving a patient b12 injections (which are totally harmless). I take b12 injections and they are the most helpful supplement for me personally (the same for most who use them). Supplements aren't going to make anyone well, but they got me out of bed and allow me to work from home. Garrett12345 —Preceding undated comment added 00:47, 25 May 2010 (UTC).
- I think you have just given a good example why we shouldn't have a CFS doctor database. B12 injections have been trialled and found not to have effect effect over and above the placebo effect, and they are implausible anyway. Of course patients will feel better simply due to the placebo effect, but that isn't a very good reason for a doctor to recommend a treatment. If we were going to have a doctor database, these are the last doctors we should be recommending to patients. But it is a moot point because this list fails WP:EL anyway, as others have noted. --sciencewatcher (talk) 01:18, 25 May 2010 (UTC)
- I think Garrett12345 is also misinformed about why Myhill is in trouble, but that's another argument for another day.
- There is much stigma around psych problems and many seem to feel that they're not "real" or that it is equivalent to being "nuts". This might explain why some people diagnosed with CFS are keen on fringe medical theories which hint at a non-psych cause; even if the fringe theories are implausible, discredited, or mutually contradictory.
- However, this is supposed to be a Wikipedia article rather than a CFS forum, so it should stick to medical consensus & reliable sources.
- bobrayner (talk) 01:57, 25 May 2010 (UTC)
- People (some of them, we don't stereotype here, eh) with CFS are "keen on fringe theories" because they're severely impaired yet offered nothing except talking therapies which don't produce any objective functional improvement, because they're conceptually irrelevent to a multi-systemic neuroimmune disease process. They're having to do the biomedical research themselves rather than spend decades waiting on the MRC to stop its excuses. The real question is why do you smear CFS patients with a false accusation and irrelevent comparison to mental illness stigma. What you're doing is Gaslighting; applying a nice bit of stigma yourself. You've obviously wandered in here knowing next to nothing about the subject and its history so maybe you should remind yourself that outside the hallowed halls of medicine, FALSE accusations of mental illness may be considered libel. The legacy of totally inappropriate mental health treatments for denied organic diseases is Sophia Mirza's and Lynne Gilderdale's harmful mistreatment and decline in physical and psychological health.
to sciencewatcher: those types of attitudes are exactly why people with CFS have so many problems. People use the placebo effect to cast doubt, but can never back up what they say with any proof. Science can't explain what is going on with CFS yet, so how can you call a treatment that works for myself and alot of people implausible. You might have a medical background, but you don't understand CFS and your average GP doesn't either (hence the database). But, Im obviously not going to get the link to the database, so this is pretty pointless. Garrett12345 —Preceding undated comment added 01:25, 26 May 2010 (UTC).
- Here is the proof. "Although patients responded to placebo and LEFAC by several criteria of functional status, no significant difference was apparent between response to placebo and that to LEFAC. The placebo response appeared to be strong." Admittedly this is a very small study, but I can't find any positive studies (except for Teitelbaum). Doing a little more research I found this interesting overview showing that CFS patients do have functional deficiency in B vitamins, but supplementation does not produce recovery. It also has an interesting comment that psychological stress results in similar B-vitamin deficiency. Oh, and I do know about CFS because I suffered from it myself. I'm interested in figuring out exactly what is going on with the illness whether it is psychiatric or otherwise.
- And saying that someone might have responded to the placebo effect isn't being dismissive or saying that you are nuts. A quick look at placebo shows that 39% of people respond to the placebo effect (at least for pain). --sciencewatcher (talk) 03:20, 26 May 2010 (UTC)
- More recent research (by Simon Wessely no less, if I recall) has shown the placebo effect weaker in CFS. At any rate B12 is pretty non toxic (only in a few diseases is it considered dangerous, nonr of which is CFS) so using it to make a complaint about a clinician's safeness was mendacious. Unlike your POV assertion that it's implausable it's actually quite plausable (see the methylathion theory, for one example) that it may be of some help in a subgroup anyway.
- Interesting you say you sufferED from it, past tense, yet official CDC figures are what, only around 5% have a full recovery (and they don't seem to recognise long term remissions). So you can only speak from the position of an atypical cohort. Are the reasons for your long standing anti-biomedical POV because you "recovered" through CBT/GET/diet or something? v.
- The psych stigma argument is a cop out. Even the "king" of the cognitive behavioural approach apparently now interprets accusations of mental illness towards his patients as insulting. I agree with what was said above by anonymous about why "people with CFS are keen on fringe theories". Gaslighting is a rather strong term as it implies malicious abuse, but it does seem like some CFS patients are being tricked into believing they have "false illness beliefs" and major psychological issues even when they don't. As for B12 treatment being "implausible", according to PMID 9310111, a small study (n=12) on women fulfilling both criteria for CFS and FM: "The most obvious finding was that, in all the patients, the homocysteine (HCY) levels were increased in the cerebrospinal fluid (CSF). There was a significant positive correlation between CSF-HCY levels and fatiguability, and the levels of CSF-B12 correlated significantly with the item of fatiguability and with CPRS-15. The correlations between vitamin B12 and clinical variables of the CPRS-scale in this study indicate that low CSF-B12 values are of clinical importance. Vitamin B12 deficiency causes a deficient remethylation of HCY and is therefore probably contributing to the increased homocysteine levels found in our patient group." - Tekaphor (TALK) 02:19, 18 June 2010 (UTC)
Dire Underfunding of CFS Research
I recently read this article on the dire lack of funding for CFS research: [8]
This article says that, for a condition like CFS, which affects around 1 million people in the US alone, the funding should be 40 to 50 times the amount of funding CFS is actually getting.
That is to say, other major medical disorders of this scale, that affect this many people, with a huge disability rate, typically get 40 times more funding per year compared to CFS.
This is an astounding fact and an enormous discrepancy. A fact that perhaps needs to be included in this Wikipedia article on CFS. What do others feel? Should this amazing lack of funding be elucidated upon in the Wiki article? Obviously this discrepancy is linked to the political problems of CFS, and the fact that many professionals still do not view CFS as a real biochemical disease. Drgao (talk) 04:56, 3 June 2010 (UTC)
- Web fora are not reliable sources for wikipedia pages and it's use on the main space would probably be considered problematic per WP:SOAP and WP:ADVOCACY. If actual reliable sources (i.e. peer-reviewed publications, possibly statements by large and respected medical organizations) have documented this disparity, this is interesting and probably worth including. Including points such as "may professionals do not view CFS as a real biochemical disease" assumes that it is a biochemical disease, when no conclusive proof of this has yet been published and large numbers of professionals believe it is a psychogenic disease. WLU (t) (c) Wikipedia's rules:simple/complex 13:21, 3 June 2010 (UTC)
- I had a look on their website but couldn't find any actual data (and endwomenspain.org isn't really a reliable source anyway). I did find this study, although it is a primary source with only 2 citations. --sciencewatcher (talk) 14:07, 3 June 2010 (UTC)
- Yes, agreed that reliable and appropriate sources are needed before this might be included in the article, and I hope that these can be found. There must be a database that tracks scientific funding from the government that would yield this info. But if the figure is correct, having 40 to 50 times less funding that other diseases seems like a pertinent piece of information, provided it is not presented as advocacy. Drgao (talk) 17:29, 3 June 2010 (UTC)
- Oh, and as a side-note, if you read the introduction to the above-mentioned study I posted, it looks like the reason for the underfunding is due to lack of suitable research proposals rather than any desire to limit funding. The above study says "the NIH recently issued a renewed program announcement to solicit grant applications for CFS research focusing on pathophysiology and treatment [8]. In addition, the NIH published in 2005 a request for proposals focusing on neuroimmune mechanisms in CFS [9]." Also if you look at the UK Medical Research Council's website you'll see that it says "CFS/ME is currently a highlighted area, and is an area that is of high priority for the MRC. In 2008 the MRC set up a new group to consider how the MRC might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas This work follows on from the Research Advisory Group set up in 2003 and the joint workshop held with Action for ME in 2006." --sciencewatcher (talk) 17:50, 3 June 2010 (UTC)
- It is difficult finding WP:MEDRS references for which I agree with Drgao is "an astounding fact and an enormous discrepancy". As for Sciencewatcher's claim, "it looks like the reason for the underfunding is due to lack of suitable research proposals rather than any desire to limit funding". Say what? Apparently CFS is at the bottom of the government's funding list because the CDC cannot come up with "suitable research proposals". ;-) Tekaphor (TALK) 02:09, 4 June 2010 (UTC)
It appears, that although the MRC has CFS/ME as a priority area, they have not yet funded any biomedical research, and only have couple of psychosocial studies in the pipeline. I believe the All parliamentry group on ME may have discussed this issue. —Preceding unsigned comment added by UYBS (talk • contribs) 19:06, 4 June 2010 (UTC)
- There have been lots of biomedical studies from the UK (not sure if they were funded by MRC or not), and many of them from Simon Wessely you will be surprised to hear. Try doing a search on google scholar rather than believing all the conspiracy theories you hear in patient support groups --sciencewatcher (talk) 19:13, 4 June 2010 (UTC)
- "There have been lots of biomedical studies from the UK,..." Lots? Some, certainly, (and a few very good ones too, from Kerr for example). But lots? No.
- "(not sure if they were funded by MRC or not),..." They weren't, except a small one very recently (and that was only partial funding, and somewhat indirectly too, I think, it wasn't a specific grant). In fact I am pretty sure you will find that more genuine bio-med studies have been privately funded in the UK by patients and their supporters in the last 15-20 years, then by MRC grants.
- "and many of them from Simon Wessely you will be surprised to hear." I for one will be very surprised. I invite you to provide a list of his genuinely biomedical research into CFS or ME. (I do not include stuff like cortisol studies as they are done from the psych perspective, or generic lab workovers to screen out known organic disease and provide baseline data.)
- Over to you... —Preceding unsigned comment added by 213.163.65.50 (talk) 15:56, 5 June 2010 (UTC)
Read the comment again sciencewatcher. Nothing to do with Wessely or non MRC funded studies. As for the rest of your comment???UYBS (talk) 01:37, 5 June 2010 (UTC)
The recommendations from the UK APPG on ME (All-Party Parliamentary Group on ME) state that, "To date research in the field of ME/CFS has produced little substantive progress but there are a number of encouraging findings e.g. the XMRV research, which need to be pursued. As noted in the Gibson report, there has also been far too much emphasis in the past on psychological research and insufficient attention to biomedical research. The Group welcomes the recent MRC initiative to attract new researchers and new technologies in to this area. However, the Group is sure that it is vital that further biomedical research is undertaken to help discover a cause and more effective forms of management for this disease. [9]
The view that, there has been too much emphasis in the past on psychological research and insufficient attention to biomedical research, as well as the recent MRC initiative, should be added to the CFS page. This should also include the fact that so far the MRC has funded no biomedical research into ME/CFS.UYBS (talk) 13:42, 5 June 2010 (UTC)
- I agree with mentioning the research imbalance of psychological vs biomedical. However, the source [10] does not explicitly say that the MRC has funded no biomedical research. It may be true, but you will need an another source for that statement. It does say "insufficient attention" but I am not clear on whether they are talking specifically about the MRC or more in general. - Tekaphor (TALK) 02:39, 6 June 2010 (UTC)
- I believe they are talking in general. As for the MRC, when asked about biomedical research, they have never answered the question, and have only ever pointed to the projects that they are funding, which have been psychosocial. Therefore I would suggest that a line be added to say that when the MRC has been asked about biomedical research into CFS, they have pointed to their current research projects, which have been psychosocial.UYBS (talk) 12:38, 6 June 2010 (UTC)
- Find a reliable source that states the issues, since Wikipedia doesn't present editors interpretation of issues as that is original research. It keeps things from becoming a free for all helps keep articles in balance. Keep in mind that medical articles generally use higher quality sources than many other articles. Ward20 (talk) 18:51, 6 June 2010 (UTC)
- I seem to recall some research that looked into the proportion of 'psychiatric' vs 'biological' research into CFS, but for the life of me I can't find it (unless I'm just imagining it). As Ward20 says, we really need to have a reliable source for this. There are quite a few high quality reviews already in the article - I'd suggest looking through these to see if they mention anything about this issue. --sciencewatcher (talk) 21:03, 6 June 2010 (UTC)
- On 23rd Feb 2010 Annette Brooke MP, asked in the house of commons about ME, highlighting that the MRC had never funded biomedical research. This was the reply given. "As the hon. Lady said, research is the key to developing new treatments, transforming care and finding a cure for this debilitating condition. Research into ME continues 23 Feb 2010 : Column 279 to be a strategic priority area for the Medical Research Council. The MRC is one of the main public funders of medical research, receiving its funding through grant-in-aid from the Department for Business, Innovation and Skills. The MRC remains committed to supporting scientific research into all aspects of ME, including evaluations of treatments and studies of the biological basis of the condition. In 2008-09, the MRC spent £728,000 supporting four separate projects in this particular area. Nevertheless, we recognise there is scope for an expanded research programme for ME. The MRC has set up an expert group, chaired by Professor Stephen Holgate, to consider how best to encourage new research into ME, and how to bring researchers from associated areas into the field. The expert group arranged a small research workshop on ME at the end of last year, and the results will be published on the MRC website in due course. We also need to address the fact that not enough proposals for research are coming forward for consideration."[4] UYBS (talk) 22:03, 6 June 2010 (UTC)
- A similar question was also asked on the 28 Jan 2010. [5] "Mr. Drew: To ask the Secretary of State for Health whether his Department plans to provide funding for biomedical research into the causes, transmission and treatment of myalgic encephalomyelitis. Mr. Lammy: The MRC does not normally allocate funds to particular topics: research proposals in all areas compete for the funding available. When appropriate, high quality research particularly in areas of strategic importance may be given priority in competition for funds, but research excellence and importance to health continue to be the primary considerations in funding decisions. The MRC always welcomes high quality applications for support into any aspect of human health and these are judged in open competition with other demands on funding. 28 Jan 2010 : Column 1071W. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition." - Still no mention of the MRC funding biomedical research.UYBS (talk) 00:07, 7 June 2010 (UTC)
- I said previously that "It is difficult finding WP:MEDRS references for which I agree with Drgao is an astounding fact and an enormous discrepancy." As far as I know we do not actually need a "MEDRS" reference for non-medical information such as funding issues, but I don't know if UYBS's new sources meet Wikipedia standards to support the statement that the MRC has not funded any biomedical research. The MRC's answer seems vague and PR-like, so I suspect that they have not funded such studies. This webpage and this PDF document on their website are not all that encouraging either. At best, "pathophysiology" is listed as one of the research strategies, but several years have passed without meaningful results? I remember reading something about the MRC themselves blaming the "lack of quality biomedical proposals" for this, which is debatable.
- The APPG on ME, is formally recognised by the House of Commons officials, it is a group of MP's & peers of all political persuasions, raising issues and lobbying on areas that affect ME policy. An APPG must have a minimum number of parliamentarians from the government party and the official opposition, and must elect its officers on an annual basis. This source is therefore reliable, official & independent.UYBS (talk) 19:53, 7 June 2010 (UTC)
- UYBS, this article comes up in a Google search for MRC+UK+CFS+biomedical+research but I'm not sure if we can use it. With all these sources discussed above so far, you may be able to say something like "X has asked the MRC why they have not funded any biomedical research" or "Y has noted that none of the MRC funded studies were biomedical", but I doubt these sources can be used at Wikipedia to state as a matter of fact that the MRC has not funded any biomedical research. - Tekaphor (TALK) 04:45, 7 June 2010 (UTC)
The MRC's website and their replies to the questions clearly show that they want to fund biological research but no research proposals have come forward. Not sure why there is such a conspiracy theory about all this. If you are implying that the MRC is lying then you will need a better source than some patients' conspiracy theories! All of this is beside the point and a waste of time. Please read WP:MEDRS and WP:RS to see what we should be including. What we want is something like Friedberg, but ideally as a review. You (Tekaphor and UYBS) shouldn't be scraping the bottom of the barrel to find sources just to back up your conspiracy theories. --sciencewatcher (talk) 14:36, 7 June 2010 (UTC)
- The MRC has the following on it's website under funding opportunities, "Following the publication of the Report of the Chief Medical Officer (CMO)’s Independent Working Group in January 2002, an MRC CFS/ME Research Advisory Group was convened by the MRC to develop a broad strategy for advancing biomedical and health services research on CFS/ME." [6] and this Research initiatives, "The aim of the Group is to look at new ways of encouraging new research in the CFS/ME field not only by looking at new technologies but also at associated areas that could help inform on the diverse range of symptoms and possible underlying causes of CFS/ME." and "The core assessment criteria are the importance of the scientific questions being asked, the research programme’s potential for advancing biomedical science, and the justification for the resources requested." [7] As said before, the MRC has recently begun an initiative to attract new researchers and new technologies in to this area. However, I can find no section that states that the MRC has received no biomedical research proposals. Can you provide a reference? As for the suitability of the sources I have provided, they are clearly of the highest quality, having come from an adjournment debate in the house of commons, questions in parliament, and a APPG report. UYBS (talk) 20:34, 7 June 2010 (UTC)
- Here is another source, the Group on Scientific Research into ME, 26 November 2006, "The Medical Research Council (MRC) has invested over £11 million in research into ME/CFS but these have focused on the psychosocial aspects of the disease and in particular on controlled trials of treatments of this aspect of the illness. No major biomedical research projects funded by the MRC have been brought to our notice." and "The Minister indicated to the inquiry that few good biomedical research proposals had been submitted to the MRC in contrast to those for psychosocial research. We have however been told of proposals that have been rejected, with claims of bias against support for this type of research. The MRC should do more to encourage applications for funding into biomedical models of CFS/ME." and "The CMO’s Working Group report came out in January 2002. Despite paying lip service to the need to advance the understanding of CFS/ME, the MRC itself has confirmed that from April 2003 to date, it has turned down 10 biomedical applications relating to CFS/ME because they considered they were not of high enough scientific standards to compete against the many calls on its funds. These included applications under the headings of pathophysiology, genetics, biomarkers, immunology and neuroimaging. By contrast, since April 2003 the MRC has funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain." and "This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research." [8] Again, this is from a reliable source, a Parliamentary Inquiry by an independent group of MP's and peers.UYBS (talk) 20:34, 7 June 2010 (UTC)
- Thanks, the above quote sums up the situation nicely. This can probably go in the controversies section, as we already cover similar stuff in there and it already mentions the Gibson enquiry and we don't need to fulfill WP:MEDRS when talking about controversies and opinions. --sciencewatcher (talk) 21:37, 7 June 2010 (UTC)
- What "conspiracy theories" am I allegedly scraping the barrel for, Sciencewatcher? The MRC in the UK may or may not have a bias, but UYBS has provided adequate sources and the MEDRS guideline does not apply here. CFS research is poorly funded, a universally accepted fact among patient groups. I'm not a fan or a member of any group and I was not promoting them, but the opinions of patient organisations and charities are relevant here, regardless whether those opinions are accurate. If a national group represented patients of another disease such as MS and spoke out against gross funding issues, would this also be dismissed as conspiracy theory?
- The same issue of being poorly funded also exists in USA where the CDC themselves could come up with many more research proposals for the NIH to fund, so "due to lack of suitable research proposals rather than any desire to limit funding" is obviously not an adequate explanation for the USA situation. Fortunately, the description in the source you gave is a good start: "In addition, relatively little (U.S.) federal funding of CFS research has been documented. In the years 2004 and 2005, funding for CFS research by the National Institutes of Health (NIH) ranked 201 (US$10 million) among 210 various diseases, conditions, and research areas [6]. [...] Furthermore, an independent review of NIH-sponsored CFS grants [7] for two reporting periods (1999–2003 and 2000–2005) concluded that funding declined 18% from 1999 to 2003 and showed further declines through 2005."
- So in the USA, CFS is at the bottom of the list and funding has even declined, although perhaps it only appears to have declined because some of the money from previous years came from reimbursements due to the last time the CDC was caught in a $12.9 million CFS fund-shifting scandal? [11] Patients and their supporters have every right to be concerned about future funding in light of such scandals, not a "conspiracy theory" but the findings of a congressional inquiry.
- UYBS, like Sciencewatcher stated, this information should go to the Controversies related to chronic fatigue syndrome article. However, the content of that subarticle still needs to summarised on this main article, so far it is the only subarticle which has no summary in the main CFS article.
- I just created a new section Controversies related to chronic fatigue syndrome#Research funding for the new information to be added later. It may be worth adding subtitles of "USA" and "UK" among other countries if the information is available for them. - Tekaphor (TALK) 03:42, 8 June 2010 (UTC)
- As the information provided is not controversial, and adding a line such as, "Over the last four years a number of UK parliamentary inquiry's and politicians, have asked the government to provide information on the number of biomedical research studies into ME that the Medical Reseach Council has funded, so far none have been named", merely states factual information, this should be placed on the main page. Any further discussion on the interpretation of this information, can then go on the Controversies page.UYBS (talk) 18:44, 8 June 2010 (UTC)
The 'conspiracy theory' is that funding is being deliberately limited. Both NIH and MRC have specifically said that CFS is a priority for funding and they both have actively solicited proposals. As UYBS pointed out above, MRC has also specifically said that they have rejected proposals because they are not high enough quality (I mentioned this a few paragraphs up, and you rubbished it, but it turns out I was correct). Anyway, all of this should be included, and we can also say that patients accuse them all of deliberately underfunding - this is the controversy section after all, and we can and should include all of the various conspiracy theories as long as we also give the info from the MRC and NIH. --sciencewatcher (talk) 03:52, 8 June 2010 (UTC)
- I never said research is being "deliberately limited" in your apparent interpretation of that phrase, I said it is poorly funded. Yes, I personally think words are not being met with actions. A lack of professional interest and respect for CFS would help to explain the massive funding discrepancy, with a reciprocal relationship between available funding and research requests, but talking about "soliciting proposals" and research priorities is not the same as freeing up lots of urgent coin for government scientists eg the CDC. Anyway, you were initially speaking from Friedberg et al 2007 about CFS research funding in general, I was the one who first brought up the UK MRC's specific explanation of lack of quality proposals; I did not rubbish the existence of the explanation as you seem to imply, I said the explanation itself was "debatable", which means it can be debated and is done so in the sources discussed above, eg the Gibson Enquiry calls the UK MRC's related statements "lip service".
- You then said "The MRC's website and their replies to the questions clearly show that they want to fund biological research but no research proposals have come forward." Wrong, it turns out that while 5 "mostly psychiatric/psychosocial" research proposals were accepted during 2003-2006, all 10 biomedical proposals during the same period were rejected on grounds of allegedly being poor quality. You now seem aware of this rejection, and yes it is similar to what you initially said in more general terms. So who are the researchers submitting these allegedly "poor" proposals? It seems very difficult to track down these rejected proposals (so much for transparency), but the source that UYBS quoted above [12] goes on to state "Biomedical applications in respect of CFS/ME known to have been rejected include those by Professor Jill Belch (herself a Principal Fellow of the MRC) and Dr Vance Spence of Dundee, as well as Dr Jonathan Kerr of St Georges, London. It is clear that internationally there have been a number of studies, which have identified clear areas for further research. The MRC should commissions British versions of this research in order to advance possible treatments."
- You said "Not sure why there is such a conspiracy theory about all this." Again, the UK MRC may or may not have a bias towards particular types of proposals, I cannot say, but it should not be too hard to understand why patient advocates are suspicious about the situation when known researchers and even a member of the UK MRC can't get funding for biomedical research. I'm glad you have since conceded that these "opinions" deserve a mention in the article. I thank UYBS for bringing these sources to our attention. - Tekaphor (TALK) 14:57, 8 June 2010 (UTC)
- Ok, I see your point - all 10 biomedical studies rejected. The MRC says they are poor quality, but patients are suspicious. I think it's reasonable to put all of that in the controversy article and maybe a sentence summary in the main article. --sciencewatcher (talk) 15:20, 8 June 2010 (UTC)
- Sciencewatcher, I agree that a line should be added to the Controversies page, stating that patients accuse the MRC of deliberately underfunding biomedical research, if a source can be found for this. This should also be expanded to include the scientists that have accused the MRC of deliberately not funding biomedical research, ""It seems extraordinary and very sad that there is no Government support for biomedical studies of ME. We have applied for funding from the MRC and been turned down." [9] As I said earlier, any factual information should go on the main CFS page, with further discussion on the interpretation of this information being placed on the Controversies page. The APPG on ME, the Group on Scientific Research into ME, questions in the house, all meet wikipedia's threshold for inclusion, after all this is about funding and not about biology.UYBS (talk) 19:06, 8 June 2010 (UTC)
- I should also add that the quote from the Group on Scientific Research into ME, "This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions,..." mentions perception of bias, and the quote before indicates this bias is being felt by the scientist's. " We have however been told of proposals that have been rejected, with claims of bias against support for this type of research."UYBS (talk) 19:13, 8 June 2010 (UTC)
That's all fine - it's just a question of weight. We don't want it to be a big shopping list of complaints. We should probably give the figures from Friedberg and the MRC/NIH, then a quote from a patient group or the Gibson report, then the MRC's response - or something along those lines. --sciencewatcher (talk) 20:34, 8 June 2010 (UTC)
- The UK and USA should be separate, with a summary of the basic facts on the main CFS page, and any interpretation on the Controversies page, with references provided. I would suggest the following for the UK summary, on the main CFS page, "In November 2006, a parliamentary inquiry called the Group on Scientific Research into ME [10], was informed by a government minister that few good biomedical research proposals have been submitted to the Medical Research Council (MRC) in contrast to those for psychosocial research. They were also told by other scientists of proposals that have been rejected, with claims of bias against support for this type of research. The MRC confirmed to the Group that that from April 2003 to November 2006, it has turned down 10 biomedical applications relating to CFS/ME, and funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain. In 2008, the MRC set up a new group to consider how the MRC might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas. [11] Since this initiative began, a number of politicians have asked the government to provide information on the number of biomedical research studies into ME, that the Medical Reseach Council has funded, so far none have been named. [12] [13] In February 2010, the All-Party Parliamentary Group on ME (APPG on ME) produced a legacy paper, which welcomed the recent MRC initiative, but felt it was vital that further biomedical research be undertaken to help discover a cause and more effective forms of management for this disease. [14]UYBS (talk) 21:56, 8 June 2010 (UTC)
- You should probably add "because they considered they were not of high enough scientific standards to compete against the many calls on its funds" or "The Minister indicated to the inquiry that few good biomedical research proposals had been submitted to the MRC in contrast to those for psychosocial research". Also the info from the MRC's website saying that "CFS/ME is currently a highlighted area, and is an area that is of high priority for the MRC." --sciencewatcher (talk) 22:39, 8 June 2010 (UTC)
- A line is already in the summary about the minister indicating that few good biomedical research proposals have been submitted. I have added the highlight notice part. "In November 2006, a parliamentary inquiry called the Group on Scientific Research into ME [15], was informed by a government minister that few good biomedical research proposals have been submitted to the Medical Research Council (MRC) in contrast to those for psychosocial research. They were also told by other scientists of proposals that have been rejected, with claims of bias against support for this type of research. The MRC confirmed to the Group that that from April 2003 to November 2006, it has turned down 10 biomedical applications relating to CFS/ME, and funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain. In 2008, the MRC set up an expert group to consider how the MRC might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas. It currently lists CFS/ME with a highlight notice, inviting researches to develop high quality research proposals for funding. [16] Since the MRC initiative began, a number of politicians have asked the government to provide information on the number of biomedical research studies into ME, that the Medical Reseach Council has funded, so far none have been named. [17] [18] In February 2010, the All-Party Parliamentary Group on ME (APPG on ME) produced a legacy paper, which welcomed the recent MRC initiative, but felt it was vital that further biomedical research be undertaken to help discover a cause and more effective forms of management for this disease. [19]UYBS (talk) 23:15, 8 June 2010 (UTC)
- Seems reasonable, although I'm not sure about the parliamentary questions - that seems to be digging too much and might be WP:OR. I don't think that part really adds anything anyway. Oh, and you have a typo in "inviting researches". --sciencewatcher (talk) 15:21, 9 June 2010 (UTC)
One of the links for you ref is broken (www.parliament...). Also, this should go in the controversies article not in the main one. And where is the source for "Since the MRC initiative began, a number of politicians have asked the government to provide information on the number of biomedical research studies into ME, that the Medical Reseach Council has funded, so far none have been named"? - I couldn't find that in your references. (Please quote the text here). --sciencewatcher (talk) 19:58, 9 June 2010 (UTC)
- Reference fixed, and quotes provided earlier in discussion from these sources. As discussed earlier, this is only a summary of factual information and therefore has no place in the controversies page, where further references can be placed. Re-read the references provided.UYBS (talk) 20:32, 9 June 2010 (UTC)
- Factual information can be controversial. In this case the controversy is about the balance of biological vs psychosocial research. The controversy section is a better place to flesh out the issues as there is more room there for this type of topic. Right now there appears to be too much weight about this one issue in the main Chronic fatigue syndrome article. Underfunding and how other countries are addressing research should be covered in this section if good references are found.
- The controversy is in the interpretation of the information. This can go in the controversy page and fleshed out there, the summary is for the CFS page. Otherwise everything on the CFS page would be on the Controversy page, as it is all controversial. Looking around at other wikipedia pages, the AIDS page has a stigma section, which would be considered controversial if it did not use factual information to back this up. Research funding is no different to Economic impact, Definitions, the Name, or any other part of the CFS page, and would be part of any good encyclopaedia. Looking at these other parts, they too have equal or more weight than Research Funding.UYBS (talk) 21:14, 9 June 2010 (UTC)
- I read through the refs again and I don't see anything to support "Since the MRC initiative began, a number of politicians have asked the government to provide information on the number of biomedical research studies into ME, that the Medical Reseach Council has funded, so far none have been named." Please point out exactly where it says this, or remove that statement. It appears to be WP:OR as far as I can tell. --sciencewatcher (talk) 23:29, 9 June 2010 (UTC)
- This is posted earlier in the discussion. On 23rd Feb 2010 Annette Brooke MP, asked in the house of commons about ME, highlighting that the MRC had never funded biomedical research. This was the reply given. "As the hon. Lady said, research is the key to developing new treatments, transforming care and finding a cure for this debilitating condition. Research into ME continues 23 Feb 2010 : Column 279 to be a strategic priority area for the Medical Research Council. The MRC is one of the main public funders of medical research, receiving its funding through grant-in-aid from the Department for Business, Innovation and Skills. The MRC remains committed to supporting scientific research into all aspects of ME, including evaluations of treatments and studies of the biological basis of the condition. In 2008-09, the MRC spent £728,000 supporting four separate projects in this particular area. Nevertheless, we recognise there is scope for an expanded research programme for ME. The MRC has set up an expert group, chaired by Professor Stephen Holgate, to consider how best to encourage new research into ME, and how to bring researchers from associated areas into the field. The expert group arranged a small research workshop on ME at the end of last year, and the results will be published on the MRC website in due course. We also need to address the fact that not enough proposals for research are coming forward for consideration."[17] As you can see the minister does not name any biomedical research studies. I also posted this earlier, A similar question was also asked on the 28 Jan 2010. [18] "Mr. Drew: To ask the Secretary of State for Health whether his Department plans to provide funding for biomedical research into the causes, transmission and treatment of myalgic encephalomyelitis. Mr. Lammy: The MRC does not normally allocate funds to particular topics: research proposals in all areas compete for the funding available. When appropriate, high quality research particularly in areas of strategic importance may be given priority in competition for funds, but research excellence and importance to health continue to be the primary considerations in funding decisions. The MRC always welcomes high quality applications for support into any aspect of human health and these are judged in open competition with other demands on funding. 28 Jan 2010 : Column 1071W. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition." - Still no mention of the MRC funding biomedical research, they only mention psychosocial research. A [WP:OR]] is material that is not already published in reliable sources. As this is from the house of commons, it is published, and it is reliable. It should only be removed if a source can be found showing that the MRC has funded biomedical research since 2003, this may happen in the future, but for now it has not, and of course a line saying they may, cannot be added. However, the initiative is included. UYBS (talk) 00:30, 10 June 2010 (UTC)
I think you are misunderstanding WP:OR. Just because someone has not responded does not mean you can say 'x has not responded'. That is WP:OR. If you read WP:OR and WP:SYNTH I think this is made clear. In order to say what you have, you would need to find a source that explicitly says the MRC has not responded. I think it's best for now just to remove that sentence. --sciencewatcher (talk) 01:34, 10 June 2010 (UTC)
- Alternatively, the line could be changed to, "...the ministers named only psychosocial studies." This is the case after all, and the current situation does need to be accounted for. UYBS (talk) 01:58, 10 June 2010 (UTC)
- That would still appear to be WP:OR - the source mentions nothing about "psychosocial studies". And it is just your opinion that the current situation needs to be accounted for. Wikipedia is not a platform for advocacy. --sciencewatcher (talk) 13:45, 10 June 2010 (UTC)
- As you still haven't supplied a source for your statement, I have removed it. Regarding your comment that 'Any good encyclopaedia would provide up to date information', please see WP:RECENT. --sciencewatcher (talk) 19:18, 10 June 2010 (UTC)
- Agree with WP:RECENT, the last part of the sentence is not appropriate. However, the first part of the sentence would be acceptable, but does not need to be added at this time. The APPG in the near future will be reviewing the MRC, and further clarification on the current situation will no doubt be provided.UYBS (talk) 21:33, 15 June 2010 (UTC)
the name of the illness
the current page says the following "The disorder may also be referred to as post-viral fatigue syndrome (PVFS, when the condition arises following a flu-like illness), myalgic encephalomyelitis (ME), or several other terms."
this is innaccurate becuase PVFS is a very old name that is no longer used, people can get post viral fatigue without gettting full blow Myalgic ecephalomyelitis. Also the page suggests the offical name is "cfs" when this is untrue, in fact if you type in myalgic encephalomyelitis it redirects to the CFS page which is also innacurate. If you look at the WHO definition it is myalgic encephalomyelitis, if you are going to have any redirecting then if someone types in CFS then it should redirect to myalgic ecephalomyelitis, we need to change the whole title of the page to make it accurate. 217.39.36.16 (talk) 13:13, 19 May 2010 (UTC)
I have checked this and its certainly clear this page should not be called CFS, its totally innacurate, if you check the WHO listings, also people should not be redirected to CFS when they type in myalgic encephalomyelitis....it should be other way round it totally muddies the situation, CFS was a later name invented, arguably a different illness completely, the page should be called myalgic encephalomyelitis and everything else should be built upon that. Also the page wrongly states that CFS is the most common name, for decades people have referrered to M.E.217.39.36.16 (talk) 13:39, 19 May 2010 (UTC)
- This has been beaten to death in the past on these talk pages (search through the archives and you'll find quite a few discussions). However just to summarise the situation:
- - CFS is the most common name used by researchers. Do a search on google scholar and you'll find 37k refs for chronic fatigue syndrome and only 4k for myalgic encephalomyelitis.
- - The WHO listing is already mentioned here in one of the sub-articles.
- - post viral fatigue syndrome gets 2600 hits on google scholar and there is research right up to this year, so it is still used. It just gets a short mention on the page, and this is appropriate to its weight.
- - the consensus among scientists is that ME is a bad name because it implies an etiology that doesn't exist - see here. That is why the name CFS was chosen instead.
- - Many patients prefer the name ME to CFS because it implies more of a physical illness than CFS. --sciencewatcher (talk) 15:03, 19 May 2010 (UTC)
all of the above is irrelevent becuase the WHO listing IS NOT CFS...that is FACT, the illness is myalgic ecephalomyelitis, you cannot just write that out the book just becuase you feel like it, we are dealing with facts here, CFS is an addition to myalgic encephalomyleitis, not the other way round...curently its back to front 217.39.36.16 (talk) 15:09, 19 May 2010 (UTC)
- Well the scientific consensus is that CFS and ME are in fact the same illness. Wikipedia goes with the scientific consensus. --sciencewatcher (talk) 15:42, 19 May 2010 (UTC)
this is a encyclopaedia we need to stick to facts, the fact is myalgic encephalomyelitis IS the correct term and the correct listing, by not having that as the page title we are misleading the public, it is not for us mere editors to label illnesses as we please. we are also not arbiters of what is a concensus, in this situation the WHO listing should dictate the illness title, that is what WHO listings are for, defining illnesses 217.39.36.16 (talk) 16:12, 19 May 2010 (UTC)
- No, you are wrong. ME is not the correct term for the illness. However your opinion and mine don't matter. What matters is reliable sources. --sciencewatcher (talk) 16:30, 19 May 2010 (UTC)
m.e IS the correct name of the illness and any suggestion otherwise is wrong, look at WHO listing, the way the page is currently suggests ME is an annex of CFS when in fact its the other way round...there isnt a page on wikipedia for M.E in fact one cannot even search for Myalgic encephalomyelitis becuase it redirects to this page, yet CFS has its own page, its back to front, the page should be Myalgic Encephalomyelitis and then CFS should redirect to that page, that is the proper way round and the way the WHO listing has it, you cannot argue that its the other way round becuase you would be arguing with the world health organisation, remember we are dealing with facts here not opinions 217.39.36.16 (talk) 17:16, 19 May 2010 (UTC)
CFS and ME may currently be used synonymously but this doesn't mean they should be.
I know they are regarded as the same by many physicians but the fact remains that CFS and ME have different WHO classifications. They therefore cannot be described as the same illness, no matter how much some people might want them to be. We can not refer to "the illness" when referring to ME and CFS because they are not one illness.
Perhaps this article could specifically point out the WHO code discrepancy (I know it is displayed but it is not highlighted in the article) and explain that an illness cannot be defined under two different codes therefore this CFS/ME idea is incorrect —Preceding unsigned comment added by Clarethames (talk • contribs) 17:42, 19 May 2010 (UTC)
- For the argument that ME is the correct name over CFS to hold sway than it is up to the editor that asserts that point of view to show that more WP:MEDRS sources state ME is the correct name verses CFS. As sciencewatcher said, this has been debated before so please read through the archives and if there are better sources please discuss on the talk page. Note also that the guideline WP:MEDRS determines the priority of the sources. Ward20 (talk) 18:23, 19 May 2010 (UTC)
Ward20 and sciencewatcher - I think you are missing my point. I am pointing out that the WHO defines two illnesses. One is ME. One is CFS. They each have a WHO ICD number. They therefore cannot be the same illness. They may currently be used synonymously by some doctors but any article purporting to report on CFS and/or ME should point out the code discrepancy. I am not arguing that ME is correct, simply that ME and CFS are not the same thing (as backed up by the WHO page). Clarethames (talk) 18:57, 19 May 2010 (UTC)
your playing semantics here, lets just think about this for a moment, the WORLD HEALTH ORGANISATION calls it M.E no one can claim that is an innacurate or biased source, there fore this page should reflect the WHO classification which is M.E then CFS is an addition to the M.E page, thats pure and simple FACT anything else is innaccurate, one doesnt need any other confirmation than W.H.O, currently the page is back to front 217.39.36.16 (talk) 18:34, 19 May 2010 (UTC)
- Believe me, I know exactly what your saying. Find the reliable sources that state this and add it to the Myalgic encephalomyelitis topic with the references.
- The WHO is not the only source however. All sources must be considered. If you can find a number of reliable sources that state the WHO's designations supersedes all others than that would be a big plus to aid WP:Consensus for your argument. Ward20 (talk) 19:14, 19 May 2010 (UTC)
- I will not add it to a list of "alternative names"...CFS should be added to the list of alternative names and myalgic encephalomyelitis should be the page title, its obvious, WHO is the WORLD source for disease classification therefore it should be the decider here, you cannot claim that WHO doesnt meet MEDRS, you should be wholheatedly for changing the page to an accurate title otherwise the whole page is a farce 217.39.36.16 (talk) 19:22, 19 May 2010 (UTC)
- WHO is also governed by 192 member states and is responsible for the world disease classifications http://www.who.int/about/governance/en/index.html —Preceding unsigned comment added by 217.39.36.16 (talk) 19:28, 19 May 2010 (UTC)
- Ok now there needs to be a independent reliable source that states the WHO is the deciding body in this issue and specifically states the WHO considers CFS a subordiante name to ME. I am not being arbitrary in this, the Wikipedia policy of No Original Research states that the stated information must be verifiable to a reliable source. Also please note the indention formatting to make following the discussions easier, and sign your posts with 4 tildies. Ward20 (talk) 19:44, 19 May 2010 (UTC)
- ward20 you seem to have a little bit of a loose idea what the world health organisation is...there is not gonna be a such a document, you are using a reducto absurdiam arguement, in order to have the supposed document you claim, there would have to be a rival organisation of equal size and weight to compare against, there isnt such an organisation becuase THAT IS what the world health organisation is...one of its main purposes is to classify illness so people around the world dont have to have these silly debates, what WHO says is what the illness is classified as pure and simple, they classify the illness as M.E therefore this page should be called myalgic encephalomyelitis
- http://www.who.int/classifications/icd/en/217.39.36.16 (talk) 19:48, 19 May 2010 (UTC)
- Ok now there needs to be a independent reliable source that states the WHO is the deciding body in this issue and specifically states the WHO considers CFS a subordiante name to ME. I am not being arbitrary in this, the Wikipedia policy of No Original Research states that the stated information must be verifiable to a reliable source. Also please note the indention formatting to make following the discussions easier, and sign your posts with 4 tildies. Ward20 (talk) 19:44, 19 May 2010 (UTC)
- WHO is also governed by 192 member states and is responsible for the world disease classifications http://www.who.int/about/governance/en/index.html —Preceding unsigned comment added by 217.39.36.16 (talk) 19:28, 19 May 2010 (UTC)
- Don't need a rival organisation of equal size and weight to compare against, just some relable sources that satisfy WP:MEDRS that state the WHO's classifications take precidence in the nameing. Additionally the guideline Naming conventions is an issue here. "The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources,". Here the guideline does mention the WHO, so your argument has some weight, but the first sentence is why CFS was used in the article. Ward20 (talk) 20:04, 19 May 2010 (UTC)
MEDRS is irrelevent to this issue, this is not about research..this is about disease classification we are talking about, you should have grasped that by now, MEDRS is about reliable research 217.39.36.16 (talk) 20:06, 19 May 2010 (UTC)
this document describes some of the history of diease classification and the function of the WHO classifications "designed to enable consistancy of coding throughout the world" http://www.searo.who.int/LinkFiles/Country_Annual_Health_Reports_classification.pdf 217.39.36.16 (talk) 19:57, 19 May 2010 (UTC)
ward20 your use of "no original research" is also irrelevent, WHO classify illness, its not a research paper, its a classification of a disease, therefore THE best evidence of disease classification is the governing body of worldwide disease classification, i.e W.H.O, you seem to wish to contradict the whole world! 217.39.36.16 (talk) 20:05, 19 May 2010 (UTC)
- The above statement has a point - who verifies the World Health Organisation? I imagine no one; it is the one body who are responsible for defining illnesses and classifying them. As such, it does not seem possible to find an independent source that the WHO is "the deciding body" - it is internationally accepted that this is the case. I appreciate that you are following Wikipedia policy in requesting this information. However, if the international medical community use the WHO codes (which they do) - this should be noted on the page. ME is not an alternative name for CFS because they are not the same thing. Therefore I cannot post this under a discussion about alternative names for CFS. I apologise that I am repeating myself. The two conditions CFS and ME should have separate pages. By all means, state that the two have been linked and get used synonymously by some people, but please also highlight the code discrepancies. —Preceding unsigned comment added by Clarethames (talk • contribs) 20:07, 19 May 2010 (UTC)
Ward20 also the wiki rules about naming disease that you cited states the following
"Where there is a dispute over a name, editors should cite recognised authorities and organisations rather than conduct original research.[3] Where there are lexical differences between the varieties of English, an international standard should be sought. Some examples include:
* Diseases—The World Health Organization International Statistical Classification of Diseases and Related Health Problems (ICD 10) or the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR)."
basically the wiki states that the WHO classification is an international standard..... so therefore in this case WHO dictates the classification217.39.36.16 (talk) 20:09, 19 May 2010 (UTC)
- See here where the WHO in ICD-10 classifies ME and CFS under G93.3 Other disorders of brain, and both of those are subodinate to PVFS. This is a complex issue. CFS is the most common name used[13], but ME and PVFS are also prominent in the WHO classification. Source it and report on it following WP:policy in the article, don't make this an ideological issue please. Ward20 (talk) 20:26, 19 May 2010 (UTC)
- The weight of reliable sources, including the CDC, clearly trump WHO's classification when considering the name to use. This clearly is an ideological/POV issue. Lots of new users seem to have come on here in an effort to put this into the article. --sciencewatcher (talk) 20:33, 19 May 2010 (UTC)
this is not ideological this is an attempt to get an accurate page, your comment above confirms that the page has no right to be called "CFS" and "myalgic encephalomyelitis" should also not automatically redirect to "CFS"...CFS is subordinate to M.E...also you said that g93.3 states CFS, it doesnt, it actually states M.E under post viral fatigue syndrome, therefore as M.E was the original name it makes sense that we call this page myalgic encephalomyelitis in case people get confused with just "post viral fatigue" which people can get from having a bout of flu for example, this page must first and formost reflect G93.3 217.39.36.16 (talk) 20:36, 19 May 2010 (UTC)
sciencewatcher please dont claim POV, unless you are accusing WHO of POV too 217.39.36.16 (talk) 20:38, 19 May 2010 (UTC)
I could not see the page title edit button, the new wikipedia layout is throwing me, where is the change page title button? 217.39.36.16 (talk) 20:53, 19 May 2010 (UTC)
sciencewatcher I noticed you undid a revert without discussing it here, how can I edit the page as ward20 suggested if you keep undoing it? stop making POV reverts217.39.36.16 (talk) 21:20, 19 May 2010 (UTC)
- 217.39.36.16, the title on the Classification and external resources box you altered have the following descriptions if you follow the links:
- ICD-10: Benign myalgic encephalomyelitis
- ICD-9: Chronic Fatigue Syndrome
- MedlinePlus: Chronic fatigue syndrome
- eMedicine: Chronic fatigue syndrome
- MeSH: Chronic fatigue syndrome
- Your edit was not supported by the links in the box. You need to come up with sources that support your position and not just your opinions. Ward20 (talk) 22:02, 19 May 2010 (UTC)
sciencewatcher your claim that states that CDC trumps W.H.O is crazy, it means essentially you are saying the usa gets to trump the world. W.H.O trumps all organisations re diseaese classificiation. @ward20 in that case we need to only have the ICD-10 citation, so either you have 2 completely separate pages, or you have the main page as myalgic enecphalomyelitis and have CFS as a subset or subheading of that, that seems the only logical way, becuase WHO citation must hold the most weight as it does in the whole world. Mandrake99 (talk) 22:06, 19 May 2010 (UTC)
- I think that you are mistaken as to the point sciencewatcher was trying to make. It is wikipedia guidelines, such as WP:COMMONNAME which determine article name.--Literaturegeek | T@1k? 22:15, 19 May 2010 (UTC)
literature geek please see wikis own rules of naming.... they state: "Where there is a dispute over a name, editors should cite recognised authorities and organisations rather than conduct original research.[3] Where there are lexical differences between the varieties of English, an international standard should be sought. Some examples include:
- Diseases—The World Health Organization International Statistical Classification of Diseases and Related Health Problems (ICD 10) or the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR)."
basically the wiki states that the WHO classification is an international standard..... so therefore in this case WHO dictates the classification therefore currently the box on the right of the current page has TWO separate illnesses, so either we have a page titles myaligc encephalomyelitis and have CFS as a subheading or we have a separate page for MYalgic Encephalomyelitis Mandrake99 (talk) 22:21, 19 May 2010 (UTC)
- And if you actually look up G93.3 the title is "postviral fatigue syndrome", which you said we should remove! --sciencewatcher (talk) 23:06, 19 May 2010 (UTC)
- Ah good point Mandrake, but thing is the issue of consensus, which is going to be difficult to achieve when recognised authorities use different names. There is if other options fail, an option of setting up an request for comments. The second problem is that you say that they are two seperate disorders. Therefore if that is true, why are advocating for renaming this article rather than starting a seperate article for a seperate condition?
- Recently I was involved in a civil dispute, regarding renaming alcoholism to alcohol dependence. All recognised authorities including WHO call it alcohol dependence or similar but alcoholism won out due to lack of consensus. Life is tough sometimes. :(--Literaturegeek | T@1k? 23:12, 19 May 2010 (UTC)
- I am advocating starting a separate article for a separate condition but I was told I had to put my edit under "alternative names for CFS". This doesn't make sense. If the WHO defines ME and PVFS together and CFS as a separate disorder then there should be two articles. One about ME/PVFS ICD-10 (and discrepancies in these two titles discussed in article). The other should be about CFS ICD-9. Perhaps one should link to the other but they must be separate. —Preceding unsigned comment added by Clarethames (talk • contribs) 09:24, 20 May 2010 (UTC)
thats an interesting point clarethames. re sciencewatchers comment, I didnt say remove PVFS I said the sentance and page needed changing as currently it suggests PVFS and ME are "nicknames" for CFS, which is clearly untrue, infact ME was around long before CFS was invented, and my concern with PVFS was that it sounds a bit like "post viral fatigue" which can come on after any flu infection, rather than a full blown syndrome, re literature geek Wiki rules state when there is a name dispute such as this then "an international standard should be sought" i.e WHO which trumps any other classification, if W.H.O wanted to erase ME then they wouldnt still list it, but they didnt, they currently have CFS and ME as separate codes. so the only way forward on this are the following options it seems, 1.renaming the page Myalgic Encephalomyelitis and then having CFS as subheading, this would mean the classification box would need dividing somehow becuase currently it lists 2 different illnesses, or 2 having a page solely for Myalgic encephalomyelitis, they seem the only 2 options unless I have missed an option?Mandrake99 (talk) 13:00, 20 May 2010 (UTC)
- ICD does not list CFS and ME separately. They do not list CFS at all in fact. But if you do a search for 'chronic fatigue syndrome' it shows two results: G93.3 and R53. Perhaps we should list R53 in the article. Then there is 'fatigue syndrome' F48.0 (Neurasthenia), a term not even used any more. And you're right about PVFS following any viral illness and not necessarily leading to CFS. There is a short description of PVFS in the alternative names article, but it can be expanded if you like (with appropriate sources - I seem to remember we had difficulty finding sources for that). --sciencewatcher (talk) 14:24, 20 May 2010 (UTC)
you are correct in saying that there is no mention of CFS on the M.E classification, ICD does list CFS as a differeny classification, G93.3 is Myalgic encephalomyelitis there is no mention of CFS, which was why my original point was that the page should be called Myalgic Encephalomyelitis and then perhaps a subheading for CFS showing that its a different code altogether, that would be a truer representation than the current page. Currently the box of classifications on the wiki page has 2 separate listings i.e one ME and then CFS. I am glad we agree about the confusion surrounding post viral fatigue rather than post viral fatigue syndrome. Therefore I propose we make this whole page Myalgic Encephalomyelitis then have a subheading for CFSMandrake99 (talk) 14:46, 20 May 2010 (UTC)
- Have you actually looked at the ICD? G93.3 is titled "Postviral fatigue syndrome". "Benign myalgic encephalomyelitis" is just listed as an a sub-heading. So if you want to follow ICD then we will have to rename the article "Postviral fatigue syndrome". Is that what you want? --sciencewatcher (talk) 15:19, 20 May 2010 (UTC)
Of course I have looked at the G93.3 dont be silly! lol, I wouldnt have highlighted it if I hadnt seen it. well it seems we have agreed that the page cannot stay as it is, as CFS clearly is not an option when presented with the disease classification codes, you rightly say CFS isnt even mentioned on G93.3. therefore I suggested myalgic encephalomyelitis due to the fact that post viral fatigue is a well known disorder, i.e from just catching flu or something one can get post viral fatigue, but it may NOT go onto become full blown post viral fatigue SYNDROME. therefore to avoid confusion to the public, to me it seemed that myalgic encephalomyelitis is the most true to the classification. Also throughout history people have become used to the term M.E so will be familiar with it.Mandrake99 (talk) 15:35, 20 May 2010 (UTC)
- So now that I have pointed out that G93.3 isn't actually titled ME you say we should use ME because it is what has been used throughout history? In that case why not use Neurasthenia, which has been used for much longer? As has been pointed out above, in wikipedia we use the common name, and the name that is by far the most commonly used by researchers is CFS. I never agreed with you that we need to change the name of the article - CFS seems to be the best name, so I think we should leave it as it is. --sciencewatcher (talk) 16:09, 20 May 2010 (UTC)
- Passing the buck: The need for a secondary source from another medical authority to validate the medical authority of WHO as a primary source seems a little ironic. Do we also need a tertiary source to validate said secondary source as a "medical authority", where does the source sourcing end? - Tekaphor (TALK) 16:14, 20 May 2010 (UTC)
sciencewatcher you are twisting my words and I do not like it, so please behave yourself. what I actually said was due to the confusion between post viral fatigue and post viral fatigue SYNDROME, then in my view the most logical thing to do is call the page myalgic encephalomyelitis, then we can have subheadings explaining the various naming issues as M.E is the most accurate according to the classification, we could even have a subheading all about post viral fatigue syndrome and mention the early outbreaks, indeed I beleive there was some viral outbreak in the 1950s, that would all be interesting and useful aditions to the page. currently the CFS title of this page is misleading and incorrect, we have a chance to actually make a decent page here so lets all agree that we want an accurate representation. In order to bring this debate to some closure, I propose calling the page myalgic encephalomyelitis, then have subheadings for PVFS and explain its history, then have a subheading for CFS and explain the controversies/confusions surrounding that, then the page will make sense, all the above is contained within one history of a disease. Mandrake99 (talk) 16:18, 20 May 2010 (UTC)
@tekaphor I agree, we do not need to validate the world health organisation, its their job to classify illness so we can assume they are reliable :-)Mandrake99 (talk) 16:24, 20 May 2010 (UTC)
- Your logic is escaping me. --sciencewatcher (talk) 17:25, 20 May 2010 (UTC)
- you fail to say who you are referring to sciencewatcher, if it was tekaphor than I fail to see how you cannot grasp that W.H.O is the most reliable source there is, and if its referring to me, then I also fail to see how you cant grasp the logic, I have laid it out many many times on this thread, if your struggling to grasp the issue perhaps you should take a step back for a while and get your head round it all.Mandrake99 (talk) 17:29, 20 May 2010 (UTC)
- Just to muddy the waters a bit, and I'm not taking sides on this issue as I can see the logic on both sides, but let's say we create separate ME and CFS articles—or even just rename it to ME with a CFS subheading, as suggested—that may create several additional issues in that much of the research doesn't make that type of distinction and therefore there's inherently going to be problems with citing these sources.
- As for the issue itself, while the world may take WHO as a preeminent authority, Wikipedia (as repeatedly stated by various authors on all sides of this debate) doesn't necessarily. The names used in the ICD-10, DSM-IV, MeSH, etc.—and let's not forget the research itself—all need to be considered before making any name changes in the article. —RobinHood70 (talk • contribs) 18:29, 20 May 2010 (UTC)
- Nobody is disputing that WHO is a reliable source. Mandrake, it is your logic that escapes me. You say that we must use the WHO. ICD G93.3 is titled 'Postviral fatigue syndrome'. So then you say we should NOT use WHO because PVFS is confusing. Instead we should use ME for some other reason (ditching WHO). Where is the logic in that? Either we use WHO and end up with an article titled PVFS, or we don't.--sciencewatcher (talk) 19:21, 20 May 2010 (UTC)
@robinhood, you have highlighted one of my main reasons why the page needs to be called myalgic encephalomyelitis, and then CFS as a subheading, this is becuase CFS has come later and bastardised the classifications, it has muddied the waters hugely, that wiki rules also do state when there is a dispute to revert to the international standard, and lists WHO as number 1 in this regard, CFS is a later invention in the history of Myalgic encephalomyeltis and that is exactly why the page needs renaming, as currently its suggested ME is "just another name for CFS" whereas if anything its the other way roundMandrake99 (talk) 19:23, 20 May 2010 (UTC)
@sciencewather, I have asked you above to stop twisting my words please, I am aware of the PVFS listing, it is listed with PVFS and M.E but CFS is nowhere to be seen. so what IS illogical is calling the page CFS as you wish it to be. I merely suggested that seeing as though post viral fatigue is involved in many illnesses rather than a full blown SYNDROME then the most logical listing according to W.H.O is myalgic encephalomyelitis, and I also noted that the term M.E is a very well known term, one could argue it is THE original term, I also offerred a solution to the PVFS issue, which was to put a subheading detailing the history of PVFS i.e the early outbreaks. I hope you can understand this, I have tried to be as clear as possible so its easy to understandMandrake99 (talk) 19:27, 20 May 2010 (UTC)
- The ICD 10 consists of three volumes. The 3rd is called the alphabetical index which catagorizes names and terms not included in the Volume I. On page Page 528 of the alphabetical index cfs is listed as G93.3 with PVFS next to it. When you search the online ICD 10 version at the WHO for Chronic Fatigue Syndrome using full search it picks up CFS at G93.3 and "Chronic Fatigue" at R53 due to searching vol's 1&3. Searching without the index only picks up "Chronic Fatigue" at R53. Saying, "ICD does list CFS as a different classification," is incorrect. The logic above to rename the article ME on this basis is incorrect. The ICD 10 lists BME and CFS in the same designation and doesn't specify precedence.
- WP:COMMONNAME is a clear consideration, and there is presently a MEDRS source that states CFS is the most common name. Now if editors present sources that say ME is the most common name, or that certain medical authorities list ME as the most authoritative name, then there is a reasonable argument. At this point there is misinformation and opinion, not policy.
- There already has been compromise by calling ME by it's modern and most used name and not BME that the ICD 10 uses. Previously other editors had insisted on BME. I urge new editors to use reliable sources, research the sources and the archives, and collaborate. This article is difficult and when collaboration breaks down the article, encyclopedia, and the editors suffer.
- @ Tekaphor no I don't believe we need a medical authority to validate the medical authority of WHO. I do believe we need a MEDRS to state the WHO's classification system is the final arbiter (which probably exists) and that their classification of the name ME takes a higher status than CFS. But the WHO's classification system simply lists BME and CFS under G93.3 Diseases of the nervous system and there is no guidance to specify which takes precedence AFAIK. Ward20 (talk) 19:28, 20 May 2010 (UTC)
ward20 please remember we have talked about this above, please stop dragging up the same wiki rule about common names, when the wiki rules clearly state
"Where there is a dispute over a name, editors should cite recognised authorities and organisations rather than conduct original research.[3] Where there are lexical differences between the varieties of English, an international standard should be sought. Some examples include:
* Diseases—The World Health Organization International Statistical Classification of Diseases and Related Health Problems (ICD 10) or the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR)."
basically the wiki states that the WHO classification is an international standard..... so therefore in this case WHO dictates the classification we have been over this 3 times aboveMandrake99 (talk) 19:35, 20 May 2010 (UTC)
- Mandrake99, just where does the WHO state that ME is the superior classification for this illness? Ward20 (talk) 19:39, 20 May 2010 (UTC)
lollllll ward20 please this is some bizzare stuff your asking, W.H.O classifies illness, it doesnt comment on its classifications, you should know that come on, what I can confirm is ME and CFS certainly aint on the same classificationMandrake99 (talk) 19:49, 20 May 2010 (UTC)
- How can you confirm that when I just gave the links to ICD 10 volumes 1 and 3 above that state ME and CFS are classified in the same place at G93.3 Diseases of the nervous system? Ward20 (talk) 19:57, 20 May 2010 (UTC)
- Yes, Ward20 is right. Do a search in the alphabetical index for g93.3 and you will find BME, CFS and a few other terms all classified as G93.3. --sciencewatcher (talk) 20:08, 20 May 2010 (UTC)
lol this is getting tiresome, http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933 whats your issue with having an accurate page and reflecting reality, which is M.E the top of the list then CFS was a later invention, the wiki page should relfect that or do you prefer history to be backwards?Mandrake99 (talk) 20:33, 20 May 2010 (UTC)
- There were other names before ME, such as Epidemic Neuromyasthenia (which is also listed as G93.3 in ICD-10) and Neurasthenia. --sciencewatcher (talk) 21:04, 20 May 2010 (UTC)
- indeed that would be an interesting historical addition once the page has been sorted out, that would come under history, Epidemic neuromyasthenia is not M.E or CFS though so that is not relevent currently but could be added later under a historical backstory section, so we need to sort this all out, the only viable candidate is Myalgic encephalomyelitis, unless you are intent on having 2 separate pages, thats what needs to be sorted, or we need to take this to a higher level of moderation. The most logical solution is quite obviously to have the page as myalgic encephalomyelitis then build everything from that foundationMandrake99 (talk) 21:52, 20 May 2010 (UTC)
- (edit conflict) First question: What's your reliable source for the fact that Myalgic Encephalomyelitis was the term originally used? My impression was that CFS came first (or perhaps the CFIDS variant or something similar) and that ME came later.
- Second question: Where do you see the ICD-10 touted as primary? In the very sentence you keep quoting, it says ICD-10 or DSM-IV (to shorten it down and not requote the whole thing). The fact that ICD-10 came first in the sentence is, I would think, strictly a matter of having to pick something to come first and not an indicator of precedence.
- Regardless of the above, when I Google "Myalgic Encephalomyelitis", most or all of the hits I get back have phrasing within them to the effect of "Chronic Fatigue Syndrome or Myalgic Encephalomyelitis", and most of them put CFS first. While they may or may not be considered reliable sources, depending on which ones you're looking at, that would seem to preclude your assertion that they're absolutely confirmed as different conditions or that ME should take precedence. The article states that CFS is the most common term, and that information is backed up by a reliable source. If your information is that ME is the most common term, or that it is different from CFS, and you have reliable sources that prove this beyond any shadow of a doubt, then we can and should change the article's title and/or content. Until then, I don't really see any pressing argument that couldn't be countered by almost the same argument, but with the term CFS substituted for ME.
- Finally, before you go off accusing us all of having an agenda, please remember that most of us who edit the article either have CFS ourselves or have had some experience with it. —RobinHood70 (talk • contribs) 21:59, 20 May 2010 (UTC)
- sorry I dont understand who robinhood is talking to here, but no one has accused anyone of an agenda, I certainly havent, I am baffled why people need to prove W.H.O classifications, CFS and ME are listed differently, M.E was always the original and first, in the 80's for example there was no "CFS", thats my point, the page should be M.E then build from that foundation, with a subheading explaining the various name issues etc, CFS is a later invention, different code etc Mandrake99 (talk) 22:04, 20 May 2010 (UTC)
- I was talking to you. While you haven't used the term "agenda", you have accused people of twisting your words or having issues — these imply that you think we have some kind of bias or agenda that we're trying to put forth. As for the remainder of your assertions, you again supply the assertions without backing them up with anything. Nobody's questioning the information in the ICD-10...we've all seen it. What we question is why you think that it trumps all other classification systems, and, as I said, what's your source for the information that ME predates CFS? I remember the history differently than you do, but in a quick search, I couldn't find anything saying one or the other came first. So why should the page use one subsection of ICD-10 and not the main section of PVFS, and where's the proof that ME was the original name? Oh and as I think it was Ward20 pointed out, "Chronic Fatigue" is a different classification, but that is not the same as "Chronic Fatigue Syndrome", which is the same classification. —RobinHood70 (talk • contribs) 22:13, 20 May 2010 (UTC)
Rob, if you have a look at the alternative names article you'll see that the term ME was coined in the 50s and CFS in the 80s. However just because it came first doesn't mean we should name the article ME. As I pointed out above, other terms came even before ME. --sciencewatcher (talk) 22:28, 20 May 2010 (UTC)
- Thanks, SW. I looked around quickly, but obviously not in the right places. —RobinHood70 (talk • contribs) 23:00, 20 May 2010 (UTC)
- The term ME did come before CFS, but the term CFS was not intended to replace the term ME in the USA. The CDC at this current time lists ME as a similar medical condition, not as the same condition.[21] "Similar Medical Conditions. A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis." In the UK, ME has been subsumed by CFS into CFS/ME, a neurological disease. The definition used by UK officials differs from that used by the CDC, and encompasses a more heterogenous group of patients, all experiencing the symptom of fatigue. As for there being much earlier terms for ME, Neurasthenia is in fact still listed by the WHO under F48 Other neurotic disorders, therefore it is regarded as a mental health disorder and has no relationship to ME or CFS, or Postviral Fatigue Syndrome. [22] Also, Epidemic Neuromyasthenia is not listed by the WHO under G93.3. [23]UYBS (talk) 22:38, 8 June 2010 (UTC)
I personally don't think the article should be renamed as ME, just because CFS is now the most commonly-used term (Google finds myalgic encephalomyelitis on 142,000 pages, but chronic fatigue syndrome on 1,560,000 pages). I agree that the name CFS does sound like its is trivializing the disease a bit (there are many more horrible symptoms other than just fatigue in CFS). But in any case, lots of people are now adopting the abbreviation CFS/ME or ME/CFS anyway, rather than CFS, to indicate equivalence. Here is a history of the names for this disease: http://www.prohealth.com/library/showarticle.cfm?libid=12435
I suppose one could consider entitling the article Chronic fatigue syndrome (Myalgic encephalomyelitis) if it was generally felt that a name change was in order Drgao (talk) 03:45, 21 May 2010 (UTC)
I would like to chime in as someone whose had it for 10 years. Myalgia means "muscle pain". Encephalomyelitis is a general term for inflammation of the brain and spinal cord. I don't have either one of those problems and with the findings of a possible viral cause (still in question) it wouldn't make sense to change the name yet. People really hate the name chronic fatigue, but ME doesn't really make sense describing CFS either. I think most people use the term CFS in the US. ME is mostly used in the UK. Garrett12345
The heading should be Chronic Fatigue Syndrome & Myalgic encephalomyelitis. CFS being first for alphabetical purposes. The article can then explain why there may or may not be a distinction. UYBS (talk) 13:29, 6 June 2010 (UTC)
- As 'benign myalgic encephalomyelitis' is the name the WHO gives the disease, this should be the name, CFS is indexed to this, not the other way around. Postviral fatigue syndrome, is the name given when you have fatigue after a virus, BME and CFS are diagnosed only after being ill for six months. The WHO does not say whether the diseases are the same or separate. They both appear at G93.3, where as CFS, is referenced to the G93.3. In the USA, CFS is used, and the CDC says CFS is not ME, in the UK CFS/ME is used, in Scotland they have proposed separate definitions for ME and CFS. The NICE guidelines also recognise the WHO definition. I suggest changing the heading of the page to CFS, PVF, ME to reflect this. (alphabetically) The issue of saying whether the disease or diseases are neurological is therefore clear, all three are listed at G93.3 Neurological.UYBS (talk) 20:55, 19 June 2010 (UTC)
Neurological condition
The start of the page begins with, 'Сhronic fatigue syndrome (CFS) is the most common name[1] given to a variably debilitating disorder or disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months.' This should be changed to, 'Сhronic fatigue syndrome (CFS) is the most common name[1] given to a neurological condition or conditions generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months." CFS is indexed by the WHO to G93.3, the UK Government & all UK official medical bodies recognise the WHO classification of CFS/ME as a neurological condition, "I want first to put on the record that we accept the World Health Organisation's classification of ME as a neurological condition of unknown cause." [24] As the WHO is the authority for health within the United Nations system, and responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends. There categorisation should be followed. Furthermore, it is mandatory for all member states (which includes the UK, USA, Japan, etc.) to use the ICD-10 codes.[25]UYBS (talk) 22:02, 15 June 2010 (UTC)
- But it is not agreed to be neurological. We already say 'The etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker'. --sciencewatcher (talk) 22:26, 15 June 2010 (UTC)
- If everyone agreed it was neurological, home come so many people are researching XMRV? The WHO listing is just a that - a listing. Their listing doesn't mean that it is neurological any more than it means 'benign myalgic encephalomyelitis' is the correct name/etiology. Oh, and the UK parliament isn't exactly a reliable source for medical information. --sciencewatcher (talk) 17:17, 16 June 2010 (UTC)
- Being classified as "neurological" does not mean the cessation or limitation of viral research. It is obvious that CFS is not "universally agreed" to be a neurological, but the questions are (1) is there a reliable source for that, (2) how relevant are those who disagree with WHO's current classification of ME/CFS? And besides a letter authored by two psychiatrists, how many other doctors and scientists have openly rejected the WHO's ICD and authority? The article currently states "The etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker." Perhaps the following statement can be inserted in front of that: "Although classified by the WHO as a neurological illness, ...". - Tekaphor (TALK) 02:40, 17 June 2010 (UTC)
Being classified as neurological is not inconsistent with being viral in origin. A number of well recognised disorders classified as neurological have a known viral cause, and others are suspected of it. The formal classification system currently puts ME & CFS in neurological, so that is how it should be described. It can still have a viral cause. —Preceding unsigned comment added by 95.211.99.92 (talk) 10:36, 17 June 2010 (UTC)
- But you're cherrypicking the WHO's neurological classification and rejecting it's name 'benign myalgic encephalomyelitis'. There is no basis for calling it neurological, and in fact the science points more towards a psychiatric classification. --sciencewatcher (talk) 14:06, 17 June 2010 (UTC)
- "But you're cherrypicking the WHO's neurological classification,". Are you joking? There is no dispute about where it is currently formally classified. Whether it should be there or not is not relevant to a WP article, and is not decided by WP editors.
- "There is no basis for calling it neurological," Well, apart from that whole silly formal classification thing.
- "and in fact the science points more towards a psychiatric classification." A very contentious and OR or synth claim, full of holes. It has not been resolved at the scientific level at all. Until it is and the formal classification is changed, then it should remain under neurological. All I got to say on this. —Preceding unsigned comment added by 213.186.121.4 (talk) 01:58, 18 June 2010 (UTC)
- I suggest the article needs to mention all the major bodily systems that are dysfunctional in CFS/ME, something like this:
- Сhronic fatigue syndrome (CFS) is the most common name[1] given to a variably debilitating disorder or disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months. The disease process in chronic fatigue syndrome displays a range of neurological, immunological, endocrine system abnormalities.
- That sounds reasonable. --sciencewatcher (talk) 17:26, 17 June 2010 (UTC)
- Sorry, I meant to say 'postviral fatigue syndrome', which was rejected by UYBS even though that is the name that is given to G93.3 by the WHO in the online version of ICD-10. --sciencewatcher (talk) 14:43, 18 June 2010 (UTC)
- Sciencewatcher you posted that, 'postviral fatigue syndrome', which was rejected by UYBS" - where did I say that?
- As 'benign myalgic encephalomyelitis' is the name the WHO gives the disease, this should be the name, CFS is indexed to this, not the other way around. Postviral fatigue syndrome, is the name given when you have fatigue after a virus, BME and CFS are diagnosed only after being ill for six months. The WHO does not say whether the diseases are the same or separate. They both appear at G93.3, where as CFS, is referenced to the G93.3. In the USA, CFS is used, and the CDC says CFS is not ME, in the UK CFS/ME is used, in Scotland they have proposed separate definitions for ME and CFS. Sciencewatcher, when a Health minister makes a speech, she is speaking for the Department of Health, ie. the NHS, NICE. She represent's them. So it is a reliable source. The NICE guidelines recognise the WHO definition also, read them. I suggest changing the heading of the page to CFS, PVF, ME to reflect this. (alphabetically) The issue of saying whether the disease or diseases are neurological is therefore clear, all three are listed at G93.3 Neurological.UYBS (talk) 21:23, 18 June 2010 (UTC)
Sorry, it was actually Mandrake99 who rejected PVFS. See above for a recent discussion about the name of the illness. --sciencewatcher (talk) 21:59, 18 June 2010 (UTC)
- As the official classification is neurological, it should say this at the start of the page.UYBS (talk) 08:39, 19 June 2010 (UTC)
- If you have a look, you'll see Tekaphor has added a mention of this to the lede. --sciencewatcher (talk) 16:47, 19 June 2010 (UTC)
Blood donation ban in UK
The source says ME/CFS not CFS.[26]UYBS (talk) 22:27, 18 June 2010 (UTC)
- It says ME otherwise known as CFS. Many of the sources we use also say CFS/ME but we generally just use CFS throughout the article unless the reference specifically uses just one term (e.g. talking historically about ME). --sciencewatcher (talk) 23:04, 18 June 2010 (UTC)
- The source also uses ME and ME/CFS, because that is the official name in the UK. Some patients in the UK have an ME diagnosis, some have a CFS diagnosis. Otherwise you are saying that those diagnosed with ME can donate blood, which is untrue. It should read ME/CFS.UYBS (talk) 08:34, 19 June 2010 (UTC)
- The source says "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS)". --sciencewatcher (talk) 16:46, 19 June 2010 (UTC)
- The source say's, "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered. The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients." As you can see the name used is ME/CFS. CFS nor ME are the terms used in the UK, the term used is ME/CFS, because patients in the UK have been diagnosed with ME/CFS and ME previously. The NICE guidelines also use CFS/ME.UYBS (talk) 20:03, 19 June 2010 (UTC)
- If you look here you will see that the NHS called it CFS (they say 'CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both terms are commonly used (see box, below left).'). --sciencewatcher (talk) 21:05, 19 June 2010 (UTC)
- Look at the NICE guidelines, it is CFS/ME. NHS choices is a soft, for the general public, advice site. It is not using the official term, which is CFS/ME. Otherwise those with an ME diagnosis would be able to donate blood. The MRC also used the official term, CFS/ME. As does the Department of Health, the British Association for Chronic Fatigue Syndrome/ME (BACME), the CMO, and the CFS/ME clinics.UYBS (talk) 13:00, 20 June 2010 (UTC)
- The previous WP:consensus has been to use CFS on the main article unless the source specifically states one of the other alternative names exclusively. Please introduce ME/CFS or CFS/ME into the Alternative names for chronic fatigue syndrome article with a source that states who is using the term and if possible the prevalence of use. That is the best way to establish notability of the term in relationship to the other terms in use. Thanks. Ward20 (talk) 14:26, 20 June 2010 (UTC)
- I added a subheading for Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) into the Alternative names for chronic fatigue syndrome article, Sciencewatcher has removed this, and placed the following, "Many patients, and some doctors, especially in the United Kingdom, prefer to use ME on its own or in conjunction with CFS (ME/CFS or CFS/ME) because they believe it implies a more serious illness than the term chronic fatigue syndrome which focuses simply on fatigue.[20] The term CFS/ME is also used extensively by the UK government and NHS.[21]" under the Myalgic encephalomyelitis subheading. On the talk page, I added the following:
The entire paragraph needs rewording. "Many patients, and some doctors, especially in the United Kingdom, prefer to use ME on its own or in conjunction with CFS (ME/CFS or CFS/ME) because they believe it implies a more serious illness than the term chronic fatigue syndrome which focuses simply on fatigue." Should not include the term CFS/ME, as that is the official term in the UK, and the term that many patients, and some doctor, do not like to use. Here is a patient example [27] Also 'extensively' is incorrect, as CFS/ME is the official term. Furthermore, this term has no place under the subheading of Myalgic encephalomyelitis, just as it would have no place under Chronic fatigue syndrome, or CFIDS, or PVFS. It needs it own subheading. Another example of the use of CF/ME comes from Wessey's department at Kings college [28] Notice how this term is used at the top of every source I have provided. Or are you saying that King's college are wrong? Or the NICE guidelines are wrong, or the CFS/ME clinics, or the DWP, or the Government?UYBS (talk) 16:18, 20 June 2010 (UTC)
- A quote from the Parliamentry 'Inquiry into the status of CFS/ME and research into causes and treatment', "The Group feels the condition deserves a name that reflects its pathology but in view of the contentions surrounding it, it is probably wise not to be over restrictive hence we have used the term CFS/ME. We have used this term as it is the recognised term in the UK. It does not reflect the groups’ opinion on what the name should be." [29]UYBS (talk) 16:50, 20 June 2010 (UTC)
Discussion continued here. --sciencewatcher (talk) 20:50, 20 June 2010 (UTC)
- Continued discussion of ME or CFS in blood ban in UK:
- Since, "In the United Kingdom, the term myalgic encephalomyelitis (ME) is often used by patients to describe the symptoms of CFS",[14] IMO in this instance, the wording, "The UK Secretary of State for Health has stated that ME or CFS patients cannot give blood.." is more appropriate to the source that states "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS)...",[15]. However, I believe it is a relatively minor point. Effort could be better used to add relevant material to the article rather than a large argument over this wording. Ward20 (talk) 21:51, 20 June 2010 (UTC)
- I agree it is a very minor point. It seems that UYBS is the most recent in a series of users who have come onto this article in an attempt to push the POV that ME and CFS are different illnesses. But I thought you said above that we normally keep the wording CFS unless the source specifically uses one name exclusively? In this case the source uses both CFS and ME and specifically says that they are two terms for the same illness. --sciencewatcher (talk) 03:42, 21 June 2010 (UTC)
- Poor wording on my part. I was originally thinking explicitly and simply had a brain fart. The post was up for a while before I realized it wasn't precisely what I wanted to say. I thought about changing it but didn't. Later I tried to explain how I interpreted the source and why I added ME. I apologize my talk page discussion didn't mirror my edits there. Ward20 (talk) 05:03, 21 June 2010 (UTC)
- The CMO report is from 2002, since then the name has been changed to CFS/ME, as stated by the Parliamentary 'Inquiry into the status of CFS/ME and research into causes and treatment', which was published in 2006. The term CFS/ME does not define two disease, it defines one disease called CFS/ME. It is the official name. The source for the blood ban does not state at any time what the official name is, but the Parliamentary Inquiry does.UYBS (talk) 21:52, 21 June 2010 (UTC)
- How can a Parliamentary inquiry be irrelevant to the name, you cannot say that Parliament is lying or incorrect. It is the Parliament of the UK, it is reliable. I know it is difficult when you are not from the UK, but that is the official name, for one disease. You would have to provide a source that states otherwise to change this. A source that says the official name in the UK is..... A source that is more recent. You have not, but I have. There is no POV on thisUYBS (talk) 22:17, 21 June 2010 (UTC)
WLU, the Canadian blood service has banned CFS patients from donating, it has not discouraged. [30] The Australian blood service has banned patients, it has not discouraged. [31] The NZ Blood service has banned patients, it has not discouraged.[32] The AABB in the USA has recommended 'actively discouraged' CFS patients from donating blood.[33]
In the UK the blood ban has been in place before the discovery of XMRV, but does not include those who have recovered from CFS/ME. [34] The UK blood ban was also confirmed on the 11th Feb 2004, by Parliamentary Under Secretary of State The Lord Warner, who confirmed in writing that to the Countess of Mar that people with CFS/ME are not permitted to be blood donors. "We have checked with the National Blood Service and they have provided the following information. The NBS guidelines on donor selection on ME refer to those on Post Viral Fatigue Syndrome. The Guidance is: defer from blood donation until recovery. The underlying logic is that this condition is possibly viral and therefore the NBS cannot accept the risk of possible transmission by blood. Since the condition is very variable and sometimes prolonged, it could become a lifetime ban in any particular case. I have copied this letter to the House (of Lords) library". [35] </ref> UK official definition page 5 [36]
Therefore NZ, Canada, & Australia have all banned blood donations, they have not discouraged donations. The USA has recommended actively discouraging donations, and the UK has had a ban in place for those currently with a CFS/ME diagnosis.UYBS (talk) 22:33, 25 June 2010 (UTC)
Furthermore, when a Health Minister in Parliament makes a statement, they are speaking on behalf of the NHS, NICE, MRC, the UK Blood Service. They are all of these things. It is also a criminal offence for them to lie in Parliament.UYBS (talk) 22:36, 25 June 2010 (UTC)
- It doesn't matter what the source says - on wikipedia, CFS and ME are the same thing, but CFS is used throughout simply for consistency and easy of use. Furthermore, your revert, on that bare point alone, undid considerable amounts of other work - citation templates, wording adjustments, etc. Finally, in that very reference it states, verbatim, "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered." It then goes on to talk about ME/CFS. Again, the source's term doesn't matter - wikipedia notes that ME is a frequently used alternative, but uses CFS - but more importantly here the source itself states that the two are interchangeable. They're the same thing. So there is absolutely no excuse to revert. There's not even a controversial point being made that CFS/ME is somehow different from either CFS or ME, therefore there's no quotation, no need to quote, and no need to keep the exact terminology.
- I've adjusted the wording to indicate that the actions taken are varied, but they're similar in essence. Anyone wants to go through each press release and news article and tease out exactly what measure is taken by what service, feel free - but I don't think it's sufficiently different across countries to make the effort. Just don't change the ME/CFS nomenclature back - there's no good reason and it comes across as POV-pushing. We've been over this many times - on wikipedia, ME = CFS = CFIDS = whatever other term is used. We have an article on it, but we use a single term for maximum clarity. WLU (t) (c) Wikipedia's rules:simple/complex 01:13, 26 June 2010 (UTC)
- Your revert undid considerable work many others. As this is a blood ban in the UK, saying that CFS patients are banned means that no one is banned, as no one is diagnosed with 'CFS'. The Parliamentary transcript does not say which is the official term, the Parliamentary inquire does, and this one term is used to define one disease, not two as has been claimed by Sciencewatcher, who clearly wants two terms to be adopted, which is POV. Wikipedia is not a reliable source for stating what the correct terms are. Also, ease of use is not the issue, unless of course you are confused? Why do you insist on using false statements? Also banning blood donations is not the same as recommending, just as current diagnosis is not the same as ever having a diagnosis. Unless you are happy for wikipedia to be wrong? As CFS/ME is an alternative name it should go on the alternative names page and here, when used in relation to the UK. Or are you bias towards the UK official stance on this disease? and therefore pushing your POV.UYBS (talk) 01:26, 26 June 2010 (UTC)
- No where in this statement does it say which is the official term, because the Health Minister is not saying which is the official term. "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered." This statement however is unquestionable ""(http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf hence we have used the term CFS/ME. We have used this term as it is the recognised term in the UK.)""UYBS (talk) 01:31, 26 June 2010 (UTC)
- You're barking in the dark. CFS and ME are considered the same thing. The absurdity of your point is underscored by the fact that the document sourcing the blood donation in the UK item says "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered." I'm happy that wikipedia is based on reliable sources that are summarized in a neutral way, as agreed on by consensus. You don't have consensus and your summary pushes an unacceptable POV. You've made your points, they were unconvincing, and there is no reason to continue asserting them. You know about edit warring due to the warning on your talk page - further actions can get you blocked or banned. WLU (t) (c) Wikipedia's rules:simple/complex 23:02, 26 June 2010 (UTC)
XMRV Testing Methodology
In regards to this edit and a similar one at XMRV, WPI's response to the CDC testing has stated that the tests were not true replications due to patient selection and testing methodology differences. I think that this should be included in the article, even if only as a primary-sourced statement about their refutation of the disproof (which is acceptable under the "primary source itself directly makes such a claim" section of MEDRS), though it needs to be stated as such quite clearly (i.e., "WPI, in turn, has stated that..."). Obviously there's something strange going on here, as even the US government is trying to figure out why the CDC gets one result and the FDA and NIH get another (as seen here and elsewhere). —RobinHood70 (talk • contribs) 17:16, 4 July 2010 (UTC)
- But WPI haven't even said what patients they used or what criteria they were measured against (unlike all the follow-up studies, which have), so how can we even say they used different patient selection? And what exactly is different about the methodology? I have looked, and can't find any significant differences. Suzanne Vernon mentions Sodium Heparin, but I can't find any mention of that in the Science study. If we include the WPI's comment we should also have comments by CDC or others. For example, BMJ editorials and blogs saying that the original Science study was shoddy and should never have been published. Just adding rebuttal by WPI would seem to be a WP:Weight violation. It would probably be better just to wait for a review. --sciencewatcher (talk) 17:43, 4 July 2010 (UTC)
- (edit conflict) The controversy seems notable, but I do not think there's enough evidence in reliable sources to focus on any particular claim regarding the discrepant results. Either side of a controversy can claim concerns about the other's methodology. There are clearly huge pressures to resolve this (with papers in limbo at major journals) so we shouldn't have to wait long for something more reliable to cite. -- Scray (talk) 17:50, 4 July 2010 (UTC)
- We do already cover the controversy in the WPI article here. --sciencewatcher (talk) 18:53, 4 July 2010 (UTC)
- Agree with Scray. Seems sensible to wait. Sam Weller (talk) 19:16, 4 July 2010 (UTC)
Sciencewatcher, I don't understand how you could not know by now what patients or criteria were used, since you were involved in previous discussions about this same issue. Unless of course you're being sarcastic? The information about the patient cohort (and the sodium heparin) is included in the supporting online material to the 2009 WPI study. Note that S2 = PMID 1672770, and [15] in the full text is a letter, but it appears to me that these citations refer generally to the locale(s) of the WPI patient cohort rather than being the same individuals, although there may be overlap.
Could/should the WPI have been clearer about the patient cohort? Probably, but what more information is fundamentally required to determine if a retrovirus is associated with CFS? They met both CFS criteria and most papers on CFS don't really get more specific than the WPI study did, the intense scrutiny may be largely a result of the coverage and controversy, and perhaps the Science journal itself focuses more on the biological than the clinical (the reviewers obviously didn't think it was super important). In response to comments, Mikovits & Ruscetti reiterated/clarified the patient cohort here and here: patients fulfilled "both" CDC-1994 and Canadian-2003 criteria, "all known medical conditions causing severe fatigue were excluded", samples were from the WPI repository, and they "regretted" the original wording used regarding immunological findings and reexplained.
As for the CDC study, it seems they used both the CDC-1994 criteria and the (notorious) "Reeves empirical" criteria. They state that the former is "quantified" by the latter in their study. Then on pages 13 and 14 of the PDF document, the CDC authors discuss how the differences between the patient cohorts (WPI vs CDC) may help to explain the discrepant findings, they even state that "The 1994 International CFS case definition and the Canadian Consensus Criteria are different and do not necessarily identify similar groups of ill persons." So fundamental differences in the two cohorts is a real possibility, but I doubt that this can fully explain the "0/0" findings. One side has screwed up but I'm not qualified to analyse the virology. The XMRV controversy has reached new heights and also outlined in Nature and Science. These recent developments have not been added to the articles yet but I am waiting for the dust to settle. - Tekaphor (TALK) 05:09, 5 July 2010 (UTC)
- Thanks - I didn't see that because I was looking at the full-text on the cfids-cab site and didn't realise there was separate supporting material. --sciencewatcher (talk) 14:27, 5 July 2010 (UTC)
Fatigue & Chronic Fatigue as symptoms.
Fatigue and Chronic fatigue are symptoms of other diseases. Chronic Fatigue should be added to the following sentence, at the beginning of the page, "Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison.[4] Here is one example, from the NCI, "Fatigue may be acute or chronic. " "Fatigue related to cancer is called chronic because it lasts over a period of time and is not completely relieved by sleep and rest. "[37])UYBS (talk) 21:02, 19 June 2010 (UTC)
- "Fatigue is a common symptom in many illnesses", the reference states that, but "Chronic Fatigue as common symptoms in many illnesses", is not supported by the references as far as I can see. There are some interesting correlations in Ranjith that compares the numbers of CFS vs. CF vs. F in various populations that belongs in the prevalence section but that's too detailed for the lead IMO. Ward20 (talk) 02:22, 20 June 2010 (UTC)
- Conversely, I just came across this commentary suggesting that the fatigue associated with illnesses such as HIV and cancer might actually be the same as that in CFS. I'm not saying we should be including this as it is just a commentary, but it is interesting reading. --sciencewatcher (talk) 03:39, 20 June 2010 (UTC)
- This is from 'What is Fatigue? Pathological and Nonpathological Fatigue', "Fatigue is a universal symptom reported by individuals in the general population as well as by those suffering from different medical and psychological illnesses, including cancer, multiple sclerosis, chronic fatigue syndrome, depression, and anxiety. Chronic fatigue is a significant problem in many primary care settings, and the debilitating and prolonged nature of fatigue can pose significant economic consequences for society." [38] Also the study 'Sensitivity and Specificity of the CDC Empirical Chronic Fatigue Syndrome Case Definition'[39] "Respondents were also asked if they have ever been diagnosed with any other medical or psychiatric conditions associated with chronic fatigue and what current treatments they were receiving." Another source is 'An evaluation of exclusionary medical/psychiatric conditions in the definition of chronic fatigue syndrome', "patients with hypothyroidism or systemic lupus erythematosus that is 'under control' or inactive, based on physical examinations and laboratory evaluations, may still fulfill the criteria for CFS."[40]Thus they have CF. Furthermore, to have a diagnosis of CFS, you have to have more than the symptom CF, because CF is found in other diseases. The HIV commentary that Sciencewatcher found also demonstrates that CF is found in other diseases, whether it is the same is not clear, and no evidence is provided. However, CFS is still officially a separate diagnosis, and CF is not a diagnosis, it is a symptom. As the previous source said, "Fatigue related to cancer is called chronic..."UYBS (talk) 13:45, 20 June 2010 (UTC)
- CF is a symptom of various diseases, yes, but the wording you used previously puts puts simple fatigue and CF on the same level "common symptoms in many illnesses" and there still is no source for that statement. Ranjith states that CF is only about half the prevalence of F in patient populations. Ward20 (talk) 14:06, 20 June 2010 (UTC)
- Does an accurate piece of information always need a source that say's Chronic Fatigue also occurs in other diseases? The NCI say cancer fatigue can be chronic, ie. Chronic Fatigue. (Not solely Fatigue, or Chronic) Otherwise the line near the begging of the page, "Although classified by the World Health Organization under Diseases of the nervous system, the etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker." would need to have 'Although' removed, as there is no source that says this. Here is a slide, from L. Jason, that clearly shows CF to be a different to CFS [41] It is 6 pages down, or the 12th page. Previous slides to this show CF to be a subset of F, with CFS/ME a even smaller subsetUYBS (talk) 14:48, 20 June 2010 (UTC)
- I think we are arguing past each other I don't dispute your last sentence. I am only objecting to putting simple fatigue and CF on the same level saying they are both "common symptoms in many illnesses" as that doesn't clearly state that CF is a much smaller population than simple fatigue.Ward20 (talk) 14:58, 20 June 2010 (UTC)
But Chronic Fatigue is also sometimes used to mean CFS, so the distinction between CF and CFS is slightly blurred. --sciencewatcher (talk) 15:21, 20 June 2010 (UTC)
- (EC)Please, use reliable sources that connect CFS and CF to guide your editing. The phrase, "and for some illnesses this can be Chronic Fatigue" seems vague and disconnected to any relevant information that is being conveyed to the reader. Without a source it is WP:synthesis or WP:original research. Another problem is that "The lead section should briefly summarize the most important points covered in an article". There is no discussion of the relation of CFS and CF in the article right now. That needs to be developed first and be very notable in the article before it can be used in the lead. Ward20 (talk) 22:26, 21 June 2010 (UTC)
- Here is the reliable source, the Oxford definition for CFS [42] pg119, under Chronic fatigue syndrome (CFS), F, (i) It begins, "Patients with established...." There is also no discussion of the relation of CFS and F. This will also need to be added, as well as the relation of CFS and CF. UYBS (talk) 22:49, 21 June 2010 (UTC)
chronic fatigue is NOT chronic fatigue SYNDROME...lol engage brain people...you can get chronic fatigue from having cancer or diabeties for example, most major illness has chronic fatigue...chronic fatigue SYNDROME is different.... —Preceding unsigned comment added by 86.159.2.153 (talk) 00:12, 24 July 2010 (UTC)
POV pushing by UYBS
Both here and on the alternative names article. --sciencewatcher (talk) 22:19, 21 June 2010 (UTC)
- See above, Blood donation ban in UK, to judge for yourself on who is pushing a POV.UYBS (talk) 23:00, 21 June 2010 (UTC)
- I would agree with ScienceWatcher's comment. UYBS, because your edits are consistently opposed by numerous editors yet you continue to make them suggests that the problem might be your editing habits. Given you have a very low edit count (less than 200) and you're editing with much more experienced editors who have worked on many, many pages beyond this one topic, please listen to them. WLU (t) (c) Wikipedia's rules:simple/complex 22:10, 26 June 2010 (UTC)
- a previous IP editors comments were attempted to be removed by sciencewatcher, so I wish to make it clear here as a sencond person that I find it hugely ironic to hear sciencewatcher accuse people of POV when they are well known for pushing POV for YEARS, anything that goes against sciencewatchers view point, they try to block and fight long and hard, so if sciencewatcher is allowed to accuse people of POV, I wish to exercise my right to put on record my view that sciencewatcher pushes a very biased agenda —Preceding unsigned comment added by 81.153.142.144 (talk) 19:26, 24 July 2010 (UTC) —Preceding unsigned comment added by 81.153.141.193 (talk)
- I agreee with IP 144, this is a democracy not a dictatorship, the WIKI policies are being abused so please everyone remember the ethos of wikipedia, and remember also that deleting stuff from the talk pages is strongly against wiki policy —Preceding unsigned comment added by 81.153.141.193 (talk) 12:34, 25 July 2010 (UTC)
- The two IPs above are either the same person on a dynamic IP, or two people typing on adjacent computers. In either case, it's only one comment. Furthermore, Wikipedia is not a democracy. That being said, removal of IP comments, unless unrelated to improving the article, almost certainly that of a banned editor, or interpolated in a way which makes others' comments unreadable or changes the meaning of comments, is not in keeping with Wikipedia policies and guidelines. See WP:TALK for other examples. I wouldn't say "strongly" against wiki policy. — Arthur Rubin (talk) 14:53, 25 July 2010 (UTC)
- Actually, the comment (from a previously banned user) was deleted in accordance with WP:Talk because it was a personal attack that had nothing to do with the article. Sorry I didn't put in an edit comment - I assumed it was obvious. --sciencewatcher (talk) 15:36, 25 July 2010 (UTC)
- I'm sorry that I didn't check — I was just making a generally comment on talk pages. — Arthur Rubin (talk) 15:48, 25 July 2010 (UTC)
- Ok, no problem. --sciencewatcher (talk) 15:50, 25 July 2010 (UTC)
what is going on on these pages, arthurrubin and sciencewatcher seem to be rather paranoid, so you are seriously saying that ALL IP editors are the same person? what are you on about? I think its called SLANDER, so behave yourselves and stop trying to dominate these pages, sciencewatcher you seem to be somewhat of a ring leader on these pages, and I have noticed a strong bias in your edits so please calm it —Preceding unsigned comment added by 81.153.143.101 (talk) 15:58, 29 July 2010 (UTC)
diagnosis
the diagnosis secion is wildly innaccurate as it currently states there are no measurabale anomalies and uses a apaper from 2003 as backup...wildly out of date, I would have added more up to date papers but I know the usual little group of one or 2 suspects will come along and remove them unless they are forced to let them stay...so get on google people.... —Preceding unsigned comment added by 86.159.2.153 (talk) 00:07, 24 July 2010 (UTC)
- Well-sourced and neutral edits should be retained - what do you propose? If you think they're contentious, this is the right place to discuss. Please assume good faith. -- Scray (talk) 16:49, 24 July 2010 (UTC)
- one could start with such things as the following http://www.ncbi.nlm.nih.gov/pubmed/20032425
- http://www.translational-medicine.com/content/8/1/1
- the trouble with the CFS pages on wikipedia is people are put off by editing them becuase there are a certain number of very well known editors on these pages that push POV and will fight long and hard to prevent anything being added to these pages that doesnt fit within their limited view of the illness, they will twist wiki policy and claim papers fail MEDRS, and then when that doesnt work they will find another wiki rule to twist and say that means the papers cant be added, THAT is what the problem is with these pages, I know exactly which 2 editors will be along shortly to protest long and hard why these papers cant be added, but those are just 2 of the many papers on biomarkers —Preceding unsigned comment added by 81.153.142.144 (talk) 17:21, 24 July 2010 (UTC)
- I agree those look like interesting references. I am no expert on CFS nor have I read those closely, so I can't immediately say how these might best be incorporated into the WP article we're here to discuss - do you have a specific proposal? You could do so here, or just make some well-sourced edits and see where that takes us. And, please, let's talk about the edits and not the editors. -- Scray (talk) 19:53, 24 July 2010 (UTC)
Scray perhaps you could help out a bit on these pages, there are a little handful of editors who like to dominate these pages and it would be good to have new unbiased people here, perhaps you could help add some stuff? because the current CFS page basically ignores the vast majority of biological papers and instead focuses on the psychological ones, the biased editors that have been called out by a number of people always claim that the biological papers fail MEDRS, even when the papers clearly dont fail the test, so the problem is many people are put off adding stuff becuase the same little gang of editors basically try to prevent their edits and its very frustrating becuase many people make good faith edits but becuase they are biological they get stifled by the biased editors, so its sort of like walking into a brick wall over and over again, it gets very tiresome, we need outside editors to come in and help make a balance page becuase currrently the page does not accurately portray the illness nor is it balanced —Preceding unsigned comment added by 81.153.143.101 (talk) 16:02, 29 July 2010 (UTC)
CDC major CFS website reorganization
Due to the reorganization references 7,10,41,83, and 107 are out of date. It is not as simple as refreshing the links as much material has been changed and separated into different pages. Ward20 (talk) 22:06, 24 July 2010 (UTC)
- yes would be good opportunity to separate the 2 classifications too, by naming the page myalgic encephalomyelitis and getting CFS to redirect as CFS was a later classification and has a totally different WHO code anyway, (just click the codes on the page to see for yourself), its currently highly illogical and needless to say extremely biased, we could also make the page far more clear and balanced as currently it focuses very heavily on psychology —Preceding unsigned comment added by 81.153.143.101 (talk) 16:06, 29 July 2010 (UTC)
CBT
I have edited this page to add references to CBT being damaging and unhelpful, however these were removed - why? I referenced them properly. There is overwhelming evidence that CBT/GET worsens symptoms in most patients, and it is now well established that the NICE guidelines are out of date.Please reinstate my edits. —Preceding unsigned comment added by 92.12.130.105 (talk) 19:18, 4 August 2010 (UTC)
- The problem is your references do not satisfy WP:MEDRS. Briefly put, any medical information in the article should come from high-quality reviews published in peer-reviewed journals. We certainly can also put in patient surveys and the like, but they cannot contradict or overwhelm the high quality reviews. The problem is that there is no evidence of harm from CBT in the literature - why is that? If you look in the controversies and treatment sub-articles you'll see more of this kind of thing than in the main article itself. You are welcome to contribute to the article, but you should thoroughly read WP:MEDRS and WP:Weight first. Also I'd recommend getting a username so that people can reply to you on your talk page and people know who you are. --sciencewatcher (talk) 19:52, 4 August 2010 (UTC)
- "There is overwhelming evidence that CBT/GET worsens symptoms in most patients." (92.12.130.105) vs "The problem is that there is no evidence of harm from CBT in the literature - why is that?" (sciencewatcher)
- Publication bias and poor reporting of adverse effects have been noted by systematic reviews (Chambers et al 2006, Cochrane 2008 CBT, Cochrane 2004 GET). On CBT, Cochrane 2008 also discusses the potential of response bias and selection bias, and even states "data referring to adverse effects of psychological treatment was not systematically presented by any study". On GET, Cochrane 2004 states that no data was reported for adverse effects, and also mentions high drop out rates (but deems them non-significant). The generalizability of trial results is questionable or difficult to determine, another fact mentioned by the above reviews (Chambers et al 2006 actually calls it a "fundamental problem").
- AFAIK, no CBT/GET trial has ever required prolonged post-exertional symptom exacerbation from their participants or analysed its impact on therapy. As the patient sample gets more severe and fits a stricter definition, the concern for harm is much greater and so is the gaping blind spot in the literature. Those most at risk of adverse effects from CBT and GET have not really been studied in the mainstream literature, a fact also mentioned by the above reviews. Therefore, blanket dismissal of these patients' concerns by pointing to the (obviously flawed) "evidence base" (which doesn't even exist for a large proportion of patients) would be inappropriate and disingenuous.
- At most we have the more recent FINE trial results including 11% "severely affected Oxford/CDC critera patients", but "pragmatic rehabilitation" is not exactly the same as CBT/GET is it, and the specific results for this group were not published. So the "best evidence" we have on this most vulnerable group is actually patient surveys, about a dozen of them which universally do find "evidence of harm" (even for the less severely affected). There's a recent non-PubMed study (DOI 10.1159/000315130) which reported no evidence for harm as a result of CBT, but again may suffer from some of the issues mentioned above.
- Conflict of interest is frequently raised against those selling biological tests and treatments, but the reverse is also possible: if pharmaceutical companies tend to publish more optimistic and selective trails on their own products than independent studies (antidepressants being a classic non-CFS example), you may also want to ask yourself if the same occurs for psychological therapies conducted by those with much to lose if negative trials were published.
- There is also the possibility that real world clinical application of CBT and GET for the average patient is different than the clean cut results presented to us in proponents' research trials. Like the evaluation study of CBT/GET in Belgium which found "occupational participation" had decreased after therapy (admittedly, this apparently used group CBT which is known to be less effective, but does not explain the failure of the accompanying GET, and why has this study been removed from the Treatment subarticle?). In the Nijs & Paul & Wallman 2008 paper (PMID 18382818) the authors describe how care must be taken in GET to: avoid the exacerbation of symptoms (with evidence that "too-vigorous exercise/activity promotes immune dysfunction"), cater for individual capabilities and the fluctuating nature of symptoms. So harm is a real possibility in GET, with CBT usually employing some form of graded activity as well, and a CBT session itself can logically cause relapses in the severely affected by definition.
- Some patient surveys are already cited in the Treatment subarticle as primary sources, and many such surveys are cited by a secondary source the Twisk & Maes 2009 review (PMID 19855350), which therefore makes it "in the literature" even if not accepted as "MEDRS" by certain Wikipedia editors. Yes according to MEDRS we cannot give these patient surveys much weight, but they still deserve a mention in the article and they are basically all we have on at least 25% of the patient group. I think it is ethically important and WP:RULES does allow the inclusion of (weighted) uncertainty, controversy and significant minority opinions regarding CBT/GET.
- Therefore accordingly I have restored and added the following caveats on the main page, since the vast majority of visitors do not visit the subpages:
- To avoid detrimental effects on the immune system during GET, care must be taken to avoid the exacerbation of symptoms while catering the program to individual capabilities and the fluctuating nature of symptoms.[46] GET may be contraindicated in some patients due to amplification of pre-existing pathophysiological abnormalities.[45]
Proposed addition to "Diagnosis"
Comment and question for other reviewers: I suggest that there needs to be an additional clarifying sentence or two to accurately represent currently reality. As it now reads, the paragraph reflects the official position of most public health authorities and is correct in this sense. However, I suggest that a well-rounded perspective on "diagnosis" should also mention (just a sentence or two) the divergent view of clinical specialists. ie. despite the disagreement over their helpfulness, most clinical specialists will conduct extensive diagnostic tests in a clinical setting. This is the current reality. Unresolved as it is.
Typical clinical tests fall into two categories. One is results reported by one or more studies as biomarkers with a degree of specificity to CFS. eg. low molecular weight forms of RNase-L (Ref [1], [2]). Secondly, tests for conditions commonly observed in association with CFS by clinicians, the treating of which is believed to assist with symptomatic relief. eg. co-infections, postural tachycardia, CNS sensitization etc.
I'm not sure where to dig up a secondary of tertiary reference for the latter. Most clinics and CFS experts provide ample attribution to this but are primary references. Any suggestions?
[1] J Interferon Cytokine Res. 2002 Apr;22(4):443-56. Structural and functional features of the 37-kDa 2-5A-dependent RNase L in chronic fatigue syndrome. Shetzline SE, Martinand-Mari C, Reichenbach NL, Buletic Z, Lebleu B, Pfleiderer W, Charubala R, De Meirleir K, De Becker P, Peterson DL, Herst CV, Englebienne P, Suhadolnik RJ.
[2] Clin Infect Dis. 2002 May 15;34(10):1420-1; author reply 1421-2. Antiviral pathway activation in chronic fatigue syndrome and acute infection. De Meirleir K, Suhadolnik RJ, Lebleu B, Englebienne P. —Preceding unsigned comment added by Tyalgum (talk • contribs) 06:48, 15 August 2010 (UTC)
Proposed addition to "Risk Factors"
A prospective study that tracked individuals after infection with common pathogens sought to identify factors that predicted development of CFS rather than normal recovery. The authors concluded that "the syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors" [35]
- Existing citation number 35 applies - ^ Hickie I, Davenport T, Wakefield D, et al (2006). "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study". BMJ 333 (7568): 575. doi:10.1136/bmj.38933.585764.AE. PMID 16950834.
Tyalgum (talk) 04:53, 15 August 2010 (UTC)
- Well, given that we've had comments to my other suggestions but not this one; and, that this is an almost innocuous and incremental change to what is already there I propose to proceed with the edit. (After a week in case someone has a comment)
- 122.107.128.75 (talk) 10:58, 18 August 2010 (UTC)
- Go ahead, be bold. I must warn you that there have been arguments in the past over this and it may be reverted for being a "primary source" because we already have a secondary source covering the issue ie PMID 17892624. If it doesn't get reverted, someone will probably still want to add a psychological study to "balance" it. - Tekaphor (TALK) 03:41, 20 August 2010 (UTC)
Pragmatic rehabilitation and the FINE trial
On this talkpage during May 2010, Drgao introduced the FINE trial and IP:217.39.36.16 said it needs adding for balance. I have attempted to do this in the Treatment subarticle. - Tekaphor (TALK) 05:31, 20 August 2010 (UTC)
Note: MEDRS is not the be all and end all for this article
I'm not accusing anyone here over the current issue, I just think WP:MEDRS has been misused over the years to strangle certain marginalised viewpoints on a highly controversial and uncertain subject, so I want to present the argument that MEDRS is not the "be all and end all". Not ranking well on MEDRS does not necessarily preclude a source from being used in a medical article at Wikipedia, as the guideline itself states "In the event of inconsistencies between this page and the policies, the policies take priority, and this page should be updated to reflect them." with these policies of course referring to Wikipedia's 3 core policies, the essences of which I have posted below:
- Verifiability (WP:V) - "The threshold for inclusion in Wikipedia is verifiability, not truth—whether readers can check that material in Wikipedia has already been published by a reliable source, not whether editors think it is true."
- Neutral point of view (WP:NPOV) - "Neutrality requires that each article or other page in the mainspace fairly represents all significant viewpoints that have been published by reliable sources, in proportion to the prominence of each viewpoint, giving them 'due weight'."
- No original research (WP:NOR) - "This means that all material added to articles must be attributable to a reliable published source, even if not actually attributed."
These 3 policies take preference over MEDRS. Yes, MEDRS recommends high quality secondary sources where possible, but with NPOV policy we must fairly represent all significant viewpoints. For example, the Twisk & Maes 2009 paper does not have to be true, it just has to be published by a reliable source (eg Neuroendocrinology Letters), represent a significant viewpoint (eg that GET can cause harm to some ME/CFS patients eg via amplification of pre-existing pathophysiology), and given appropriate weight (eg a single sentence out of the entire article). The viewpoint contained within the Twisk & Maes 2009 paper is widespread among the ME/CFS communities but missing from the article and should be to be presented briefly.
When it comes to the more severely affected and/or who fit stricter criteria, there is no scientific research to "contradict" to begin with, there are only patient surveys and the opinions of self-appointed experts, but again we are talking about presenting all significant viewpoints, not juxtapositioning the external criticism of CBT/GET with the limited "evidence base" for CBT/GET. The only weakness I see in this argument when used to support the previous text is that we may need to qualify the statement or attribute the viewpoint, so do we need another source to demonstrate this view actually is common among the patient communities?
Finally, for anyone who wishes to handwave accusations of "Wikilawyering" for the above post, it is a highly subjective term and WP:WL is merely an essay. :-)
_Tekaphor (TALK) 02:08, 18 August 2010 (UTC)
- I agree with you that we need to present the patient viewpoint, and MEDRS doesn't need to be considered for that. My concern is simply that we shouldn't be presenting as 'medical fact' something from a review that fails WP:MEDRS. --sciencewatcher (talk) 14:29, 18 August 2010 (UTC)
twisk and maes do not infact fail MEDRS, its just sciencewatcher seems to want to prevent them from being on this page for some reason unknown (dont take my word for it, go and look in the archives) , I have read the archive of these pages and its ALWAYS sciencewatcher claiming that Twisk and Maes fail MEDRS and hardly anyone else, so they are clearly in the minority so why does sciencewatcher seem to trump everyone else? sulrey all editors get equal say in these matters right? I agree that MEDRS is NOT the be all and end all of what is allowed and what isnt, and also scicencewatcher please listen to the other editors, most people agree that Twisk and Maes should be added. I personally agree that Twisk and Maes should be added to this article —Preceding unsigned comment added by 86.169.36.212 (talk) 23:34, 21 August 2010 (UTC)
Study Finds Retroviruses in Chronic Fatigue Sufferers
here. The article itself doesn't appear to be available yet, but I imagine it will be published soon. Note that they didn't actually find XMRV. sciencewatcher (talk) 19:26, 23 August 2010 (UTC)
LOL sciencewatcher....didnt find XMRV...BUT did find variants of MLV's, trust you to put a negative spin on the findings, remember XMRV stand for Xenotropic MURINE-leukaemia related Retro Virus...essentially MLV's are in the same family as XMRV, so its practically exactly what the lombardi paper was saying all along. —Preceding unsigned comment added by 217.39.39.193 (talk) 21:37, 23 August 2010 (UTC)
- No, I wasn't putting a negative spin on it. I mention it because I just know someone will change the article saying '2 studies found xmrv, 4 didn't' kind of thing. It's important to get the info correct. --sciencewatcher (talk) 22:11, 23 August 2010 (UTC)
- Well it was sciencewatcher who brought the paper to the article's talk page. If he was trying to suppress a viral cause to CFS he would not have brought it to the community's attention. Think about it and also think about assuming good faith. I think the issue is just that sciencewatcher and other editors here are just taking the cautious approach in not jumping to conclusions by adding primary sources and wants to wait for further follow-up research and reviews (secondary sources). This is in keeping with WP:NPOV, WP:WEIGHT and in particular, WP:MEDRS.--Literaturegeek | T@1k? 23:22, 23 August 2010 (UTC)
- Sure, be cautious and follow WP:RULES, but this new study (full text here [16], commentary here [17], supporting information here [18]) definitely needs to go in the article and no amount of wiki-rhetoric will convince me otherwise. It is from heavyweight researchers at the NIH and FDA and Harvard, which are Alter and Lo and Komaroff respectively. PNAS has a much higher impact factor than any of the journals where the "negative" XMRV studies were published. These results will contribute to the debate, and word of the paper is hitting multiple news sources, adding to the notability. I have only skimmed it so far, but found these interesting statements to consider for the article:
- "found MLV-like virus gag gene sequences in 32 of 37 (86.5%) compared with only 3 of 44 (6.8%) healthy volunteer blood donors" - OK, relatively small sample, but high CFS prevalence, and in blood donors too.
- "four recent studies from Europe and the United States have failed to detect XMRV or an MLV-related viral gene sequence in the blood of CFS patients using PCR" - So this new study still contradicts these 4 negative studies even though "XMRV" as such was not detected?
- "In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al., nor our own study, has attempted to fully replicate that study." - We can now add to the article that (according to Lo et al) there has not been a true replication study of the original Science paper published so far, an important caveat.
- "Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. (3) that MLV-related viruses are associated with CFS and are present in some blood donors." - The WPI/NCI/CC has been vindicated, at least in the sense they were onto something. Also remember that more XMRV studies are in the works too. This is a new field of virus research in CFS that isn't about to go away any time soon. [19]
- _Tekaphor (TALK) 05:09, 24 August 2010 (UTC)
- Sure, be cautious and follow WP:RULES, but this new study (full text here [16], commentary here [17], supporting information here [18]) definitely needs to go in the article and no amount of wiki-rhetoric will convince me otherwise. It is from heavyweight researchers at the NIH and FDA and Harvard, which are Alter and Lo and Komaroff respectively. PNAS has a much higher impact factor than any of the journals where the "negative" XMRV studies were published. These results will contribute to the debate, and word of the paper is hitting multiple news sources, adding to the notability. I have only skimmed it so far, but found these interesting statements to consider for the article:
No true replications yet of Lombardi et al 2009
Regarding this edit [20], where IP:132.185.240.120 uses the recent FDA/NIH paper to add the statement, "None of the follow up studies have attempted to fully replicate the Lombardi et al. study." This was reverted by StevieNic with the edit summary "it doesn't actually say that in this source".[21] The same edit was added to the XMRV article by IP:132.185.240.120 [22] but was then reverted by Arthur Rubin without any explanation in the edit summary.[23]
Yet the paper itself states: "However, in the study of Lombardi et al. (3) and studies reviewed subsequently by Silverman et al. (22) the evidence for XMRV infection in humans not only involved detection of viral nucleic acids using PCR, but also reported the detection of viral antigens, detection of anti-viral antibodies, the ability to culture the virus in a prostate cancer cell line, the detection of gamma retrovirus particles by electron microscopy, and transmission of infection to macaques. In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al. (3), nor our own study, has attempted to fully replicate that study."[24] So what's the problem exactly? Alter also describes elsewhere (I don't remember the source right now) the Lombardi study as more advanced than his own. People have been saying for several months that none of the negative followup studies were true replications, but it was rejected because there was allegedly no "reliable source" for this statement, and now a landmark paper from highly respected virologists that was published in PNAS supports this statement, yet it still can't go in the article?
_Tekaphor (TALK) 01:53, 27 August 2010 (UTC)
- OK, I missed Arthur Rubin's explanation earlier on the XMRV talkpage.[25] I still don't see why it can't go into the article, it's important to note that the 4 negative "followup studies" which are used in the article to simply refute the original positive WPI study did not use all the same methods and avenues to detect XMRV. At most the wording may need changing, but to completely omit this pivotal point from the article is inappropriate and encourages the illusion that all these 4 negative studies have equal weight against Lombardi et al 2009. - Tekaphor (TALK) 04:15, 27 August 2010 (UTC)
- I agree with tekaphor —Preceding unsigned comment added by 86.143.164.181 (talk) 20:00, 3 September 2010 (UTC)
Proposed addition to "Complementary and Alternative Treatments"
Two methods that are not listed but which are in use are Immunoprovocative Therapy and D-Ribose. Immunoprovocative Therapy as the Marshall Protocol has shown clinical efficacy in a phase 2 clinical trial:
From http://www.marshallprotocol.com/phase1.pdf The Phase II clinical trial conducted from 2002-2008 by the Autoimmunity Research Foundation has demonstrated applicability of this antibacterial therapy to a wide range of chronic Th1 immune illnesses [2]. Direct link to reference 2: http://AutoimmunityResearch.org/transcripts/ICA2008_Transcript_TomPerez.pdf
D-Ribose has been shown to be a palliative treatment to reduce the symptom severity of chronic fatigue syndrome and is being prescribed by some MDs. http://www.ncbi.nlm.nih.gov/pubmed/17109576 J Altern Complement Med. 2006 Nov;12(9):857-62. The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study. Teitelbaum JE, Johnson C, St Cyr J.
Both of these treatments need to be added to the section.
- First Marshall Protocol: the articles you quote above are not reliable sources, as they are self-published. Also, they are in no way even close to being 'clinical trials' - there are no controls for a start.
- Second, D-ribose: again, this is an uncontrolled study. The results are in the range you would expect from the placebo effect in CFS. In order to determine if the treatment has any effect you would need to have a proper placebo-controlled trial. --sciencewatcher (talk) 14:07, 10 September 2010 (UTC)
- Agreed on your Ribose comment. Regarding Marshall Protocol is it a requirement that all research be up to that standard? Clinical trials take upwards of 8 years to prove. I think a phase 2 clinical trial is noteworthy enough to include if it has a citation. If this is true then patients will have no information on the development of new treatments in progress and CFS has no effective treatments so anyone interested an in experimental approach would be out of luck. 24.211.144.163 (talk) 14:33, 10 September 2010 (UTC)
- First of all, where does it mention the clinical trial? I don't see anything in the document about a clinical trial (although it's kind of hard to be sure because it seems to be a powerpoint or something and there is no search). Also, wikipedia isn't primarily a patient information store (although it hopefully is useful to patients - that is my primary motivation for editing). It is an encyclopedia, and everything needs to be properly referenced. All medical information needs to follow WP:MEDRS. The Marshall protocol is a very dubious treatment with pretty appalling science behind it - it reeks of quackery to me. So even if we did allow some non-WP:MEDRS medical info (and sometimes we do, depending on circumstances), I still wouldn't want to include the Marshall protocol! --sciencewatcher (talk) 15:34, 10 September 2010 (UTC)
- I checked that reference and it wasn't correct. However I did find this article published on Pubmed regarding the treatment. Despite some questions I have about the treatment, I think the idea that bacterial infection may be involved in CFS and autoimmune disorders deserves mention. (Waterhouse JC. Reversing bacteria-induced vitamin D receptor dysfunction is key to autoimmune disease. Ann N Y Acad Sci. 2009 Sep;1173:757-65. PMID: 19758226.Abotnick (talk) 14:49, 12 September 2010 (UTC)
- That ref doesn't mention CFS at all (even in the full-text). --sciencewatcher (talk) 22:38, 10 September 2010 (UTC)
- This one does. "Our results reveal that in CFS, like other autoimmune diseases, different genetic features are related to age at CFS onset and symptoms." (Ortega-Hernandez OD. Autoantibodies, polymorphisms in the serotonin pathway, and human leukocyte antigen class II alleles in chronic fatigue syndrome: are they associated with age at onset and specific symptoms? Ann N Y Acad Sci. 2009 Sep;1173:589-99. Abotnick (talk) 06:14, 11 September 2010 (UTC)
- You've lost me now. That seems to be talking about something completely different. And it concludes with "CFS, like other autoimmune diseases", which raises a red flag because CFS certainly hasn't been shown to be autoimmune. --sciencewatcher (talk) 14:52, 11 September 2010 (UTC)
- This is a better reference. It's recent. "Certain neuroendocrine-immune abnormalities have also been described, and autoantibodies commonly described in some autoimmune diseases have been found in CFS patients as well. An increasing number of autoantibodies, mainly directed against other nuclear cell components, have been illustrated. Likewise, an association between some infectious agents, antibody production, and later CFS onset has been reported." (Ortega-Hernandez OD. Infection, vaccination, and autoantibodies in chronic fatigue syndrome, cause or coincidence? Ann N Y Acad Sci. 2009 Sep;1173:600-9.)Abotnick (talk) 14:50, 12 September 2010 (UTC)
- You've lost me now. That seems to be talking about something completely different. And it concludes with "CFS, like other autoimmune diseases", which raises a red flag because CFS certainly hasn't been shown to be autoimmune. --sciencewatcher (talk) 14:52, 11 September 2010 (UTC)
It says "However, it is still unclear if CFS represents a kind of autoimmune process rather than a mixture of several common fea- tures overlapping.24 There is conflicting infor- mation about the role of autoantibodies, infec- tions, and vaccine in the pathogenesis of CFS." --sciencewatcher (talk) 21:04, 12 September 2010 (UTC)
- I see. So the rationale for listing the medical treatments on the page is to reflect mainstream medicine's ineffective theories and treatments which happen to be popular only out of desperation and to give the impression to patients that their MDs have some kind of treatment to use but the theories of alternative groups with the same level of evidence (and more promising chances) are excluded. This conflicts with the NPOV. Given the evidence suggesting it could work it should be included. I protest this poor editorial judgement and request that this be escalated to a higher level editor for a determination. Abotnick (talk) 10:10, 13 September 2010 (UTC)
- I never said anything about not including anything :)
- Where does it mention a treatment anywhere? It's probably easier for you to just add whatever you want to add and we can just change/remove it afterwards if it fails wikipedia policies. I'm currently just baffled as to what you are actually suggesting.
- As for just presenting 'ineffective theories and treatments', well that certainly would fail wikipedia policies. We mainly present the mainstream scientific opinion, which by definition consists of things that have been proven or have the most evidence of effectiveness (hence the reason by the CBT section is longer than any other section). If you think the balance should be changed, feel free to discuss it here. --sciencewatcher (talk) 14:16, 13 September 2010 (UTC)
- I already made an addition and it was quickly deleted. I don't want that to happen again and waste my time. Mainly presenting mainstream whatever isn't NPOV. I will write some additional text if there is discussion before modification and if you are willing to be NPOV with comparable alternative treatments (vs. Pacing etc.) Abotnick (talk) 16:12, 13 September 2010 (UTC)
Not sure what you mean - we already have pacing in the article (it was me who added it). Also I looked through all your edits and I didn't see a single one in this article. Please point out exactly what edit was 'quickly deleted'. Thanks. --sciencewatcher (talk) 17:12, 13 September 2010 (UTC)
Proposed addition to Graded Exercise Therapy
Suggesting that the following text and citations be appended to the "Graded exercise therapy" section:-
"Several published studies concur [xx][yy][zz]
[xx] VanNess, J et al (2006) Using Serial Cardiopulmonary Exercise Tests to Support a Diagnosis of Chronic Fatigue Syndrome, Medicine & Science in Sports & Exercise, vol. 38, no. 5.
[yy] Loma, P et al (1999) Demonstration of Delayed Recovery from Fatiguing Exercise in Chronic Fatigue Syndrome, European Journal of Neurology, vol. 6, pp. 63-69.
[zz] Nijs, J et al (2005) Chronic Fatigue Syndrome: Exercise Performance Related to Immune Dysfunction, Medicine and Science in Sports and Exercise.
Tyalgum (talk) 07:05, 15 August 2010 (UTC)
- These sources highlight that normal exercise will physiologically exacerbate the symptoms of CFS and is a good reason to be cautious about GET. However, other Wikipedia editors may argue with you over the inclusion of these sources as a reason to avoid GET. Apart from possibly demanding a secondary source, the literature on GET argues that activity in GET is graded and adapted to avoid exacerbations and is not technically the same as normal exercise. However I do think such sources like the ones above need to be included somewhere in this article, evidence for post-exertion symptom exacerbation is crucially important and seems to be unique to CFS. I recently added the following to the GET section, which I think is very conservative and doesn't go far enough but is carefully worded in an attempt to avoid another edit war.
- "To avoid detrimental effects on the immune system during GET, care must be taken to avoid the exacerbation of symptoms while catering the program to individual capabilities and the fluctuating nature of symptoms.[1] GET may be contraindicated in some patients due to amplification of pre-existing pathophysiological abnormalities.[2]"
- [1] PMID 18382818 - Nijs & Paul & Wallman 2008 - "Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations."
- [2] PMID 19855350 - Twisk & Maes 2009 - "A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS."
- I noticed that SW reverted one of these additions stating with the comment "not really appropriate to use this reference for that statement". However, since this is a 2009 secondary MEDRS review and the sentence is a précis of one of the key points of its abstract, I am not sure why Sciencewatcher feels that a "not appropriate" comment merits complete removal. Given that the recent reviews and papers on GET seem to have raised such general flags, I feel that this reference is indeed appropriate. -- TerryE (talk) 15:34, 16 August 2010 (UTC)
- This has been discussed before. This "review" is not a high quality review. Since it was published it only has 3 citations. The science doesn't back up the statement that Tekaphor put in regarding 'pathology' and GET. --sciencewatcher (talk) 16:37, 16 August 2010 (UTC)
- But it fails WP:MEDRS. How can we include it in the article if it is not a reliable source? It actually just has one citation - the other two are just letters to the editor by one of the authors. This has been discussed here before - do we have to go through this again? We can post on the reliable sources noticeboard if you want. --sciencewatcher (talk) 17:54, 16 August 2010 (UTC)
I'm not going to get involved in an edit war over a source that does not rank well on MEDRS for the text in question (GET vs "amplification of pre-existing pathophysiological abnormalities"), I was just being bold. I wouldn't however back down over using it as a reliable source for a brief mention of patient surveys in the main article, but I'm glad to see that using it for this purpose has not been challenged this time. There is a legitimate concern among patients that GET has the potential to cause harm because they have observed an activity ceiling and any further activity yet alone normal exercise is known to be detrimental to many people with "CFS" (the ones who meet criteria for significant post-exertion symptom exacerbation anyway) and anyone who doesn't acknowledge that is grossly out of touch with reality. That patients in the real world commonly report adverse effects from GET is a verifiable fact that no one here presently seems to disagree with.
There is substantial evidence that post-exertional symptoms do correlate with pathophysiology, but it is claimed that GET does not exacerbate symptoms because it is more careful, although the systematic reviews also suggest that adverse effects are poorly reported. It is frustrating that there is such a massive gaping hole in the literature but I understand the onus is on me or someone who agrees to find a better source for the detrimental effects of GET in particular rather than just the detrimental effects of exercise and activity. Again, I'm glad that the Nijs & Paul & Wallman 2008 caveat on being careful not to exacerbate immune-mediated symptoms during GET has not being disputed. - Tekaphor (TALK) 02:49, 17 August 2010 (UTC)
- Thanks, I'm fine with that. The Nijs+Paul ref is useful because a well designed GET therapy session should not be so vigorous as to make the symptoms worse. I understand your frustration about the lack of research on this. We have patients saying one thing and researchers another. Perhaps it is just some badly managed versions of GET that are too strenuous? Perhaps patients don't like the theories behind CBT/GET and they exaggerate the negative effects? Anyway, I think it is pretty much agreed that patients should not try to do too much - this fits in with pacing, energy envelope, etc. --sciencewatcher (talk) 13:55, 17 August 2010 (UTC)
- Oh, and just one point about Nijs+Paul: they assume that the immune system causes the other CFS symptoms, which has not been proven. --sciencewatcher (talk) 13:59, 17 August 2010 (UTC)
- Yes, poorly managed GET could explain some detrimental reports, respecting the patients' limitations should hypothetically minimise problems. But I think it goes beyond that, the wrong sort of patients are doing GET, who are not studied or are the non-improvers in research trials while adverse effects are poorly reported. As for patients "not liking theories behind CBT/GET", the theoretical basis for them is flawed and the research results are weak, so it's no surprise they're associated with controversy. Many patients experience substantial post-exertional symptoms, an activity ceiling, and are operating close to their capacity, all of which are relegated as deconditioning and the nocebo effect.
- Regarding your comment and tweak, CFS research is such a mess that nearly everything has not been proven beyond a doubt, it is not a reason for removal, we wouldn't have an article otherwise. There are multiple recent reviews in PubMed which discuss the research supporting the possible association between CFS symptoms in general and the immune system, some of which are co-authored by Nijs. You may also want to read the correspondence between Nijs et al and a comment from Clark & White, where the former group justify their statement. That was simply a discussion among GET supporters over 2 years ago, more research has come out since then which further supports an inappropriate biological response to exercise including an immune component, we may not know yet the underlying cause but it is occurring in many patients. Some of the newer research is covered by the CFIDS Association of America's recent article series on "post-exertional malaise" (Part 1 / Part 2 / Part 3) and I know how much you love patient organisations. ;-) _Tekaphor (TALK) 03:53, 18 August 2010 (UTC)
- It fails because it only has one citation. According to WP:RS: "The scholarly acceptance of a source can be verified by confirming that the source has entered mainstream academic discourse, for example by checking the scholarly citations it has received in citation indexes". It is really just an opinion piece and isn't suitable for quoting the medical info. --sciencewatcher (talk) 14:25, 18 August 2010 (UTC)
- Regarding GET and the immune system: I am not disputing the fact that GET will influence the immune system (even in perfectly healthy people it will do that!) What I am disputing is the fact that it will make symptoms worse because of that change in the immune system. That does not fit with existing research which suggests that it is a system-wide issue and the HPA axis or similar systems are responsible for the symptoms - therefore the immune changes would simply be another symptom, not the 'cause'. We can't simply put the info in because it appears in a study. According to MEDRS we should only be using primary sources if there are no secondary sources and only if they are important. I agree we should be including the info that GET could make symptoms worse, but we shouldn't be putting in an unproven and unlikely theory about why GET makes symptoms worse. --sciencewatcher (talk) 14:35, 18 August 2010 (UTC)
- Yes, I have read both sources. However the problem is that the sources are not reliable secondary sources - please read WP:MEDRS and WP:RS and address my concerns (above). --sciencewatcher (talk) 17:05, 19 August 2010 (UTC)
Regarding the review: it only has one citation. I would prefer not to use it at all if possible. However if people want to use it to quote patient surveys I won't object. But it shouldn't be used to give medical info. Regarding the Nijs article: it is a reliable source, but it is a primary source so we need to be careful how it is used. It is saying that symptoms are caused by immune dysfunction, which is by no means proven and goes against more reliable sources. All we can say is that care must be taken to avoid making symptoms worse. --sciencewatcher (talk) 17:19, 19 August 2010 (UTC)
- Claiming that immune changes (which you agree can occur) cannot contribute to symptoms, is illogical. Evidence keeps rolling in that a large proportion of ME/CFS patients have a biologically abnormal response to exercise, including immune changes. Regardless of the underlying cause, immune changes after exercise can plausibly contribute to symptoms even if not the sole contributor or the underlying cause of the condition itself. Why couldn't they??? The reasons you gave aren't convincing at all, akin to claiming that cytokines couldn't possibly contribute to malaise during influenza or emotional distress because they are only a "symptom" and not the "cause".
- Nijs & Paul & Wallman, all who apparently support a pacing form of CBT/GET, state that "there is evidence that exercise can exacerbate symptoms in chronic fatigue syndrome, if too-vigorous exercise/activity promotes immune dysfunction, which in turn increases symptoms". Promote simply means "contribute to the progress or growth of", that's all they are saying, and where's the alleged evidence and sources which contradicts this possibility? The components involved are not mutually exclusive, the brain-immune link is somewhat bidirectional and interdependent. Not being "proven" beyond a doubt and not being consistent with your POV is no reason to completely omit it from the article.
- On HPA-axis functional abnormalities, these aren't consistent or present in the majority of patients and appear to be relatively mild. Reviews on PubMed generally regard them as mostly an epiphenomenon that occurs later in the course of the illness and the function of the HPA-axis is not granted the special role of "puppet master" like you do. Even so, it's possible they contribute to some symptoms to some degree in some patients, but the presence of such abnormalities does not actually negate a role for the immune system in the exacerbation of symptoms, in fact it would probably encourage it. - Tekaphor (TALK) 04:08, 20 August 2010 (UTC)
- Where on earth did I say they 'cannot' contribute to symptoms? Of course they can! All I was objecting to was the notion that all the symptoms are caused by the immune system, which is implied by the wording. As you know the immune system is thought to be even less central to the symptoms of CFS than the HPA axis, but there are doubts about both. All I am saying is that we don't know what system is important in causing symptoms, so we shouldn't be saying anything about the mechanism. --sciencewatcher (talk) 14:34, 20 August 2010 (UTC)
- OK, I apologise if I misunderstood your previous statement: "What I am disputing is the fact that [GET's influence on the immune system] will make symptoms worse because of that change in the immune system." etc. I understand your objections. I don't know if the immune system is thought to be even less central to the symptoms of CFS than the HPA axis, but we don't know enough yet. I have saved a bunch of reviews and study abstracts on this issue but in practical terms it's going to take me quite a while to have a look at them properly and judge their appropriate weight according to MEDRS. - Tekaphor (TALK) 02:15, 21 August 2010 (UTC)
- Do none of the reviews discuss the issue of GET possibly exacerbating symptoms? --sciencewatcher (talk) 02:21, 21 August 2010 (UTC)
- I agree with Tekaphor's points. Immune dysregulation and consequent encephalomyelitis and infections are generally thought to be the most central pathology in ME; Tekaphor's language should remain in the article.
- Also, due to the extreme bias against publishing bona fide science in ME, the fact that the Twisk and Maes article doesn't have many cites should not stand in the way of it being cited here. JustinReilly (talk) 03:10, 27 November 2011 (UTC)
twisk and maes papers discuss exacerbation of symptoms when using GET as does numerous patient surveys, and NO twisk and maes DO NOT FAIL MEDRS. —Preceding unsigned comment added by 86.130.60.185 (talk) 19:12, 14 September 2010 (UTC)
- I thought this at first, "how could this possibly fail WP:MEDRS "?. However, SW is correct in pointing out that it only has one citation, it has not yet entered the mainstream academic discourse..ref WP:RS: "The scholarly acceptance of a source can be verified by confirming that the source has entered mainstream academic discourse, for example by checking the scholarly citations it has received in citation indexes". I think there needs to be more citations and scholarly backing before we use the text and main points covered in this particular article.StevieNic (talk) 13:58, 15 September 2010 (UTC)
- Yes, but what's the cutoff point for "scholarly acceptance"? I've noticed the biological research has been targeted based on a low number of citations according to "Google Scholar". So can editors therefore start removing sources for psychosocial speculations which fail this arbitrary threshold without triggering another edit war? - Tekaphor (TALK) 01:50, 16 September 2010 (UTC)
- How are you checking the citations? I just had to revert 2 of your reverts because you said '1 citation' and when I checked one had 80 and one over 100 citations! I did notice that for one of them, google scholar listed the article twice - once as a pdf with over 100 citations, and a second time with a link to the journal itself with only 2 citations - so you just need to be careful when checking. --sciencewatcher (talk) 15:44, 16 September 2010 (UTC)
- I was typing the article title into google scholar, and that returns very different results. Anyone have an explanation? --sciencewatcher (talk) 15:54, 16 September 2010 (UTC)
- It's my mistake I believe, the figure quoted on the right hand side of the PMed page is the number of citations in the PubMed Central Database only, and doesn't take into consideration citations in other databases ie. rsmjournals.com, oxfordjournals.org etc, etc.. which is what Google Scholar does. I think this might explain it..?? Hopefully...StevieNic (talk) 16:43, 16 September 2010 (UTC)
Could be, although considering those databases are all included in pubmed searches it seems odd for them not to include them in the number of citations. There are a few articles comparing google scholar to pubmed (and others) and the conclusion seems to be that google scholar picks up more citations, but can sometimes overinflate the results. See for example here --sciencewatcher (talk) 17:08, 16 September 2010 (UTC)
- I see what you mean. It all seems very confusing,,I think I shall leave things as they are at present.StevieNic (talk) 21:45, 16 September 2010 (UTC)
sciecewatcher seems to have invented his own rule over what can and cant go in the article, NO WHERE in the wiki rules does it says how many citations are the be all and end all of what gets included and neither is MEDRS the be all and end all of whats allowed, I have looked in the archive and its interesting to see that whenever twisk and maes gets raised or any paper that contradicts Sciencewatchers POV then they fight tooth and nail to block it, surely thats not on is it, can someone step in here please this is madness —Preceding unsigned comment added by 86.156.145.7 (talk) 22:01, 17 September 2010 (UTC)
Dundee University study
New study in the news today "found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection."91.109.131.149 (talk) 09:47, 7 September 2010 (UTC)
- Also, the link to journal article: http://archpedi.ama-assn.org/cgi/content/short/164/9/817 - Conclusion from abstract: "Biomedical anomalies seen in adults with CFS/ME—increased oxidative stress and increased white blood cell apoptosis—can also be observed in children with clinically diagnosed CFS/ME compared with matched controls. Unlike in their adult counterparts, however, arterial stiffness remained within the reference range in these pediatric patients." - Tekaphor (TALK) 07:39, 8 September 2010 (UTC)
Controversies
I just noticed that there is nothing in the Controversies section - it just links to the Controversies related to chronic fatigue syndrome article. Perhaps there should be a summary here, as it is such an important aspect of the article. --sciencewatcher (talk) 21:02, 16 September 2010 (UTC)
sounds like your trying to spin gossip and intrigue to me, dont see any point in this section unless its constructive and points out that patients need antiviral therapy or immune modulation or that graded exercise and CBT dont cure people, that is the controversy, but all that is blocked from this page for some reason —Preceding unsigned comment added by 86.148.133.147 (talk) 18:51, 19 September 2010 (UTC)
- I've added a couple of lines to try and sum up the main controversies page.. I didn't get far but it's a start and better that an empty template..Please feel free to add, delete, tweak or whatever...StevieNic (talk) 11:17, 20 September 2010 (UTC)
Cultural references
Should this be merged back in? It's hardly a standalone article, it's more like "Passing references to CFS/ME in TV shows". If the material isn't wanted here then I'm going to nominate it for deletion. Fences&Windows 19:44, 25 August 2010 (UTC)
- I personally don't think it should be merged into the main article, there isn't anything in there worth mentioning. If anything, I would recommend it for deletion.StevieNic (talk) 21:45, 25 August 2010 (UTC)
- I agree. It seems a bit pointless at the moment. --sciencewatcher (talk) 21:49, 25 August 2010 (UTC)
- While it's always nice to know that there's exposure out there, I have to agree with everyone else...it's not enough for an article of its own, and I don't really see any reason to cite TV show references in a medical article. Get rid of it. —RobinHood70 (talk • contribs) 20:41, 28 August 2010 (UTC)
- User:Tatterfly deprodded the article and thinks it should be merged with the main article. Tatterfly posted on Talk:Cultural references to chronic fatigue syndrome. Ward20 (talk) 01:03, 16 September 2010 (UTC)
It has just been merged so I've deleted it entirely. I really can't see anything there that should be in a medical encyclopaedia article..StevieNic (talk) 21:47, 16 September 2010 (UTC)
Yesterday, I merged the section on "cultural references" that was previously found in its own article. It had been prodded, but I deprodded it. I feel that a deeper discussion is needed prior to the total purging of this information per Wikipedia:Content removal guidelines. The prodder said that a discussion had been held, but I looked at it, and I did not feel it was enough for a consensus. Had it been an AfD, there is no guarantee it would have been closed as delete. Tatterfly (talk) 20:11, 17 September 2010 (UTC)
- We have 6 people all saying delete the entire thing (see above). How is that not enough?! You generally don't even see that much consensus for an AfD! --sciencewatcher (talk) 20:15, 17 September 2010 (UTC)
- Tatterfly, you are clearly going against consensus. StevieNic, if any more reverting needs to be done, please allow somebody else to do it. Two editors reverting back and forth usually leads to a page being protected -- one editor who keeps reverting against numerous others gets blocked for violating 3RR if he keeps it up. Looie496 (talk) 21:52, 17 September 2010 (UTC)
- Now the Cultural References page is just blank. Can someone delete it? --sciencewatcher (talk) 14:57, 18 September 2010 (UTC)
The section was absolutely awful and merited deletion for WP:TRIVIA. Good riddance. JFW | T@lk 21:28, 18 September 2010 (UTC)
- I've just added a proposed deletion tag to the page, so it will be automatically deleted in 7 days. --sciencewatcher (talk) 03:15, 19 September 2010 (UTC)
Just for everyone to know. It is not me versus everyone else. Someone actually reverted the Cultural References page following the merge, so at least 2 people are in favor of keeping this content. I am bringing up this matter at dispute resolution, where I am willing to accept the agreement made. You can find it here. Tatterfly (talk) 23:32, 19 September 2010 (UTC)
- Nobody except you has argued for having the material here. I have reverted your re-addition. Continuing to re-add material that all other editors agree does not belong constitutes disruption. Please don't re-add it unless you can get agreement from other editors. Looie496 (talk) 01:55, 20 September 2010 (UTC)
Could I persuade Sciencewatcher (and anyone else) to use AFD rather than PROD after the first PROD is contested? I have little doubt that the content violates WP:TRIVIA several times over, and that it does not belong in an encyclopedia. Unless someone has made an academic study of cultural depictions of CFS/ME, this is unlikely to ever reach the inclusion horizon. JFW | T@lk 10:36, 20 September 2010 (UTC)
- Uncle G has banged a few heads together, and I've nominated it for deletion. Stop squabbling. Fences&Windows 13:47, 20 September 2010 (UTC)
POV pushing?
justification for section header renaming, previously reverted
|
|---|
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from WP:Talk:
I hope this helps the editor who started this section understand why section header was renamed. -- Scray (talk) 21:02, 2 October 2010 (UTC) |
I would like to complain that sciencewatcher keeps automatically undoing totally reasonable edits, someone removed the word "although" from a scentance to make it clearer and actually portray reality as laid down by the world health organisation that M.e is neurological. Sciencewatcher seems to try and underplay that FACT and keeps undoing it whenever anyone removes the weasel word of "although" becuase the current sentance implies that the neurological status is under question...last time I checked sciencewatcher doesnt get to write W.H.O policies....must we fight tooth and nail for EVERY SINGLE DAMN EDIT...someone needs to step in here and put an end to this bias on these pages. —Preceding unsigned comment added by 86.130.62.20 (talk) 15:58, 24 September 2010 (UTC)
scienwatcher has claimed on the edit history pages that the neurological status is under dispute which he has no status to claim that at all, the world health organisation has not claimed that either, lets stick to facts. Also when I put the 3 definitions into chronological order of date with the most recnt on top sciencewatcher undid it and claimed that he thinks chronological order is not logical....I know hard logic to follow...any encyclopedia in the world would put the most recent on top, but sciencewatcher seems to think he has carte blanche to decide what definition is most important, this is not how editors are supposed to behave, please can people help here, this is borderline meglomania —Preceding unsigned comment added by 86.130.62.20 (talk) 17:08, 24 September 2010 (UTC)
- Please self revert, Mr IP, or you will be blocked and/or the page locked because of the three revert rule. - MrOllie (talk) 17:13, 24 September 2010 (UTC)
- look at the accusations first, my edits were in total goodfaith, the same scenario happens as usually happens...sciencewatcher undoes it then gets his usual crew to come help out, look at my edits READ them and tell me WHY they are speedy deleted with NO PROOF —Preceding unsigned comment added by 86.130.62.20 (talk) 17:17, 24 September 2010 (UTC)
- The criteria were originally presented according to WP:WEIGHT. Google scholar gives a clear indication of ranking of the use of the criteria:
- The CDC definition is cited by 2207 on Google scholar as well as being stated as the most commonly used by several reviews.
- The Oxford criteria is cited by 560 on Google scholar.
- The 2003 Canadian Clinical working definition is cited by 148 on Google scholar. Ward20 (talk) 17:56, 24 September 2010 (UTC)
- I may have been the one who added the word "although" in a series of related edits as a compromise to help resolve some dispute on the talkpage. Basically I reworked the following text: "The disease process in CFS displays a range of neurological, immunological, and endocrine system abnormalities. Although classified by the World Health Organization under Diseases of the nervous system,[3] the etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker.[2]" I also made the following argument which may be relevant here too: "It is obvious that CFS is not 'universally agreed' to be a neurological, but the questions are (1) is there a reliable source for that, (2) how relevant are those who disagree with WHO's current classification of ME/CFS? And besides a letter authored by two psychiatrists, how many other doctors and scientists have openly rejected the WHO's ICD and authority?" I have no problem whatsoever with removing the word "although". As for the priority of CFS definitions, I prefer the Canadian 2003 definition but the CDC definition is the most frequently used and is therefore given priority by Wikipedia (yes, it's a popularity contest). 86.130.62.20 also asks "must we fight tooth and nail for every single damn edit"? I've been around Wikipedia long enough to know that the answer is "much of the time, yes". - Tekaphor (TALK) 02:19, 25 September 2010 (UTC)
- Honestly, I think the word "although" portrays the situation quite accurately in this instance. To date, we don't know what causes CFS, but the symptoms do seem to be primarily neurological. I have to assume that that's why the WHO classified it as it did. I would be surprised in the extreme if they intended in any way to portray it as a certainty. To remove the word "although", however, makes the sentence read much closer to it being a certainty, which is simply not justified in this case. I feel it is the IP who's pushing his POV here, not Sciencewatcher.
- Also, the IP needs to understand that while Sciencewatcher leans more towards a pscyhological explanation (at least, I think that's a fair statement...no offense intended if it's not), every other editor who frequents this article tends more towards a biological explanation for CFS. Characterizing these pages as biased solely because of him—when there are so many of us who are, if anything, biased in the other direction—seems ludicrous to my mind. —RobinHood70 (talk • contribs) 23:46, 25 September 2010 (UTC)
it seems a lecture in english language is in order here, the word although is terribly misleading becuase it is a POV, it is suggesting that the classification is able to be over ruled by a mere wiki editor, this is an encyclopedia and requires FACTS, WHO classify it as neurological, therefore the sentance should read "it is classified as a neurological disorder by W.H.O"....the word although is just totally and uterly wrong, no matter what your person POV of the classification is, so therefore I agree with the IP editor —Preceding unsigned comment added by 86.143.166.35 (talk) 19:52, 29 September 2010 (UTC)
- Since all the IP editors advocating for the removal of the word "although" are from the same ISP in the UK, this seems to be a highly-localized interpretation of the word. Personally, I see it as a "compare & contrast" wording. It's not dismissing the classification, just presenting it with appropriate weight and in the appropriate context. —RobinHood70 (talk • contribs) 21:16, 1 October 2010 (UTC)
let me give some background info about computers and the uk here, I guess you are aware that the UK is a very small place? ok so you got that right? so you should probably also know that British Telecom is probably the largest provider in the uk, so the fact that a few IP's are based in uk and on BT isnt exactly that unusual, plus the IP's are all different so STOP trying to slander IP's just cos they aint in a little clique of editors, and IP editor is JUST AS VALID as one of the other. so get over it and stop sidetracking the issue —Preceding unsigned comment added by 86.143.166.28 (talk) 11:54, 2 October 2010 (UTC)
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PMID_11809249was invoked but never defined (see the help page). - ^ Cite error: The named reference
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{{cite journal}}: Unknown parameter|month=ignored (help)CS1 maint: multiple names: authors list (link)