Talk:Chronic fatigue syndrome

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UK Situation in General[edit]

The material on the 'British situation' has undue weight in terms of it's presence on this page that does nothing to improve understanding of the illness, while the symptoms section is little more than a list and very hard to read. This should be moved into the Controversies page. Leaving it here creates a fork lacking balance and lacks a Neutral point of view WP:NPOV.

It also needs to be much more 'Journalistically sound' by properly drawing together the full impact of those targeted and the limited extent of that activity.

New edits[edit]

I generally agree that most of the newer edits by Doc James improved the article but I have disagreements with some. I wanted to discuss them to see if there is consensus.

  • I don't believe serious symptoms in the first sentence of the lead is as accurate as debilitating symptoms. A majority of the recent reviews and guidelines seem to use the wording "debilitating symptoms" to describe the illness.
  • I disagree with separating the Oxford criteria from the other criteria as they are all used for clinical and research purposes. I believe they should be recombined and possibly the title renamed to better describe the section.

There are some other wording changes that may improve the article here and there. Now that the sections are rearranged and simplified it has exposed other weaknesses in the article. But these seem to be minor and in time copy editing should fix these. Good job Doc James. Thanks. Ward20 (talk) 15:31, 7 May 2015 (UTC)

Agree that overall this is an improvement - although it would have been good if DocJ could have at least outlined his strategy on this page given the scale of changes. I agree with Ward that 'debilitating symtoms' is a far more useful term. As regards the split of the Oxford reference - I think that is wholly logical and I would keep DocJ's edit; Oxford was developed specifically for Research and as far as I'm aware has never been expressly employed in a clinical setting. I haven't been able to go through all the changes,although something did stand out as problematic (not sure if new or old) is:
  • Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness for many people in multiple randomized controlled trials. Many seems far too ambiguous, certainly PACE only showed notable benefit for a minority.
I also agree with Ward that the new presentation shows up deficiences in the article. Some sections look somewhat bloated relative to the information given the reader, and it might be worth looking at reductions where daughter articles exist.--In Vitro Infidelium (talk) 17:24, 7 May 2015 (UTC)
Sure so I had two goals
1) to order this article to match the outline used for other conditions per WP:MEDMOS
2) to simplify the language to make the lead more accessible specifically Doc James (talk · contribs · email) 20:38, 7 May 2015 (UTC)
How about rather than "CFS is a medical condition characterized by significant symptoms, including fatigue, that lasts for a minimum of six months in adults (and 3 months in children or adolescents)."
"CFS is a medical condition characterized by symptoms, including fatigue, that lasts for a minimum of six months in adults (and 3 months in children or adolescents). These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.[1]"
rather than use the complicated word "debilitating" we can simply write what it technically means "limited ability to carry out ordinary daily activities"
By the way the new MedlinePlus content is in the public domain and therefore we can use it verbatim. They have partly dumped ADAM. Doc James (talk · contribs · email) 20:43, 7 May 2015 (UTC)
I suggest "CFS is a "devastating and complex" medical condition characterized by fatigue and other symptoms that substantially limits a person's ability to carry out ordinary daily activities. The illness must last for a minimum of six months in adults (and 3 months in children or adolescents) in order to receive a diagnosis.[2]" Ward20 (talk) 10:32, 8 May 2015 (UTC)
That is more complicated IMO. Also does not have a very encyclopedic tone. Doc James (talk · contribs · email) 17:06, 8 May 2015 (UTC)
I think the term "devastating" is too subjective, and the disease varies from one person to the next anyway. While certainly life-altering for me, I think "devastating" would be a bit strong of a term, while others who are permanently bed-bound most certainly are devastated by the disease. I have no objections to the term "complex", though—after all, if it were simple, we'd know exactly what it is by now—and I like the idea of including wording that specifically references the change to ordinary daily activities, since even milder cases of it usually have a notable impact in that area. Robin Hood  (talk) 19:24, 8 May 2015 (UTC)

OK, here is a mash up for consideration: "CFS is a complex medical condition, characterized by fatigue and other symptoms, that lasts for a minimum of six months in adults (and 3 months in children or adolescents). These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.[3]"

Ward20 (talk) 07:03, 9 May 2015 (UTC)

Could we simplify it a little further to "CFS is a complex medical condition, characterized by fatigue and other symptoms, that lasts many months. These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities."
We can than describe the exact number of months in areas as the exact number of months IMO is not the most important. Doc James (talk · contribs · email) 16:04, 9 May 2015 (UTC)
I'd suggest changing the wording to "long-term fatigue and other symptoms", if we're going to simplify it to that extent. As worded there, it sounds like the disease comes for a few months and then goes away again, which obviously isn't the general case. Robin Hood  (talk) 17:42, 9 May 2015 (UTC)
Yes, using the wording, "long-term fatigue and other symptoms" I would eliminate "that lasts many months" as that term would then be redundant and possibly ambiguous as to the illness duration. Ward20 (talk) 18:01, 9 May 2015 (UTC)
Sounds good. Doc James (talk · contribs · email) 18:12, 9 May 2015 (UTC)

────────────────────────────────────────────────────────────────────────────────────────────────────

  • The problem with that suggestion above is that 'Myalgic Encephalomyelitis' now redirects here. That is not long term 'chronic' fatigue. It is exhaustion that comes and goes -dependent on the amount of activity, both mental and physical. We have both 780.71 & G93.3 locked into one article. It would be better to separate them again. One code, one unique article article. Otherwise, it continues to go against, all we have been taught about about correct nomenclature & taxonomy. That established form is the correct way (as an encyclopaedia) to organize things. --Aspro (talk) 13:33, 10 May 2015 (UTC)
This suggestion has been brought up many times in the past. The problem is that there's no broad agreement that ME and CFS are two separate things. Before we can entertain separating the two, there would have to be significant support for the idea in the medical literature from government health agencies, in the various journals, that sort of thing. The ICD itself doesn't make the clear distinction, and the two codes you're referring to are in different versions of it, so we can't say that they're two different entries for two different diseases. Also, contrary to your assertion, for many of us, there is chronic fatigue (and other chronic symptoms, of course) which gets a lot worse when we exercise. The new SEID criteria, for example, even suggests that "The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity." It's been a while since I've read them, but as I recall, the CCC and ICC allow for both intermittent and chronic illness, and make no distinction between them. Robin Hood  (talk) 15:32, 10 May 2015 (UTC)
Is it any wonder that “This suggestion has been brought up many times in the past.”? This redirect (ME to CFS) was done some years back, when a number of psychiatrist (who have become known as the Wesley School) gained some traction in convincing people that ME was psychological in origin. Yet there was never any logical reason offered, to lump CFS (associated with cancer etc.,) with and other codex designations. Prof. Wesley has now excused himself from this and so we should re-split the articles. It will make the wording easier. Trying to blend a conclusion from two different premisses, was discovered by the Greek philosophers to be impossible. Now that, that Prof (that original promoted this), has backed-out himself, from wanting to lump all these sign and symptoms together -then what is the point of WP still lumping everything together? This problem didn’t exist before the redirect. The redirect only serves to confuse. So why not go back to where we were before? To say this problem has cropped many time since the redirect is maintaining a circular argument. --Aspro (talk) 16:05, 10 May 2015 (UTC)

"characterized by long term fatigue and other symptoms" does not mean that "long term fatigue" must always be present. It is just a common symptom. Both are two such a degree that functioning is affected. So the text we have is correct for both terms and thus I see no reason to separate. We can discuss the finer details in the body of the article. The lead is for generalities. Doc James (talk · contribs · email) 16:19, 10 May 2015 (UTC)

Many a malady has over-lapping signs & symptoms. Are you suggesting, that using your logic, I can do a blitz on WP and redirect multiple article with over lapping symptoms? As to “We can discuss the finer details in the body of the article.” Chronic_fatigue_syndrome#Comorbidity just takes up 4 sentences! I see where you coming from, yet the problem (in part) lays with the word 'Syndrome'. CFS is not a pacific disease. Denying finer taxonomies their own article is taking a step backwards and sitting on it. The article CFS would make more 'rational' sense if included See also to the other codexes and definitions. If we were only to stop bitching amongst ourselves, an epidemiologists (or two or three) may be willing to contribute. But professionals steer clear of articles where they find, that as anybody can contribute to WP, their own contributions get deleted as fringe because other editors were only exposed to the superficial, simplistic explanation in med skool. I agree with Doc James that we should discuss this in finer detail – yet, for that to be productive, we need to have those discussions in the right article talk pages. Otherwise we might as well say to all the WP editors they can forget nomenclature & taxonomy, and just edit in a way that makes them feel warm inside. The reason that “This suggestion has been brought up many times in the past” is because some people 'care' and are willing to question past dogma and bring their learning up-to date. Split the article back again and then see if anyone can come up with a justifiable reason to bring about a consensus to redirect. --Aspro (talk) 20:11, 10 May 2015 (UTC)
Actually, I never said anything about the previous redirect, I said that the suggestion had been brought up in the past. I'm aware that there was redirect some time ago, and I'm aware that, both currently and in the past, there have been people editing the wiki that have both pro-physiological and pro-psychological viewpoints. I believe, in fact, that most of us currently monitoring the article believe in a physiological basis for the disease (i.e., we're not of the Wessely school). None of that has anything to do with what the medical literature says, however. If you want to suggest a split, you need to find reliable medical literature that says they're two clear and distinct diseases. It's really that simple. The ICC states that those with ME should be excluded from CFS, which is an excellent starting point, but one diagnostic criteria out of some twenty or more is not sufficient to justify the split. So, what other significant medical literature or bodies suggest that ME and CFS are separate? If you can find a couple of things like that that comply with Wikipedia's requirements, the split can happen anytime. In the absence of such evidence, however, Wikipedia's own rules say that the split can't happen. Robin Hood  (talk) 06:13, 11 May 2015 (UTC)
Aspro, you brought up the same topic here in February and the same arguments are being rehashed. Right now there seems to be more reliable sources equating cfs and me than separating them. If you can prove otherwise than great, produce the sources.
There is a chance this topic will heat up in the medical literature in October of this year when ICD-10-CM is implemented, and USA doctors will have to choose between diagnosing one or the other because the two diagnosis codes are mutually exclusive. Note it lumps and Chronic fatigue, unspecified and Chronic fatigue syndrome NOS together which is bound to cause issues:
"G93.3Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Excludes1:chronic fatigue syndrome NOS (R53.82)"
"R53.82Chronic fatigue, unspecified
Chronic fatigue syndrome NOS"
I would advise either presenting reliable sources to back up your suggestion now, or waiting until After October to see if more reliable sources back your suggestion then. Ward20 (talk) 09:12, 11 May 2015 (UTC)

────────────────────────────────────────────────────────────────────────────────────────────────────Thanks to Doc James for explanation of strategy which makes full sense of the changes. @Aspro - we've been through this at length previously. Let's be absolutely clear - there never has been a WP article based on ICD-9-CM that was separate from an article based on ICD-10 or any previous ICD iteration. There were, some years ago seperate CFS and ME articles but both referenced ICD-10 and ICD-9-CM, and neither article would now meet current WP standards. Without any MEDRS to base a split on this is a dead issue unless perhaps, as Ward20 suggests something arises from conflicts within the operation of ICD-10-CM. Given that ICD-11 is in preparation, that it will be a more complex iteration than ICD-10, and that there is a potential for SEID to enter classification in both ICD-11 as well as in ICD-10-CM annual updates, setting out to create separate CFS and ME articles at this point would seem foolish given the level of effort involved, and that major re-evaluation may be required on a continuing basis over the next one to two years. --In Vitro Infidelium (talk) 17:28, 12 May 2015 (UTC)

Aspro is right, ME/PVFS/Iceland disease/Akureyri disease should not redirect to the CFS article. WHO ICD G93.3 should have its own article. The former mentioned disease names/descriptions/ICD entries existed long before CFS did and it makes no sense to subsume them under what is clearly an ICD-9-CM CFS based article. It leads to ridiculous confusion, like the box on the top of the page listing classification. It lists the ICD-9-CM code for CFS but then the WHO ICD-10 code for PVFS. As mentioned above, this should be changed soon to reflect the upcoming ICD-10-CM classifications (to be clear, it should say ICD-9-CM 780.71 and ICD-10-CM R53.82), and clearly I think the fact that the ICD-10-CM lists them as separate, exclusionary diagnoses supports the creation of a separate PVFS/ME article. Don't hold your breath for ICD-11, it's a long ways off and ICD-10-CM will likely be in use for a long time to come. Anal0gue (talk) 19:19, 17 June 2015 (UTC)
Again, where is the evidence? I know it's the in thing in the ME/CFS activist community to try to separate ME and CFS, but there's really no broad agreement on whether they're one disease, two, or a hundred. The fact that the ICD and International Consensus Criteria suggest a split is certainly a step in that direction, but we're not at the point yet where we can justify a split based on Wikipedia's guidelines. In order to do that, there needs to be broad agreement that ME and CFS are clearly separate things, and there needs to be supporting evidence. Otherwise, we end up creating a POV fork, and simply duplicating most of what's here on both pages. When there's solid evidence that they're two separate conditions, that's when we split them on Wikipedia. Robin Hood  (talk) 21:46, 17 June 2015 (UTC)
It's also the "in thing" in research to try and separate them because it's an important question that needs to be answered. Leonard A. Jason has been doing work in this area and reports that ME criteria select out a different patient group than CFS criteria. That's pretty compelling evidence for a difference. Without a biomarker we'll never be able to definitely say they're different. It's also a bit of a double standard. While I don't have any solid evidence that they are different to support a split, you don't have any solid evidence that they are the same to maintain a single article. With the way this article is now, it's too narrow of a POV, only focusing on US Fukuda CFS. I imagine it would rustle everyone's jimmies if people started adding ME specific information in this article and it would be rolled back, much like if someone tried to populate the ME article with ME specific information. In this way, all information about ME is unfairly suppressed. It has nothing to do with activism. Anal0gue (talk) 19:53, 19 June 2015 (UTC)
Yes, you're right, it is a very important question, and I firmly believe that different conditions will be split off in the future as evidence becomes available. Various pilot studies that I've seen over the years I've had this have suggested that what currently gets grouped under the term "CFS" may be as many as seven or eight different conditions, while others suggest that it's just one, with a very broad array of symptoms. Anyone looking at forums will see some fairly substantial variations between patients, which is why I personally believe it's more than just one thing, but I can't prove that, and so far, neither has anyone else. Even those who are proponents of separating ME have yet to prove that the encephalomyelitis occurs in all cases of CCC/ICC-defined ME. Last I heard, there were only one or two very preliminary studies that suggested that that was the case, not anything resembling proof. As for selection criteria, that's a no-brainer, though certainly Leonard's work is going a long way to formalizing the results. The simple fact is that if the criteria always selected the same groups, the debates over what criteria to use wouldn't be happening and a lot more progress would've been made on this/these condition(s) by now.
As for a double-standard, it's not at all. Most of the literature currently still treats them as a single entity. Can they prove it? No, of course they can't, because we don't have any kind of known etiology at this point. But since the literature mostly treats ME/CFS as a single thing, so must we. If the majority of the literature starts treating them as clearly separate things, or better yet, clear proof comes out that they're separate things, then Wikipedia will absolutely follow suit and I'll be the first to propose/support such a split. Given that they're mostly being treated as a single thing right now, by all means, go ahead and add whatever ME-specific stuff you can find. Just be aware of the restrictions set out by WP:MEDRS, which require that studies by reliable, secondary sources, for the most part.
Finally, as for Fukuda-defined ME/CFS, I'm curious where you see that. If the scope of the article is in any way too narrow, then by all means, we should expand it to ensure that we're presenting a clear, accurate picture of things. Unfortunately, most of the times people have brought forward that suggestion, it's based on whatever preliminary research or unproven assertions (even if those assertions are by experts in the field) are currently popular in the forums and/or the activist community. Wikipedia doesn't work that way, one of its major precepts being verifiability, not truth. Robin Hood  (talk) 20:34, 19 June 2015 (UTC)
Also, can you point me to which Wikipedia guideline would be against a split of the two? As far as I can tell, this is a pretty unique scenario, there don't seem to be many diseases with more than one (or in the case of ME, 7+ names). I actually spent almost an hour going through the ICD-10-CM and WHO ICD-10 looking for another example disease so I could see how it was handled on WP but couldn't find one. It's also a little weird to me that SEID redirects to the CFS article. It's going to have its own, likely separate ICD code. It has it's own history and diagnostic criteria. The whole point of the creation of SEID was to move away from the inaccurate, stigmatic CFS name. And here we are redirecting SEID to CFS. Anal0gue (talk) 00:29, 20 June 2015 (UTC)
(edit conflict) Let me come at this from another angle: let's say a split happens. Without question, on both the ME and CFS pages, we would want to define how the two are different from one another. Provide the text for that distinction, with reliable references from sites such as PubMed. (Sorry, looks like we just cross-posted, I'll respond to the above message in a sec.) Robin Hood  (talk) 00:33, 20 June 2015 (UTC)
Why does it have to be a medical literature based distinction, can't it be a historical distinction? Wikipedia is an encyclopedia, not a medical text book. There is a history and information about ME that existed for decades before CFS was even invented. Shouldn't that information exist in an encyclopedia, underneath the appropriate heading? Anal0gue (talk) 00:54, 20 June 2015 (UTC)
Here is the text for the distinction, right out of the ME ICC paper, indexed on Pubmed:
″The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).″ [newedits 1]
Yes, a lot of the literature uses the terms interchangeably, but that doesn't make it right. Strictly speaking, if a paper uses one of the CDC criteria, it should say CFS. If it uses the CCC, it should say ME/CFS. If it uses the ICC, it should say ME. If it uses the IOM criteria, it should say SEID. Anal0gue (talk) 01:12, 20 June 2015 (UTC)

() I pointed you to the relevant guideline above: POV fork. You're certainly correct that this is a fairly unusual situation. The only similar situations I can think of went in the opposite direction, merging two diagnoses into one. The first is sociopathy vs. psychopathy. Currently, those are the same article because the popular belief in psychology is that they are. Twenty or so years ago, they would likely have been two separate articles. Another one is the debate about high-functioning autism vs. Asperger syndrome. Amusingly, despite the DSM-5 doing away with the diagnosis of Asperger's, we still have two separate articles. I haven't looked, but I wouldn't be surprised if those pages have had a lot of similar split/merge debates because I believe they're both still considered contentious issues.

As far as SEID goes, that's definitely going to be another one to keep our eyes on. At the moment, it redirects here because even though the different diagnostic criteria come up with different results, they're all trying to evaluate the grouping known broadly as CFS, of which ME and/or SEID may or may not be a part. If the term SEID becomes accepted and widely used, and even more so if it defines a clear disease process that can be distinguished from other things currently grouped under the CFS umbrella, then I think we could entertain renaming or splitting the article. Right now, though, SEID is only a proposed name from an American institution and the criteria for it still need to be evaluated for how effective they are at identifying patients.

Responding to your next post, we do have some of the historical definitions under the History section, plus of course that links to an entire article about the history. If we ever do split this article, some of that would definitely go into the new one and quite possibly end up being removed from here, depending what is seen as being included/excluded in CFS at that point.

And for your most recent post, I'll let others comment, as I'm less neutral on that issue than someone else might be (amusingly, I'm both for and against a split, simultaneously, which is a very confusing position to have). Even with the ICC bit that you quoted, though, that would support a renaming, but not necessarily a split. Robin Hood  (talk) 01:19, 20 June 2015 (UTC)

Another reason not to split at this time is the 2015 study Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Some definitions may not be describing different illnesses, but may instead be selecting different phases of the same illness. In any event the material that is now being discussed can be used in the article Clinical descriptions of chronic fatigue syndrome with secondary sources showing how the people described vary with the definitions used. That article is in need of an overhaul anyway. Then if secondary sources start to split off subgroups per various definitions, new articles could be developed from there.Ward20 (talk) 08:02, 20 June 2015 (UTC)
The Lipkin/Hornig study is not a very compelling argument for ME and CFS being the same thing. The inclusion criteria for patients in that study was Fukuda *and* CCC, plus they had to have developed the disease following a viral illness. The last part is key and probably heavily selected out the real ME (aka post-viral fatigue syndrome) patients. There is a new paper out by Twisk[newedits 2] that concludes that ME and CFS criteria define two overlapping but distinct clinical entities. He states plainly that ME is not equivalent to CFS. Anal0gue (talk) 01:13, 24 June 2015 (UTC)
  1. ^ http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
  2. ^ http://www.wjgnet.com/2222-0682/full/v5/i2/68.htm
That's still one person's opinion. Until it becomes broadly accepted, Wikipedia cannot take the stance that the two diseases are distinct. As Ward says, we don't fully understand yet whether we're looking at one disease or many. Any splitting of the article needs to wait until the science is more certain. Robin Hood  (talk) 14:57, 24 June 2015 (UTC)
Anal0gue please read WP:MEDRS. It really is pointless reference trading when the references simply don't meet WP's basic requirements. For a major change to the article structure such as splitting into two new (and largely mirror) articles, we would need some very strong WP:MEDRS recognised material - at least two separate publications would likely be required to underwrite a sustainable split. It may be frustraing but WP is rules based (mostly) and innovations tend to stand only when the rules (in this case WP:MEDRS) are fulfilled. --In Vitro Infidelium (talk) 16:08, 24 June 2015 (UTC)
I understand the requirements, but please show me two separate secondary sources that confirm ME and CFS are the same thing supporting a merged article. This article is full of primary source references. If it wasn't, the entire article would probably be about 3 paragraphs long. There are very few secondary sources for this disease because there is so little known and so little research. The most recent secondary source, the AHRQ report, should barely get away with using ME in the title. Yes they included research using the CCC ME/CFS criteria, but they also purposefully cut off the literature search at 1988 because this is when the first CFS definition came about. They ignored decades of ME only research on purpose for reasons I can't begin to understand.
I don't believe the articles would mirror each other if they were split which is why I advocated for splitting them in the first place. The ME article could be based on secondary sources from 1934 to 1988 covering ME, and any other sources after that based on research using Ramsay/London, CCC, and ICC criteria. The CFS article could remain based on any secondary sources using Reeves/empirical/Fukuda criteria. Anal0gue (talk) 22:24, 24 June 2015 (UTC)
@Anal0gue: The NICE guideline, for instance, lumps CFS and ME together. Many others do too. There is loads of research but a lot of it is of dubious quality and just confuses matters. As for "ignoring ME research", that's a question you need to ask the authors of the criteria.
I think you're going to find it difficult to find consensus for your proposal to fork the ME article. It's been discussed before and things remain the way they are currently. JFW | T@lk 22:54, 24 June 2015 (UTC)
Yes, the NICE guidelines refer to CFS/ME, but as far as I know there's no evidence reviewed there that prove ME and CFS are the same or different. Anyone can write "ME/CFS" when they're writing up a research paper, but that's different than actually doing a study where you compare patient groups diagnosed with the different criteria and proving they are the same or different. As I mentioned above, there is some work in this area with some preliminary findings showing they are different but it needs way more study.
I see there is little support for splitting the articles but I remain unconvinced that it would be against WP policy if done correctly. Has it ever been proposed to rename the article to myalgic encephalomyelitis and redirect CFS to it instead? The ME name has been around far longer and is also less US-centric. As shown above, the ICC (a secondary source) recommends use of the term ME over CFS and was penned by the worldwide experts in the disease. Additionally this 2007 review by Hooper recommends the same. Anal0gue (talk) 04:52, 25 June 2015 (UTC)
It would be against policy if there's a consensus not to fork and then you fork anyway. The arguments for splitting have been debated in extenso before.
Old names for diseases are often abandoned or subsumed (e.g. the name "consumption" for "tuberculosis" or "Wegener's disease" for "granulomatosis with polyangiitis"). The ICC criteria are extremely inclusive and Hooper's review is rather controversial. The new IOM report, probably one of the most authoritative voices one will ever hear on the subject, explicitly includes ME.
Incidentally, have you come to Wikipedia only to have a discussion on this subject, or are you planning to make some other contributions? JFW | T@lk 07:36, 25 June 2015 (UTC)
I'm not talking about other diseases, I'm talking about ME, and as I pointed out the world experts on the disease reached a consensus in 2011 and recommended calling the disease ME. That's pretty far from abandonment. Yes, I came wanting to make contributions on ME because there seemed to be a dearth of information about it on WP, and now I see why. Anal0gue (talk) 08:13, 25 June 2015 (UTC)
There is a dearth of the kind of information that you would like to see. As it happens, the content on Wikipedia develops by consensus, and that's why it looks the way it looks. Over the years there has been lively discussion on this talk page, with representatives from all schools of thought in this area.
Short of forking the content about ME, what improvements to the article do you propose? JFW | T@lk 12:18, 25 June 2015 (UTC)
JWF, could you perhaps explain why you think it would be a fork? At first glance, I see nothing in this article that would reappear in an article on ME. Cheers, The Jolly Bard (talk) 22:06, 26 June 2015 (UTC)
It would not be a fork but returning to the situation before ME and CFS was erroneously combined. The original medical proponents have now distanced themselves from their hypothesis – so their argument is now moot...i.e. Irrelevant. Why should WP not be able to correct itself for the sake of some editors that cling to out of date dogma?--Aspro (talk) 23:44, 26 June 2015 (UTC)
The names "chronic fatigue syndrome" and "myalgic encephalomyelitis" have, at least for the last 20 years or so, generally been used synonymously. There's still no consensus in the broader medical community as to whether they're one disease or several. Splitting the article at this point would only lead to a huge overlap in content because of that issue, and the parts that don't overlap would be based on an emerging belief that lacks solid scientific evidence. There's certainly very suggestive evidence, but I don't think it's strong enough at this point that anyone can say with certainty what it is that differentiates them. Some have suggested that post-exertional malaise is a distinguishing factor, and personally, I believe that may be true, but I can't ignore the possibility that it could be like hyperactivity in ADHD...there are a group of ADHD patients where there is clearly little or no hyperactivity. Robin Hood  (talk) 22:39, 26 June 2015 (UTC)
Like I said, I don't see the overlap that you suggest. ME has a different definition from CFS altogether, so there is no need or incentive to find evidence that they are different. I would not copy anything from this CFS article. The Jolly Bard (talk) 23:11, 26 June 2015 (UTC)
The signs might be identical but the symptoms are very much different. A cohort of children may all show the same reddish rash but other signs and symptoms may indicate that some need antibiotics P.D.Q ('pretty damn quick'). ME might be slower but people can and do die from the complications. It doesn't mater what one dies from -the end result is the same. Do I need to emphasize that.. rigour mortice sets in and YOU are no more. Medial science progressed by creating a nomenclature whereby patients started getting the right treatment for the right malady. Please don't try to turn the clock back with argument from out of date authority. One doesn't need evidence that disconnected conditions are not related – rather the revers.--Aspro (talk) 00:28, 27 June 2015 (UTC)

Edit Break 1[edit]

ME has a different definition than CFS and the symptoms are different? Really? Where do you guys see that? Provide good, solid, widely accepted evidence and we can split this article tomorrow. So far, nobody has done so. Robin Hood  (talk) 06:09, 27 June 2015 (UTC)

Just to further the point, by evidence, I mean things like the following:

  • "In some countries the disease is referred to as ME and in others as CFS and has now become known as ME/CFS until research indicates whether a more suitable name applies." (ME/FM Action)
  • "'Myalgic Encephalomyelitis' and 'Chronic Fatigue Syndrome' are used interchangeably and this illness is referred to as 'ME/CFS'." (Canadian Consensus Criteria)
  • "Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS, is a disease..." (IOM Report, bolding mine)
  • "...chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)..." (Better Health Channel, government of Australia)

These are just a few that I picked at random, trying to go for a wide variety of sources. If we're going to entertain a split, you have to find sources that clearly state that ME and CFS are different, and that the sources above are simply out of date. Robin Hood  (talk) 07:17, 27 June 2015 (UTC)

You are correct that many sources say that ME and CFS are often used interchangeably - that is, by these same sources and the governments that pay them. That by itself is a phenonemon worthy of an article. However, none of the references above represent any kind of authority on the matter, as they are entirely self-serving. You're looking at the issue from the wrong angle. The question is, is there any evidence in your sources that supports the idea that ME and CFS are synonymous. There is not. Therefore, a conclusion of synonymity is original research, and carries no weight here.
Now, I've looked through the references currently used in this CFS article, and of the 148, there is only one that would be found in an article on ME (Carruthers 2011). Cheers, The Jolly Bard (talk) 12:32, 27 June 2015 (UTC)
The IOM, by the way, begin their report by stating that ME and CFS are different diagnoses. However, their contract says they should write about 'ME/CFS', so that's what they do. Then, at the very end, they conclude that CFS is obsolete, to be replaced with SEID. Just CFS, not ME. The Jolly Bard (talk) 13:00, 27 June 2015 (UTC)
Unfortunately, on Wikipedia, we go with what the majority of sources state. If there are a minority of sources that say something else, then we present that, with appropriate notation that it is a minority view. We don't do conspiracy theories, not unless they're proven. I remember during the XMRV debacle, numerous patients turned on the very scientists trying to help them, and accused them of conspiracies and scheming against us, all because they said "we can't find proof of XMRV". Turned out, they weren't plotting against us, they were right. That was a big lesson for many of us, and one I took to heart and it's for those same reasons that everyone here is demanding strong evidence that ME and CFS are two different things before we do anything.
Just arguing a viewpoint without citing evidence is not sufficient. Cite specific quotes from specific medically-reliable sources, preferably with links, and you'll get the split you want. The ICC is a start, but on its own, it's not enough, because it's just one suggestion from one small group of people (i.e., also an argument from authority), and the ICC have never been validated as diagnostic criteria that I know of. The IOM Report is in much the same boat, though if it says what you say it does, then that would add support as well. Can you provide a link to the part you're talking about, where it separates SEID from ME, please, as all I saw were dozens of references to "ME/CFS (SEID)"—I never saw ME treated as a separate entity. Having said that, as mentioned earlier in this thread, when the ICD-11 comes out, that may be a much stronger support for the idea of splitting. It's not officially out yet, though, so we can't even begin to examine what it tells us at this point. Robin Hood  (talk) 15:26, 27 June 2015 (UTC)

The ICD-10-CM hasn't been implemented yet, but it was published in 2011. As for Wikipedia: no, we don't blindly go with what the majority of sources state. We follow the mainstream of reliable, authoritive and high-quality sources. Sources that merely state 'these terms are used interchangeably', without having investigated this, are not reliable, and certainly not with regard to the question: are they in fact synonymous. The Jolly Bard (talk) 17:20, 27 June 2015 (UTC)

The IOM report does not separate ME from SEID. It doesn't need to, since ME was never connected to SEID. What it does, is connect CFS to SEID, to the extent that they advise to replace CFS with SEID. Note: CFS and SEID are not synomymous either, regardless of how many sources will now claim that they are used interchangeably. The Jolly Bard (talk) 17:27, 27 June 2015 (UTC)

Studies into the pathological relationship (or lack thereof) between ME and CFS have not been done AFAIK, and will likely never happen. This is only logical, because there is no such relationship by definition, and why would anyone study something that doesn't exist. There do exist a few studies that look into which patients, ME or otherwise, would satisfy CFS criteria, if they weren't excluded. Often, ME patients have not been excluded from CFS research, even while all CFS criteria say they should be, and the same goes for patients with e.g. Lyme, fibromyalgia, Hashimoto, Ehlers-Danlos, and a whole bunch of others. The Jolly Bard (talk) 17:41, 27 June 2015 (UTC)

The literature that ís available on the issue at hand, is literature that discusses definitions or criteria in depth. There is not much, but what there is all points into the same direction: ME does not resemble CFS.

  • Hooper M (2010), “Magical Medicine: how to make a disease disappear”, University of Sunderland
  • Hyde BM (2007, updated in 2011), “The Nightingale Myalgic Encephalomyelitis (M.E.) Definition”, The Nightingale Research Foundation, Ottawa, Canada
  • Morris G, Maes M (2013), “Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions”, Neuro Endocrinol Lett 34(3):185-99, PMID: 23685416

Of course it all begins with the WHO. This article links CFS to G93.3 in the ICD-10, where ME is. But that is incorrect, CFS is not classified in the ICD-10. The ICD-10-CM has CFS in R53 (unexplained fatigue and malaise). The Jolly Bard (talk) 18:19, 27 June 2015 (UTC)

Okay, I'm done with this debate now. You're not even making sense anymore. To say that the IOM didn't separate ME from SEID because it was never connected to SEID when they use "ME/CFS (SEID)" throughout the report is just ridiculous. By Wikipedia's rules, the split won't happen until there's solid evidence that it should. End of story. Produce that evidence or stop wasting everyone's time. Robin Hood  (talk) 22:29, 27 June 2015 (UTC)
@The Jolly Bard: You are incorrect, the History of chronic fatigue syndrome article is correct when it states about ICD-10, "The alphabetic index contains other terms, such as chronic fatigue syndrome, to which WHO assigned the same code"(G93.3). here. Ward20 (talk) 09:40, 28 June 2015 (UTC)
Your childish attempt at bullying doesn't impress me. You don't comprehend. It's not a split. Nothing will be taken from this CFS article. The Jolly Bard (talk) 23:44, 27 June 2015 (UTC)
I comprehend fully. I have this disease myself and I follow various blogs and the medical research. I know what the level of evidence is for ME being a distinct illness from CFS, and it just isn't there yet. If you feel you have enough for an article on ME in its own right that doesn't duplicate what's here, and pulls from high-quality sources, then why don't you it in a sandbox and post a link to it for us all to read. Perhaps then, you'll convince people rather than relying on the bizarre they say it's ME but they mean it's not ME logic you did with the IOM report. Robin Hood  (talk) 01:13, 28 June 2015 (UTC)
It seems then that you have a conflict of interest with this topic, and are promoting your POV. Taking into account your point of view, I gather that you claim to suffer from CFS, rather than ME. Your lack of personal experience with ME is then likely to cloud your judgement here. The Jolly Bard (talk) 00:05, 2 July 2015 (UTC)
What I claim is to suffer from some disease of unknown etiology with little or no solid diagnostic criteria. I choose to call it CFS, others choose to call it ME, ME/CFS, or SEID. I fit every diagnostic criteria for any of those names that I have ever read, including CCC, ICC, and the proposed new SEID criteria. Your attempt to manufacture a conflict of interest by enforcing your point of view upon me is inappropriate and unappreciated. We're supposed to be patients fighting for our cause, for a solid understanding of what this disease or these diseases are—not patients pulling the rug out from under one another in an attempt to foist our own beliefs on everyone around us. I would appreciate it if you didn't make this kind of unsupported assertion again. The fact that I don't subscribe to your beliefs has no bearing on my diagnosis. Robin Hood  (talk) 01:50, 2 July 2015 (UTC)
Then you are at the wrong venue, because Wikipedia is not a place to fight for a cause. We're supposed - required - to be neutral (also, not all of us are CFS patients). Your belief that the terms are all equivalent is just that, a belief, based on your personal medical complaints and your personal interpretation of the criteria. In contrast, I base my call on the avialable literature. The Jolly Bard (talk) 02:15, 2 July 2015 (UTC)
Discussion moved to user's talk page as it violates WP:NPA and personal beliefs on either of our parts have no medical relevance. Robin Hood  (talk) 02:55, 2 July 2015 (UTC)

Again I will point out that it's odd to say the articles can't be split without evidence, yet there aren't any MEDRS sources that I'm aware of that provide evidence that they are the same to support a merged article. This then falls back on convention, but not universally applied convention. In the UK, the most official document on the subject, the NICE guidelines, uses the moniker 'CFS/ME'. However, there is this big fat caveat right in the beginning: "The CMO working group called for a consensus to be reached on terminology and definition, and while awaiting this, suggested that the composite term 'CFS/ME' is used and that it is considered as one condition or a spectrum of disease for the purpose of the report. This is the approach also adopted in this guideline." Their use of this term has no scientific backing. In absence of a scientific consensus, they unilaterally decided to combine them and thus 'CFS/ME' was born. The previous Oxford criteria makes exactly one mention of ME, only pointing out again this lack of consensus about the diseases being the same: "The principal lack of agreement concerns definition of the clinical syndrome to be studied. A number of clinical syndromes have been described, all apparently referring to similar groups of patients, but differing sufficiently to preclude comparison of published studies. The various names used include epidemic neuromyasthenial, idiopathic chronic fatigue and myalgia syndrome2, benign myalgic encephalomyelitis3, chronic infectious mononucleosis4, Royal Free disease5, postviral fatigue syndrome6, fibrositis-fibromyalgia7,8, and chronic fatigue syndrome9."

If we use the CDC as the official US source of information on this disease, which I think is fair, it's quite interesting to note that the term ME does not appear in any of the three clinical CFS definitions produced by them, nor does their website on the disease make any mention of it. While the IOM report was paid for by the US government and uses the ME/CFS moniker, the IOM is not a government organization and they likely just cribbed the term from the NIH. I'm unclear on the history of the NIH use of the ME/CFS moniker, but I imagine it probably was influenced by the Canadian consensus document as well as US patient advocates using the term, for better or for worse. Again, no scientific backing or consensus was provided for the combined use of the terms as one disease. Anal0gue (talk) 02:18, 28 June 2015 (UTC)

We don't disagree on that. There's no solid evidence that ME/CFS is a single disease and there's no solid evidence that ME and CFS are two (or more) different diseases. We don't know this because we have no firm etiology for the disease and the various biomarker studies over the years have come up with different numbers of subgroups within the population they studied (not to mention that, to my knowledge, nobody's ever attempted to replicate those studies). Similarly, the various diagnostic criteria produce different patient groups...but we don't know if those patient groups are broader/narrower groups with the same underlying illness or if they're different groups with overlapping, highly similar underlying illnesses. So no, nobody can prove that it's a single disease and should therefore be one page, but at the same time, given the vast number of sources that treat them as one and the same, I don't see how we can argue that they're different with any credibility. Despite appearances, it's not me you're arguing against, it's the person who comes along and proposes Myalgic encephalomyelitis for deletion. We need to be able to point at high-quality studies and say "yes, these are distinct, we have good reason to believe it, and here's the evidence that at least a significant minority of the medical community believes this".
We also need to be able to distinguish them clearly to resolve any debates that come up in terms of what material belongs on which page. In that vein, we need to define what it is that distinguishes "chronic fatigue" from "chronic fatigue syndrome" from "myalgic encephalomyelitis" and any other patient subgroups. Given the preponderance of studies that treat at least ME and CFS as one and the same (and a small few that even lump generalized chronic fatigue in there as well, just to confuse things), and given that nothing I'm aware defines any widely agreed on distinction between ME and CFS, I really don't see how we would be able to do that. If we can, then great, let's go for it. That's why I and others in this discussion are demanding evidence. If we can't provide that evidence, then we'll be right back to one page after a lot of wasted effort, because it will be only too easy to argue that everything treats them the same (or can't agree on the differences) and therefore they belong on the same page.
And I apologize if I lost my cool earlier, but on a personal level, I find accusations of conspiracies and claims that come from activist forums but have little or no backing evidence to be completely detrimental to our cause. The psychological proponents already think we're head-cases...let's not give them ammunition, shall we? Robin Hood  (talk) 03:05, 28 June 2015 (UTC)
I understand, and I agree the split needs to be supportable by approved evidence. I will continue to peruse the literature looking for this but as far as I've seen very few people other than Lenny Jason seem to give a shit about the distinction and the accuracy of the various clinical criteria. I have no accusations of conspiracies, I just can clearly see what impact it has by pushing everything to a CFS article. If this article is truly about ME/CFS, why are only CFS symptoms listed for example? Why not list ME symptoms here as well? Again, this is where I feel that people would start reverting edits made to add ME centric information which then makes it an article on CFS, not ME/CFS, and if the ME article can't be populated, then ME information just gets suppressed.
On a more productive note, I still don't think it's been addressed how the ICD-10-CM changes are going to be incorporated into this article. I'd love to hear what's proposed for that. What is the info box at the top going to say? Anal0gue (talk) 04:17, 28 June 2015 (UTC)
Wikipedia:MEDRS states how it should be done. A secondary source from a medical WP:RS will at some point describe how the ICD-10-CM changes the way doctors diagnose ME verses CFS. Then editors on Wikipedia form a consensus on how to incorporate the information (or not) from the secondary source into this article or any other article that is appropriate. It really is quite formulaic and will save a lot of talk page angst.
I suggested this before, but I will again. Find the WP:MEDRS secondary sources (and I know there are a few) that describe how different definitions describe different groups of patients. First put that information in the Clinical descriptions of chronic fatigue syndrome article. Once that is sorted out it will be much easier to determine what should go next in order of split, not split, rework this article, make new article, or whatever needs to be done. Believe me when I say that for a controversial article like this one, work together, compromise to form consensus, and stick to the guidelines that editors have deemed relevant over the years. If an editor tries to shortcut that to force their WP:POV onto an article it will not work here. If you don't believe me, read the talk page archives and see all the strife, endless arguing, and finally removal of editing privileges from the article that occurs when editors with any WP:POV try to force their truth into any article without consensus. Ward20 (talk) 09:24, 28 June 2015 (UTC)
@Anal0gue Your question regarding the info box was addressed back in March: https://en.wikipedia.org/wiki/Template_talk:Infobox_medical_condition#Confusion_of_ICD_with_ICD-CM It is inevitable that the same info box would appear on both 'split' articles if the split were to go ahead, because there is no separate ICD or ICD-CM(US) or any other iteration of any other national subsidiary to the ICD that could provide any other infobox data. This lack of separate info box is something else that millitates against separate ME and CFS articles. I strongly suggest that in addition to the wholly sensible direction suggested by Ward20 above, that any editor who wants to see separate WP articles for ME and CFS actually drafts these on their personal sandbox so that other editors can judge if such a move is even feasible, let alone within WP good practice. Personally I fail to see how applying MEDRS to separate ME and CFS articles would produce anything other than very close mirrors. Anyway, Analogue and Aspro the challenge is with you, if you want split articles -then set them up on your sandbox so the rest of us can judge whether there's any merit in carrying on with what looks like an increasingly sterile discussion. --In Vitro Infidelium (talk) 16:15, 28 June 2015 (UTC)
I'm having trouble extracting an answer to my question out of your link. Is the infobox supposed to be based on WHO ICD or US ICD clinical modification (CM), or both? Clearly, at present for the CFS article it seems to be based on both. That being the case, assuming this CFS article is truly a ME/CFS article, why isn't the ICD-9-CM code (323.9) for ME present? Why isn't the ICD-10-CM code (R53.82) for CFS present?
Can the CDC really not be used directly as a reliable source of information for an article? Clearly, based on their clinical modification of both ICD-9 and 10, the CDC has always maintained ME and CFS as separate diseases. They've made it even more clear now in the ICD-10-CM by making them explicitly exclusionary diagnoses. Anal0gue (talk) 18:54, 28 June 2015 (UTC)

──────────────────────────────────────────────────────────────────────────────────────────────────── You've been asked to provide a secondary source for these claims. I am not aware of a single other medical condition that is defined by the way it is classified in ICD. The arguments over ICD-10 on this talkpage alone have spanned kilobytes. Let's try again (and this goes for Anal0gue, The Jolly Bard and all others): provide a secondary source that states unequivocally that there are two separate conditions with different names. Even Carruthers et al argue that CFS is another name for ME. JFW | T@lk 20:31, 28 June 2015 (UTC)

I have provided two secondary (Hooper, Hyde) and one primary source (Maes) above. The CDC have, on more than one occasion, confirmed that they have always viewed ME and CFS as two different conditions. WHO representatives (particularly, dr. Jacob) have been quite clear on this as well. The Jolly Bard (talk) 20:37, 28 June 2015 (UTC)
@JFW If you're talking about the ICC then no, they don't argue that CFS is another name for ME. They state that that ME is also referred to as CFS in the literature. This doesn't mean they agree with this nor does it mean they reviewed evidence that they are the same thing.
I'd still like an answer about the ICD codes and the info box re: G93.3, 780.71, 323.9, and R53.82. Anal0gue (talk) 21:46, 28 June 2015 (UTC)
@Jolly; Hooper, Hyde[4][5] clearly do not meet WP:MEDRS standards. Maes[6] is actually a secondary source review article from a low impact medical journal. Please provide links to the CDC and Dr. Jacob assertions. Ward20 (talk) 22:23, 28 June 2015 (UTC)
@Analogue: The ICD-10 authority is not CDC it is the WHO. As far as I can tell the ICD-9 designation in the article should be ICD-9-CM which is established by The National Center for Health Statistics as a section of CDC. Yes there is conflicting information presented in the info box, that is just the way things are presently coded in the real world. It doesn't mean the article should be renamed because information on naming comes from a variety of sources, not only CDC codes. The ICD-9-CM codes should probably specify 780.71 and 323.9. IMO the ICD-10-CM code (R53.82) for CFS is not present because it will not be implemented until October 1st. Ward20 (talk) 22:23, 28 June 2015 (UTC)
Yes I'm aware that the WHO is in charge of the ICD-10, but the CDC is in charge of the ICD-9 and 10 CMs, and the ICD-9-CM code is listed in the infobox as ICD-9 which I believe is incorrect, CFS didn't even exist when the WHO ICD-9 came out. Again, is the info box supposed to contain WHO or US CM based codes? Anal0gue (talk) 22:40, 28 June 2015 (UTC)
I believe I agreed with you, "As far as I can tell the ICD-9 designation in the article should be ICD-9-CM" and "The ICD-9-CM codes should probably specify 780.71 and 323.9." As to your last question most disease articles I have seen have both current WHO and US CM based codes in the infobox. Ward20 (talk) 22:50, 28 June 2015 (UTC)
Yes, that's the ICD-9-CM.
The CFS infobox should read 'not classified' for the ICD-10. The ME infobox would currently read G93.3 (ICD-10) and 323.9 (ICD-9-CM), hence there is no overlap in codes. The ICD-10-CM, a publication of the NCHS, has ME in G93.3 and CFS as R53.82. Cheers, The Jolly Bard (talk) 22:54, 28 June 2015 (UTC)
That's not correct, CFS is in the WHO ICD-10, indexed to G93.3. This is where things are all screwed up. In the past someone convinced the WHO that ME and CFS are the same, yet the US CDC CMs have never reflected this aspect of the WHO ICD. Anal0gue (talk) 23:03, 28 June 2015 (UTC)
It's in the alphabetic list, but that doesn't classify it. The WHO does not consider ME and CFS the same at all (see below). The Jolly Bard (talk) 23:10, 28 June 2015 (UTC)
It's not in the tabular list, it's in the index along with Iceland disease etc., which all point to G93.3. Anal0gue (talk) 23:19, 28 June 2015 (UTC)
The alphabetic list is not a classification, nor a list of synonyms. It merely points the reader to a place to look. The Jolly Bard (talk) 23:32, 28 June 2015 (UTC)
@The Jolly Bard That's a good point. Do you have any official WHO statements regarding this aspect of the index? If you do then that means that the WHO does not officially consider CFS the same as ME, which would jive with the CDC ICD-CM. Anal0gue (talk) 01:19, 29 June 2015 (UTC)
@Anal0gue, Jolly, The Who alphabetical index "includes all terms classifiable to categories A00-T98 and Z00-Z99"[7] page 27. So yes, it does classify chronic fatigue syndrome to G93.3.Ward20 (talk) 02:59, 29 June 2015 (UTC)
No, it does not. Classifiable is not the same as classified. If it was classified, it would be in the table. The Jolly Bard (talk) 20:03, 29 June 2015 (UTC)
@Ward20 OK, so can we form a consensus and get the info box updated? For now it's accurate to say "ICD-9: 780.81, 323.9" and after October when the ICD-10-CM goes live, it should be updated to say "ICD-10: G93.3, R53.82", yes? Anal0gue (talk) 23:07, 28 June 2015 (UTC)
@Ward20, I don't see anything in WP:MEDRS that disqualifies Hooper and Hyde. The best-known CDC quote is this one which can be found in many places (unfortunately the CDC took down their ME page a couple of years ago): "Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. ... The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease;however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." Dr. Robert Jacob's quote is also quite insightful: "ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME." The Jolly Bard (talk) 23:10, 28 June 2015 (UTC)

Outdent:Anal0gue, I believe that should be the correct coding, but "ICD-9" should say "ICD-9-CM" to differentiate it from the WHO's "ICD-9". I am posting on the template talk page shortly so these changes may be implemented. Ward20 (talk) 23:20, 28 June 2015 (UTC)

@Jolly,WP:MEDRS[8] This includes the sources for Hooper, Hyde and Dr. Robert Jacob:
"Other sources
Reliable sources must be strong enough to support the claim. A lightweight source may sometimes be acceptable for a lightweight claim, but never for an extraordinary claim.
Press releases, newsletters, advocacy and self-help publications, blogs and other websites, and other sources contain a wide range of biomedical information ranging from factual to fraudulent, with a high percentage being of low quality. Conference abstracts present incomplete and unpublished data and undergo varying levels of review; they are often unreviewed and their initial conclusions may have changed dramatically if and when the data are finally ready for publication.[26] Consequently, they are usually poor sources and should always be used with caution, never used to support surprising claims, and carefully identified in the text as preliminary work. Peer-reviewed medical information resources such as WebMD, UpToDate, and eMedicine are usually acceptable sources for uncontroversial information; however, as much as possible Wikipedia articles should cite the more established literature directly."
If the CDC has taken the page down then It is no longer WP:verifiable they still stand behind the wording, as strong as it was. Please find secondary sources that meet WP:MEDRS as was previously asked by several editors.Ward20 (talk) 23:46, 28 June 2015 (UTC)
That's a long citation, with many considerations. What exactly do you refer to? Take into account that Hooper and Hyde are established experts in the field, which increases the weight of their non-pubmed publications. These aren't lightweights. The Jolly Bard (talk) 00:06, 29 June 2015 (UTC)
By the way, finding sources is not a task pinned to me personally. This is a project of co-operation. You can make an effort, too. The Jolly Bard (talk) 00:15, 29 June 2015 (UTC)
The CDC quote was part of a course so it remains verifiable, just not easily online (it's in their archives and everyone who followed the course can verify it, too). The Jolly Bard (talk) 00:57, 29 June 2015 (UTC)

Dr. Robert Jacob (WHO)[edit]

Here is a fuller quote from a published complaint to the Lancet, DOI:10.1016/S0140-6736(11)60096-2.

"On 4th February 2009, Dr Robert Jakob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO Headquarters, confirmed: “CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume I is the relevant volume for ME. ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD Index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. In its Guideline, NICE has used an ambiguous term. The WHO does not recognise the term ‘CFS/ME’ and refers to it as ‘unfortunate’ ”. "

Cheers, The Jolly Bard (talk) 00:51, 29 June 2015 (UTC)

Letters to the editor are not WP:MEDRS compliant either (not peer reviewed). Also, I don't believe the Lancet published this, a support group did. Ward20 (talk) 03:14, 29 June 2015 (UTC)
There are no peers to the WHO. But it doesn't need to be 'compliant'. It's a statement, and referenced on this talk page only in that capacity. The Jolly Bard (talk) 11:37, 29 June 2015 (UTC)

P2P ME/CFS: Advancing Research final publishing[edit]

Annals of Internal Medicine http://annals.org/article.aspx?articleid=2322801 and http://annals.org/article.aspx?articleid=2322804#Abstract --In Vitro Infidelium (talk) 10:05, 16 June 2015 (UTC)

Also http://annals.org/article.aspx?articleid=2322800 --In Vitro Infidelium (talk) 13:21, 16 June 2015 (UTC)

And a useful summary which might assist editors gleaning useful elements from the above: http://annals.org/article.aspx?articleid=2322808 --In Vitro Infidelium (talk) 13:25, 16 June 2015 (UTC)

Here are the full citations:
Komaroff AL.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness.
http://annals.org/article.aspx?articleID=2322808
Ann Intern Med. 16 June 2015;162:871-872. doi:10.7326/M15-0647
Haney E, Smith MB, McDonagh M, et al.
Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.
http://annals.org/article.aspx?articleID=2322800
Ann Intern Med. 2015;162:834-840. doi:10.7326/M15-0443
Smith MB, Haney E, McDonagh M, et al.
Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.
http://annals.org/article.aspx?articleID=2322801
Ann Intern Med. 2015;162:841-850. doi:10.7326/M15-0114
Green CR, Cowan P, Elk R, et al.
National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
http://annals.org/article.aspx?articleID=2322804
Ann Intern Med. 2015;162:860-865. doi:10.7326/M15-0338
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.
http://www.iom.edu/Reports/2015/ME-CFS.aspx
Washington, DC: National Academies Press, 2015.
--Nbauman (talk) 05:53, 20 June 2015 (UTC)

Further reading[edit]

Assuming there are no objections, I'd like to add the following titles to the further reading section in order to balance it out a bit:

  • Jenkins, Rachel; Mowbray, James F., ed. (1992). Post-viral Fatigue Syndrome (Myalgic Encephalomyelitis). John Wiley & Sons. ISBN 978-0471938798. 
  • Hyde, Byron M.; Goldstein, Jay A.; Levine, Paul H., ed. (1992). The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Nightingale Research Foundation. ISBN 978-0969566205. 
  • Ramsay, A. Melvin (1988). Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease. Gower Medical Publishing. ISBN 978-0906923993. 

Anal0gue (talk) 06:55, 29 June 2015 (UTC)

I strongly object to the addition of ME reading material to an article on CFS. The Jolly Bard (talk) 14:41, 29 June 2015 (UTC)
I agree with you and I would object to any ME material being on the CFS article at all if it were possible to have a separate ME article, but as you can see this isn't going to be easy to accomplish any time soon. I do feel like I'd be further adding to the confusion and messed up situation by adding these, but at the same time I don't want to see ME information suppressed by this ridiculous situation. Anal0gue (talk) 19:21, 29 June 2015 (UTC)

Case definition[edit]

Every single source that defines CFS stresses that it's a case definition, which seems a rather essential bit of information. Is there any particular reason why the article should not reflect the sources on this point? I find it rather rude to see my edits reverted without reasonable explanation. The Jolly Bard (talk) 14:23, 29 June 2015 (UTC)

That would make this an article about the case definition for CFS instead of the disease. Then you could simply make a new article about the case definition ME and achive your goal of separating CFS from ME. Please try to work with the other editors to build consensus to improve the article rather than impress you own POV into the article. Thanks. Ward20 (talk) 23:14, 29 June 2015 (UTC)
Please stay civil. I don't think you're qualified to read other people's minds. I have no intention to 'separate CFS from ME' at all. On the issue at hand, can you provide a reliable source that explains how CFS is more than a case definition? The Jolly Bard (talk) 23:33, 29 June 2015 (UTC)
Please, you have edited about a separate ME article at least 4 separate times [9], [10], [11], [12]. Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. The CDC defines it as a medical condition, the same as the Wikipedia article, not a case definition. Ward20 (talk) 01:48, 30 June 2015 (UTC)
Perhaps the idea is hard to grasp, when you are clinging to misinformation. An act of separation is not needed for an article on ME. That CDC page almost seems to have been copied from Wikipedia. It doesn't provide an explanation for that stance. The Jolly Bard (talk) 09:50, 30 June 2015 (UTC)

Names[edit]

The text currently gives the IOM report as a source, that gives a number of terms as alternative names to CFS. That is, however, not in the report. The IOM does give a list of suggested names, but it doesn't validate any of those. It also gives a small number of terms as 'used to describe this condition, however 'this condition' is not CFS but the combination of two conditions that is the report's focus:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world.

The article should reflect the sources and not include original research. Cheers, The Jolly Bard (talk) 14:38, 29 June 2015 (UTC)

Our CFS article currently also contains:

A 2001 review referenced myalgic encephalomyelitis symptoms in a 1959 article by Acheson, stating ME could be a distinct syndrome from CFS, but in literature the two terms are generally seen as synonymous.

I don't think a single source, which only mentions it in passing, suffices to support such a bold statement on synonymity. Moreover, the same authors say different in their 2002 article. The Jolly Bard (talk) 21:51, 29 June 2015 (UTC)

In the IOM report discussion on whether CFS should be renamed ME (page 60), they state "Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic

criteria for CFS", going on to conclude that "a diagnosis of CFS is not equivalent to a diagnosis of ME". This is a statement against synonymity as noted above. Anal0gue (talk) 20:17, 30 June 2015 (UTC)

Awareness day[edit]

The article mentions May 12 as awareness day for ME and CFS. This is not correct. It's an awareness day for ME, but not for CFS. Cheers, The Jolly Bard (talk) 14:59, 29 June 2015 (UTC)

While I wish that were true, it's not. From the May 12 site: "May 12 was chosen as International Awareness Day for Complex Immunological and Neurological Diseases (C.I.N.D.) since 1992. The diseases included in C.I.N.D., such as Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS), Chronic Lyme Disease (CLD), Fibromyalgia (FM), Gulf War Illness (GWI) and Multiple Chemical Sensitivity (MCS)." Anal0gue (talk) 19:23, 29 June 2015 (UTC)
That is just a random site created by a single (CFS) patient. It's wrong. May 12 as awareness day was introduced by the late Tom Hennessy, and he didn't include CFS. Funny enough, he is quoted correctly on the same site. The Jolly Bard (talk) 19:44, 29 June 2015 (UTC)

Review articles of case definitions[edit]

Since case definitions seem to be a hot topic I thought I would start a section to put WP:MEDRS review article sources for them. Any one that can add please do. Ward20 (talk) 19:22, 29 June 2015 (UTC)

Added IOM report. Chapter 3 contains a review of case definitions. Anal0gue (talk) 19:38, 29 June 2015 (UTC)
Added Twisk World J Methodol. 2015 June 26 Ward20 (talk) 19:54, 29 June 2015 (UTC)
Added Haney Annals of Internal Medicine 16 June 2015 Ward20 (talk) 00:57, 30 June 2015 (UTC)
Added Johnston Annals of Epidemiology, 6, June 2013 Ward20 (talk) 01:00, 30 June 2015 (UTC)
Added Twisk Front Physiol. 2014. Anal0gue (talk) 19:06, 1 July 2015 (UTC)

PVFS[edit]

This was copied over from my talk page, which is not the place to discuss article material:

Post-viral fatigue syndrome was once considered as an alternative name to ME, but not to CFS. The list of suggested names can be found on pages 58/59 of the IOM report. Cheers, The Jolly Bard (talk) 14:50, 29 June 2015 (UTC)

@The Jolly Bard:, Page 20 of cited source clearly states PVFS is an alternate term for CFS. As we go by sources and not what individual editors believe, it needs to stay. Yobol (talk) 19:28, 29 June 2015 (UTC)
The report is about ME and CFS combined, so your conclusion that this pertains to CFS is original research. It is also wrong. PVFS was once seen as a possible alternative diagnosis to ME, but this debate was dead when CFS came along. The Jolly Bard (talk) 19:37, 29 June 2015 (UTC)
Since ME is an alternate term for CFS, yours would seem to be the OR. Note that the text of the source states that "post-viral fatigue syndrome" is another term used to describe "ME, CFS, ME/CFS". Your objection is not supported by the source. Yobol (talk) 19:42, 29 June 2015 (UTC)
You are quoting incorrectly. The source doesn't say that. The IOM does not consider ME as an alternate term to CFS: "Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world." (my bold) The Jolly Bard (talk) 19:46, 29 June 2015 (UTC)
They also use the term ME/CFS, and they say "the committee concludes that the term 'myalgic encephalomyelitis' is inappropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in ME/CFS patients, and myalgia (muscle pain) is not a core symptom of the disease. ". So clearly they do consider CFS as an alternative term to ME, and they also consider ME to be an incorrect etiology. --sciencewatcher (talk) 19:53, 29 June 2015 (UTC)
The one does not lead to the other, but is an entirely different discussion. One that would belong in the ME article, and not here. The Jolly Bard (talk) 19:57, 29 June 2015 (UTC)
This is explained in the summary "Over a period of decades, clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms. The literature analysis conducted in support of this study took into consideration the variability in the definitions used in the studies reviewed. For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions." This is their rationale for the use of ME/CFS in the IOM report. The combined term is not an implication that they are the same. Anal0gue (talk) 20:01, 29 June 2015 (UTC)

Prevalence[edit]

The lead section currenly says with regard to prevalence:

  • Fatigue is a common symptom in many illnesses, but CFS is comparatively rare. Estimates of the number of people with the condition vary from 7 to 3,000 per 100,000 adults. About one million Americans and a quarter of a million people in the UK have CFS.

This is hopelessly inconsistent. 3% is far from rare, and if estimates vary that widely then how can we be so accurate about America and the UK. Cheers, The Jolly Bard (talk) 20:20, 29 June 2015 (UTC)

"Fatigue is a common symptom in many illnesses, but CFS is comparatively rare." This was used to draw the distinction between the number of people that experience fatigue symptoms in many illnesses and fatigue from exertion, from the number of people that experience fatigue from ME/CFS.full text ref Some quotes from ref, "The OPCS survey of psychiatric morbidity in the UK found that 27% of all adults (a third of all women and a fifth of all men) reported significant fatigue in the week before interview.", and "Of the respondents with chronic fatigue, only 1.4% attributed it to CFS." Perhaps it can be expressed more clearly.
The variation in estimates vary widely depending on the study population and definitions used. The "one million Americans and a quarter of a million people in the UK have CFS." are from government agency sources (CDC and NHS) that presumedly distill the data to the most reasonable estimates. Ward20 (talk) 22:24, 29 June 2015 (UTC)

Blood donation[edit]

While the XMRV situation brought up some interesting aspects and official responses from several governments, this is kind of moot now. I think it would be fair though to point out in this section that people with ME or CFS in general should not give blood. This is reflected, for example, in the United States Red Cross eligibility requirements where they state that blood donors must "Be in good general health and feeling well*" which would not represent most patients with ME or CFS. Their definition of healthy is "...that you feel well and can perform normal activities." which again does not apply to most patients by definition. Anal0gue (talk) 21:13, 29 June 2015 (UTC)

It seems to me that an update in this section is warranted. I specifically asked the Red Cross if there is a problem with ME/CFS patients donating blood and was told no. The article will need a WP:RS to talk about why a person should not donate. Ward20 (talk) 21:53, 29 June 2015 (UTC)
Asking about it is original research. There are official criteria. In Europe ME patients are not allowed to donate blood, and this was already so before XMRV. However, if you ask a random employee, chances are that they don't know and inform you incorrectly. The Jolly Bard (talk) 21:59, 29 June 2015 (UTC)
Would the Red Cross not be considered a reliable source? I don't think there is any ambiguity there in their eligibility requirements. To donate you must be healthy, people with chronic health conditions are by definition not healthy. Anal0gue (talk) 22:08, 29 June 2015 (UTC)
Yes, it is original research. WP:ORIGINALSYN "If one reliable source says A, and another reliable source says B, do not join A and B together to imply a conclusion C that is not mentioned by either of the sources." To donate you must be healthy from source A. People with chronic health conditions CFS/ME are by definition not healthy from source B. Therefore people with CFS can not donate is conclusion C. If you can find a source that states C and includes A + B that is not WP:OR. Ward20 (talk) 22:37, 29 June 2015 (UTC)
The same Red Cross page I took the quote from outlines their definition of healthy. It's all from source A. They are loose, common sense guidelines because otherwise they'd have 100 pages listing which conditions could or could not donate. Again I don't think their requirements are ambiguous at all. They further clarify that people with chronic health conditions (they use diabetes as an example) who are being treated to the point where they feel well would be eligible. This resulted from the XMRV scandal, but Ian Lipkin said the following: "For now, excluding people with the syndrome from blood donation is prudent, says Ian Lipkin, director of the Center for Infection and Immunity at the Columbia University Mailman School of Public Health, who is heading the National Institutes of Health–funded investigation into the connection between chronic fatigue syndrome and XMRV. “My sense is that the number of people with the syndrome likely to be sufficiently fit to make blood donations is so few that the Red Cross and AABB have decided for a variety of reasons, scientific and otherwise that it’s just not worth the risk.” " Anal0gue (talk) 23:27, 29 June 2015 (UTC)

How about something along the lines of "In accordance with American Red Cross guidelines, patients with ME or CFS who do not feel well enough to perform normal activities should avoid donating blood" Anal0gue (talk) 23:54, 29 June 2015 (UTC)

This still needs an up to date source that talks exclusively about CFS. The AABB and Red Cross did exclude CFS patients from giving blood after the XMRV scare. Things change over time. This is as close as I could come to their present exclusion criteria. Most chronic illnesses are acceptable as long as you feel well, the condition is under control, and you meet all other eligibility requirements. If you can find a better source great. It is probably out there. But you can't use "ME or CFS" unless the WP:RS does because that is your own WP:POV. I did find the NZ ban and Canadian ban. Ward20 (talk) 00:41, 30 June 2015 (UTC)
OK, how about "In accordance with American Red Cross eligibility requirements, individuals who do not feel well enough to perform normal activities should avoid donating blood."? Anal0gue (talk) 01:01, 30 June 2015 (UTC)
That wording still has a problem because the source doesn't specifically reference ME/CFS. It would be considered original research. An editor would have to conclude individuals who do not feel well enough to perform normal activities have ME/CFS. WP:OR Drawing conclusions not evident in the reference is original research...
After some thought, I believe this wording would not be OR. "The American Red Cross discourages persons with chronic illnesses which are not controlled or do not feel well from donating blood."[13] Ward20 (talk) 19:45, 1 July 2015 (UTC)
Seems reasonable to me. Anal0gue (talk) 20:34, 1 July 2015 (UTC)
Yes, looks fine. Other parts of the world are much stricter though. Patients with a neurological disorder are usually not allowed to give blood. Cheers, The Jolly Bard (talk) 21:30, 1 July 2015 (UTC)
Yes, I think any bans left in place (or bans in place before XMRV) should be noted specifically so that it is not assumed that because XMRV was debunked that it's now safe for ME or CFS patients to donate blood. Anal0gue (talk) 21:42, 1 July 2015 (UTC)

Research[edit]

The research section of the article is a bit anemic and awkward. The subsection on funding is fine, but could probably use some additional information regarding the research funding situation in the United States and/or other countries to provide some further perspective.

I'd like to delete the following as it doesn't add anything to the research section:

"The Oxford criteria (1991)[142] include CFS of unknown etiology and a subtype called post-infectious fatigue syndrome (PIFS). The presence of mental fatigue is necessary to fulfill the criteria and symptoms are accepted that may suggest a psychiatric disorder.[7]"

In its place, I think information regarding the ongoing large research efforts (Stanford, Columbia CII, OMF) should be added. Is anyone opposed to changes of this nature? Anal0gue (talk) 21:25, 29 June 2015 (UTC)

The problem with deleting the Oxford criteria is that is then eliminated from the article. The article should explain the Oxford criteria as it has a major role in a huge proportion of the studies. Ward20 (talk) 21:46, 29 June 2015 (UTC)
But it's a section on research, not research criteria. The same sentence above appears in the Clinical_descriptions_of_chronic_fatigue_syndrome article, where it belongs. If you talk about Oxford in this section then you need to talk about all other research criteria as well which doesn't make sense to do in this section of the article. Anal0gue (talk) 22:06, 29 June 2015 (UTC)
I agree that it's a section on research, not research criteria, and I objected when it was put there from the Notable definitions area. First post But consensus was to move it to research. I still believe it should be on the main page but not in research, unless all notable definitions are moved to Clinical_descriptions_of_chronic_fatigue_syndrome with a paragraph on the main page stating there are a number of definitions used, go to Clinical_descriptions_of_chronic_fatigue_syndrome for details. Ward20 (talk) 22:49, 29 June 2015 (UTC)
Sorry it just makes no sense in the context of the section it appears in. It says absolutely nothing about research and adds nothing to the section. It should either be moved back up to the definitions section, or deleted. I'm not sure it should even be considered notable at all still as the US NIH P2P process pointed out its problems and called for it to be retired. Again it's still prominently displayed in the clinical description article so it's not going anywhere. Anal0gue (talk) 23:42, 29 June 2015 (UTC)
Consensus can change. I agree that it doesn't belong in this section. Also, lately it's been called obsolete, and as such IMHO it needs no mention in the main article. The Jolly Bard (talk) 00:02, 30 June 2015 (UTC)
My opinion is to keep it somewhere on the main page because so many research papers use it, but to note that its use is being discouraged because it is inclusive of other conditions. Consensus groups and researchers should consider retiring the Oxford case definition because it differs from the other case definitions and is the least restrictive, probably including individuals with other overlapping conditions. I believe we should wait for other editors to give their opinions and ideas before making this change.Ward20 (talk) 00:55, 30 June 2015 (UTC)
It's unclear what reliable source has deemed the three (or four if the Oxford mention is moved back) listed definitions notable. Is there a secondary source somewhere that tallies how many papers use what criteria to determine which is notable or not? I think that the definition section should either a) remove the "notable" qualifier and include all well known criteria, or b) all should be removed from the main article as they are all listed in the Clinical_descriptions_of_chronic_fatigue_syndrome article. Anal0gue (talk) 01:18, 30 June 2015 (UTC)
I see reference 7 is provided for the "notable" part, but the abstract only mentions the CDC definition, not Oxford, CCC, or NICE guidelines. Anal0gue (talk) 01:35, 30 June 2015 (UTC)

Outdent: Yes reference 7 discusses the most used definitions right after the abstract. You may find the full text PDF by going to google scholar and searching for "The chronic fatigue syndrome--an update". There will be a PDF link on the right side of the page. I am not linking to it because I believe the material is behind a paywall and copyrighted. There are some abnormalities from the sourced material. The source includes the Australian definition too but that never got into the article by an oversight. Now days the the Australian definition is less used so I guess everyone said meh. The Nice guidelines are not mentioned in source 7, it has it's own primary source. The present version is not the same as when the article was edited with reference 7. Here is how the article was edited previously [14].

Thanks. I'm not sure that reference provides evidence for those being notable. It's just a list of some of the case definitions in use. It mentions that the CDC definition is the most widespread, but does not make similar claims about the Oxford, Canadian, or Australian criteria. If just being mentioned in a review makes them notable, I think we should update that section with the newest review, the IOM report. They analyzed Fukuda, NICE, CCC, and ICC. Those are probably the criteria that should appear as notable as of 2015. Anal0gue (talk) 19:42, 30 June 2015 (UTC)

Again, I think the Oxford bullet item should either be nuked or moved back up to a reworked definitions section. The sentence below it is good and can now be further expanded on using the IOM report as a source. There is some important discussion relating to this starting on the bottom of page 52 of the report and continuing to page 53. They note the problems with different studies operationalizing the criteria differently. More importantly, they note that a large percentage of healthy controls can meet the various criteria if not used in a certain way. This has serious implications for research. Anal0gue (talk) 19:57, 30 June 2015 (UTC)

Also I'd still like to hear if it would be appropriate for this section to note the large ongoing research efforts. Anal0gue (talk) 19:59, 30 June 2015 (UTC)

Yes to your last question, but it should be taken from a secondary source if at all possible, note that non medical info like this doesn't have to be WP:MEDRS but should be sourced from WP:RS (no blogs or support groups).
I agree the definitions should be reworked and agree with a lot of what has been said above, but would like to construct a table of definitions from the other reviews listed in section Review_articles_of_case_definitions along with the impact factor of the publication, and the number of cites by other articles. The IOM is a good review but it is very new and we should evaluate the quality and material of the other recent reviews also. I won't have enough time to work on this right now though. Ward20 (talk) 20:35, 30 June 2015 (UTC)
Re- Oxford, the current text is per edits https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&diff=prev&oldid=652864584 et seq , I made back in March, which were discussed on the talk page. The reason for separating Oxford is that CDC, NICE and CCC all appear (approriately)under Diagnosis, while Oxford was only ever intended (and used ?) as a Research definition. My preference is that the current Research heading be changed to Research Funding and the first four lines of text be deleted. To date research has been nugatory and there appear few if any secondary sources that support the creation of a balanced text on the scope, range and outcome of what research there has been. Perhaps gleanings from P2P and IOM could be the basis of an updatable onging research section but balance of what is included and what is left out would be a paramount consideration.
Definitions -case and otherwise Caution needs to be taken over terminology. The WP article "Case Definition starts out with this A case definition defines a case by placing limits on time, person and place.[3] Time criteria may include all cases of a disease identified from, for example, January 1, 2008 to March 1, 2008. Person criteria may include age, gender, ethnicity, and clinical characteristics such as symptoms (e.g. cough and fever) and the results of clinical tests (e.g. pneumonia on chest X-ray)." In contrast there is a strict epidemiological usage [15] "A case definition is set of uniform criteria used to define a disease for public health surveillance. Case definitions enable public health to classify and count cases consistently across reporting jurisdictions, and should not be used by healthcare providers to determine how to meet an individual patient’s health needs." "Clinical definition" by further contrast is literal in meaning - a definition that has clinical validity - I would suggest that is what CDC, NICE and CCC all amount to given their respective applications. Other 'definitions' which lack established clinical use i.e use within a broad range of health care settings, not just one or two clinics, would need to be distinguished from CDC etc.--In Vitro Infidelium (talk) 15:26, 1 July 2015 (UTC)
All CFS criteria are case definitions. Fukudu especially is quite explicit about this. Cheers, The Jolly Bard (talk) 16:24, 1 July 2015 (UTC)
@The Jolly Bard which doesn't help if 'case definition' has more than one or otherwise nuanced meanings and we have no MEDRS to say which meaning is attached to which quoted source. It may be obvious to you but unless the source defines the given term explicitly then one is in danger of compound class errors when lumping all the unexplicit usages together. The CDC is clear about the use and limits of 'case definitions', while the NICE guidlines http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations#/diagnosis make no reference to the term case definition which is not surprising given that the term rarely appears in UK clinical practice. For the purposes of this article the term case definition either requires adressing within the text or we avoid it - which to me makes the most sense. Diagnosis and Research are terms useful to the general reader, and that IMO is what we should use rather than introduce unnecessary ambiguity. --In Vitro Infidelium (talk) 17:12, 1 July 2015 (UTC)
You're right about Oxford being a research definition, so I understand why it was moved to the research section, there's just no context given around it being there. I think the sentence about different case definitions should actually remain and should be further expanded, again based on discussion in the IOM report (page 51) about heterogeneous groups created with different definitions which complicates research and the ability to compare findings across different studies.
I disagree that the section should be changed to being solely about research funding. Clearly there are several open areas of research that are of critical importance to the disease and should be noted. As Ward20 noted above, information about this does not strictly need to be MEDRS based. Anal0gue (talk) 19:19, 1 July 2015 (UTC)

Not a Newspaper[edit]

The Jolly Bard made a deletion which was then reverted by Sciencewatcher https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&type=revision&diff=669226253&oldid=669225267 and https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&diff=next&oldid=669227719 I think the deletion of this text = Some members of the patient community, who had viewed the XMRV findings as a source of hope for a possible cure, initially reacted negatively when they were called into question. One UK researcher reported verbal abuse after publishing an early paper indicating that the XMRV studies were flawed has merit. If XMRV had proved to have a connection to CFS, if the Nature magazine article had not been retracted, if there had been criminal proceedings which had linked a CFS patient or advocate with harrassment - then perhaps there would be reason to keep this in an article about a disease, as it is I don't see how this in anything other than 'old news' which was laways of tenuous relevance.

In a similar vein I find this in the controversy section to be unfit for purpose - A major divide exists over whether funding for research and treatment should focus on physiological, or psychological/psychosocial aspects of CFS. This division is especially great in Great Britain.ref name="pmid17535450" In 2011, it was reported by the BBC that this conflict had involved personal vilification and allegations of professional misconduct to professional societies and universities of researchers who were investigating possible psychiatric connections.ref name=BBCToday My view is that the controversies section should be deleted and any RS supported points about controversy moved to the diagnosis and funding sections. Any retained text should be structured to ensure that no implication of the involvement of identifiable CFS patients or advocates having acted illegally or inappropriately is made. --In Vitro Infidelium (talk) 16:42, 1 July 2015 (UTC)

I agree, and any points about controversy can be placed in appropriate sections where the various points can be presented in a balanced manner. There's already an entire article devoted to the controversies. I think the inclusion of the verbal abuse story is against NPOV. It gives undue weight to a single isolated incident and should be deleted. Anal0gue (talk) 21:34, 1 July 2015 (UTC)
I think the discussion of the nutters should remain, as it is a very important issue in CFS research and very notable. It might be worth moving that reference from the XMRV section to the controvery section though. See also the discussion on the Simon Wessely talk page. --sciencewatcher (talk) 22:32, 1 July 2015 (UTC)
Again, a single isolated incident involving a handful out of the millions and millions of patients with the disease worldwide is not notable nor is it an important issue in CFS research. That's an extremely bold claim to make with no evidence, and calling them nutters is also not a very neutral stance and seems inappropriate, even on a talk page. Anal0gue (talk) 23:09, 1 July 2015 (UTC)
The point is (and the *reason* I support keeping them) is because there have been many instances of this, and it affects many CFS researchers, forcing some to give up on CFS research (to the detriment of patients). They clearly are nutters, as no normal person would be pulling this kind of crap, and that's supported by all the references ("extremists", etc.). --sciencewatcher (talk) 23:38, 1 July 2015 (UTC)
If there were many instances, there should be a better source. In reality, however, the same incident, not supported by any evidence of wrongdoing, keeps being reiterated for decades already. The Jolly Bard (talk) 23:50, 1 July 2015 (UTC)
Well more reliable sources that you can provide documenting instances of this will be good support for keeping it. Otherwise, again, I don't think one report from one isolated incident is enough to justify keeping it in the article, especially given the bias it produces. Anal0gue (talk) 23:51, 1 July 2015 (UTC)
I'm not sure why you are both just talking about "one report" and "one incident". Have a look at the Observer article, and the Hawkes article in the BMJ (see refs in the Wessely article). That's 3 news reports, and numerous threats against multiple researchers. I'm not sure if you're deliberately trolling or just very misinformed... --sciencewatcher (talk) 00:24, 2 July 2015 (UTC)
It's just not relevant information in a medical article. If it's going to be mentioned at all, it belongs in the controversies or history article. There is a similar occurrence of this in AIDS history, and further some AIDS activists were actually found guilty of making threatening phone calls to media and health officials. There is zero mention of this in the WP main AIDS article. It's not relevant to the main topic at all and only serves to fuel further controversy. Anal0gue (talk) 00:40, 2 July 2015 (UTC)
Also, these articles are not reliable. Of all the accusations over the years, only one incident has ever surfaced: a letter that mr. Wessely interpreted in a manner that wasn't intended. That is simply not notable. Meanwhile, I have witnessed patients being threatened by physicians that believed Wikipedia. Such is the impact of your preference. --The Jolly Bard (talk) 00:50, 2 July 2015 (UTC)
Yes, it should be in the history or controversies article. Right now it is mentioned in the summary of the history article, but not in the history article itself. It should be the other way round, with perhaps a short mention in the summary section of the main article. Jolly Bard: you are engaging in WP:OR by saying "only one incident has ever surfaced", and the articles are most definitely reliable (please read WP:RS). We don't need to verify every shred of information in a newspaper article -- we just assume they aren't making random shit up, as long as it's a reputable source. --sciencewatcher (talk) 01:24, 2 July 2015 (UTC)
No, we do not assume that. We check, per WP:CONTEXTMATTERS. If a source, any source, makes outrageous claims without backing them up, we reject that source. The Jolly Bard (talk) 01:45, 2 July 2015 (UTC)