Talk:Clinical descriptions of ME/CFS

Title

Except for the Canadian criteria, which are criteria for ME/CFS rather than merely CFS, none of the CFS criteria are clinical criteria, even while they are now also used by clinicians; nor are they in fact 'descriptions'. I therefore propose to rename the page to 'Definitions of chronic fatigue syndrome' or perhaps simply 'Chronic fatigue syndrome criteria'. Guido den Broeder (talk, visit) 21:47, 24 November 2008 (UTC)

I disagree, the literature calls these diagnostic criteria, it does not matter what they are originaly meant to be they are now diagnostic clinical criteria that is what the literature says. I will give lots of examples when that is disagreed on. RetroS1mone talk 03:17, 25 November 2008 (UTC)

They are research diagnostics, and correctly used thus in literature, but not clinical diagnostics. Guido den Broeder (talk, visit) 10:11, 25 November 2008 (UTC)

Wyller VB 2007. "The US case definition of CFS (the CDC-definition) is most widespread in research and clinical practice." Just one example. RetroS1mone talk 22:49, 25 November 2008 (UTC)

An example of what? Guido den Broeder (talk, visit) 00:56, 26 November 2008 (UTC)

An example that contradicts how you say these are just research definitions, they are but htey are not just they are also clinical definitions. RetroS1mone talk 08:20, 26 November 2008 (UTC)

All it shows is that they are used in clinical practice, which is indeed so. It doesn't say that they are suitable for such use. To quote Fukuda: "We have developed a conceptual framework and a set of research guidelines for use in studies of the chronic fatigue syndrome." It's a working case definition; if you do use it in clinical practice, you should realize that you're only halfway the diagnostic process. Guido den Broeder (talk, visit) 19:31, 26 November 2008 (UTC)

I agree (with Mr. den Broeder) that the title is clearly inappropriate and should be changed to Definitions of CFS. None of the definitions, other than Canadian, are clinical definitions. This is a no-brainer, IMHO, and important. JustinReilly (talk) 02:44, 20 February 2010 (UTC)

Better source on Canadian definition

There is a book with the Canadian definition, that is a better source then the non medline J CFS, does some body have that?? Thx, RetroS1mone talk 23:15, 25 November 2008 (UTC)

You asked about the journal on the reliable sources noticeboard. I believe the answer was that Haworth publications are considered reliable, which I agree with. Guido den Broeder (talk, visit) 01:00, 26 November 2008 (UTC)

No it is a nonrs journal. RetroS1mone talk 07:37, 26 November 2008 (UTC)

We disagree, then. Do you have any arguments? Guido den Broeder (talk, visit) 10:50, 26 November 2008 (UTC)

I draw your attention to this RSN post. As stated by RS1 and the RSN, the JCFS should be used with caution, if at all. WLU (t) (c) ^{(rules - simple rules)} 20:30, 27 November 2008 (UTC)

Well, that goes for all sources, so that's nothing special. But OK, I looked. I hadn't seen that last comment yet. What I see there is a lot of speculation, largely incorrect, so I'm not overly impressed. Nonetheles, even this user didn't support RetroS1mone's contention. Guido den Broeder (talk, visit) 23:12, 27 November 2008 (UTC)

Certain sources, highly reliable ones, shouldn't be used with caution, they should be used to build the page. And it does support RS1's assertion that JCFS isn't reliable - clearly the RSN posting supports the idea that JCFS isn't reliable. It's quite clear. To make it more clear, the Journal of Chronic Fatigue Syndrome shouldn't be used to assert anything on the page of fact. At best it should be portrayed as the opinion of a minority. Were it a majority, it would be found and repeated in mainstream sources. What is special about the JCFS is that it shouldn't really appear in any section of the page except the history, perhaps social impact section. You may be unimpressed, but consensus is that the JCFS isn't reliable. We get independent opinions for this very reason - they're independent and therefore unbiased by previous opinion. WLU (t) (c) ^{(rules - simple rules)} 23:57, 27 November 2008 (UTC)

Two users who don't know the facts, with others opposing, don't a consensus make. I can't be bothered to list all that is wrong with the rest of your statement. Guido den Broeder (talk, visit) 11:20, 28 November 2008 (UTC)

Good, you don't have to, but please don't use the JCFS for anything substantive relating to the disease process. WLU (t) (c) ^{(rules - simple rules)} 12:10, 28 November 2008 (UTC)

I always judge each instance on its own merits. WP:RS is merely a guideline; articles in a highly rated journal can be unreliable, and articles in an unrated journal can be reliable. Guido den Broeder (talk, visit) 12:15, 28 November 2008 (UTC)

(unindent) Merely a guideline? Well, it is a guideline, but you would need to have very strong (sourced, not personal) arguments to prefer the article in the unrated journal above the article in the rated journal. If an article in a highly reputed source has not been retracted afterwards, or discussed as being unreliable by a number of following articles in equally reliable sources, then it is not our position to judge such article: we may personally disagree with everything in the article, but we should not remove it from an article based on our opinion, nor should we gave equal weight (if any) to an article in a less reliable or reputable source, even if we totally agree with it, unless the latter article has afterwards ben used as a positive reference by a number of articles in reputable sources. Just ignoring WP:RS when it suits you because it is only a guideline will not get you very far. And WP:V#Reliable sources is policy. Fram (talk) 13:24, 28 November 2008 (UTC)

Echoing - just because it's a guideline doesn't mean we ignore it freely. To become a guideline is an extensive process which requires broad support from the community - it's probably the second-highest level of WP:CONSENSUS required after policies. WP:NPOV is not a guideline, and it requires us to report on the basis of prominence and adherence within the appropriate scholarly community. Accordingly, a low-reliability journal is not expected to represent the same degree of scholarly support as a highly respected, highly reliable, independantly peer-reviewed publication. This requires a certain degree of editorial judgement, but ultimately for explaining disease processes, if the JCFS is contradicted by anything in a more reliable source, it's pretty much not a question of which takes precedence. To be clear, it would not be the JCFS. It has its very limited place, but would have to be judged on a case-by-case basis. WLU (t) (c) ^{(rules - simple rules)} 15:43, 28 November 2008 (UTC)

Regarding its current use, to justify who published the 2003 Canadian guidelines, that seems OK. Regarding the recommendation by NICE to not use the Canadian guidelines, that is not supported by anything directly linked to in the CG53 page, but it's possible that it's in one of the myriad documents linked to on the page. Perhaps this one, page 152, is the intended acutal source? If I had to guess the comment appears to be based on the opinions of the National Collaborating Centre for Primary Care (note that the New Zealand Guidelines Group has a different opinion). If it's not this document, the source of the statement should be made clearer because right now the statement that the NHS discourages the use of the C2003 guidelines fails verification (and I have reservations about using page 152 of the full guidance document to source the statement). Irrespective, the current use of the JCFS is OK in my opinion. WLU (t) (c) ^{(rules - simple rules)} 15:56, 28 November 2008 (UTC)

Where is the original citation for the Canadian Consensus Document? Right now we're linking to the JCFS and Carruthers' overview document - we should be citing the actual document. Where was it published? Found it. Did Health Canada ever release it officially? Has JAMA ever published an article that used the Canadian definition as part of its methodology? I can't find an official version, just patient groups, which suggests it's undue weight to suggest it's an accepted definition in the medical commmunity. Why can't I find a link to the acutal document, why am I just getting referrals to the overviews? WLU (t) (c) ^{(rules - simple rules)} 16:48, 28 November 2008 (UTC)

When you look in the document you'll see it was published in the journal of chronic fatigue syndrome and is available here. It doesn't seem to be in pubmed for some reason. --sciencewatcher (talk) 18:46, 28 November 2008 (UTC)

Which brings me back to an earlier point - JCFS isn't a very reliable source and it's uncertain how much weight it carries in the mainstream medical community. Google scholar turns up 83 citations, some of which are very reliable journals, but you can't see if they're using or denigrating the definition. Oh, for full-text access... In any case, I think my problem was the URL linking to the overview rather than to the article itself, so I've corrected that and replaced the section. My concerns still stand about how reliable it is. The Fukuda article gets 1600 "cited by" from google scholar, Holmes by 957, Oxford by 425. Pubmed has a page for it (you have to search, the url contains a [ and it won't let me link to it) but isn't actually indexed, and in fact was discontinued by Haworth Press. My guess would be for concerns similar to what was discussed on the RSN - simply not reliable enough, the peer review wasn't strict enough. WLU (t) (c) ^{(rules - simple rules)} 19:17, 28 November 2008 (UTC)

The reason is that the new owner wasn't interested commercially in the title. A very sad affair. The great advantage of this journal was that a panel of on-topic experts was immediately available to look at the submissions, and one could get published a lot faster than normally. Guido den Broeder (talk, visit) 19:32, 28 November 2008 (UTC)

There are plenty of articles on CFS in otherwise reliable journals that are unreliable and full of bald illogical, heavily biased and false statements. The determination of an article or statement's worth is best judged on an individual basis although, of course, the journal's overall reputation is a factor in any case by case determination, IMHO. JustinReilly (talk) 03:06, 20 February 2010 (UTC)

NICE

Please note that the NICE criteria have been criticized by patient organizations all over the world, not just by 'one organization in the UK'. Guido den Broeder (talk, visit) 01:22, 26 November 2008 (UTC)

Guido that is fine when you have independent reliable sources for it it can go in. Patient advocacy internet groups are not medrs, I am sorry. RetroS1mone talk 07:38, 26 November 2008 (UTC)

Let's first see that it is true and then find the best way to keep the article accurate. A quick dig gives:

Primary sources:

• Invest in ME (2006), "Response to the NICE Guidelines for Clinical Practice" [1]
• Williams M (2006), "Klimas, Wessely and NICE: Redefining CBT?", Action for ME [2], see also [3] (2008)
• Den Broeder G (2007), "NICE Guideline", Lees ME (3):32-35, ME/CVS Vereniging (in Dutch) [4]

A secondary source:

• Matthew Hogg (2007), "NICE guidelines for chronic fatigue syndrome miss the mark", News - Chronic Fatigue Syndrome, 22 November 2007 [5]

See also the official website for the court case against NICE: [6] Guido den Broeder (talk, visit) 19:29, 26 November 2008 (UTC)

Guido it is a medical article. Internet sites of patient advocates are not medrs. Med articles base on peer review sources, prefer secondary over primary. I say again, you and other activists should start an article "Patient view s of ME/CFS" or similar article, there you do not need medrs, you still need rs and notability tho. RetroS1mone talk 03:52, 27 November 2008 (UTC)

Wikipedia is not a medical encyclopedia, nor are articles on medical topics 'medical articles'. The above proves that the current text is inaccurate; we should now think of how to rectify that. Guido den Broeder (talk, visit) 12:04, 27 November 2008 (UTC)

These sources can't prove that the current text is inaccurate; at best if they were highly notable and respected patient advocacy statements, they could say that patient groups object. As is, the Hogg article comes closest and perhaps could be used to support the patients' objections. That would very much depend on whether it could be determined to speak for a significant minority or majority of patients. Hogg is the owner of the environmental illness page on which the article is published, making it self-published. There's a minority place for the patients' position, but the sources have to be appropriate. Did the Journal of Chronic Fatigue Syndrome publish anything to represent a criticism of the NICE guidelines from the patients' perspective? WLU (t) (c) ^{(rules - simple rules)} 19:37, 27 November 2008 (UTC)

tangent discussion hidden

That's on three pages simultaneously that you apply the same tactics. Please stop suggesting that I have another purpose than what I am saying, and then objecting to that imagined purpose.

I am not suggesting to conclude that patients are right in their objections, only that more than one patient organization has objections. And, by the way, patients are not a minority, there are a lot more patients than doctors. Guido den Broeder (talk, visit) 19:43, 27 November 2008 (UTC)

I'm not using a tactic. I'm pointing to the policies and guideline that govern content on wikipedia, highlighting the areas I see problematic and when possible, illustrating how the pages could move forward or how your suggestions could fruitfully be incorporated. In some cases, they can not, and I make that point as well. Generally your responses raise more flags and worries, or lead me to believe your interpretation of the P&G is incorrect. You could think of it as me using the same "tactics", I see it as correcting the same misunderstanding of policy across multiple pages. Currently that misunderstanding appears to be that we are obliged to report every single opinion, or that the opinion of the presented organizations, people or sources represent a sufficiently notable or substantial minority position that they should be included in the mainspace page. I believe this to be incorrect. This isn't a tactic, it's an application of the policies and guidelines that govern our content. I think you'll find it quite mainstream. My overall concern is that you'll see silence as consensus and change the main page inappropriately. WLU (t) (c) ^{(rules - simple rules)} 20:12, 27 November 2008 (UTC)

And there you go repeating the exact same trick. "I believe this to be incorrect". Great, but I didn't say any of that. Do you enjoy spending your days in this manner? When was the last time that you did something constructive? Guido den Broeder (talk, visit) 22:43, 27 November 2008 (UTC)

I do that because I do not pretend my judgements are absolute, they are opinion. I cite policies so the sources of my opinions are obvious. It's not a trick. The constructive part is when I suggest other ways of integrating opinions - seeking sources generally. But if you have accepted that the changes should not be made, based on these sources, then I'm done here. WLU (t) (c) ^{(rules - simple rules)} 23:51, 27 November 2008 (UTC)

That's not a good reason, WLU. If someone makes a statement, you can criticize that statement and cite policies to your heart's content. But please don't fulminate against statements that were not actually made. That is rude and disruptive. Guido den Broeder (talk, visit) 00:09, 28 November 2008 (UTC)

It's hardly fulminating since I give a pretty detailed, policy and guideline-based rationale in each comment. I'm not sounding off random or uninformed opinions, since in addition to providing policies and guidelines I'm also basing it on my previous experience with other editors in general, and you in specific. In multiple cases, multiple editors and admins have disagreed with your interpretations of policies, and you've even been blocked based on this. Even now you're under an editing restriction for 3RR reports supported by multiple admins. Anticipating future problems is hardly unreasonable. WLU (t) (c) ^{(rules - simple rules)} 00:24, 28 November 2008 (UTC)

The problem is that you work that into every comment. Stop doing that and focus on the topic at hand, and we'll get along much better, and admins won't need to form such opinions in the first place. Guido den Broeder (talk, visit) 00:33, 28 November 2008 (UTC)

That would be difficult to do since it is a systemic mistake - I make the same comment because I see the same errors. Were the errors to stop appearing, I wouldn't have to repeat myself. WLU (t) (c) ^{(rules - simple rules)} 00:41, 28 November 2008 (UTC)

That's not what you do. You comment on imaginary statements, instead of my actual statements. Once again: please stop. You are causing far more disruption than I ever could. Guido den Broeder (talk, visit) 01:04, 28 November 2008 (UTC)

What about the hundreds of pages of "stakeholder comments" (including criticisms) leveled towards the NICE guidelines during the process of their creation from a wide range of sources, not just "advocacy groups"? NICE didn't respond to all these comments with actual changes to the guidelines, which suggest they still stand. - Tekaphor (TALK) 03:05, 2 December 2008 (UTC)

Integrating stakeholder comments is difficult - it's normally a matter of editorial judgement over what sources would be considered sufficiently reliable to represent the patient groups. The normal venues of patients - web fora, blogs, newsletters, generally are not considered sufficient, and they don't usually publish in peer-reviewed journals. Also an issue is how to summarize those hundreds of pages of comments without engaging in original research or a synthesis. If there were a single document that comprehensively lists all the issues raised by patients, or at least the ones that have substantial consensus and consistency across groups, we could cite that. But I don't know if it exists, or where to find it. Is there a summary document (or several) that you are aware of? From my understanding, pretty much all CFS criteria are controversial among CFS patients, so a section on patient reactions is valid. It's a matter of finding and sourcing that is the issue. WLU (t) (c) ^{(rules - simple rules)} 13:00, 2 December 2008

Thank you, WLU for these helpful explanations. It is difficult to get the patients' perspective represented in general, but especially here on Wikipedia and it often is or seems to be excluded "on a technicality." Remember Hardcastle & McCormack? they went after the crooks who got off on a technicality. We rooted for H & M to right this wrong because getting of on a technicality offends our basic notion of Justice. The Wessely school is able to game the system to get misinformation into and enshrined in the system while excluding the truth on technicalities. Do extremely disabled laypeople with brain fog have the resources to find out what is wrong with them and why exactly they are being screwed over and prove it with proper methodology and get it published in a medRS? No and so the well funded and protected authors are able to perpetuate their scam. More on point- patients don't have a problem with every definition- we love the Canadian definition; i have never heard anyone give it anything but praise- this is because it accurately describes the disease and dispels the illusion of chaos/random symptom lists. JustinReilly (talk) 03:32, 20 February 2010 (UTC)

I agree with Guido that the patient perspective is not the minority. There are 17 million patients (conservatively) worldwide + experienced clinicians + research scientists and academics versus a very small handful of psychiatrists who just write the same unfounded thing over and over again and cite each other to 'support' it- that's not a majority view. —Preceding unsigned comment added by Justito (talk • contribs) 03:40, 20 February 2010 (UTC)

The purpose of the Canadian-2003 consensus document

On the main CFS wiki-page under the "Classification" section, the text claims that this document (Canadian-2003) was developed to "exclude psychiatric cases". Although this is a massive oversimplification of why it was developed, the reference to this third-party opinion is reliable and isn't really a problem in the right context. After all, a study by L Jason et al provides evidence for the notion that the Canadian-2003 criteria tends to select a group of patients with less psychiatric comorbidity. However, what about the consensus document's actual authors' statements about its purpose and why it was developed?

The full version [7] of the Canadian-2003 consensus document ("Clinical Working Case Definition, Diagnostic and Treatment Protocols") itself states the following on page 10:

• "The objective was to provide a flexible conceptual framework for clinical diagnoses that would be inclusive enough to be useful to clinicians who are dealing with the unique symptomatic expression of individual patients and the unique context within which their illness arises. The panel felt there was a need for the criteria to encompass more symptoms in order to reflect ME/CFS as a distinct entity and distinguish it from other clinical entities that have overlapping symptoms. As fatigue is an integral part of many illnesses, the panel concurred that more of the prominent symptoms should be compulsory."
• "Our strategy was to group symptoms together which share a common region of pathogenesis, thus enhancing clarity and providing a focus to the clinical encounter. The inclusion of more of the potential spectrum of symptomatology in the clinical definition should allow a more adequate expression of the actual symptoms of any given patient’s pathogenesis. We hope that the clinical working case definition will encourage a consideration of the ongoing interrelationships of each patient’s symptoms and their coherence into a syndrome of related symptoms sharing a complex pathogenesis rather than presenting a “laundry list” of seemingly unrelated symptoms. We believe this will sharpen the distinction between ME/CFS and other medical conditions that may be confused with it in the absence of a definite laboratory test for ME/CFS."

Furthermore, the lead author himself (B M Carruthers) had a review published in the Journal of Clinical Pathology (2007), titled "Definitions and aetiology of myalgic encephalomyelitis: how the Canadian consensus clinical definition of myalgic encephalomyelitis works" (free for registered users: [8]). There he further discusses the related issues. He then states that the consensus document was "...influenced by the clinical method of Sydenham,[15] which is to provide a fuller and richer framework to fit the patient’s illness experience into a framework that is specific and complete enough to match the patient’s experience, yet consonant with the large body of public and confirmed results that have been obtained by the research activity stimulated by earlier definitions." He also states that "The problem of cultivating a holistic view without adequately structuring the field with a proper clinical entity can lead to great confusions of relevance, where contextual and syndromal features are confounded, with no way of clinically quantifying their relative effects."

So as you can see, it was developed for a number of reasons, one of them being to better distinguish ME/CFS from other medical disorders (including psychiatric disorders). Excluding "primary" psychiatric disorders is a requirement for several definitions of CFS, although perhaps a few others (ie Oxford-1991 and NICE-2007) are more relaxed. On this sub-page ("Clinical descriptions of chronic fatigue syndrome"), about the Canadian-2003 document, it states that NICE guidelines "discourages use of this 'stringent' definition, challenging that the biology is not yet recognized and is thus judged as too restrictive". The debate about "relaxed" vs "strict" criteria is central to CFS in general, so perhaps this debate deserves a mention somewhere too, using a more specific secondary source. - Tekaphor (TALK) 08:18, 7 June 2009 (UTC)

I searched through the NICE guidelines[9] and did not find verification of the material, "The National Institute for Health and Clinical Excellence (NICE) in England and Wales discourages use of this "stringent" definition, challenging that the biology is not yet recognized and is thus judged as too restrictive." One table (pg. 152) said three NCC-PC reviewers didn't recommend the Canadian definition for reasons other than what is stated above. The table also had offsetting positive comments on rigour from NZGG. I replaced the wording with verifiable text[10] and RetroSimone reverted me[11] Ward20 (talk) 08:46, 7 June 2009 (UTC)

Some of the text appears to be verifiable: ...

• Page 146 says "The 2003 Canadian definition[11] is more stringent and was developed by an international clinical CFS team."
• Page 169 says "The Gibson Inquiry[2] recently reviewed diagnostic criteria and concluded that the Canadian criteria[11] were a useful contribution to defining the clinical condition of CFS/ME. They are more detailed than the Oxford criteria[27], for example. However, since the cause or causes of CFS/ME are unknown, we cannot be sure that the proposed criteria do accurately identify people who have CFS/ME. It is possible that diagnostic criteria that delineate a particular set of symptoms wrongly exclude patients with early disease or with minor disability, when such patients might benefit from early intervention and avoid progression to severe or prolonged disability. As the Gibson Inquiry made clear, research is required into the biological basis of CFS/ME, but until that research has been completed the clinician and the patient need practical guidance."

The Canadian-2003 document does suggest the need to respect some biological findings; "The Biological Pathology of ME/CFS Must Be Respected and Reflected in the Program" and "To ignore the demonstrated biological pathology of this illness, to disregard the patient’s autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment."

However, the structure of the re-interpreted sentence in the CFS wiki-article may be partly inaccurate: (1) it implies that the NICE guidelines judge the Canadian2003 document as "too restrictive" because ("thus") NICE challenge the notion of recognized biology as (allegedly) claimed by Canadian-2003, but the only mention about "biology" in the entire NICE guidelines is the part about needing more biological research, and it never says that the Canadian-2003 document claims that the biology is "recognized"; (2) if anything, the NICE guidelines view the Canadian-2003 document as too restrictive because of the "stringent" diagnostic criteria and lack of "practical guidance"; (3) the Canadian-2003 document doesn't claim to know the definite cause(s) of CFS, it just discusses the research into pathophysiology and stresses that this should not be ignored when managing patients.

_Tekaphor (TALK) 03:14, 10 June 2009 (UTC)

I made an edit to the Canadian-2003 consensus definition that concerns discussions in this section. I would welcome a review of the changes and any improvements considering there were previous extensive discussions. Ward20 (talk) 06:06, 9 January 2010 (UTC)

I am not quite sure about the wording, "An important difference is the Canadian definition excludes patients with symptoms of mental illness." I have not seen the full-text of Wyller 2007 (PMID 17419822), is that what it says? It just seems a little odd, because cohorts meeting Canadian-2003 criteria tend to have lower psychiatric comorbidity rather than having "no symptoms of mental illness", if that makes sense. - Tekaphor (TALK) 04:21, 10 January 2010 (UTC)

That's almost exactly what it says. It would seem Wyller uses the term mental illness in place of the term (primary psychiatric disorders) in the Canadian definition. I am not sure what psychiatric comorbidity means in CFS studies. Ward20 (talk) 07:38, 10 January 2010 (UTC)

OK, thanks. - Tekaphor (TALK) 10:36, 10 January 2010 (UTC)

It seems to me the reason that the Canadian Definition is not cited more is that it is the clinical definition. most papers are original research- where they would use a research definition. It is the official Canadian Government definition and the only clinical definition. It was drafted by a who's who of prominent clinicians, some of whom are also top researchers, who had by the time of publication treated 20,000 patients. It is not unreliable. JustinReilly (talk) 03:06, 20 February 2010 (UTC)

Moved here to current discussion Sam Weller (talk) 16:20, 23 February 2010 (UTC)

Nowhwere in the CCCD(http://www.cfids-cab.org/MESA/ccpccd.pdf) does it exclude mental illness. Which, of course is a no-brainer, because it is a somatic illness, psychological issues don't provide immunity to somatic diseases. 85.229.112.16 (talk) 14:04, 16 March 2011 (UTC)

(←) Actually, it does. "Exclusions: ... primary psychiatric disorders". – RobinHood70 ^talk 18:48, 16 March 2011 (UTC)

Jason et al published a systemic review of the CDC vs Canadian definitions and found the Canadian definition produced less false positives, under Wikipedia rules that study would be a reliable secondary source and it' findings would seem to be an useful inclusion on this page. Also given that NICE themselves produce guidelines, they would seem to be a 'less independant' source than Jason et al. Your thoughts? — Preceding unsigned comment added by 91.85.32.104 (talk) 22:43, 19 May 2014 (UTC)

Oxford 1991 definition

The Oxford Definition of CFS is severe, disabling physical and mental fatigue of six months duration not caused by established organic disease, bipolar disorder, drug abuse, an eating disorder or schizophrenia. I would like to change the section to say just this since it is clearer and more concise. (It is important that this be clear because the Oxford definition was formulated by and underlies the psychosocial school of CFS etiology.) Thank you. JustinReilly (talk) 02:30, 20 February 2010 (UTC)

Now that you mention it, the Oxford Definition is pretty sparse. We can't make too much of it because it's not the most used definition according to the literature but it could use some expansion in my opinion. I would think it should have as least as much weight as the NICE guidelines which seem to have too much weight. Ward20 (talk) 02:48, 20 February 2010 (UTC)

ICC - new criteria that's been getting some attention

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

I started adding a section, but don't really know enough about how I'm meant to format, cite things... and don't know much about the criteria either.

Flatronal (talk) 17:11, 6 August 2011 (UTC)

We should probably wait to see if it gets used or cited. --sciencewatcher (talk) 17:44, 6 August 2011 (UTC)

Agreed. So far as I know, these are proposed criteria...it remains to be seen if they're accepted by the medical community. Also, I remember reading that this was a preliminary release, pending a final version later this year. Whether that just means it's an epub ahead of print or whether it's a draft that may change before final release, I don't know. If it's the latter, then obviously we shouldn't mention it at least until it's been released formally. Overall, it's getting good "reviews" in various forums and the like, but some have pointed out a few shortcomings in it, which may mean there could be changes if this isn't it's final form, and we don't want to mislead people. – RobinHood70 ^talk 19:15, 6 August 2011 (UTC)

I added it anyway. If anything it is a strong statement from 26 international authors on the issue of ME vs CFS. - Tekaphor (TALK) 02:27, 9 December 2011 (UTC)

But it doesn't have a single citation or anyone actually using it. Also it seems to be a WP:WEIGHT violation because it goes against the main body of science which says that ME=CFS and ME is not a valid etiology. (Also if you actually read the ICC you'll see pretty plainly that they don't actually show that ME is valid, but that is my WP:OR). The main point is the lack of citations and the fact that this seems to be WP:FRINGE. As for the researchers, yes there are some top notch researchers with their names to this paper, but also a few loons (I won't give names, but you know who I mean). --sciencewatcher (talk) 15:31, 9 December 2011 (UTC)

Actually, if you look at the link at the top of the section, it does have "a single citation", to be precise...at least as of this writing. As there were a number of people involved in the ICC, I wouldn't dismiss it just because one or two of the contributors are less well respected. I don't think it qualifies as fringe for the simple reason that it really builds on a lot of existing material without presenting any terribly radical new ideas. Yes, ME and CFS are separated in the ICC's recommendation, but that's hardly a new idea. ME existed before CFS came into popular usage, and many people have suggested that they should be separated once again. This is just the latest in a series of such suggestions. Regardless of that, though, I agree that at this point, there could be a weight issue. The ICC are suggested criteria only, and until we see that they're actually in use, they probably shouldn't get more than a very small entry. Speaking as part of the patient community, I know how much we'd like some good, neurologically based criteria to be in widespread use, but we're kind of jumping the gun by presenting the ICC on an equal footing with those that are currently in widespread use. – RobinHood70 ^talk 19:18, 9 December 2011 (UTC)

I was using google scholar and it didn't show any citations as far as I could see. If it has to be added, I think it should be a short sentence so as not to give too much weight. The main issue is that they haven't actually shown that ME is valid etiology...as we point out in the alternative names article, even Acheson admitted that ME "does not always cause muscle pain, and may not cause inflammation of the central nervous system". In the ICC guidelines they don't actually give any evidence for the "ME" etiology, they simply do a lot of hand waving. Some patients just like the term ME because it sounds more serious, and unfortunately ICC are just going along with this. --sciencewatcher (talk) 21:30, 9 December 2011 (UTC)

Posted a related comment here on the main talkpage.[12] Even if it isn't used as a criteria and has almost no citations and may not belong in that section yet, it is a position statement on the issue of ME vs CFS from an international group of 26 authors, many of them well-known in the field, so it belongs somewhere. I was aware of possible weight issues, it just took that much text to summarise the main points. Also, weight seems relative to the size of other sections, for example, it isn't my fault that the other sections are sparser than should be. Google Scholar citations seems to be a common argument, so please tell me the magical threshold number of citations before a source is arbitrarily allowed, number of citations is only a vague indicator of how often a paper is cited, it does not tell us why it has been cited. Am I supposed to believe that these authors opinions should only have a short sentence at most while it is OK for a Showalter who has no medical experience to get a large paragraph about her questionable unproven claims of CFS as primary hypochondria? OK, different sections, but still.

Wikipedia is about verifiability not truth, so it doesn't matter whether they have "shown that ME is valid etiology", they presented their reasoning and the main issue is about diagnostic criteria. I conditionally view ME=CFS depending on how these are defined, ME isn't the best name or disease model, but CFS is absurd. What "main body of science which says that ME=CFS"? Hardly anyone has actually done research on the issue of ME vs CFS, all we have is the widespread assumption that ME=CFS, unless you consider a popular opinion among scientists swimming in the medical backwaters to be established "science"? On the CDC website, the organization which gave birth to "CFS", there is training material which plainly states that ME and CFS are incorrectly used interchangeably, but no where AFAIK do they state as plainly that ME=CFS, in general they seem strangely quiet on the issue. Peter White also believes that ME as originally defined is not the same condition as CFS but has since become a colloquialism for CFS, more fringe views eh? - Tekaphor (TALK) 02:06, 12 December 2011 (UTC)

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Rule out conditions

It was suggested to me that these might be better in this page, although I'm not sure where.

other conditions for evaluation - CDC

1. hypothyroidism and Hashimoto's disease, diabetes mellitis, anemia, anorexia, medication side effects, adtenal insufficiency, Cushing's symdrome
2. rhematological disorders including Lupus, EDS (hypermobile type), Sjögren's Syndrome, rheumatoid arthritis plus a few others
3. Marfan syndrome, Stickler's syndrome and other heritable connective tissue diseases
4. celiac disease
5. multiple sclerosis
6. immune disorders eg HIV / AIDS
7. sleep disorders including obstructive sleep apnea
8. primary psychiatric disorders including eating disorders, substance abuse
9. relapse of prior illness e.g. cancer, tuberculosis, chronic hepatitis
   

Evaluation - CDC:

checking liver function, glucose, iron levels, thyroid function, celiac disease, B12, vitamin D and folate deficiency, multiple sclerosis

Explaining the need for tests when there's no test - source:
"No confirmatory test to diagnose ME/CFS is currently available. While many biological abnormalities have been reported in patients with the illness, none of these “biomarkers” have a sufficiently low false negative and false positive rate to constitute a diagnostic test..." Amousey (they/them pronouns) (talk) 23:01, 18 June 2020 (UTC)

"Benign myalgic encephalomyelitis"

Why is "Benign myalgic encephalomyelitis" not included here when other ME descriptions are? 84.9.73.172 (talk) 17:26, 8 September 2023 (UTC)

I've never heard of a case definition that calls it that. Is it Dr. Ramsay's definition? The Quirky Kitty (talk) 19:23, 8 September 2023 (UTC)