Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 1

Initial comment
This is content I originally wrote for my very own usemod wiki, http://www.projectmosaic.org --DanKeshet

Missing, well-documented etiology for CFS: Neurally Mediated Hypotension

 * I noticed that the article on CFS is missing any mention of one of the more promising avenues of research into the syndrome.
 * Numerous journal articles have documented a link between chronic fatigue and a condition called "neurally mediated hypotension" (aka NMH, "neurally mediated syncope" or neurocardiogenic syncope"), a condition of orthostatic intolerance leading to low blood pressure (hypotension) and/or fainting (syncope).
 * Studies have demonstrated that a majority of CFS sufferers test positive for NMH when tested using a "tilt table" (the primary diagnostic tool for this condition), and several researchers theorize that the symptoms of CFS in many sufferers is due at least in part to the effects of hypotension and brachycardia caused by unrecognized NMH (or POTS, a related condition of orthostatic intolerance).
 * It seems important to add these findings to the Wikipedia page on CFS, considering that they are backed by extensive research in peer reviewed journal articles, lots of online information, and may be of great value in understanding and treating the condition.

Some links on the topic:


 * Dr. Peter Rowe of John's Hopkins has published a number of peer-reviewed journal articles on the topic, as have several other researchers. As a good introduction, here's a link to an early 1995 interview with Rowe discussing the connection.


 * Links to many journal articles on the topic, as well as a list of other online information on the link between the two conditions can be found at http://www.pediatricnetwork.org/medical/index.htm.


 * Finally, here are links to emedicine.com articles on CFS and Orthostatic intolerance that discuss this possibly causal link between NMH and CFS.


 * Is anyone interested in taking the time to digest some of this information and add it to the page on CFS? I would do it (and still might), except I'm relatively new to Wikipedia editing, and also don't have all that much time and energy to invest at the moment.  Let me know what your thoughts are on including this information. Jeffgmh 20:34, 7 November 2006 (UTC)

Need feedback on link i wanted to add to External Links Section
I have a Chronic fatigue Syndrome and Fibromyalgia Forum / Blog I wanted to add to the links section. Ive been sick for 7 years and have undergone a multitude of treatments, from hyperbaric oxygen, to garth nichoson protocol, Dr. Jay Goldstein Protocol, diet,vitamins and almost everything that is available to try. Ive researched Chronic Fatigue for years and Blog every day about new research and my personal experiences with treatments, supplments, different types of diets. This site is more focused on people sharing what treatments work for them and has sections for people to discuss the newer protocols, like garth nicholson protocol,marshall protocol,blasi protocol. Its a newer site but already has 300 post and about 100 blog posts. Hopefully it will fit of the cfs page in the External Links Section The site is http://www.chronicfatiguetreatments.com thank garrett


 * What is the guideline for this sort of thing? Would a list article of CFS treatment sites that includes this link among others be in order?  I've looked at it; it's not a SPAM or other junk site. -- Strangelv 05:28, 23 August 2006 (UTC)


 * Would anyone have a problem if i went ahead and put it up?

thanks garrett -- Gdubs12345 05:28, 24 August 2006 (UTC)

Yes, it is one of thousands of similar pages. Please indicate why it is more useful that any other resource in the same category. JFW | T@lk  01:50, 27 August 2006 (UTC)


 * For me its more about the blog than the forum. I havent really seen a site that has a persons descriptions of every single treatment that theyve ever done. What vitamins and supplements they are taking and trials of many of the protocols. I think my site has alot of information, I add to my site everyday, it's growing and is good resource.I plan on keeping this site up for a long time and will add to it as long as i am still sick and trying new things. It has information that people might relate to because its coming from my perspective and is not a quote of a research study that alot of people might not understand

garrett -- Gdubs12345 05:28, 24 August 2006 (UTC)
 * You'd need to demonstrate some objectively provable authority. Just zis Guy you know? 19:37, 27 August 2006 (UTC)

Thorough Article Yet Missing a Key Theory
I suffered from CFS for nine years, and recovered mysteriously and quickly in 2004. Then, after a couple months of resuming old habits of overexertion (making up for lost time), I fell victim to extreme anxiety. After a good deal of research and personal experimentation, I discovered that the anxiety is somehow related to CFS. I stumbled across a theory and recovery regimen that appears to actually work, and also explains how I finally recovered.

Briefly, the theory is that a dysfunction of the adrenal cortex, and possibly the medulla as well, results in a hormonal imbalance that causes a multitude of symptoms. The normal sleep cycle is disrupted by the imbalance, and this causes further symptoms to appear. Sleep disruption also results in as a vicious cycle since the lack of proper sleep places stress on the adrenal glands.

For some reason, hormonal support by taking low doses of cortisol (Cortef), when taken properly, allows the adrenal gland to recuperate. After some period of time, new symptoms emerge (e.g. irritability, anxiety, sensitivity to light) that seem to indicate an excess level of epinephrine. Continuing the cortisol regimen seems to eventually alleviate those symptoms as well. However, this part of the recovery process can be hastened by taking a supplement that inhibits adrenal function. Phosphorylated serine (Seriphos) is one such supplement that has been used successfully by Dr. Gerald Poesnecker, author of Chronic Fatigue Unmasked 2000, for decades. It was after reading his book that I realized that my cure was a result of my two-year Cortef regimen, passing me through the irritability stage, followed by taking the drug ketoconazole for a month.

Ketoconazole is an antifungal agent, and I took the drug to clear up a yeast infection. While taking the drug, I experienced unusual daytime sleepiness. (At the time, I attributed the sleepiness to my CFS. But now I know that lassitude is a side-effect of ketoconazole.)  Upon discontinuing the ketoconazole, I immediately recovered from all CFS symptoms, and I had to quit taking Cortef as it was then having a stimulative effect. It wasn't until the spring of 2005 that I made the connection, discovering that one of ketoconazole side effects is adrenal suppression, similar to the effect produced by phosphorylated serine.

I am now convinced that the root cause of CFS is a hormonal imbalance caused by a state of adrenal dysfunction, and is apparently reversible in at least some cases, if not most. This hypothesis can also explain the multitude of symptoms shared by other conditions, such as Gulf War Syndrome, Post Polio Syndrome, and to some extent Post Traumatic Stress Syndrome. I believe that the common thread is shock placed on the adrenal glands by conditions leading up to all these conditions.


 * You state having "recovered" then say you "overexerted" yourself; if you were recovered you should have found resting restored your previous liberties as it would any well person.


 * It may well be anxiety is related to CFS but it is not causal; that would be a differential diagnosis. How does anxiety explain that most sufferers taking adrenal supplements have not recovered (though it may be palliative since PWME tend to be hypocortical). You don't mention muscle pain & postexertional weakness and malaise, sensitivity to temperatures, dyspnea, OI & cardiac abnormalities, neuro symptoms etc.  But most glaringly how does adrenal insufficiency explain epidemic outbreaks and immune findings? You paradoxically describe a supplement that inhibits adrenal function -- surely only of use to the HYPERcortical?  How does that help PWME/ICD-CFS who have a blunted ACTH response anyway?  The evidence does not support a life history of trauma/stress in the majority of sufferers.


 * Perhaps you were one of the lucky ones to have experienced remission of the fundemental pathophysiology but were left with adrenal insufficiency as a consequence.

The article is good.
And should stay that way. Someone from an anonymous IP edited the content and cut it by more than half, as well as disrupting all of the formatting. Let's keep the editing to whenever it's necessary, not when your opinion doesn't jibe with the facts presented. Thanks.


 * No there was a section very un-good. "Getting diagnosed" offered a nasty conspiracy theory not compliant with NPOV. This article needs some closer scrutiny to iron out the biased rants. JFW | T@lk  08:39, 8 Nov 2004 (UTC)

POV and things
I am doing a large edit on this article. There is a lot of POV and poor formatting. Not every CFS patient has met with medical skepticism and not every patient bears a grudge towards the medical profession for failing to identify this protean condition immediately. Also: I miss the Fukuda and Holmes classifications in the article. JFW | T@lk  12:42, 8 Nov 2004 (UTC)


 * True, some of them it's for giving harmful advice, obstructing care needs, and generally advocating that ME/ICD-CFS is a "malingerer's charter" undeserving of disability benefits, investigations and biological research. Seriously, I agree there are patients who've had it easy (as it should be) but they are in a minority, especially when you consider the official policies of most countries.  It's not merely about diagnosis either.  The full '94 CFS Fukuda definition itself warns against "over-investigation" which is staggering when you consider how much investigation a disease DX'd largely by exclusion requires to find any abnormality and when you consider how many pts are misdiagnosed (70% according to a recent study from Korea). MikeEsp 06:09, 25 September 2005 (UTC)


 * Nice edits, by and large. I had wanted to do a thorough scrubbing myself for a while, but, well, whenever I contemplated the full prospect, the magnitude of the task quickly exceeded my new, artificially-CFS-lowered "fuckit factor" threshhold. :-) --Ray Radlein 06:54,8 Jan 2005 (UTC)

Thanks Ray. I'm presently reading a rather good 1998 review by some American specialists, and I'm going to try & brush up on the scientific theories that are presently being examined. Ideally, this article should not reflect the erroneous view that "doctors don't believe in CFS". Some doctors possibly do, like most new disease entities were not accepted by many practicioners until many years after their original formulation.


 * (If you accept ICD-CFS approximates M.E.) it's not a "new disease" but one that has been described since at least the 1930's, and it has been suggested that a Febricula(?) was the vogue name for it in the 16th C. Unfortunately a lot of doctors don't accept CFIDS/ME to be a legitimate disease but merely a mis-named lack of fitness and faulty beliefs, which begs the question what it is they believe exists (so a doctor saying "yes I believe it exists" may be conveniently covering himself).  The Dutch health authority has openly refuted its existance and in the UK the NHS thinks sufferers can be talked and walked better. MikeEsp 06:09, 25 September 2005 (UTC)

Ideally we should seperate the signs & symptoms into two categories: those objectively present (e.g. immunodysregulation) and those experienced by CFS sufferers. I am also planning to insert all criteria of the Holmes classification. JFW | T@lk  20:16, 8 Jan 2005 (UTC)

I feel that the following from the BBC should be incoperated:

ome doctors have been sceptical as to whether ME/CFS exists as a real disease or is "all in the mind".

However, this controversy should have been effectively ended by a report from the Chief Medical Officer for England in 2002, which concluded that ME/CFS is a genuine and disabling condition.

CFS and ME are also classified by the World Health Organisation as neurological disorders. In 2004, the Department of Health announced £8.5 million of ring-fenced funding for new specialist services to deal with ME/CFS. --Taghawi-Nejad 16:46, 4 July 2006 (UTC)

This is from the "Controversies" section: "As is common historically with new or unexplained conditions, many people are inclined to believe that a condition with few or no specific and/or exclusive biomedical markers may be, or even must be, psychological in origin. This has led to frustration in many patients, who feel strongly that their disability is not psychological, but biological, in cause and effect. Some more vocal patients' groups maintain that research into CFS (ME) in the UK has been mostly hijacked by the psychologists/psychiatric lobby, who they claim hold significant power within the medical fraternity, with a resultant "abuse of patients' rights"."

That reads very POV and biased, and it's tone is far from encyclopediac. It should read something more like this: "Many people are inclined to believe that a condition with few or no specific biomedical markers may be psychological in origin. This had led to a frustration in many patients, who feel that their disability is not psychological, but biological." The last sentence needs a citation, as well as a re-write. I'm going to discuss it here before doing it, since this is an active and controversial page it seems. 207.69.248.49 19:53, 26 November 2006 (UTC)

Nomenclature section
The Nomenclature section seems rather biased and inflammatory. The disorder has multiple names mostly as a result of the confusion as to its origin, and terms like "misleading" should at least be blunted so as to not imply an actual intention to mislead.


 * Nonetheless I feel it important the consequences of shall we say, disengenuity, need be recognised as much as the causes for current confusion over the nature of this beast. The hard fact is that there are agendas at work in the world of CFS defining and research; what Dr Hyde condemned as a "failure to return to the literature".  One "expert", with fifty conflicts of interest, cited himself thirty times in a paper, yet it passed peer review. It has to be recognised this is a highly politicised illness which governments are bending backwards to use as a soft target for spending cuts via help from their pet social engineers, the psychs. Maybe a reference to the cavalier way in which some have run with Beard & McEvedy's 1970 propaganda paper (they didn't see a single patient) or is it better to not risk giving them oxygen? MikeEsp 06:09, 25 September 2005 (UTC)

Guaifenesin protocol
I just wanted to mention a treatment that I'm on that seems to have some effect on my fatigue, although there's reason to think it's strange that it works. To make a long story short, there are some that believe that Fibromyalgia and CFS are related. I heard about the Gaifenesin protocol and decided to try it. My research suggests that Gaifenesin isn't harmful to take and doesn't have any long-term effects (this may certainly not be true). I have a book on this and followed the protocol in the book. Just as it says, for about a week or two after starting, I felt lousy, then I noticed that my energy level was noticably better. If I quit (like I did when I went on a trip to Japan), it takes about a week for me to notice the severe fatigue coming back. Of course, just because it appears to work doesn't mean there isn't a significant placebo effect. Also note that this does not in any way CURE the problem--it only improves the symptoms noticably.

65.31.217.27 and POV
has been making very large edits that are quite heavily POV on one particular side of CFS. This was paired with a massive lump of references that was not actually referred to, and destruction of interwiki and category links. Those edits get reverted.

Using definitions from medical dictionaries is suspect, and so is the bombardment with "the WHO says, the CDC says" etc. We've had this on AIDS, where the most notorious POV-pushers kept hiding behind official statements interpreted in their own preferred manner.

I wish to keep this article balanced, and would like to discuss with everyone, including 65.31.217.27, how to improve its overall quality. To insist that CFS is an organic brain disease is POV - this is absolutely not held by every authority, and it would be a distortion to say that it is. JFW | T@lk  17:48, 19 July 2005 (UTC)


 * 65.31.217.27 has now returned as, with a long rant about this article on his/her userpage. I will not accept the pushy revisions without discussion. JFW | T@lk  08:03, 20 July 2005 (UTC)


 * Nor will I allow JFW's repeated and deliberate violation of Wikipedia guidelines and policies to go unchallenged. Vandalism is a serious charge JFW.

Medicaljournalist 21:23, 8 August 2005 (UTC)

"Rants about Doctors"
I agree with the frequently-mentioned assessment that there are inappropriate "rants against doctors" in the text. The original text dump, which I wrote nearly ten years ago, then dumped on Wikipedia in its early days, was a guide for patients and not an encyclopedia article and I'm amazed in many ways that it has not been cleaned up ("Yo-yo", "payback effect"? These things have medical names too...).

At the same time, I feel that the patient-doctor experience has been a significant one in the history of the illness, as many, many patients will attest to. (Outside of doctors, the general perception of the illness has been very important too.) I think this sort of experiential knowledge of the actual history of the illness and the people who have had it is just as important as the medical details which have and will emerge over the years. At the same time, just including a bunch of anecdotes about how doctors have or have not been useful to patients doesn't make an encyclopedia article. There are studies (like this British one about GP's reactions to people with CFS) that have documented perceptions and changing perceptions of the illness within the medical and general communities. This is where we should look for information on the subject. DanKeshet 22:39, July 19, 2005 (UTC)


 * For too long the experience of severe sufferers has been marginalised or censored. Too often we are portrayed as unrepresentative, "abnormal" and even singled out for the psychologisation treatment (c.f. UK doctors advising DwP; past Wiki reference to "extreme sufferers") yet if anything we are the people who should be included more, not less, in biological research as our M.E is most overwhelmingly evident and perhaps earlier demonstrative of investigative measurements. There is also a survey "Severely Neglected" by the UK 25% Group Charity. MikeEsp 06:09, 25 September 2005 (UTC)


 * Dan, I wish you could help out here. I've had a couple of major copyedits on this article, and I think it is now fairly balanced. Of course I am not an expert, and I lack the time to dig too deeply into the latest research. Still, without expecting you to choose sides, I'd like your opinion on the heavy-handed additions recently made by a determined anonymous editor who has now got an username.


 * I agree that the "general perception of the illness" is very important on this page. On more technical pages, such as my darling Heyde's syndrome, I would have acted to suppress uninformed public opinion. Here, however, the scientific development is tightly interwoven with perceptions of the public and especially of patients. Doctors do get confused when patients present with all sorts of seemingly unrelated symptoms that are much easier to attribute to either "asthenia" (an oldfashioned term) or simple malingering. I'm not surprised it took 50 years for full recognition of the syndrome, and I'm also not surprised there are still doctors who do not believe CFS is a disease entity. JFW | T@lk  10:06, 20 July 2005 (UTC)


 * The recent edits have been inappropriate. CFS as a disease of the brain is only one of many theories.  While it certainly has some support, it's not the only theory, probably not the most popular theory, and the vast majority of researchers, patients, etc. reserve judgment on what the most important element of CFS, on what subgroups there are in CFS patients, what causes CFS, etc. until further research clarifies.  Medicaljournalist: let's be very careful in not jumping the gun here.  Wikipedia is not a place for original research, and until and unless CFS is widely understood to be a brain disease, we cannot flatly describe it as such, esp. not in the lead paragraph.


 * Organic disease involving (but not necessarily caused by) the brain is the best evidence we have -- despite that the CFS (Fukuda) definition is mostly accepted as selecting a heterogenous population. Most World class experts agree, though typically most disagreement comes from one speciality who would rather see ICD G93.3 CFS collapsed into F48.0 (psychogenic fatigue) as per a well-known London centre and it's "Collaboration Centre".  Admittedly the two most neurological symptoms in the Fukuda definition were optional, but recent research demonstrating cerebral atrophy and severity of cognitive dysfunction makes significant involvement of the brain hard to dispute.  The Canadian criteria goes further in requiring at least two "Neurological/Cognitive Manifestations" and an "Autonomic" and a "Neuroendocrine" symptom, and describes features long typifying M.E. such as sensory overload, loss of proprioception and loss of the antidepressive effect of exercise.  (These had already been described in e.g. Hyde and Jain's "The Clinical and Scientific Basis of CFS/ME".) The Canadian document was published in 2003, the most recent definition and as such supercedes the Oxford, Fukuda and Australian definitions. I cannot see why Canadian expertise should be inferior to US expertise.


 * I also fail to see how one can "reserve judgement on the most important element of CFS" when the thing is actually called "Chronic Fatigue Syndrome", the conflicting "syndrome" here consisting of a mere four so-called "minor" criteria? That die has already been cast, it's time for sufferers to say "hang on a minute", let's not just repeat what the CDC or NHS is saying about ME/ICD-CFS or we might as well just redirect to www.cdc.com.  The biggest irony is surely that a supposedly "etiologically neutral" name and definition reads suspiciously like a description of F48.0 neurasthenia. Post-exertional exacerbation is by no means synonymous with fatigue which according to Fukuda is the only abolutely necessary single symptom common to all cases. MikeEsp 06:09, 25 September 2005 (UTC)


 * JFW: I have been busy wiki-ing elsewhere and away from the computer. I will try to spend some time over the next few weeks emphasizing the difference between the areas on the current state-of-the-art in medical research, and the areas about people's perceptions (accurate or otherwise) of the illness, which I gree is a very good distinction to make.  re: doctors, the original text was written from a patient's perspective ("hard to get diagnosed"); your paragraph discusses a doctor's perspective ("patients present with..."); I'm sure we can find some way of stating it that doesn't come too much from one perspective or another and doesn't judge doctors for the perceptions they have of CFS. DanKeshet 02:49, July 21, 2005 (UTC)


 * I just had a look, and I notice that JFW reverted my change on the 19th of July, where I removed the rant weaselly disguised as NPOV about most doctors not believing CFS exists, and about the "psychiatric lobby" in the UK. In JFW's note he says he kept my changes, but this one seems to have been reverted. Not sure if this was a mistake or not, so I haven't put it back in.


 * There was a study in the BMJ (I think) about 10 years ago which interviewed GPs and found that something like 70% believed that CFS was a real illness with real, debilitating symptoms, with a psychological cause - but I can't find the reference. It's a different study from the one about GPs perceptions of IBS and CFS which came out last year. This is the main basis for my changing the text from "most doctors don't believe CFS exists", as well as my own discussions with doctors, all of whom believed CFS exists, but that it has a psychological cause. If anyone can find this reference to this study, please put it in. - Dave [212.159.100.102]


 * Why did you remove that anyway? 30% is a rather sizable part of the medical profession! JFW | T@lk  11:28, 22 July 2005 (UTC)


 * I don't fully understand. Over 70% of doctors believe it exists. And not all of the other 30% don't believe it exists - a certain % of that 30% of doctors believe it is an organic disorder. However as I can't find the original study, I don't know the exact figures. If you look at any CFS discussion board, you'll see that patients are angered just as much by a psycho-social explanation for their illness as they are by people not believing their illness exists. A lot of the time patients intererpret a psycho-social diagnosis as "the doc says it's all in my head" or "he says there's nothing wrong with me". And the bit about the "psychiatric lobby" is clearly not NPOV. -Dave


 * The UK psychiatric lobby is fact. Starting off with "M.E. is a belief system" and moving into "the undeserving sick", they showed their hand in, amongst others, a unilateral, unendorsed move to reclassify ME/ICD-CFS as a mental illness in the so-called "WHO Collaboration Centre" fiasco which the WHO (Geneva) were unhappy about but powerless to control, but were able to confirm they have no plans to change the ICD coding of G93.3 ME/ICD-CFS. The vociferous agenda pushing is very clear to anyone who reads campaigning lists.  More recently, words were said about a Manx Parliamentary enquiry which turned out to be, surprise, not the whole story.  And now naked ambition is a psychiatrist-heavy DwP Panel about to make it much harder (than it already is) for sufferers to get disability benefits.  If that's not psychiatric lobbying, what is it? Oh, I forgot to mention the "new clinics" job adverts flaming of sufferers as literally mad, bad and dangerous to be around! A "psychosocial" dx does mean AYTH. MikeEsp 06:09, 25 September 2005 (UTC)

Lead paragraph
The lead paragraph here is even more ticklish than for other articles.

One has the goal of providing a brief overview of the topic, one that will give the reader a reasonably accurate though incomplete impression of the subject, without getting into a lot of nitty details, exceptions, conflicting opinions, etc.

For this reason a fair number of "weasel words" are used -- "generally", "usually", "often", etc. Controversy, though possibly hinted at, cannot be addressed to any degree (other than perhaps to say "controversial" occasionally), and unusual/exceptional cases should generally not be mentioned (though perhaps they are implied by an appropriate weasel).

Let me take apart the existing lead paragraph:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names,

This seems good. The article is named "chronic fatigue syndrome", so that should come first. The following list is a decent sample, and the weaseling is appropriate.

is a disorder of the central nervous system (CNS)

Ticklish. "Most authorities" believe it's a CNS disorder, but a number argue "adrenal fatigue" or some such. (My personal opinion is that it's CNS.)

characterized by a number of features, the most common and notable one being severe fatigue, usually made worse by even modest exertion.

I think this is fair. There are of course some cases tagged "CFS" (or, more likely, "CFIDS") that don't have fatigue as the primary symptom, but the above covers 90+% of cases nicely.


 * I have to contend with the use of "primary symptom" here. As a long term severe ME/ICD-CFS sufferer I've found other ME sufferers the world over agreeing that you can't really claim (to anywhere 90% anyway) that fatigue is a "primary" symptom, if by "primary" you mean the most insufferable or most disabling symptom, and if by fatigue you mean a generalised sensation of tiredness/exhaustion. There was a UK survey about a couple of years ago, carried out by a children & young persons' charity, that also demonstrated this.  Remember the definition of ME requires "variable involvement" of "multiple" bodily systems, and there are around 60 potential symptoms, but with involvement of circulatory, CNS, immune and muscle being most common (or evident).  For some sufferers it's pain, others cognitive dysfunction, severe malaise, sensory overload or orthostatic intolerance.  Muscle weakness including potentially cardiomopathy -- the delayed recovery of muscle strength as demonstrated in research is almost pathognomic -- is too specific to fall under the spell of subjective woolliness which is "fatigue", I feel. MikeEsp 06:09, 25 September 2005 (UTC)

It is regarded by many as an organic brain disease.

Kinda wonder if this shouldn't be combined with the "disorder of the central nervous system" earlier (pulling that down here). If this is done it shouldn't really be necessary to refer to both "brain" and "central nervous system" -- "central nervous system" should suffice.

Its exact cause is unknown, although many theories have been advanced,

A reasonable tip of the hat to the multiple theories.

and it is currently considered by most authorities to be incurable,

Again, reasonable.

although some cases may resolve over time and medication can bring a degree of relief in some others.

One problem with this is that it's starting to be a run-on sentence. Beyond that, the specifics are that most cases tend to improve over time, some to the point where "normal" living can be resumed. Very, very few completely "resolve".

Also, there's no real body of practice for the use of medication. Some people, through personal experimentation, find meds that help, and some (usually non-mainstream) docs claim considerable success with certain "protocols", but there's no generally-agreed medication treatment that has consistently helped even a fraction of CFS patients. As a result, the way medication is mentioned seems a little "strong".

drh 21:27, 21 July 2005 (UTC)


 * Thanks Dan. Many psychiatric disorders are not "organic", but are still CNS disorders. As for medication: some CFS patients benefit from SSRIs, tricyclics, analeptics, and other from nonmedicamentous treatment (graded exercise, yoga, what have you). I think the intro as it stands is 500x better than the version Medicaljournalist is pushing. JFW | T@lk  11:28, 22 July 2005 (UTC)


 * cases of recovery of CFS due to GE are suspect though could demonstrate flaws in the definition (M.E. definitions require being made worse by exercise, in CFS this is an optional criteria ("postexertional malaise lasting more than 24 hours") though many ICD-CFS experts, especially in the US, assume it as standard thus approximating an M.E definition in that respect. MikeEsp 06:09, 25 September 2005 (UTC)


 * JFW you need to back off. You are flaming me because the factual information regarding the brain disease CFS doesn't fit with your controversial and unproven "biopsychosocial" POV. Please start backing up your assertions with actual facts and sources per Wikipedia policy. Interesting that if you personally don't disagree the edit becomes "pushing," "ranting," "belligerent. "  Some people might thus describe your behavior also. If Dan can find a way to personally contact me why is it that you can't be bothered?

Medicaljournalist 21:32, 8 August 2005 (UTC)

characterized by a number of features, the most common and notable one being severe fatigue, usually made worse by even modest exertion.

I think this is fair. There are of course some cases tagged "CFS" (or, more likely, "CFIDS") that don't have fatigue as the primary symptom, but the above covers 90+% of cases nicely.


 * Dan - CFIDS is a term used to narrowly define ME/CFS ICD-10 G93.3. It always, always involves postexertional fatigue. If you do not have postexertional fatigue aka exercise intolerance you don't have CFS. Even the Fukada definition gets that much right if not much else.


 * Dan and Medicaljournalist I sympathise with thrust of what you're both saying but in fact in the Fukuda CFS definition postexertional malaise is one of the optional criteria, "the concurrent occurrence of four or more of the following symptoms" which are listed as "...impairment in short-term memory or concentration...sore throat;tender cervical or axillary lymph nodes; muscle pain; multijoint pain...; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise..." so you can conceivably have in addition to fatigue e.g. sore throat, tender lymph nodes, muscle pain and unrefreshing sleep... no post-exertional malaise needed. (In an otherwise very good rebuttal of UK GET/CBT policy Dr Lapp sadly got this wrong, if I remember.) This is a major criticism ME-proponents have of the CFS definition and why it is risky equating even a "strictly defined" CFS diagnosis with a strictly defined ME diagnosis (unless made per Canadian Def or specified as ICD-accordant). It makes ME just one potential (postexertion) subset of CFS. NB if I'm wrong and there's been a review of the CDC definition that has made this a requirement let me know, I can't find one more recent than 1994 on their web site. MikeEsp 06:09, 25 September 2005 (UTC)

The term "fatigue" is what I believe y'll term "weaselly." It is a common symptom of over 30 severe diseases, but just because someone is tired doesn't mean they have some form of disease such as cancer, renal disease, multiple sclerosis, Ehlo-Danos disease, Parkinson's disease, Huntington's disease or G93.3 ME/CFS! Out of the 30 nonpsychiatric diseases I know of, only three specifically have abnormal "postexertional fatigue." Mitochondrial diseases, neuromuscular diseases and CFS. The reason they are diseases and the people known as patients is because it is abnormal and not found in healthy people.

PS. The United States Department of Health Services has a committee set up to officially change the misnomer CFS to something more appropriate. It's rather like calling diabetes (also once misdiagnosed as a psychiatric disorder) "Thirsty all the time" disease. Yes, people with diabetes are often thirsty, but it is not the only symptom or the main symptom.

Medicaljournalist 21:47, 8 August 2005 (UTC)

&amp;quot;appears to"
I think the "appears to" might have been in reference to potential relapses after symptoms have resolved. It's not clear that the absence of symptoms means that they won't reappear. DanKeshet 22:44, July 21, 2005 (UTC)


 * Of course you're right, but for the intro this is really a bit weasely. Resolved is resolved, and does not exclude relapse. If an oncologist speaks of a complete response, this is not the slightest proof a cancer won't relapse. JFW | T@lk  11:28, 22 July 2005 (UTC)

Organic Brain Disease
Before this turns into a revert war, I propose the following compromise: A new section entiteld "CFS as an Organic Brain Disease" or something similar should be created. Medicaljournalist's edits can be put into that section so they can be in the article without the earlier version of the article being radically changed. (I'd have done it myself but I'm a bit sleep-deprived from caring for a sick friend -- no CFS connection, for anyone who's wondering -- so I'm not thinking 100% clearly and doubt I'd do a very good job figuring out which of Medicaljournalist's edits to leave as-is and which to change back and move to the new section). Icarus 20:56, 22 July 2005 (UTC)

You are welcome to create a new section for unproven minority biopsychosocial speculation, but CFS is an organic brain disease and lack of factual knowledge on any editors part doesn't change that. I'm very curious as to why so many people appear to be clinging to inaccuracies that don't even have sources per Wikipedia policy.

Out of curiousity, has any editor on this page actually been medically diagnosed with G93.3 Chronic Fatigue Syndrome? How many actually read the neutral Co-Cure research site? or the full studies on PubMed?

I also believe there is confusion between medical remission and medical resolution. While some editors have been very outspoken about their dictionary phobias, Wikipedia policy doesn't exlude word accuracy, as an encyclopedia project they just require more information than do most dictionary definitions which are designed to be precise and brief. An encyclopedia by definition expands beyond a brief mention, but this doesn't mean accurate definitions become conspiracies.

So, to avoid word confusion and misinformation the accurate term as it applies to the medical research into G93.3 CFS, is remission which comes in many flavors. Accurate epidemiological studies show only four percent of patients have a 100 percent remission rate. Statistically, that's pretty lousy.

Here is what each word actually means in medical terms:

remission

Pronunciation: (re-mish'un)

1. Abatement or lessening in severity of the symptoms of a disease. 2. The period during which such abatement occurs. Etymology: L. [remissio,] fr. [re-][mitto,] pp. -[missus,] to send back, slacken, relax

resolve

Pronunciation: (re-zolv') To return or cause to return to the normal, particularly without suppuration, said of a phlegmon or other form of inflammation. Etymology: L. [resolvo,] to loosen

Sorry, but the word resolve appears unrelated to this particualar brain disease. Does anyone have any medical study citations for G93.3 CFS rather than going by personal opinion.

Medicaljournalist 20:52, 8 August 2005 (UTC)

Medicaljournalist
On his user page, Medicaljournalist repeatedly says he's been having technical problems editing this talk page. I have e-mailed him in hopes of helping figure out what's going wrong. DanKeshet 21:37, July 22, 2005 (UTC)


 * I really appreciated the effort Dan made. It matched nicely with Wikipedia Newcomer policy.

Medicaljournalist 21:51, 8 August 2005 (UTC)

Organic
Actually, my impression is that most reasonably severe mental disorders are "organic", in that one could, given sufficient access to resources (including, if needed, a post-mortem on the patient -- not something many would agree to), demonstrate some physical abnormality in the brain.

But, whatever term one uses, I think the "substantial majority of authorities" now consider CFS to be a "real" physical condition -- the number arguing for psychiatric origin is relatively small. drh 00:57, 24 July 2005 (UTC)

-- There are many theories and some proven links to biology in severe mental disorders such as schizophrenia and bipolar disorder, but this may only mean that psychiatrists are wrong as again. The oft stated problem with psychiatry is that there are no laboratory tests, no blood tests etc. to empirically "prove" psychiatric theories. Diagnosis of mental disorders is what is called a diagnosis of exclusion. In other words, everything has to be ruled out first.

Dan is correct, the political attempt by a relatively small group of "biopsychosocial" psychiatric specialists, who adhere to this highly controverial medical model, to reclassify many organic diseases as psychiatric disorders is being refuted more and more widely as more an more factual information is publically revealed.


 * agreed, but the censorship is strong in the UK, the BMJ for instance will only print a biological study if it has a Weasily name attached. MikeEsp 06:09, 25 September 2005 (UTC)

The reason the term "organic" is key is because organic means -

organic disease

a disease in which there are anatomic or pathophysiologic changes in some bodily tissue or organ, in contrast to a functional disorder; particularly one of psychogenic origin.

Very simply, organic diseases are the opposite of functional disorders, particularly those caused by mental disorders. Just because psychiatrists don't agree with organic classifications and try to change them or don't want to believe the proven medical evidence hardly makes their diagnoses accurate or correct.

Medicaljournalist 21:09, 8 August 2005 (UTC)

Organic deux
Is there a better term than "organic"? drh 01:02, 24 July 2005 (UTC)

Nonpsychiatric means the same thing. Not much choice when you are using accurate medical terms and I assume accuracy and factual verification are of course important to the editors of this page.

Medicaljournalist 22:00, 8 August 2005 (UTC)


 * Biological? Biogenic?  Pathophysiological?
 * MikeEsp 06:09, 25 September 2005 (UTC)

Medicaljournalist
Though the causes and even symptoms of CFS remain controversial, Medicaljournalist appears to be on a campaign to eliminate dissent.

I agree it may be true that specific medical groups have "defined" CFS in a certain way, and that those definitions should be given some extra weight, but there should not be wholesale removal of other, less "official" symptoms. Similarly, with regard to proposed causes, there should not be wholesale removal of significant numbers of the listed proposed causes.

Common courtesy, combined with intellectual honesty, demands that, in a controversial area, whether medical or not, all reasonable voices should be given an opportunity to present their views.

In addition, there are some important editorial concerns: The lead paragraphs should be constructed to be brief and accessible. They should give a relatively good overview, but leave "messy details" to later sections. Eg, giving the frequency in women vs men is too much detail, especially when it causes other important information (such as the fact that the disorder causes fatigue) to be eliminated.

Unnecessary jargon should be either avoided or explained. Using a term such as "prodomal" without explanation or at least a link to a definition is, quite frankly, inexcusible, especially when its introduction is accompanied by the deletion of explanatory text.

Certainly the article is a bit large and cumbersome, and will eventually need additional cleanup, but Medicaljournalist isn't going about it in the right way. drh 19:19, 25 July 2005 (UTC)

I have made every attempt to discuss this with other editors, I believe you have confused my edits following Wikipedia policy with JFW's campaign to eliminate dissent. Prodromal is inexcusable? What on earth is "Payback" and "Yo-Yo." Who made those up instead of using standard medical terms appropriate to an SVOP category?


 * Just to say I cannot say how glad these terms went :-) They are part of the psychologisation lingo, whereby whole swathes of sufferers have been brainwashed into perceiving themselves architects of their own symptoms and thus absolving the med proffession any responsibility for looking after their pts. The talking-down-to alone is pretty insulting but the bad "he a crazy man" PR "Yo-Yo" etc gives the public is inexcusable. I have no problem with prodromal. MikeEsp 06:09, 25 September 2005 (UTC)

Medical journalist is merely following published Wikipedia policy. Why do you have the POV that Wikipedia policy isn't the "right" way. I'm not the person to take that up with. Sorry.

Medicaljournalist 22:06, 8 August 2005 (UTC)

Comorbid
One aborted change that Medicaljournalist apparently made at one point was at least headed in a good direction (though I don't know where he would have ended up). That's breaking down "disease associations" a little better, or at least explaining it better.

For instance fibromyalgia is commonly comorbid with CFS, though they appear to be distinct disorders. GWS and PPS may, on the other hand share a common etiology with CFS. Lyme, gluten intolerance, et al, are distinct disorders that have many of the same symptoms as CFS.

(It's not clear what the intent was with PCOS here -- comorbid, common etiology, or unrelated disorder?) drh 19:29, 25 July 2005 (UTC)

[Is there a way to automatically put the signature in? I keep forgetting it.]


 * Yes, ~ (four tildes). The PCO thing is tentative. JFW | T@lk  21:46, 25 July 2005 (UTC)


 * Co-morbid merely means a patient can have more than one disease or condition at a time.

Fibromyalgia is a soft tissue neuromuscular disorder with neuropathic pain that can be co-morbid; Gulf War Neurological disease, as it is now officially known. has similar signs and symptoms, although the proven trigger is the chemical Sarin rather than the viral trigger of HHV-6 or EBV (HHV-4). But yes, the mechanism is the same which means the effects are often very similar.

By PPS? Do you mean Post Viral Fatigue Syndrome (PVFS) which is also organically classified with CFS under ICD-10 G93.3 myalgic encephomyeliitis (ME)? Lyme disease is like GW neurological disease, has similar signs and symptoms as is common in any disease which results in deregulation of the CNS particularly the brain. However, the trigger in Lyme is bacterial rather than viral or chemical. Gluten intolerance is unrelated to neurological disorders although it can be a secondary characteristic of some diseases. Medically, it is very important to distinguish between what is secondary and what is primary. B12 deficiency can cause the same neurocognitive deficits as those seen in CFS, but doesn't share the distinct pattern of symptom clusters that is unique to CFS or at least in the POV aka research studies of the clinicians who actually "see" CFS patients as opposed to academic theorists who wouldn't recognize a CFS patient if they bit them.

Medicaljournalist 23:40, 8 August 2005 (UTC)


 * research by MERGE has shown a biological distinction between CFS and GWS though otherwise virtually indistinguishable. Uncomplicated FMS seems more respondant to exercise than ICD-CFS. MikeEsp 06:09, 25 September 2005 (UTC)

Caused by mono/prolonged illness & Causing Lymphomas?
I'd like to suggest someone (with more knowledge) add something about the supposed connection between mononucleosis (and/or a prolonged period of acute illness) potentially causing chronic fatigue as well as CFS itself potentially causing Hodgkins lymphomas...I read in a popular (nutritional) health book that these were thought to be associated. (This struck me particularly because I have all of these conditions, so I wonder if anyone else could write about it?)

I'd also be curious for references on the temperature sensitivity already mentioned in the article...I have this problem to an extreme with cold, but I had not seen this mentioned in association with CFS elsewhere. thanks, Brettz9 07:30, 26 July 2005 (UTC)


 * Do not trust books by nutritionists. A large proportion have no understanding of basic clinical science (e.g. discouraging foods because of detrimental effects in animal studies).
 * You are correct that EBV, the virus that causes mono, has been found in Hodgkin's and has been causally linked to other lymphoproliferative disorders, especially Burkitt's lymphoma (that's how it was discovered in the first place). Its link with CFS is tentative - any viral illness has been linked with CFS, although it has been labeled "chronic EBV" by some.
 * As for the temperature sensitivity - this is reported by some CFS patients. It may also be caused by various other diseases, specifically of the thyroid (hypothyroidism). JFW | T@lk  13:05, 26 July 2005 (UTC)

Caused by mono, et al
The mono-CFS connection gets confused for several reasons. First off, there is a striking similarity in symptoms. Secondly, it is common for CFS to begin after a viral infection (typically a flu infection, sometimes just a flu shot). Third, most folks with CFS test positive for EBV.

But, taking last first, 75-90% of healthy adults test positive for EBV, so the EBV test is largely useless. The reason that CFS so often starts after a flu infection/immunization is most likely that an autoimmune reaction is triggered by the infection/immunization and it's the autoimmune reaction that in turn causes the CFS. Finally, the similarity in symptoms is really not that odd -- when fighting the mono EBV infection (or any other infection that is fairly taxing on the body) the body intentionally turns up its "fatigue setting" to force you to rest. In CFS, something causes that setting to be turned up without any obvious organic illness to recover from. (The location in the brain of this "fatigue setting" has been fairly well identified as the "reticular activating system".)

Re lymphoma, I've been rattling around in CFS circles for probably ten years now, and have never heard anyone assert an association between the two. I can see how there could be an association between EBV and lymphoma, but one directly between CFS and lymphoma seems unlikely.

Re temperature sensitivity, the best "reference" for this would be folks with dysautonomia (POTS, NCF, PAF, et al), a class of disorders that is kind of "CFS squared". Many of these folks are exceedingly temperature sensitive, and have great trouble both keeping extremities warm in cooler weather and surviving summer heat without suffering severe blood pressure symptoms, dangerous body temperature excursions, total digestive system breakdown, etc.


 * I would take care to not suggest that ICD-CFS is less severe than dysautonomia. There's plenty research shows many with ME actually have POTS, NCF, possibly PAF, and so on.  And of course more severe sufferers have difficulty standing for more than a few seconds or at all, though that could be diastolic cardiomopathy or something else; square-able enough by itself.  Maybe more accurate to say dysautonomia is often part of CFS (as per Canadian dx anyway)? MikeEsp 06:09, 25 September 2005 (UTC)

Most folks with CFS seem to have a touch of dysautonomia -- blood pressure variation, cold feet, digestive problems, etc.

I agree with JFW that books by "nutritionists" are often suspect, at least as much so as drug company propaganda, and for the same reasons. They're trying to sell something, and are not above creating a little FUD (fear/uncertainty/doubt) or hawking a worthless cure if it will help sell their books or their proprietary supplements.

drh 14:30, 26 July 2005 (UTC)

Incorrect testing of EBV is indeed useless in the case of CFS.

The difference between healthy people and patients with CFS is that patients with CFS show unusually late intial active infection or the viruse reactivates on a cyclical basis. This is very abnormal, but also explains why CFS patients have cyclical sore throats and swollen and tender lymphnodes.

An EBV test is one of the tests required by the Social Security Administration in order to prove a patient has CFS.

Internal body temperature is regulated by the brain.

When the brain is compromised by infection, internal temperature control is compromised. This is why the immune system, the cardiovascular system, the autonomic system etc. are so dysregulated in CFS.

The most current (2003) clinical case definition of CFS requires autonomic dysfunction in order to make a diagnosis. Clinical diagnosis is different from research definitions such as the Holmes (more closely resembles the original Ramsey definition) and the hopeless compromised Fukada definition which is continually up for revision because it does not select a homogenous patient population which is critical to duplicating research results.

Whether or not nutrition plays a secondary role in CFS depends on the nutrient and how they affect the body and whether that part of the body is compromised in CFS patients.

Metal allergy testing
It seems a bit odd to have "metal allergy testing" listed as a proposed treatment when "metal allergies" are not listed as a potential cause. drh 21:06, 29 July 2005 (UTC)


 * It's pseudoscientific waffle, and should be removed if a more serious source can't be found. JFW | T@lk  10:36, 31 July 2005 (UTC)


 * I am treated by two doctors,one of them specialist for CFS the other for Metal Toxiology. Both of them find that treatment for heavy metals is greatly beneficial in the FMS-Pain symthoms--Taghawi-Nejad 12:59, 10 June 2006 (UTC)
 * I should add here that it was not about a metal allergy but a H-M toxisity.

--Taghawi-Nejad 16:57, 4 July 2006 (UTC)

Yep, that's my take...
Though we have a sort of implicit policy in this article to not exclude any theory which is at least nominally viable and has more than a handful of proponents. Since this is the first I've ever heard of this one, though, I'm not sure it meets the second criterion, regardless of the first. drh 14:27, 1 August 2005 (UTC)

Overall editing and updates
I should very, very much like to clean up this article for readability, grammar, and consistency. Since I note a certain amount of back-and-forth changes and arguments already exist, I thought I'd make the suggestion here and see what people thought.

I'd also like to add a section for recent research and discoveries; the discovery of differences in gene expression in CFS persons is very important, as it may eventually offer a diagnostic test for CFS, and is also touted as "proof" of the syndrome's existence as other than psychological or hypochondriacal. (http://www.newscientist.com/channel/health/mg18725093.700 is a good article on this; the original Journal of Clinical Pathology article is available only to paid subscribers, although an abstract is available.)

I would also like to expand the co-morbidity and associated disorders section, and discuss other syndromes which can be easily confused with CFS, or co-morbid with CFS as well.

The opening paragraph is a bit of a mess, rather a run-on sentence, and disagrees with points made later on in the article. As "fatigue not alleviated by rest" is such an important diagnostic criteria for CFS, I should prefer to see that mentioned there, as "fatigue, usually made worse by even modest exertion" is unclear - of course exertion can cause fatigue, even in healthy persons. "Organic brain disease" is likewise unclear, and I don't understand what the phrase intends to convey. Where is disease implicated? "Brain disease" sounds rather meningitis-like, and despite the ME label, there is no evidence of inflammation of the brain or meninges in CFS patients.

Medication is mentioned in the first paragraph, but never adequately addressed.

I could go on, but I'd like to start with the grammatical and clarity edit before I properly mess about with the contents, as I suspect that will cause more uproar.

Feyandstrange 20:59, 25 August 2005 (UTC)


 * I'd rather emphasis safely put on exercise intolerance than on rest uselessness. Early papers by Wallis, Acheson, Ramsey et al put emphasis on enforced bed rest! Sufferers who don't or can't rest in the acute stage have poorer prognosis; this experience is continually born out in the experience of sufferers. In well people and major depression anergia can sometimes be due to lack of exercise. Most sufferers find that to some extent symptoms are ameliorated by rest, though the underlying exercise intolerance isn't, in other words it's fairly common for sufferers (other than most severely affected) to feel okay when not doing anything. MikeEsp 06:09, 25 September 2005 (UTC)
 * I'm not personally as familiar with the exercise intolerance papers, I'm afraid; most of my reading is current and recent developments rather than earlier stuff. If you'd care to add more on the topic I'd like to see that. Also, I don't wish to encourage a total lack of exercise, as even the bedridden need to stretch and try to bear weight sometimes for the sake of retaining muscle tone. While severe symptoms are ameliorated, they are certainly not cured by rest, and that is such a defining characteristic of the syndrome that I like to emphasize it. Feyandstrange 22:48, 27 September 2005 (UTC)

Edits and spelling standardization
Various edits made, mostly for clarity, some additions, a few subtractions. Cleaned up run-on sentences and the like.

Spelling: Standardized to American English, which I picked because the article is "Chronic fatigue syndrome" not "Myalgic encephalitis". I also standardized to "post-viral" hyphenated in all cases (it was not previously standardized). (I suppose I should put in a stub for post-firal fatigue syndrome some time soon.)


 * How about a stub for M.E.? MikeEsp 06:09, 25 September 2005 (UTC)
 * Right now it's a redirect to CFS, which makes sense to me. I realize some people think they're different disorders, but I don't personally agree, and I don't know the arguments well enough to figure out whether a separate page is necessary. Feyandstrange 22:50, 27 September 2005 (UTC)

Under "etiology" and "treatment" particularly, I removed items sourced to only one doctor (such as "Doctor B. Tiredalot did a study on five-year-olds with CFS, which indicated eggplant is extremely valuable to CFS children,") while leaving the item item itself if I deemed it to be valid and useful (a rephrase to "Some doctors have recommended eggplant for children with CFS"). References to one physician only smacked too much of quackery and miracle cures, and CFS gets enough of that sort of thing.

I collapsed the "Onset" section, and 3.4 also.

Some sections were combined ("metal allergies" with "allergies"), for example) for clarity.

I'm going to go back and remove the entire "See also" section, which doesn't seem to need to be there.

I added a "co-morbidity" section to attempt to distinguish the several co-morbid conditions from those mentioned under "Disease associations", which didn't seem to be quite the same thing.

The last reference link may be badly formatted. My brain went blank on how to correctly cite things.

I did not fully cite every change I made, but am probably able to do so. As a person with CFS who has done considerable research on the dratted condition, I'm fairly aware of most of the research and theories.

I have not brought this article into line with Wiki specs for medical articles. I got tired. :)

Feyandstrange 05:57, 11 September 2005 (UTC)


 * Thank you, and well done. The article needed some gentle cleanup. As this is not just a simple medical disease, you are forgiven for not formatting it like a medical article. I would discourage that, actually. JFW | T@lk  20:03, 11 September 2005 (UTC)

Current state: much improved
Though I need to re-read this with a clearer head, thanks to all who've sorted out the mess this was about a year or whenever ago after some people had crammed stuff in in an attempt to subvert the behaviourist nonsense that had riddled the article but were unable/unwilling to remove. I intended to do something about it myself but was too sick. It will require some vigilance to stop it being overtaken by either the Weasily school or eggplant fetishists. (other comments interspersed above).

MikeEsp 06:09, 25 September 2005 (UTC)

Could we have?
A section called "Common Clinical Observations" that would include such things as "low ESR" and "Low Body Temp" and "Low Uric Acid" and "RNase-L"?

Paron18:11m 14 October 2005 (UTC)

update
Common clinical observations would be good, even better if supported by reliable peer-reviewed findings. Perhaps linking to detailed descriptions on a separate page to enable some detail without bloating this page too much? They could be ordered according to e.g. immunology, neurology, etc.

I slightly altered the introduction to try and briefly clarify the heterogenity and inconsistency of definitions in use and their discrepency with sufferers' reported experience. i.e. "Most definitions," "...according to," "...even trivial exertion" (I thought "modest" failed to include severe cases), and "the Oxford and Fukuda require this to be optional only". It is I think, important to understand this as a lot of misconception, suffering and exploitation has resulted from this mess, such as the Dutch (Nijmegen) school's insistence on measuring nothing but "fatigue" and "psychiatric distress" during their interminable CBT/GET "rehabilitation" studies while trying to pass off grey matter atrophy as a result of deconditioning! Reason why we need a tighter, biological definition such as the CCD. I would have liked to have rubbished "fatigue" from a patients point of view but don't want to start a revision war. Besides the consequence of all the former is that sufferers have many different conditions under this ridiculous "fatiguing" umbrella and patients who were representative in 1988 -- whom the research shows are statistically more likely to be severely affected and be expressing immune symptoms -- and earlier may well be a minority now.

I corrected "no inflammation is present" to a more neutral "opponents...maintain" and inserted Canada as a user of ME (though like the UK, CFS is used also) since they hosted the CCD after all (though the Journal of CFS which printed it is published in NY). (User MikeEsp)

Syndrome Nomenclature
I think Syndrome is a better description than organic disorder.
 * The name itself is Chronic Fatigue Syndrome.
 * organic disorder implies knowledge that we do not have:
 * the word organic is implies exclusion of other components which may also be present.
 * the degree of organicity of the syndrome is not proveable, as a cause is not known
 * disorder implies a commonality of cause
 * syndrome is NPOV and implies neither functional nor organic cause.

Deleted Comment
The above comment regarding fataity is contested, particularly since the recent death of Casey Fero due to viral cardiomyopathy. Sufferers do die, such as the MP for Wales John Brymnor who collapsed after being prescribed inappropriate exercise, and a memorial list can be found on the internet.


 * Comment could be reworked for reinsertion. As it stands, it belongs in the discussion section

Reorganization?
I know this is a controversial page, and people are rightly hesitant about large changes, but I have an idea that might help. Right now, the "Etiology" and "Treatment" sections are both just long unorganized lists. The items in these lists mostly correspond to each other, with each item in Treatment tying to a corresponding theorized etiology, but it's very hard to follow the logic as the page is organized now. I'd like to create a new section called "Proposed etiologies and corresponding treatments", and then match up the content accordingly. I would not add or delete any content in this reorganization. Are there any objections? --Arcadian 03:33, 1 December 2005 (UTC)


 * Sounds good to me. I noticed that in the last major re-write, but didn't tackle it as there was so much else to be done. I thought there were more "general" tretment options that applied to most cases of CFIDS, but it doesn't seem to be that easy, sadly. WHile you're at it, it might be a good idea to check against WIkipedia standards on medical articles, and see if there's a standard structure for how these things get presented. (That's another one I didn't tackle.) Feyandstrange 03:45, 6 December 2005 (UTC)

A breakthrough not mentioned
I have had chronic fatigue for years now. I am certainly no medical expert or microbiologist, and I'm new to wikipedia, so I don't feel it's my place yet to edit this article. I've done a LOT of reading online over the years, and I recently found a very interesting article that links chronic fatigue syndrome/fibromyalgia to sinusitis that is specifically caused by staphylococci.

http://www.masmith.inspired.net.au/aus_info/bioscreen/toxic.htm

Having lived with chronic fatigue for many years now myself, I would love to see this information mentioned (at least briefly) under "staphyloccus" and especially under "chronic fatigue syndrome" and "fibromyalgia".

68.35.13.128 05:07, 4 December 2005 (UTC) SH


 * This has been tested and found not to be linked - Arch Intern Med last year. JFW | T@lk  05:14, 4 December 2005 (UTC)


 * I would like to post this information to the Co-Cure list. Could you please provide a full reference? Thanks in advance! AvB 18:12, 5 December 2005 (UTC)

Do you mean the article? Citing Wikipedia JFW | T@lk  18:45, 5 December 2005 (UTC)


 * No, this is about the research that disproved a possible link between CFS and staph infection. I did not want to bother you with it so I tried to find it (on PubMed, the Arch Intern Med web pages and in the Co-Cure archives) but after an hour or so I gave up and decided to ask you to enlighten me. Your response is much appreciated. FWIW, it may interest you to take a quick look at the Co-Cure archives - perhaps a search for posts on research involving Staphylococcus or Staphylococcus toxins. To tell you the truth, as a CFS/ME patient I have become extremely weary of "breakthroughs", and have come to regard the condition as currently incurable Also FWIW, I've been following the development of the Wikipedia CFS article for some time, and I am impressed. One can't be everything to everybody but within the shifting parameters of ME and CFS and the somewhat narrow boundaries of an encyclopedia article this is still no mean feat! Good job everyone.AvB 19:24, 5 December 2005 (UTC)

I may have mixed things up. Chronic sinusitis is indeed more common in CFS patients (and that was addressed in the Arch Intern Med paper) but I have no idea about the Staphylococci. I completely share your frustration with "breakthroughs". They are usually on the level of animal studies and then turned into "news" by unscrupulous journalists. From my reading of several large medical journals it is my experience that in CFS every study gives some results, but they typically contradict each other and make one wonder about publication bias, selective inclusion and other forms of trash science.

Scott, the chap who posted the above, may be Googled for information. Otherwise I have no idea. Mag ik succes wensen? JFW | T@lk  19:55, 5 December 2005 (UTC)


 * So the jury is still out on the staph theory. I think it's good that such theories are being researched, but if past experiences are anything to go by, chances are it will not be helpful for most patients. And yes, there's trash science about, and unscrupulous journalists, and quacks making money off patients they will never be able to help, and that's loathsome. But even the best of CFS/ME researchers tend to get mixed results so there is a growing feeling that the current criteria (1994 CDC aka Fukuda) are inadequate. "Psychiatric CFS researchers" with more consistent results often use their own (looser) version of the Fukuda 1994 criteria. "Physical CFS researchers" with more consistent results seem to be applying their own (stricter) version of the criteria while some UK researchers are even rumored to use an older ME definition in order to select a more homogeneous patient population. Others try to resolve the dilemma by studying CFS patients with additional normal or abnormal conditions, such as sinusitis or pregnancy. It is a bit of a mess. All in all it looks like we're well and truly stuck with the CFS construct, which will morph into the NIDS umbrella over the next few years. I think that a consensus on clearly defined subgroups is long overdue - in my opionion a conditio sine qua non for good "CFS" research. Using the Canadian ME/CFS criteria would probably be a better approach, but I'm afraid that's not the way the world turns. Anyway, thanks for your response. En u ook succes! AvB &divide; talk 22:54, 5 December 2005 (UTC)
 * A big problem is that most people think of this as a disease when it is not. It is a heterogenous syndrome that describes an entire spectrum of patients and likely encompasses numerous different pathologies. DocJohnny 07:11, 6 December 2005 (UTC)
 * Just a note re mixed study results: Reeves et al. recently stated that "To some extent, the inconsistent and often conflicting results from studies of CFS reflect referral bias. Most published studies concerning CFS recruited patients from tertiary referral clinics." (see Chronic fatigue syndrome - a clinically empirical approach to its definition and study ) AvB &divide;  talk  11:23, 21 December 2005 (UTC)

Funny that you should mention that they are usually on the level of animal studies, because I ran across an article about staph found in the blood of dogs with CFS. Hmmm... Unfortunately, I don't remember the link, but I'm not sure it's worth looking at right now. Good point about the hype and publication bias behind "breakthroughs" and such.

Has anyone ever heard of a connection between long-term use of cayenne and recovery from CFS/FM? I doubt there are any clinical studies, but I've heard stories... Yes, yes, that's all they are, unfortunately: stories. I get kind of sick of that, but they always make you wonder.

68.35.13.128 05:18, 6 December 2005 (UTC) SH


 * Dogs with CFS? JFW | T@lk  05:53, 6 December 2005 (UTC)

Cayenne was mentioned as an alternative pain-killer in a book a couple of years ago. I admit I didn't try it. As to the dogs, one of the articles that sparked the interest in staph was from Walter Tarello, a vet in Italy who had cured a couple of horses with CFS using an arsenical drug, thiacetarsamide sodium. I think he went on to study cats and dogs. I'm reserving my opinion. You can read it all here: Co-Cure archives. And please anyone with new info on CFS/FM/etc. - feel free to post to Co-Cure (sorry about the plug but Co-Cure does its very best to provide unbiased info from and to everyone involved and may well be the patient's best friend when it comes to looking beyond the hype) AvB &divide; talk 11:29, 6 December 2005 (UTC)

G93.3
Never have I seen a disease in which the assignment of an ICD-10 code has met with so much feeling of vindication. JFW | T@lk  17:04, 15 December 2005 (UTC)

Differences between diagnostic criteria
Does anybody know if there is a table anywhere that compares the different systems? (If not, I might try to build one and put it in the article.) --Arcadian 17:53, 15 December 2005 (UTC)


 * I'm not aware of a sign-by-sign, symptom-by-symptom comparison table, but before you decide to do one yourself, you may want to get some additional background, for example by reading this article and this article. BTW, which systems do you mean? IMO the following criteria/definitions are all important in their own way: Ramsay/Dowsett ME definitions(s), CDC 1988 and 1994 CFS research criteria, upcoming? newer US criteria, Canadian criteria, and possibly the 1992? Oxford criteria ("biopsychosocial model"). AvB &divide; talk  01:02, 16 December 2005 (UTC)
 * I think we've got all of those in the article in Chronic_fatigue_syndrome, except for "newer US criteria" -- what's that? (I'm presuming you mean newer than 1994.) By the way, I love the second of your links. I think it might make sense to organize the content in Chronic_fatigue_syndrome around the numbers Table 1, specifically "Prevalence data" for Holmes and Fukuda. (To other people here: it's also available at, or here.) I know Holmes and Fukuda aren't the final word, but it would be great to start getting some actual data into this article. And which system do you think should get top billing? I see that we give prevalence to the CDC criteria, but I don't know if that's because of a US-centric bias, or if it really is the most widely used. --Arcadian 02:37, 16 December 2005 (UTC)
 * Re De Meirleir et al.: ...I think it might make sense to organize the content in... - why didn't I think of that?  Definitely agree.
 * Re criteria: Top of the bill, short version: definitely CDC 1994, the other ones come nowhere near. Long version (checked by sampling various sources, e.g. Pubmed and the ME/CFS References section 2002-2005 of this web page):
 * The CDC 1988 criteria quickly gained acceptance, although lagging somewhat in countries like the UK where various ME definitions by Ramsay, Dowsett et al. were being used.
 * The 1992 Oxford criteria for CFS originally gained some acceptance in UK biopsychosocial research settings.
 * The 1994 CDC criteria superseded the 1988 ones including their near-100% adoption rate, also progressively replacing the various ME definitions and the Oxford CFS criteria.
 * Current contenders:
 * The newer Canadian criteria which seem to lean more towards the original ME defs than CDC 1994 (and perhaps even CDC 1988);
 * The unfinished new CDC criteria (which will be a while, CFS wheels grinding exceedingly slowly in the USA). At least the US Name Change Working Group led by Dr. David S. Bell has made its report (which I personally endorse for reasons given elsewhere). FWIW, around 1994 Dr. Bell said that he liked the name Myalgic Encephalomyelitis as it sounded you could die from it. Years before, he had witnessed a small CFS/ME outbreak, an experience that seldom fails to considerably change the perception of the involved doctors. At the time he saw the name as a way to change the general medical perception of the disease. But I'm digressing
 * It should be noted that many studies are based on modified versions of the CDC 1994 criteria (see above). AvB &divide; talk  18:04, 16 December 2005 (UTC)
 * An interesting BMC article by Reeves et al. was published last week (December 15, 2005): Chronic fatigue syndrome - a clinically empirical approach to its definition and study . In an attempt to end "the lack of standardized criteria for defining chronic fatigue syndrome (CFS)" this study defines and tests an empirical definition, finding that it "includes all aspects of CFS specified in the 1994 case definition and identifies persons with CFS in a precise manner that can be readily reproduced by both investigators and clinicians." AvB &divide;  talk  11:23, 21 December 2005 (UTC)
 * The Reeves article is indeed very interesting, but unless the suggested new criteria actually come to be apopted in practice, I don't think it deserves to be mentioned in the article. DanKeshet 21:42, 21 December 2005 (UTC)
 * I should have said that I posted the info here for Arcadian who's looking into the definitions & criteria. (If only because the involvement of Reeves - of CDC whistleblowing fame - might either mean that new CDC criteria are not expected anywhere soon, OR that the CDC will not propose new criteria after all but come out with a stricter version of the existing ones...) AvB &divide;  talk  00:39, 22 December 2005 (UTC)

Links
While I agree that the last link reverted here is of no particular value, I am not convinced Alexa ranking should be our standard for inclusion. --DocJohnny 03:24, 1 January 2006 (UTC)


 * Alexa ranking should be secondary to actual relevance, but when having to decide which "informational" link to include, the site with the highest traffic is apparently more popular and should hence get considered more easily than Jim's private GeoCities home page. JFW | T@lk  04:37, 1 January 2006 (UTC)


 * Sounds reasonable as long as relevance is the primary criterion. --DocJohnny 04:39, 1 January 2006 (UTC)
 * Where Alexa ranking seems relevant, I think it would be best to consider relative instead of absolute ranking. For example, in an article on CFS one might want to use Alexa's list of CFS-related web sites in order of popularity. AvB &divide; talk  14:31, 20 January 2006 (UTC)

Why didn't I think of this before...
The article on Simon Wessely needs more input from people familiar with the debate on ME/CFS and able to state it in NPOV terms. At the moment we have an article substantially written by me (being clueless on the issue) as a replacement for a POV rant from the One Click group, whose refusal to accept any changes to the phrasing led Jimbo to step in and kill it (see ). So I've researched it from medical sources, which of course means the patient POV is almost certainly under-represented, although in an article on the man all that's really required is a decent and properly phrased section on just why the One Click group view him as the Devil incarnate, and a review of whether the medical sources are putting rather more gloss on his career than can be justified. Maybe, maybe not - he seems to be quite prominent and in two big and contentious areas. I'm not looking to rehash the debate, that lives here, but I do want to ensure that the tone is neutral. Anyway, please come on over and have a look. - Just zis Guy, you know? [T]/[C] 18:34, 6 February 2006 (UTC)

Ken Wilber, also suffers from ME-CFIDS-CFS
he calls it REDD though (RNase Enzyme Deficiency Disease)

according to this article of his own website: http://www.integralworld.net/redd.html

I guess we should add him to the "list of notable sufferers"

Psychosomatic Disease
The section on psychosomatic illness as a possible cause of CFS seems very short when one considers the prominence of this theory as an explanation for much of CFS in the medical community. How did we write this long article on CFS without going into that theory in greater depth? A related but not identical theory is that CFS is a somatoform disorder, which means that there is the host of complaints of physical distress and disability without detectable organic disease or dysfunction without implying that this is due to conversion of psychic distress into somatic distress. The term "somatoform" or "somatization" describes the clinical phenomenon while making no assumptions about etiology. In this way the possibility of some unknown underlying organic cause is not discounted and a number of other psychological etiologies that my underlie this phenomenon can be introduced, such as personality disorders. The possibility of personality disorders is especially attractive since it would go a long way toward explaining the intractable nature of the illness and the poor response to most treatments. There's tons of literature on this.

Also, if there is a section on Controversies in this article, referenced in the Psychosomatic section, it no longer seems to exist.

RFabian 16:42, 17 May 2006 (UTC)

Treatments
The article has a laundry list of treatments but no real assessment of effectiveness of treatments is offered. The British Medical Journal] classifies treatments this way, according to the results of randomized clinical trials:


 * Beneficial
 * Cognitive behavioral therapy
 * Graded aerobic exercise


 * Unknown effectiveness
 * Antidepressants
 * Corticosteroids
 * Dietary supplements
 * Evening primrose oil
 * Magnesium (intramuscular)
 * Oral nicotinamide adenine dinucleotide


 * Unlikely to be beneficial
 * Immunotherapy
 * Prolonged rest

RFabian 16:41, 17 May 2006 (UTC)

New researches
It would be wonderful if someone more conversant with the latest research into the biological markers of CFS could add some updates on the subject. There's lots of good recent stuff on genetic markers found in spinal fluid, and the cryptovirus stuff, none of which I'm quite smart enough to read, let alone rephrase here. Also, I've just added [cryptovirus] as a stub; it could use all the help it can get.

I just cleaned up the first half or so of the article for POV and general language clarity. It seems that we're getting a certain amount of redundancy in the various areas, but I'm too foggy today to sort them out any better.

Feyandstrange 02:42, 16 June 2006 (UTC)

Citations Needed Badly.
This article really needs to have in-line citations added. It would really help determine what's "bias" and what's facts. Editors please try to keep this in mind, and consider adding either the "citation needed" tags or actual citations as you add and edit. Thanks.

Feyandstrange 01:23, 18 June 2006 (UTC)

Bias
This is a very, very good article on CFS. In fact, I believe it is one of the best on the Web.

However, I do have concerns with the bias that occasionally creeps in from time to time from those who may have a psychiatric agenda.

Many of the trials done in the name of CFS in the UK are fatally flawed and biased. They are detrimental to our further understanding of CFS, and many have been undertaken by those who continue to follow a psychiatric agenda for its treatment.

Above, prolonged rest is listed as “unlikely to be beneficial”. In fact, in patients’ experience, this is exactly what is needed. Those who recover from CFS through exercise do not suffer from the same condition as those who become worse through exercise, or the CFS sufferer exercising was improving regardless of treatment. It is simple as that.

Carl Stock 07:44, 18 June 2006 (UTC)


 * Personally, I wanted to revert half of your edits because they reeked of patient bias. And I'm a patient!


 * These arguments are precisely why I just demanded citations. If you can cite scientific papers or similar sources to back up your attestations, please do so. Of the many patients I know, including myself, none of us has found prolonged bed rest to be "beneficial"; it does not improve or cure, it is merely an irritating demand of our condition. At the same time, just because bed rest doesn't "cure" doesn't ean exercise is the cure either, and you needn't have a knee-jerk respone assuming such to be the case; the article has not to my knowledge, ever claimed that exercise was more than mildly beneficial to some cases, and harmful to many others.


 * There is no proof of these "different types" of CFS/ME other than in this one coroner's statement and an awful lot of patient hypothesis. If you've got something better, cite it.


 * I recognize and sympathize with the UK's serious issues vs. the psychological lobby, but that doesn't mean that any psychiatric-related treatment is bad, either.


 * I'm too fuzzy-headed to go through this entire article to add "citation needed" tags, let alone fix the citations, except on a very slow basis. But I would really like to see this article move towards citations and fact where possible.

Feyandstrange 07:31, 20 June 2006 (UTC)


 * I understand what you have said, but I am not biased. I have no agenda no and no vested interests, and I only state what is fact.  I do not appreciate those who denigrate CFS making comments and following an agenda.  The comments by one about the death of a CFS sufferer not needing to be mentioned are disgraceful – you should be ashamed.


 * Yes, Wikipedia does require citations at times, but I cannot provide citations for every single issue relating to CFS because I simply do not have the scope to provide them all. Perhaps I should ask for citations.  Please be aware that I have a particularly severe form of CFS.  The line of “How can he be so unwell if he can write all of that?” is not welcome – you cannot understand my circumstances.


 * I also understand the differences between those suffering from individual cases of CFS, but I maintain that many are being diagnosed with the condition I have when they are simply suffering from something quite different. In the future, I hope to be proven right, and I will listen and discuss until that is the case.  There will be a time when treatments like CBT and graded exercise become irrelevant to CFS.


 * My aim is not to pull apart others’ work – there is a lot of good work here – but I cannot stand to see misinformation about this condition being put on the Web. When I can, I will always correct information that is quite plainly wrong.


 * There is a wealth of information published on CFS – or, more applicably, ME/post-viral fatigue syndrome – that predates much of Wessely et al. Much of this pre-Wessely information is disregarded by a lobby that has vested interests in pursuing psychiatric ways.  Unfortunately for followers of this school, there will be a time when CFS is treated with respect, where sufferers receive relevant medical treatment and true compassion, not the cruel and degrading treatment that many receive now.

--Carl Stock 23:28, 25 June 2006 (UTC)

Previous cases where ME/CFS has been recorded as cause of death
The New Scientist article cited at the end of the History entry First official UK death from chronic fatigue syndrome - New Scientist now carries the following Editor's note:

"Editor's note: The original version of this story stated that the UK case was apparently the first in the world. Our thanks to all the readers who pointed out earlier cases in the US and Australia."

The following has subsequently been added to the History entry " Previous cases have listed CFS as the cause of death in the US and Australia." I have added a link to the referenced article [http://www.meactionuk.org.uk/Inquest_Implications.htm Inquest Implications? Marshall E, Williams, M, June 2006] which cites a number of previously recorded cases in the UK, US and Australia.

I note that admin "JFW" has stated on his own JFW | T@lk  page that "CFS as a cause of death is a complete abberation [sic] and should not under any circumstance be mentioned in this article." MEagenda 11:33, 25 June 2006 (UTC)


 * I stand by that statement, and I doubt it should be presented in any other way but as an abberation. I hope you'll forgive my misspelling. One may forget English is not actually my first language. JFW | T@lk  13:49, 19 July 2006 (UTC)

i agree here with jfdwollf's opinion, we are discussing this issue in the german WP. But my question as a non-english speaking person is rather this one: what is the difference between anuric (as used in this article) and aneuric (also used in this arcticle) ? michael Redecke 18:07, 20 July 2006 (UTC)

I have added a small Deaths section, mostly focusing on a recent preliminary study. Strangelv 13:30, 9 August 2006 (UTC)

Continuing bias
As it stands this article is still heavily biased towards the concept of CFS as a valid diagnosis. It is not enough to mention that medical opinion is split on this issue if you do it in a way that implies sceptical doctors (or others) are prejudiced or misguided. That is not being neutral. Neither is referring to an increasing willingness among said to doctors to diagnose CFS as being 'progress' (definitely depends on your point of view)!

Finally, there needs to be a full section on possible psychosomatic causes (as opposed to raising the idea and then immediately dismissing it). In the absence of a generally accepted theory of this syndrome, all theories are equal and should be acknowledged.

These comments do not apply to the head of the article but rather to various lower sections. I could have flagged them separately but I did it like this because it adds up to more of a general problem with the article.

I am sorry if these comments are hurtful to people who have undergone real suffering. I myself have no opinion about CFS. I'm just suggesting that this article needs considerable editing if it is to comply with Wikipedia's NPOV policy. Dawnfire 07:36, 19 July 2006 (UTC)


 * Dawnfire, please refrain from placing tags until you've attempted to (1) edit the article to improve the POV, (2) discuss with other editors on this talkpage. In a recent arbcomm case (here) the outcome was that POV tags should be associated with serious discussion, and are best avoided.
 * Few doctors disagree that CFS exists as a diagnostic entity, but the disagreement is as to its reach, classification, and etiology/pathophysiology.
 * I disagree that "all theories are equal". This is a notability issue. Some theories may fall below the notability horizon and should not even be listed. Notable theories include the RNase L pathway (as held e.g. by prof De Meirleir in Brussels), psychogenic/psychosomatic causes (the King's College group), EBV-related (earlier CDC reports), Lyme-related etc etc. Unnotable ones involve Martians.
 * I do agree that one should not equate increased diagnostic rates of CFS as "progress". A proportion of these cases will have misdiagnosed underlying conditions, and the eagerness to diagnose CFS may lead to harm in the long run if these cases are not identified early-on. JFW | T@lk  13:49, 19 July 2006 (UTC)

Reference Section Organization
How is the reference section organized? Unable to figure out any sort of order I simply added my citation at the bottom of the list usincg a template, but a reorganization to improve consistency may be in order. Strangelv 13:30, 9 August 2006 (UTC)
 * They're not currently organized, and that needs to be addressed. I've taken the reference you added, and tied it to the related assertion, as described at Footnotes. The others I've moved to a section with a different title, since they are not references that tie to a specific assertion. --Arcadian 20:42, 12 August 2006 (UTC)
 * Thank you. -- Strangelv 02:55, 13 August 2006 (UTC)

Add a Research/ History of Research section?
I think it would be a useful if there were a thorough section specifically dealing with research history. This is dealt with sporadically throughout the article. The fact that studies are cited to support many etiologies I think would be very confusing for anyone not having first-hand, or good second hand, knowledge of those studies (as most will not). This method also presents each study as a "stand-alone" failing to show how each is built upon the findings or hypotheses derived from earlier studies. For this reason I think it would be better if the topic of the influental studies were dealt with in their own seperate section, and the etiology(?) section referenced this and the claims the various studies and their authors have made. By more or less sifting through the research to find studies which can be said to strongly support one etiology or another, many important studies are left out which may not so explicitly point to a simple model of etiology (e.g. adrenal exhaustion, etc. ). Furthurmore having subsections on Hyperactive immune system and Hypoactive immune system is suggestive of a contradiction, which may not exist, by treating the immune system as a single entity. If the studies cited in these sections were made to be part of a broader Research section this might be more comprehensible (as the immune system has many levels and branches, so to speak: the studies showing hyperactivation are often of different components than those showing hypoactivation) as the studies would not have to be used as support for a simplistic underactivated or overactivated model.

Lastly I realize "influential" is quite nebulus, however there are a few predominant models of CFS at this time, mal-adaptive cognitive "habits", a bio-psychological model, a biological model which may still be subdivided into due to a continuing infection, due to a triggering infection, not related to an infection, though each of this posits some kind of immune disfunction. A general history of the research of CFS should give the reader a better sense of how each of these present models have developed from scientific studies, as well as the facts and assumptions they stand on when they read the section on "etiologies" dealing specifically with models.

Quick Example:

Research Section: see above

Etiology Section: dealing with different models: and the strengths or weaknesses of each model, e.g. model would be explanatory of many of the research findings previously outlined, model is non-falsifiable, model is based entirely on clinical experience with no research studies, model is based on studies which may select for a less homogenous group of cases, i.e. including disorders which present with symptoms compatible with chronic fatigue syndrome etc. but have distinct/separate biological basis (example: thyroid disorders).

Thanks all!

Low Molecular Weight RNase L
Could someone who's in better shape than I am in right now find a good citable source for this presentation? ...or is there a proper way to cite a presentation?

http://www.immunesupport.com/library/showarticle.cfm?id=7245

-- Strangelv 06:51, 24 August 2006 (UTC)

Sourcing and evidence
This article needs a major overhaul. At present it doesn't represent any school of thought fairly. It lacks the most crucial theories (the mind-based and the biology-based), such as the abovementioned LMW-RNase L pathway that is being heavily investigated. Instead it haphazardly lists symptoms once experienced by a couple of ME/CFS patients and therefore canonised.

There is an added problem that some ME/CFS patients don't agree at all with large segments of the medical paradigm vis à vis CFS. How do we establish which viewpoint (from that community) qualifies as notable? We cannot possibly list every personal view once expressed by each vocal/blogging/mailinglisting patient.

Wikipedia has a number of very strong medical articles. They are relatively easy to manage, as there is generally little disagreement on most of the premises on which the article is built. In this article we need a broad consensus on how to proceed. JFW | T@lk  20:58, 26 August 2006 (UTC)


 * The fairest way to address the patient concerns would seem to be to use patient advocacy groups, such as the CFIDS Association of America, as "source" for the patient side of the disputed areas. However, it's worth remembering that this dispute is not merely doctors vs. patients but doctors vs. other doctors, and doctors vs. medical researchers.


 * I fully agree that statements need to be sourced. However, adding a "cite" tag to only one statemnt in the entire document stinks of bias to me. (ISn't there a box that goes at the top of the page for documents that need to cite sources? I am too fuzzy to dare editing.)


 * THe difficulty with the psychological theories, to me, is that they cannot be proven; yet therapy has also proven ineffective. I can't find the citation right now showing that CFIDS patients actually responded even more poorly than hypochondriacs to placebos - something like that. A "mental" illness such as depression responds at least somewhat to both psychiatric treatment and psychiatric drugs, and CFIDS doesn't (IMO) respond strongly enough to such treatments (any more than, say, a known physical syndrome does) to be called a purely mental or psychological syndrome, especially with so little biomedical research. THere are also strong biomedical markers, such as the spinal fluid markers.  Feyandstrange 10:18, 15 October 2006 (UTC)

My additions and comments, CBT
I've started adding some citations/references -- unfortunately they've not come out in order due no doubt to the lack of my understanding how WP automatically uses them, if anyone can correct this please do so. Perhaps it isn't supposed to matter as long as the citations are consecutive in their immediate section and externally linked.


 * I added a link to "List_of_disability-related_terms_with_negative_connotations" from the Yuppie Flu para.
 * I added a couple more older alternative names.
 * I rewrote the "Post-exertion symptom exacerbation" section as I don't think many are happy with the emphasis on self-imposed exacerbation and there was a lack of consideration of other factors.
 * I added the heart involvement link reference and update the deaths research to the grand total of (AFAIK) one study (someone cites this later on in the "deaths" section). This could also be used for the high suicide risk citation.
 * Added somes stuff to antidepressant section
 * Added a rider to the immune section that both over- and under-active components are now considered extant (yes I know, citation needed, try DeMerlier?)
 * Biggest additions I made to "For underlying symptoms and for lifestyle adjustments"; I rewrote the section to get rid of the fallacy of an "appropriate" or "good" exercise programme for all. I added common criticisms of the GET evidence base with some supporting references (if you want to add more, or sort them, please do), some expansions to "pacing". I added a "caution" subsection because it really is needed.
 * Various other bits I can't remember.

I would question "an emerging branch of medical science called psychoneuroimmunology is exploring how all the various theories fit together", why this exclusive mention? I don't see what "psychoneuroimmunology" has contributed that psychs, neuros and immunologists have. Sounds like a trendy synonym for the biopsychosocial paradigm, given the assertion that opposing theories could possibly "fit together" in a [fallacy of the middle ground].

Some of the proposed etiologies should be exclusions, i.e. they would represent misdiagnoses (which may be the case of course, as misdiagnoses of CFS are rife, but should be labeled as such).

If anyone is considering redoing the CBT section here are some thoughts: Part of the problem is no two people can seem to agree what CBT actually is (other than the hard core Alice Greens who are mostly involved in ME/CFS). The Consensus Overview document makes clear that counselling or adjustment therapy should NOT be mis-named CBT... Interestingly research has shown counselling to be at least as affective, but the psychs look down their noses at that, now why would that be?
 * "Cognitive therapy This should not imply that CFS is a psychiatric condition" This is a silly statement, as usually this is just what it does and what the UK psychiatric school insists, why they vigorously protest ME/CFS as a multi-somatic organically based condition as CBT is "proof of concept" (except where it politically suits them to agree, i.e. publicly). e.g. see http://www.meactionuk.org.uk/Alice_Green_Powerpoint_Presentation.html
 * The majority of conditions treated by CBT are behavioural, anxiety and phobic disorders etc. It's intended for abnormal psychology in normal conditions rather than normal psychology in abnormal conditions (i.e. serious chronic illness). There's absolutely no evidence any more than a small % of sufferers have abnormal psychology, just as in the general population.  If your thoughts are appropriate what can cognitive therapy possibly do?  Suggesting rational people have "faulty belief systems" and are exaggerating ("catastrophising") is not merely patronisingly paternalistic, it's downright insulting.  It's not the ME/CFS patients who need CBT.
 * Of course such is the messianic hype around CBT that to be a sufficiently analytical, open and original thinker to criticise CBT is considered virtually an indicator for CBT treatment, even though some psychiatrists have themselves criticised it... With CBT about to be used to force sick people back to work in the UK, it's become the new witches hunters' ducking stool.
 * There is no evidence base for CBT's use in cancer, despite claims to the contrary: at least nothing in Pubmed, so I wouldn't expect much if anything. Kettle and pot come to mind.
 * Activity increase is usually part of CB(ehaviour)T. This could explain why around 25% of sufferers are made worse by CBT according to survey. Though pro-CBT advocates insist it's because so many therapists are incompetent at carrying it out...
 * Perhaps I've got it wrong and putting a limb in plaster is not an implication of fracture either.


 * Thanks for your contributions. Please use edit summaries more, so someone skimming the history can see what you've been working on. Also don't forget to sign talkpage posts.
 * Your opposition to CBT is shared by many ME/CFS sufferers, but that doesn't justify a long blast against it on the page. It is supported by studies (yes, they are criticised, as are many other much more anecdotal treatments) and has an academic base. Fisking is frownable. Please adhere to WP:NPOV on this, including the "undue weight" clause. Simiarly, generalising against the "UK psychiatric school" is entirely unhelpful.
 * Could you address my point above about reliability of sources? JFW | T@lk  01:50, 27 August 2006 (UTC)

OOps
I am new to this. Never edited a wiki before, so my apologies if I offended anyone by editing the entry without first coming here. I just discovered I should have done that first. Mea culpa. I hope I have not caused too much grief. I did a number of edits. Most of these were minor syntactical clean-ups [opponents to > opponents of] or spelling edits [it's > its].

In a more major sense,
 * I added this under Social Issues

<One of the worst side-effects of the illness is social isolation. Many CFS sufferers are confined to their house and/or bed. They are unable to take part in normal social activity. They are also excluded from workplace and school socialising. Interestingly, the growth of the internet and the improvements of online speeds have been a boon to many people with CFS, especially in the developed countries. The internet has provided access to social contacts, to knowledge and learning, to purchasing and to services, which has improved the lives of many with CFS.>

I am happy for others to edit this, although I would argue that the points in the para need to be made.


 *  ...

In this section, I changed "reflects the belief that" to "reflects an assumption that". This could be seen as hair-splitting, but I think "belief" is a little generous these days in relation to that, given the amount of contradictory information available.


 * ....

I changed "and some chemicals" to "and multiple chemicals" to better reflect the growing data about MCS


 * .....

I thought this sentence appeared to be very difficult to comprehend. I changed it to read "When the illness is coupled with unaccommodating family, friends, colleagues, often due to stigma, and social repercussions such as financial needs, housing problems, the struggle to obtain disability benefits or insurance, discrimination and misconception within the care sector, it can put demands on the sufferer exceeding their safe capabilities" Hopefully that is less difficult, although I acknowledge it's still a thicket.


 * <	The average CFS patient is moderately to severely affected, and may expect to remain so for the duration of her or his life. It is not known whether any patients truly 'recover' entirely from the illness, or merely recuperate enough to regain previous levels of activity.> ...

I would question whether we have the data to make this damning assumption about the "average" CFS patient, and I think it is still to early in our data-gathering to be so pessimistic about prognosis. What we currently know is that some will not recover at all, and some will not fully recover, but can we be so negative as to say to people you " may expect to remain so" forever? I preferrred the more verifiable "Of those CFS patients moderately to severely affected, many may expect to remain so for an indeterminate period, even for the duration of their life." It is a more objective and verifiable statement.


 * < As is common historically with new or unexplained conditions, many people are inclined to believe that a condition with few to no biomedical markers may be, or even must be, psychological in origin.> ...

"few to no" is a little colloquial for this wiki's style, and I thought we could be more defintie about what we are missing, so I changed to: "As is common historically with new or unexplained conditions, many people are inclined to believe that a condition with few or no specific and/or exclusive biomedical markers may be, or even must be, psychological in origin."


 * Last, I added two things: one, a name to the list of personages: Joanna Griggs is a former international swimmer and now national media personality in Australia and her CFS has been well documented. I am however happy to have her place debated, but I think the other addition below is an absolute "must".


 * I added a website of the South Australian ME/CFS Society. The website of the NSW scoiety is already there.  To check out the SA website, go to http://www.sacfs.asn.au/index.html.  This site averages over 70,000 unique visits per year, up to 500 a day, from all over the world.  It has been established for a few years now, and is updated very frequently, often several times a day and certainly more often than weekly.  It provides links to most of the major CFS sites around the world, and has downloads from Canada and Germany that are being accessed frequently.

Again, sincere apologies for getting ahead of myself. I am happy to take a bit of stick for that, but my intentions were honourable :) I have outlined my changes above to help anyone who wants to dispute my entries.

Peter

This article is really silly... but funny too!
Note: The entire conversation below is an attempt at trolling, and should not be allowed on the discussion pages. This is a case of complex vandalism. ◄██  Unit 5   ( Talk )   ██► 17:35, 14 December 2006 (UTC)

Look, I don't want to be inflammatory, but I don't see there's any other way of doing this.

I'm a medical student, and I talk to doctors every day. The percentage of doctors that see CFS as an organic (that is the correct nomenclature, not 'real' as is in the article) disorder is, in my experience rather low (certainly not more than 5%). The rest classify CFS as a somatisation disorder.

Somatisation is interesting because the whole point of it is that those who are susceptible to it don't have the normal capacity to question whether or not something is actually just a product of their minds. They spend hours a day for weeks on end justifying and affirming something to themselves until they are absolutely convinced its organic and not psychological.

This article is a great example to me of how actively somatisers can justify something. I mean, this article is HUGE, and states all kinds of wierd and wonderful things about the sub-classifications of how CFS manifests, and what biological basis there is for this disorder. And has 1 (yes 1) reference to back it all up! lol

I really think that people who suffer from this condition can not be expected to accurately document it, by virtue of the nature of the condition. Despite that, I'm sure that nobody with more universally accepted medical knowledge could be bothered trying to keep this page accurate in the face of what is clearly a very active community of somatisers (who supposedly suffer from 'incapacitating fatigue'!).

Someone needs to add a little to the 'psychosomatic theory' section. Contrary to what this article would have you believe, I would be hard-pressed to find a doctor in the entire hospital I study in who would advocate the theories proposed in this article.

If you think there is no way that CFS could possibly be a somatisation disorder, and you're convinced you have it, you probably do have it... but you'll have to go doctor-shopping to find a dr who'll see it the way you do - as an organic illness.

I'll try to do some further reading on it over the summer and come back armed with some real scientific literature that can be used to create an accurate article.

I'm sorry if I ruffled some feathers, Patch 09:26, 2 October 2006 (UTC)


 * Patch,


 * I respect your comments. However, please let me say this: refrain from making judgments regarding those with ‘organic CFS’ until you have more expensive of dealing with them, and I say that to any medical professional.  I have had severe CFS/ME since 1994, and I have come across many who believe they are suffering from it when they clearly do not.  They need the appropriate support, but not the support that those suffering from ‘organic CFS’ need.  I have also been assessed for any psychiatric conditions – I have none.


 * I do agree, however, that this article does now need cleaning up. However, for anyone – and this includes those who support groups such as One Click, whom I do not support – please try to proceed carefully.  It would be wonderful if we could, in a very articulate and consistent way, explain our different viewpoints, however wrong we think each of us are.


 * I can understand the difficulties faced by doctors who are skeptical perhaps because they are not presented with ‘organic’ cases, only somatisers. However, please remember that there are sufferers of this condition that really do suffer and fight to regain their former health.  I for one do not sit back – I do my best to manage the condition and do as much as I can without causing further problems.  My family physician supports my approach, and he has a great deal of experience of this condition with me and other sufferers of varying degrees, all of whom suffer from an organic form.  My physician has little time for those who seek to effectively punish those suffering from an organic form simply because it does not fit in with their views or the views of certain parts of the so-called “CFS is a psychosomatic condition” community.


 * I respect, also, the fact that research and subsequently the information here must be conducted properly and in a manner compatible with international standards. The simple fact is that you are likely, as you know, to encounter many so-called CFS sufferers who are quite clearly somatisers.  However, the difficulty in providing information on this condition in areas such as Wikipedia is that the whole basis for the existence of CFS for many is still undecided.


 * The problem is that CFS is being used as a ‘dustbin diagnosis’ for all manner of ills, but you and other medical professionals must respect those who are suffering from in particular severe organic CFS who have been carefully diagnosed by medical professionals and where their symptoms present a parlous state. No amount of therapies advocated by medical professionals can get these people out of bed.  You simply must listen to those families who suffer.  I have no need to remain in my current state of being cared for by my parents – I wish to be a school teacher.


 * The issue, also, of some sufferers putting together large amounts of information for use on areas like this should also serve to remind you that CFS is a multisystem, multifaceted disease that is not simple to treat – and certainly not easy to live with. Many sufferers struggle with certain tasks, only to find they can manage something quite dramatic.  May I remind you that this has taken me months to write?  This is not whimsical nonsense put together by parents fabricating or inducing illnesses, or sufferers deluding themselves into a life of convenient laziness; it is the realities faced by sufferers daily.  The choice is to do nothing or find something – which do you chose?


 * We genuinely need good doctors around the world to carefully sift through the various ‘types’ of CFS. Those who suffer from it in an ‘organic’ form need sympathy and support.


 * On the issue of sufferers not being the best to put together an article like this, I disagree, although I accept that somatisers are not best placed to do so. Doctors may see such patients daily, both somatisers and those suffering deeply with ‘organic CFS’, but doctors do not necessarily have a grasp of what it is actually like – the real experiences – for patients and their families.


 * One day, there will come a time when universal tests are available for this condition, and the issues surrounding psychosomatic and organic will be rendered null.


 * I would like to recommend that this article be cleaned up further. How this article is cleaned up is completely open to question, as always, but we must respect those in particular who suffer from severe organic forms of the condition.  Severely affected ‘organic CFS’ sufferers and their families will not tolerate those who feel they can simply rewrite the experience of CFS for their own gain or for dogmatic reasons.  Dogma has no place here, and this article must always respect the actual experiences of the sufferers of the condition(s) we currently know as Chronic Fatigue Syndrome.

Carl Stock 06:49, 4 October 2006 (UTC)

Patch's comment ...don't have the normal capacity to question whether or not something is actually just a product of their minds does not actually fit this reality: I have CFS and I believe it to be entirely psychological (I have no signs of depression or other mental illness). Convincing someone that CFS is entirely in the mind does not in any way cure it. Life would be much simpler for me if it did!

Incidentally, most people are mentally far less healthy than they think because their value systems prevent them from seeing the awful truth (see Families and how to survive them by Skynner and Cleese). And that includes you, Patch! 86.138.126.182 12:09, 5 October 2006 (UTC)


 * I'll admit, I was in a 'flamer' mood when I wrote what I wrote the other day. I maintain its basically all true, but I'll qualify it by accepting the possibility that a minority of those with CFS could have an unidentified biological cause for it. Keep in mind that (medically) CFS is essentially a diagnosis of exclusion, meaning that such things as depression, dysautonomia and hypothyroidism need to be ruled out before they diagnosis of CFS can be made (they are not diagnoses that can be made to support or explain CFS, and are certainly not directly related to its pathogenesis).


 * Also, I never said that those with psychogenic (somatoform) CFS don't deserve the sympathy, support and attention of the community (in particular health professionals such as doctors). Making a diagnosis of CFS is in many ways the diagnostician admitting defeat; there is essentially no effective treatment and there is no definitive diagnostic test. What I was trying to say is that this article spends way too much time talking about the postulated organic causes of a disease for which there is very little evidence is ever organic. In the end, I would agree that there is an organic component to even somatoform CFS (in the same way that there is an organic component to schizophrenia, major depression, and substance abuse disorders), but that doesn't mean it should be classified as an organic disease given our current level of knowledge.


 * Furthermore, in as nebulous a field as this one, it is even more important than usual to assert statements with good-quality references. Surely we can agree that this just hasn't occurred at all satisfactorily in this article??


 * When it comes to explaining how it feels to suffer from CFS, I would entirely agree that sufferers are more qualified than even the most empathetic doctors at describing this. Let's not pretend though that this article is mostly about how it feels to have CFS. What it's mostly about is all the stuff that can reputedly cause it or treat it, with a little bit on its epidemiology and social impact.


 * Finally Carl, what evidence do you have that your CFS is organic? What evidence does anybody with CFS have that it's organic? If there was evidence it was organic, surely it shouldn't be classified as CFS... I want to stress that I'm not necessarily saying it couldn't be organic (although the consensus is would have to be that it's not), just that you can't be sure.


 * To the other Wikipedian (86.138.126.182), as with all things in medicine, nothing is 100%, and it seems logical that a minority of those with any somatoform disorder would be able to accept the concept that it stems from their mind. But my question to you is: Do you actually think you are consciously or sub-consciously controlling your CFS, or do you think there is an organic, neurological explanation for it? Because if your answer is the latter, then you really haven't proved me wrong at all. If its the former, you are saying that you actually understand the emotional conflict or cognitive dissonance within your mind which is manifesting itself physically (and if this is true, then surely you do in fact have something to work on, even if you haven't got an instant 'cure'). I worded the sentence you quoted poorly, and you misinterpreted as a result. The point is that somatisation is the interpretation of emotional (and/or cognitive, but usually emotional) stimuli as a physical complaint from another part of the body. What you seem to think I'm describing is essentially malingering or factitious disorder.


 * And I never said I was mentally healthy, for the record! But I'm not sure how what I'm saying could be described as denying the 'awful truth' in favour of my questionably 'sugar-coated false reality'! Try to be more constructive and cognisant next time...


 * Patch 09:18, 6 October 2006 (UTC)


 * My point was that the fact that people will often convince themselves CFS is an organic illness is not a necessary part of CFS and not the cause of it. The belief it is organic comes from the fact that nothing they try to cure it works, except by chance.  I did not think you were accusing us all of malingering, but I felt that what you were saying was pertinent but not quite on target.


 * My psychological theory has done a lot to make me feel worse (because of the effects of the experiments I have been running on myself) and so does not yet form part of any useful treatment. My opinions on what CFS is are rather tangled and do not really fit the question you asked.  I'm inclined to the view that nearly all nasty mental conditions are the cause of their physiological and biochemical symptoms rather than the other way round.  Perhaps that answers it.


 * On mental health, my point was that the tone of your first post smacked of the rather simplistic view of mental health that seems to be prevalent and which itself I believe to be a sign of less than perfect mental health in the medical profession (you could have a whole blog on that). I do not believe that you personally are usually nutty or that your particular set of illusions are more sugary than anyone else's.  Actually, I suspect that you are actually more open-minded than many of your collegues. 86.129.150.159 12:21, 6 October 2006 (UTC) (ex.86.138.126.182)


 * Firstly, Patch, if you are suggesting that my CFS is not organic, what are you suggesting? I would urge you not to question my condition or indeed its diagnosis.  In any case, I never use the ridiculous term “CFS”, except here – only ME.  My doctor never uses the term “CFS”.  My official medical records state that I have Post-viral Fatigue Syndrome.  My symptoms have been measured against various criteria, and I have no signs of anything other than what we call severe ME in the UK.


 * I have had many tests, both state-funded by the British National Health Service and private ones, which have shown various abnormalities that follow a classic pattern of severe ME not correlated with any other condition. I have seen a psychiatrist, who cleared me of any co-existing psychological conditions, and it was he that confirmed my diagnosis of ME, as well as my doctor.


 * I have a track record as long as your arm when it comes to ‘viral illnesses’, and I have no reason to doubt my diagnosis. I am not your ‘usual’ CFS patient that is a malingering, moaning, whinging hypochondriac that has a lot of hang ups about life in general.  If you saw me in person, as well as some of my friends who also have severe ME, you would soon change your mind on the issues surrounding ME/CFS.


 * I am not a prickly pear, but I do not need anyone to validate my condition, and I will not have my condition or that of my friends’ questioned whatsoever. The organic nature of my condition and that of my friends’ is settled.

Carl Stock 02:10, 7 October 2006 (UTC)


 * Okay, like I said, I'll go away and come back with some references, and I'll change my mind if there's evidence to the contrary. I don't care about whether or not you think you have an encephalomyelitis or whatever. Even you agree that most people with CFS have a psychogenic basis for it, and that's my whole point. The article should reflect that.


 * I'm glad we agree. But as a final comment, I specifically said that CFS is not the realm of the malingerer or hypochondriac. And if you did have a psychological origin for your illness, I would treat you no differently anyway if I saw you as a patient. I'm not making personal judgements, I'm trying to improve an article. Patch 12:37, 7 October 2006 (UTC)


 * That’s OK, Patch. :-)


 * As I said, I do not wish to appear awkward, and I really do not mind responding to questions about the condition I have, especially if the person asking the question does not necessarily posses a great deal of experience of it (and I do not mean that as an insult :-)).


 * I accept that many diagnosed with CFS may actually have some psychiatric aspects that do not correlate with what many might call severe ME/CFS/CFIDS or post-viral CFS/ME/CFIDS and where those patients have no psychiatric problems. The criteria used to diagnose the condition in me did not allow for any psychiatric conditions to be causes.


 * I have come across many who have been diagnosed with CFS when they quite clearly have something else! Perhaps I have something different from CFS...  CFS is not, to many, a single condition anyway but an umbrella term.  So much to go on, and no wonder there is confusion and argument amongst some!  Perhaps my ‘form’ of CFS/ME should be renamed “Sporadic Neurological Immunological Endocrine Impairment Activity Exacerbation Syndrome”! ;-)


 * I hope we can get on with creating a much better article. I understand you need to seek more references and sources, but I would urge you to have in mind that not all is necessarily ‘true’ with references to push graded exercise (GET) and psychotherapy (CBT) for all cases.  There are many CFS/ME/CFIDS sufferers trapped at home who are not seen by any medical professional, and certainly not for research purposes, and it difficult to gauge their clinical picture.  With the confusion and arguments over what CFS really is – it is an umbrella term to many, as mentioned above – no wonder, again, many of us end up having serious disagreements.


 * Carl :-)
 * Carl Stock 00:14, 8 October 2006 (UTC)

I don't know Patch. I see two flaws in your argumentation. You retreat to the fact that there seems to be a consensus. First, what's the worth of a certain consensus for anything? There used to be consensus that the earth is flat (yawn, i know, i'm sorry that i have to do this). There was a consensus that stomach ulcers are psychosomatic(yawn again, forgive me.). I live in Germany. There was a consensus 60 years ago, that a certain Adolf H. is a great guy and needs to be followed. Consensus, nothing.

Secondly, there is pitfall in the thing with exclusion diagnosis. Just how many diseases are there? And how many do we know? And how many can be nailed with tests? You seem to suggest that after everything known is ruled out, it just must be all in the head. Trivially that's invalid. Of course, this thought prohibits itself as modus operandi for a busy physician. Unfortunately that doesn't make it even the slightest bit less true.

Other than that: You can't prove your somatoform theory. You may have a consensus about it, but thats as good as the smoke from a pipe. The best you can come up with to back it is statistics, which can only prove correlation and never causality.

BTW: If you want to come back with evidence for your position, have an eye on the inclusion/exclusion criteria that have been used. If not even Fukuda is used (read "patients with unexplained fatigue" as single criterion), there will be an inhomogenious patient population thus leaving room for psychology, if you however use the canadian consensus, there is not much room for somatoform speculations. Dig in, you will get the picture.

Finally, my personal opinion is, that much, if not all of the cfs controversy is caused by flawed/incomplete communication (be it deliberately or by accident, later more likely). Before I was struck down by an illness (causing constant flu-like exhaustion, a red throat ,ear problems, antibodies to serotonin and gangliosids and low ESR which I feel can be referred to as CFS) I worked as consultant in a huge Telco Enterprise. It was time after time an amazing experience how much time and effort was already needed to sort out matters of only medium complexity among academics. Shortly before problems arose, everybody thought of him/herself as having a clear representation of matters in their mind, which after rounds and rounds of reconsiderations and digging up earlier misunderstandings turned out to be not true.

That's the big problem with CFS. If there were firm criteria for diagnosis, it might not have come to psycho vs. bio. And that in fact was fuelled by hysteria. But then again, what do you expect from people who suffer or have their kids suffer?

Patch, if you really think at this late stage of things, that there is not an organic desease/pathologic mechanism, previoulsy not described, that will be labeled CFS for good and be diagnosed for a certain % of people under this umbrella, take my word for it, you're in for disappointment (Or an "outrage", considering what I diagnose as you current mindset). So are we all, because with the current state of affairs, who knows what will get the label in the end. The umbrella will shrink though. Let's hope it provides shelter and hope for those suffering from what's sometimes colloquially reffered to as the "real deal".

BTW: I wonder what happens if british ME Cases are pressed into exercise by NICE / GET. If its true what has been discovered about diastolic cardiomyopathie, its just a question of time until we bemoan the first casulty.


 * Consensus is important because Wikipedia aims to present a consensus view.
 * I maintain my original comments are accurate, and this article is very poorly written and referenced.

The article assumes both that there is no known cause for the disease AND that there is definitely not a psychiatric cause for the disease. You CAN'T do both those things; it's logically impossible.


 * Utter nonsense. No one is sure of the exact cause of multiple sclerosis (genetic? viral? environmental?) but the amount of biological evidence makes dismissing it as hysteria laughable.


 * Perhaps the article needs to make clearer that the CDC definition is not only heterogenous but has competing definitions, and since ME is a diffuse brain injury anyway, findings are likely to be widespread, yet consistent as long as specific criteria are adhered to. But there are now over 4000 studies in Medline, only a proportion are in psychology and of course none can "prove" that CFS is psychogenic.


 * It's funny how the only people criticising the article for bias recently have been those flying the psychogenic flag...

It mentions non-organic theories as if they were defunct remnants of a naive past, but everybody here seems to agree that there are many people walking around without 'real deal' CFS. Again, you can't say that its known that CFS is a heterogeneous collection of immune-or-other-mediated illnesses without known pathophysiologies and then say that people who have a psychiatric illness that manifests as debilitating fatigue for longer than 6 months and affects cognition don't have CFS.


 * Well you need to read the 1994 definition again then since "debilitating fatigue for longer than 6 months and affects cognition" is not CFS, at least Fukuda CFS (and I think it says something about your POV leaning that this is your personal minimal definition!) And certain psychological illnesses are excluded such as "delusional disorders of any subtype". Unfortunately somatoform disorder isn't, but the older descriptions of M.E. as well as recent Canadian definition make the exclusion of psychogenic illnesses essential.  You're also completely ignoring the WHO classification of CFS, indexed to G93.3,a disorder of the brain, which was again revised only last year I think and much of the developments of the last few years including gene research.  While I don't doubt some primary psychological illness is being diagnosed as CFS you can't say all misdiagnoses are in mental illness. You could equally argue that if someone already fits the criteria for somatisation it is pointless to classify them as having CFS also; having the same illness classified under two names and places doesn't make scientific sense.


 * The underlying premise that this article makes CAN NOT be that CFS is not a psychiatric condition. It needs to be consistent in saying that the cause for it is unknown AND that one popular school of thought is that it has its basis in psychopathology, because that's the truth.


 * I think it's clear that there's that view, but it should also be clear that, just as the CDC are now doing, there's a belated move to catch up with the WHO's opinion. You seem to be strongly inferring that "one popular school of thought" is the *only* consensus school of thought. How many of the doctors where you work are specialists in the field?


 * It ridiculous to argue that while there are no high-specificity, high-sensitivity tests for CFS, it definitely has an organic basis.


 * No, it's ridiculous for you to say that. What are the "high-specificity, high-sensitivity tests" for Lupus?  If you really are a medical student surely you must know there are a number of diseases that still lack a highly specific test (or at least one that everyone agrees on).


 * Naturally if you define a heterogenous population then it's going to be harder to establish a single diagnostic test -- you're willing to admit that it's possible CFS is heterogenous but rather than accept that as a valid reason for poor advances in finding a test (as well as the fact very little research has been carried out in this area exactly) you would conveniently use the lack to dismiss all the other research findings that indicate widespread bodily abnormalities that cannot be explained by disuse and are not found in somatoform disorders). Hmmm, I wonder what the "psychogenic" cause of neutrophil apoptosis and grey matter atrophy could be, maybe reading too much of Patch's WP arguments?  ;-)


 * Single studies point in one direction where other, equally-powerful studies point in the other.


 * "equally powerful", hmmm, as in using a different, broader, definition or "customised" definition and excluding inconvenient participants such as the severely affected no doubt. Sorry but this is a very ignorant generalisation from someone who'se evidently only made a cursory glance at a few studies. In certain areas in particular confirmation is occuring, off the top of my head R-nase-L and carnitine are areas in which negative results are very much in a minority.  The gene activation would be another.  Another would be consistent findings of low T-cell cytotoxocity.  Actally I could go on, but since you've probably decided psychosomatic disease can cause everything from a broken leg to a rainy day, what would be the point?


 * I find it highly plausible that a proportion of people who currently fall into the category of having CFS do in fact have a disease which is organic and undiagnosible at present. Its important that the little information we have about potential genetic, immunological, serological and endocrinological markers is included in this article, but the substantial body of evidence required for something to be accepted by mainstream scientists is nowhere near there yet. Stop attacking a point I'm not making.


 * Highly plausable, what happened to all the great and good doctors where you work who suppose differently? Nancy Klimas seems pretty "mainstream" to me, as does Professor Komaroff (actually participated in one of the CDC definitions). You seem to contend that only wild, peripheral mavericks would assert that CFS, when strictly interpreted, has a biological basis not people who have respected clinical standing and have actually published, often a great deal, in the field.  You seem to be stuck in a 1994 or earlier timewarp, and ignore the fact that use of the CDC definition is a formality for most (on both the pro and anti- physical stance) whereas now many - including the CDC - assume for example, that post exertional exacerbation is indeed a neccessary criteria, and this was reflected in the 2003 Canadian consensus definition.  You can't have both purely phobic avoidance and post exertional exacerbation with as several studies suggest, measurable parameters.


 * You're a moron if you think its okay to write stuff in here that is not accepted by the majority...


 * Ah here come the ad hominem from Dr Rational!  The majority of whom, students like yourself with an obvious bias?  And yes, you'd have to be biased to contend that there's no evidence CFS is not psychogenic.  If you feel so strongly that you could do better why don't you demonstrate so instead of just filling up this page with your whinging. So there are references missing, well your lack of patience with the sufferers who are writing this mainly demonstrates how little you comprehend. I'm only able to come on here a few times a year if that.  The recent CDC press campaign makes clear there's a widespread historical lack of comprehension of CFS. Have you actually read the literature review in the Canadian Consensus Guidelines -- I'm sure there's been a link to it for a while. You seem to confuse that lack of comprehension with consensus.


 * a consensus must be reached.


 * given the obvious difficulties -- a heterogenous population that is no longer considered well defined by the most commonly used (CDC) criteria, that is not easy. Perhaps rather than demonstrating your incensed umbrage at the article you could offer your support for the Canadian definition which recognises the more specific and greater number of physical symptoms than the Fukuda criteria and the full guidelines contain a pretty comprehensive literature review.  The Canadian definition has I believe influenced the latest Australian guidelines though I can't remember what that said exactly and I've lost the link I had for that.


 * Is this what you are looking for?


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


 * Check the right hand column for downloads
 * Bricker 11:10, 4 December 2006 (UTC)


 * Attacking my moral fibre is not an effective way to improve your beloved article either; I'm not setting myself up for a disappointment or an outrage. I've already learnt quite a bit about CFS that I didn't know before, but nothing that I've read shows any convincing evidence that CFS is not psychogenic.
 * I'm out, its Friday night! Patch 11:36, 20 October 2006 (UTC)


 * a bit rich coming from someone who styles themself as "The New Messiah"? Perhaps if you hadn't approached this with such an equally brusque, arrogant manner people would be responding to your comments differently?  If the pro-psychogenics want to demonstrate that it's still possible to be compassionate and sensitive towards sufferers and the difficult situation they (and researchers) face then this is a good opportunity to do so, not charge in like a druken bull in an osteoporosis ward.  I'm sure many of us would like to write a literaturer review but we all have other important calls on our finite strength.
 * MikeEsp 05:08, 27 November 2006 (UTC)


 * Dear Patch,


 * I agree with MikeEsp. Your faux hypocritical outrage at being legitimately called for your woefully ignorant, arrogant, bully-boy behaviour don't impress me either. I mean, 'The New Messiah'...?!? Give me a freaking break. I shudder at the prospects for certain patients who have the misfortune to fall under your 'compassionate clinical care'. (And please, don't feed me any bullshit about 'tough love'.)


 * And don't assume we are all ignorant of how medical science works, about what goes on behind the scenes in the health system. Some of us might actually be quite familiar with most wards, and the path labs, from a clinical professional perspective. Likewise for peer-reviewed databases. Get the picture?


 * I also very strongly suggest you go and read up on 'double bind logic', and 'circular definitional logic', and then reread your intial post and subsequent comments.


 * You may well turn out to be a good or even great medico, Patch, but you still have an awful lot to learn about medicine, yourself, and life before you get there.
 * Bricker 11:03, 4 December 2006 (UTC)

Patch, that in fact sounds like a rather differentiated view. You're right when you are saying:" [you can't] say that people who have a psychiatric illness that manifests as debilitating fatigue for longer than 6 months and affects cognition don't have CFS". But you are just as right when you are saying: "a proportion of people who currently fall into the category of having CFS do in fact have a disease which is organic and undiagnosible at present". And there you have the VERY problem: Packing both groups under the same umbrella will lead to ongoing controversy, contradictory study outcomes, flaming in the www, villification of psychologists, ridiculing of internists, you name it. I mean, seriously: There cannot be a solution for either category of sufferers of "CFS" because unless there are more stringent selection criteria, we will not move forward. Without proper subgroups, or the return of a subfraction to the name M.E. or anything of that kind, further energies and ressources from all stakeholders will go to waste.

pronounciation
Myalgic encephalomyelitis - perhaps somewhere in the article how to pronounce this should be included, cos i dont have a clue.


 * I added a pronunciation but my editing isn't good enough to include accents, if needed. Hopefully someone will improve it if need be, but I think it's understandable. MikeEsp 05:08, 27 November 2006 (UTC)

ampligen article
if you know anything about ampligen, or have experiences etc etc, please add to the relevant article, ampligen.

recent developments in the ME/CFS world
Here's some things to chew on:


 * http://www.cnn.com/2006/HEALTH/11/06/chronic.fatigue.reut/index.html


 * "Chronic fatigue syndrome, once thought by some

doctors to be a psychological problem or even a excuse for malingerers, is a real disease that affects more than a million Americans, the U.S. Centers for Disease Control and Prevention says."

Wow, see that Patch, how can such an authority as the CDC be so wrong eh! ;-)


 * "[...] A distinctive

characteristic of the illness is a worsening of symptoms following physical or mental exertion," the CDC said in a statement."


 * "[...] Several other illnesses have symptoms that mimic chronic fatigue,

including fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis, the CDC noted."


 * http://www.sun-sentinel.com/news/local/southflorida/sfl-1124chronic,0,4198148.story?coll=sfla-home-headlines


 * "If it were called chronic neuroinflammatory disease, then people

would get it," she said. "Up until now nobody's been willing to change the name, but now there's proof [that inflammation occurs in the brain.]"


 * http://www.erythos.com/gibsonenquiry/Report.html

(Some points made in the Report of the Gibson Parliamentary Inquiry, UK)


 * "In the course of our investigations, we were made aware of research that has been done internationally. In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME.  This is despite Parliament recognising ME as a physical illness in the ME Sufferers Bill in 1988".


 * "...numerous studies have suggested that cardiac abnormalities occur in CFS/ME patients... This has serious implications for GET. As such, the Group would recommend that the heart function is examined, especially in the severely affected, before GET is recommended”


 * "...The Group were concerned about the MRC Research Advisory Group (RAG) paper (which) diverted attention away from the need for research into causation and diagnosis."


 * "...The Group feels that patients with CFS/ME, which is often an extremely long-term condition, should be entitled to the higher rate of DLA (Disabled Living Allowance). The sooner there is a biomedical model of assessment for this illness, the better... Until medical opinion is better informed as to the nature of this illness, ME sufferers will have to live with the double burden of fighting for their health and their benefits."


 * "There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is blatant conflict of interest here.  The Group finds this to be an area for serious concern and recommends a full investigation by the appropriate standards body."  [NB these advisors to the DwP often also inform the NHS and appear to have a research monopoly in the UK]

not so recent...

http://www.meresearch.org.uk/archive/graymatter.html

"But the report of the phenomenon by two separate research groups is interesting, more so because (unusually) both research groups have found correlations between loss of gray matter and patients' symptoms."

MikeEsp 05:08, 27 November 2006 (UTC)


 * Mike, it is doubtful to discredit scientists just because you cannot harmonise your own views with their findings. Conflict of interest is a rather easy way to cast aspersion on legitimate scientific enquiry. Please can you concentrate on the issues? JFW | T@lk  15:51, 27 November 2006 (UTC)

First - Get the article name right.
Rename this article simply Chronic Fatigue to reflect the reality. (Even Simon Wessly et al entitled their book Chronic fatigue and its syndromes; note the use of the plural). At present even the article intro gives a misleading picture. Then add a section listing the subtypes. It doesn't matter much that they haven't been coded yet by the committees of ICD or DSM --just as long as it is made clear whether they have or not, and that the sub group has significant support to qualify for inclusion in WP. (eg., fibromyalgia). Also, something like Dr Vance Spence's pie chart titled 'ME/CFS: The classification problem.  might help to add context to the different 'labels' in the spectrum of CF. Finally: As so many other points in the article have gone uncorrected for so long, I suspect this is a sign that professionals who are up to speed on various but narrow aspects of this subject avoid contributing because they do not to want to get dragged into what Aristotle might have described as 'potter against potter.' Who agrees with getting this articles name and structure sorted out?--Aspro 19:06, 27 November 2006 (UTC)


 * No, first you get your facts right. This is an article about "chronic fatigue syndrome", which through it's various definitions has that terminology reflecting the consensus concept of the syndrome's "reality".  If you want to start your own article about CF then no one is stopping you, but I don't think the usual editors will tolerate this article being distorted to suit one person's (or even a few persons) misinformed agenda.  I'd be susprised if there was no backward link from fatigue or CF anyway.  Simon Wessely can title his books Blue Cheese and Wine for all I care, what bearing does one non-peer reviewed title have on this? Basically, none.


 * The World Health Organisation is a far greater authority than Wessely on the taxonomy of illnesses, but even he has admitted, "20% or 30% of the population has chronic fatigue, but these people are not abnormally fatigable." (Ann Intern Med. 2001;134:838-843) It is the latter population we are discussing here under "CFS".


 * You don't seem to have read the article properly as you seem to have missed the fact that CFS is coded by the ICD - and has been since 1992 - CFS is not classified alongside CF in the ICD, they are quite distinct.


 * Fibromyalgia is a differential diagnosis, though it is frequently comorbid as are some other illnesses. Again FMS has it's own ICD coding and likely page on WP.


 * You have to remember there are other experts in the field world wide, and in fact nowadays Wessely is in something of a minority among specialists, though probably still a majority among psychologists. He did not even turn up at the Gibson Parliamentary Inquiry.


 * Aspro, I think you misinterpet what Dr Spence is saying and make an erroneous assumption as to a "spectrum of CF" as anything other than the epistemic confabulation which research struggles against rather than benefits from. If you think ME/CFS is part of a "spectrum of CF" then you'd also have to discuss fatiguing illness in general such as multiple sclerosis and addison's disease as "fatigue" is often a symptom of these diseases, and this is what you are attempting to turn this into a discussion of, one single symptom of fatigue, which it is not, no matter how much it pains you, or Simon Wessely. If not, then there is no point at all to having a name change except to confuse people.  The article is also long enough without having to discuss "fatigue" in all it's manifestations.


 * I will agree that the inclusion of Spence's pie chart would be a good idea though. I would like to spend more time on the article but can't use the computer as often as I'd like.


 * Just what this obsession that the Wessley/CF fans have with "fatigue" is mystefying. It's not accurate, not specific, not measurable and barely definable.  As Dr Byron Hyde says, the introduction of the term fatigue in 1988 has "distorted" our view of things.  The most recent definitions (Canadian and Australian) go some length in overturning the emperor's new fatigue and restituing the concept of a complex multisymptom illness where worsening through exercise is the more important clinical feature. In other words just what the original patients have been saying to their doctors all along before they started being told their problem wasn't what they were complaining about.  I'll see your Aristotle and raise you a Socrates: "The beginning of wisdom is a definition of terms".
 * MikeEsp 05:41, 28 November 2006 (UTC)


 * Steady on MikeEsp; your accusing me of things I am not putting forward.
 * As it sounds your USA based I'll give some background for further comment from that angle:
 * The USA still uses the ICD 9, most other countries have now moved on to ICD 10. (I popped into the medical library today to look the IDC 9 up and they didn't even have a copy any more. The ICD 10 copy was dated 1992) For instance, here is a problem that this creates: just like Fibromyalgia, Myalgic Encephalomylitis/CFS ( G93.3) used to have its own article (see: ME/CFS) but it is a name peculiar to the United Kingdom, Canada, Australian,  New Zealand  and a few other countries. However it seems a European WP (German I think) did not realize this and has lumped Myalgic Encephalomylitis/CFS (G93.3)  into CFS ( F48.0) and 'domino' like this error is slowly propagating across other WP's.
 * You may also become aware that outside the USA 'CFS' often get used as an umbrella term without too much thought. (I 'll avoid expanding on this as it seems to have been visited  too many times before already and so I  can fully appreciate your current state of frustration.)
 * Also, outside the USA CFS (780.71) does not exist anymore as 'unique' coded diagnosis.
 * Although this is a simplified explanation (I haven't even mentioned codes for related conditions) (and as you also rightly point out there are other conditions that have CF as a comorbidity), it should be enough -I hope- to start indicating that it makes it impossible for editors in different geographical locations to contribute towards the same ends without getting confused and undoing -out of ignorance- what others are trying to correct.
 * Therefore, I am not even going to attempt to contribute to this until there is some agreement on how to provide some form of disambiguation to avoid misguided edit wars.
 * My suggestion is simply that: if a common root is adopted (say CF) then all the codes and names that can possibly come under it, can be listed together, with whatever notes as necessary to make clear the national differences of use and meaning. (Any important and clearly defined subtypes within that spectrum can then perhaps have there own pages -- but for now-- one thing at a time.) The master codices  should make this easy, this is one reason why they where devised, so I urge people to stop using their gut reactions and start checking the facts.  By all means, lets have your comments on this, but it might be a few days before I can find the time to get back. --Aspro 20:24, 28 November 2006 (UTC)


 * Apologies if you feel I've misunderstood Aspro, but I still maintain the position I put forward. I'm in the UK actually.  I'm aware of the differing US and worldwide ICD codings, which is why both are given in the box in the article.  CFS is not coded to F48 (though I think CF may be, would need to check), it's coded to G93.3 (which includes ME and PVFS but does not explicitly mention CFS in the tabular veresion; PVFS is usually assumed to be synonymous with CFS).  The F48.0 codings explicitly exclude ME and PVFS. I am not clear on what the "error" is you refer to, the wrong coding of CFS on the German(?) WP article or the failure to mention ME is a term not universally used?
 * I have to disagree that CFS does not have a "unique" coding outside the USA, and this seems perhaps the crux of your misunderstanding. Outside of the USA, CFS is classified to G93.3 only.  In 2001 Andre L’Hours of the WHO Head Office in a letter to the DoH, and in 2004 to Lord Warner, confirmed that it is not permitted for one entity to be classified in more than one place.  This is discussed in the Gibson Report  which references an email from URC secretariat at WHO North American Collaborating Centre confirming that CFS is in the index version at G93.3.  The common confusion may arise because only the tabular version is available online, but there is also reason to believe that certain bodies and/or individuals may have attempted to distort the coding to their own benefit and so not all textbooks and sources can be relied upon.
 * Because of this I can't agree that changing this page to one entitled CF would benefit the subject, but only change it's remit. There is already a disambeguation page for chronic fatigue as well as an article on medical fatigue which people can start off with if that's what they searched for. I don't know how far it's possible to develop disambeguation pages.  I just don't think there can be many countries that can disagree with the existence of CFS even if they may not agree on the nature/causes.


 * Thanks to Arcadian for cleaning up, putting in the table and fleshing out the info box, it looks much neater and helps compress article. I would have rather seen the "notable sufferers" list reduced rather than some of the external links though.
 * MikeEsp 00:36, 29 November 2006 (UTC)