Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 1

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

message: 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)
replies: text: Would anyone have a problem if i went ahead and put it up?
thanks
garrett
 -- Gdubs12345 05:28, 24 August 2006 (UTC)

text: 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)

text: You'd need to demonstrate some objectively provable authority. Just zis Guy you know? 19:37, 27 August 2006 (UTC)
thread_title:  Need feedback on link i wanted to add to External Links Section 

message: 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)
thread_title:  The article is good. 

message: Are all the references that were recently added actually sources from which information in this article was derived?  If not, I propose they be deleted.  They may be good sources of information (I don't know either way, as I haven't read them), but I'm under the impression that the "References" section of any article is for the specific purpose of corroborating claims made in the article itself.
Icarus 06:04, 12 July 2005 (UTC)
replies: text: Agree. Sometimes "references" are added during driveby shootings (people trying to get attention for something by slamming a "reference" into an article). JFW | T@lk 11:16, 12 July 2005 (UTC)
thread_title:  References 

message: 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)
thread_title:  Nomenclature section 

message: 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)
replies: text: 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)

text: 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)
thread_title:  65.31.217.27 and POV 

message: 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)
thread_title:  &amp;quot;appears to" 

message: 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)
thread_title:  Organic Brain Disease 

message: 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)
thread_title:  Medicaljournalist 

message: 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)
replies: text: 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)
thread_title:  Organic 

message: 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)
replies: text: 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)
thread_title:  Medicaljournalist 

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

text: 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)

text: 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)
thread_title:  Comorbid 

message: 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)
thread_title:  Caused by mono, et al 

message: 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)
replies: text: 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)
replies: text: 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)
replies: text: 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)
thread_title:  Metal allergy testing 

message: 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)
thread_title:  Yep, that's my take... 

message: 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)
replies: text: 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)
replies: text:  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)
thread_title:  Overall editing and updates 

message: 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)
replies: text: 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)

text: 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)
thread_title:  Edits and spelling standardization 

message: 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)
thread_title:  Current state: much improved 

message: 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)
replies: text: 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)
thread_title:  Reorganization? 

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

text: 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)

text: 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 incurableAlso 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)

text: 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 ÷ talk 22:54, 5 December 2005 (UTC)
replies: text: 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)
replies: text: 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 ÷ talk 11:23, 21 December 2005 (UTC)

text: Dogs with CFS? JFW | T@lk 05:53, 6 December 2005 (UTC)
thread_title:  A breakthrough not mentioned 

message: 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)
thread_title:  G93.3 

message: 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)
replies: text: 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)
replies: text: Sounds reasonable as long as relevance is the primary criterion. --DocJohnny 04:39, 1 January 2006 (UTC)
replies: text: 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 ÷ talk 14:31, 20 January 2006 (UTC)
thread_title:  Links 

message: 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)
thread_title:  Why didn't I think of this before... 

message: 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)
thread_title: Psychosomatic Disease

message: 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)
thread_title: Treatments

message: 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)
thread_title: New researches

message: 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)
thread_title:  Citations Needed Badly. 

message: 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 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)
replies: text: 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)
thread_title:  Previous cases where ME/CFS has been recorded as cause of death 

message: 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)
replies: text: 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 Wikipedia: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)
replies: text: Thank you. -- Strangelv 02:55, 13 August 2006 (UTC)
thread_title: Reference Section Organization

message: 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)
thread_title: Low Molecular Weight RNase L

message: 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:
* "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.
 
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? 
: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)
thread_title:  My additions and comments, CBT 

message: I am entirely too tired to deal with people like the above medical student (hint to that one: do the reading first next time), or to re-edit this article yet again. I'm going to paste in here a large collection of relevant medical papers/citations which are mostly not already in the article; if someone would like to do cleanup and citations on the article using these, that would be lovely. 
Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome  (a hot candidate for the 'biological proof' as well as for a diagnostic test)
Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. Cortisol levels in CFIDS persons lower than in controls, depressed persons much higher than controls. 
24-Hour Pituitary and Adrenal Hormone Profiles in Chronic Fatigue Syndrome 
Fatigue Syndrome – A clinically empirical approach to its definition and study All about the definitions. 
Mechanisms underlying fatigue: a voxel-based morphometric study of chronic fatigue syndrome ... found that patients with chronic fatigue syndrome had reduced gray-matter volume in the bilateral prefrontal cortex. 
Disorder of adrenal gland function in chronic fatigue syndrome Chronic fatigue syndrome (CFS) is defined as constellation of the prolonged fatigue and several somatic symptoms, in the absence of organic or severe psychiatric disease. However, this is an operational definition and conclusive biomedical explanation remains elusive. (I quote that paragraph because it sums up so much of this argument.)
Primary healthcare provision and Chronic Fatigue Syndrome: a survey of patients' and General Practitioners' beliefs Results from the study indicate that the level of specialist knowledge of CFS in primary care remains low. Only half the GP respondents believed that the condition actually exists. (Just for the medical student above. SOmewhere I saw a stat which indicated that the general public is actually more willing to believe in CFS than doctors are.)
The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta-analysis. In contrast with the conventional wisdom, the placebo response in CFS is low. Psychological-psychiatric interventions were shown to have a lower placebo response, perhaps linked to patient expectations.
The problem with the somatoform argument (in addition to the last link) is thus: If you say it's a flavor of somatoform hypochondria or depression, biomedical research loses funding. CFS has next to no funding for research as it is. THe truth is that we don't know - and "we don't know" does not equal "hypochondria", no matter how much some people prefer an easy answer to problem patients.
IT's also worth noting that the CBT people are a bright young field who believe they're the answer to a lot of things - and if they can convince insurers et al that they are the best and most cost-effective treatment for something, they'll create more jobs for themselves. That appears to have worked out quite licely in the UK, with National Health funding for CBT increased after some papers showed slight improvement in some patients. (WHo gets worse after therapy?) The CBT lobby is as accusable of bias as the CFS patient lobby, and most patients can't commission studies. 
A handy list of relevant papers is also available at the CFC's CFS publications site.
Feyandstrange 11:29, 15 October 2006 (UTC)
replies: text: Oh man, I am coming back to this... Patch 11:39, 20 October 2006 (UTC)
thread_title:  References 

message: 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)
thread_title: pronounciation

message: 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)
replies: text: 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)
thread_title: recent developments in the ME/CFS world