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War at Wikipedia

Discussion in 'Action Alerts and Advocacy' started by Levi, Nov 9, 2009.

  1. Samuel

    Samuel Bedbound with NO DOCTOR

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    If a lot of people will be looking at Wikipedia in the next few months, then it would be good to clean it up now, unless there is a reason not to.

    Are you saying it would make it harder to clean it up later, to clean it up now?

    Edit: I am referring to existing pages on Wikipedia -- this was not a comment about Levi's page. IMO existing pages can be cleaned up.
     
  2. Samuel

    Samuel Bedbound with NO DOCTOR

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    Levi,

    No stress or pressure.

    I was referring to /existing/ pages on Wikipedia.


    Samuel
     
  3. fred

    fred The game is afoot

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    Review of GE and CBT research

    People were asking about a peer review or assessment of GE and CBT research - here is some info from Dr Eleanor Stein's clinical guidelines for psychiatrists. She discounts both treatments.

    http://sacfs.asn.au/download/guidelines_psychiatrists.pdf

    8.2 Utility of CBT/Graded Exercise in ME/CFS

    Although Cognitive Behavior Therapy (CBT) is widely recommended for patients with ME/CFS, it is far from clear whether cognitive behavior therapy is helpful for most patients. The rationale for using CBT in ME/CFS is that inaccurate beliefs (that etiology is physical) and ineffective coping (activity avoidance) maintain and perpetuate CFS morbidity (Deale et al, 1997;Sharpe et al, 1996). However, it has never been proven that these illness beliefs contribute to morbidity in CFS. Where correlations do exist it is possible, even likely, that beliefs in physical etiology are correct and that activity avoidance is necessary for the more severely ill (Lloyd et al, 1993;Ray et al, 1995).

    Of the 6 reported studies using CBT in ME/CFS two selected patients as defined by the Oxford (Deale et al, 1997;Sharpe et al, 1996) one using the Australian criteria (Lloyd et al, 1993) and one using the Fukuda criteria with the exception of the criterion requiring four of eight additional symptoms to be present (Prins et al, 2001). These methods of patient selection allow for considerable heterogeneity and inclusion of psychiatrically ill patients with fatigue. Therefore, the results may not be applicable to the average Fukuda or Canadian defined patient. Of the remaining two studies using valid
    selection criteria, one found no benefit of CBT (Friedberg & Krupp, 1994). The only study reporting benefit (improved functional capacity and decreased fatigue) was conducted in adolescents (Stulemeijer et al, 2005).

    It is important to note that no CBT study has reported that patients have been improved enough to return to work nor have they reported changes in the physical symptoms of CFS eg. muscle pain, fever, lymphadenopathy, headache or orthostatic intolerance. Furthermore, clinical experience suggests that trying to convince a patient with ME/CFS that s/he does not have a physical disorder and should not rest when tired leads to conflict in the doctor-patient relationship and poor outcome for the patients. Therefore it would be prudent to await further research before recommending this CBT approach.

    Despite the fact that worsening of symptoms after exercise is a compulsory criteria for diagnosis of ME/CFS, graded exercise programs have often prescribed for such patients. Presumably these recommendations are made on the assumption that exercise will be accompanied by improved aerobic capacity, increased anaerobic threshold and improved exercise tolerance. However, in patients with ME/CFS, neither exercise tolerance nor fitness has been shown to improve with exercise programs. This may be connected with abnormal responses to exercise in people with ME/CFS. The resting heart
    rate of patients is elevated, and maximum oxygen uptake is reduced compared with healthy sedentary controls (Riley et al, 1990;Farquhar et al, 2002;Fulcher & White, 1997;De Becker et al, 2000). SPECT scan brain analysis indicates worsening of hypoperfusion (Goldstein, 1993) and decreased cerebral blood flow (Peterson et al, 1994) after exercise. Decreased cognition (Blackwood et al, 1998a;LaManca et al, 1998), decreased pain threshold (Whiteside et al, 2004a;Whiteside et al, 2004b) and reduced maximal muscle contraction (Paul et al, 1999) are also reported.

    According to the recent Cochrane Collaboration metanalysis (Edmonds et al, 2004) there are five studies on exercise and ME/CFS that are methodologically sound. However three of these studies used the Oxford criteria for patient selection which requiring only fatigue of 6 months duration for diagnosis. One of these excluded patients with sleep disrupted sleep (Fulcher & White, 1997) meaning that virtually all patients seen in clinical
    practice would be excluded. There are two studies using valid diagnostic criteria and both report improved fatigue by self report (Chalder Fatigue Scale) (Wallman et al, 2004;Moss- Morris et al, 2005). Neither of these report follow-ups past 12 weeks. Neither report on core physical symptoms of ME/CFS such as pain, unrefreshing sleep, infective, autonomic, neurological or endocrine symptoms. It is unclear whether these findings are applicable
    to severely ill patients as none of these patients are well enough to participate in studies. It will require more study on a broader group of patients, reporting all symptoms to discern if graded exercise affects the core symptoms of ME/CFS.
     
  4. Aftermath

    Aftermath Guest

    Correct

    This sums up my position exactly.

    The same goes for dealing with clowns like Reeves, Wessley and White.

    The facts are as follows: we don't yet have the conclusive proof that we need on XMRV. The study needs to be replicated. I am confident that this will happen within six months to a year.

    Until then, we need to stop wasting our limited effort when even the best things we write can easily (and rightfully) be refuted.

    Wait for the proof, and then move in for the sure kill.
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    The Weird World of Wiki

    Since at least 2007, the Wikipedia Wessely article page and the CFS article page, and their respective discussion (Talk) pages, have been very closely controlled by UK Wiki Admin, Jacob de Wolff, and former UK Wiki Admin, Guy Chapman (no relation).

    Both pages have a very turbulant history and have frequently been "protected" or "semi protected" from edits, with potential editors directed to thrash out potential edits on the discussion pages, first.

    Dr Jacob de Wolff (JFW) is an NHS hospital doctor and has written openly about his work and his training on his own User pages - so I am not "outing" his identity, here.

    Guy Chapman (Just zis Guy, you know?) (JzG) (and other User names) has been one of the most notorious Wiki Admins. Go check out the Wikipedia Review forums, where you will find sub forums dedicated to the MO of various Wiki Admins, including Chapman.

    It is quite possible to find yourself banned from editing and having your own User pages wiped (including their History logs) even though you have not edited article pages, themselves. I was banned from editing any pages of Wikipedia by Jimbo Wales, in October 2007, following a kangaroo court on the Admin Discussion pages (I keep Mr Wales' email framed in the downstairs cloakroom). My crimes were "Wiki lawyering" and using my own discussion page for alleged "Soapboxing". Even the suitability of my User name was discussed by some Admins, as it matched a website of the same name.

    I was later prevented from adding material to my own User page and discussion page. Several others have found themselves banned or given temporary bans. Some new Editors and non registered users (IP codes displayed) have been wrongly accused of being sock puppets of banned users.

    In disputes over the behaviour and alleged behaviour of Users with whom Admins take issue, anticipate public archived kangaroo courts on the Admin discussion pages from which you will be barred from presenting your case.

    Anticipate also that while "living persons" are protected from defamatory allegations on Wiki pages, this protection is not extended to Editors of Wikipedia.

    In late 2007,* Guy Chapman (who has no personal interest in CFS and ME but for whom CFS and ME has become something of a focus) took it upon himself to contact Simon Wessely to invite him to contribute to the Wessely article page - Wessely was said to have declined.


    *Correction, it was 2006 when Chapman first wrote about having invited Wessely to contribute to the Wessely article page, but late 2007, when Chapman wrote about also having discussed "harassment" with Wessely, on both the Wessely article page and the Admin's board, and also in a private email.


    Chapman also discussed with Wessely, via emails, the issue of alleged "harassment". These exchanges were referred to by Chapman on the Admins' Discussion board and in private emails.

    At the time, Chapman was taking a break from Admin duties. Wikipedia does not permit "original research" and it was never established on what basis Chapman had contacted Wessely, that is, had he approached Wessely on a personal basis (in which case, why was he discussing these exchanges on Wiki) or had he approached Wessely for and on behalf of the Wikipedia Foundation, as a one time Admin, and someone close to Jimbo Wales, and if so, to what purpose?

    At one point, in October 2007, no less than six Wiki Admins were drafted in to hover over the Wessely discussion page.

    One of these was Wiki Admin, Tim Vickers, referred to in the commentary appended**. (I am given to understand that Vickers has also involved himself in Lyme related issues.)

    So tread gently, those of you who might be considering dipping a toe into the very murky waters of Wiki - it ain't a nice place to be.

    BTW: In 2006, Professor Malcolm Hooper's letter to Gresham College had been dismissed by Guy Chapman as "So that's a letter from someone with a grudge..." and "...a furious Hooper with a big nasty peeve..."

    At a later date, several Admins and editors had sought to present the temporary (and accidental) ommission of a Hooper paper from the journal site that had published it, as the paper having been "withdrawn". The relevance of Hooper's academic credentials to the field have also been questioned recently, by Chapman, on the Wessely Talk page.


    **http://en.wikipedia.org/wiki/User:TimVickers

    I am a biochemist with interests in microbiology, tropical diseases and enzymology. I did my PhD in biochemistry at Dundee University in Scotland under the supervision of Alan Fairlamb and am now working in America. I am not a employee of the Wikimedia foundation and my views are my own.
    If anybody has any questions about these topics I would be delighted to try to help. I am usually glad to answer questions and research stuff for articles, after all, favours owed are valuable things.

    At the moment I'm the director of Molecular and Cellular Biology wikiproject and working on bringing as many basic molecular biology, biochemistry and infectious disease articles up to FA level as I can. Even with the help of all the expert editors in the project, this is going to be a very long process, but generations of students will bless our efforts as they plagiarise our text!

    The MCB project is a group of editors interested in improving the quality of Wikipedia articles on molecular life sciences. Since these pages are usually the top Google hit on any biochemical subject you care to mention, this is more important from an academic viewpoint than you might think. Anybody interested in helping out can sign up on the project page. You will be most welcome.


    *Bolen Report
    FEATURE ARTICLE



    A4M Sues Wikipedia - Quackbuster(?) PropagandistsTargeted...
    http://www.bolenreport.net/feature_articles/feature_article077.htm


    Opinion by Consumer Advocate Tim Bolen

    Tuesday, September 24th, 2009

    On August 19th, 2009 the American Association of Anti-Aging Medicine (A4M) filed suit in a New York State Supreme Court against the Wikimedia Foundation, Inc., (solely as a nominal Defendant) and John or Jane Does 1-10. The Complaint Number is 09111917.

    This is a very important case to the anyone involved in health care anywhere in the world.. Why? Because Wikipedia articles about health care have turned Wikipedia into a propaganda machine - with the full knowledge, and cooperation, of the management of both the Wikipedia Project, and the Wikimedia Foundation. Wikipedia is the fourth ranked website on Planet Earth.

    More, the abuse is so obvious, and so extensive, I strongly suspect that the Wikimedia Foundation's claims of "funding by donations" is an outright lie. I believe that a good case can be made that some, if not all, of Wikimedia's so-called "Anonymous Contributions" (the majority of contributions) are, in fact, "Fee for Service Contracts" in disguise, initiated by those controlling and paying for the writing of the articles.

    In short, I believe that Wikipedia is a fraud. Because Wikipedia ranks so high in "hits," links from Wikipedia to a scurrilous website give that site first page positioning on search engines. So, the "Fee for Service" people get a double benefit: (a) They control health care articles on the fourth ranked website in the world, and (b) they get top search engine positioning for the rest of their propaganda.

    What propaganda is...

    SourceWatch.org says: "Propagandists use a variety of propaganda techniques to influence opinions and to avoid the truth. Often these techniques rely on some element of censorship or manipulation, either omitting significant information or distorting it."

    A favorite tactic used by the Wikipedia conspirators is "Name Calling".. SourceWatch.org defines it as:

    "Name-calling is a form of ad hominem attack that draws a vague equivalence between a concept and a person, group or idea. By linking the person or idea being attacked to a negative symbol, the propagandist hopes that the audience will reject the person or the idea on the basis of the symbol, instead of looking at the available evidence." It is similar to "Demonizing the Opposition."

    Floyd J. McKay of CommonDreams.org says in his article "Propaganda: America's Psychological Warriors:"

    "At its root, propaganda plays on emotions, often defying reason and facts in order to reach into the psyche of the audience. Propaganda is a mind game the skillful propagandist plays with your deepest emotions, exploiting your greatest fears and prejudices."

    "Successful propaganda uses elementary tools such as labeling and fear-mongering and repeats a simple message over and over, until it is drilled into the heads of the audience. Once embedded, it often remains long after evidence has discredited it witness the fact that millions of Americans still believe that Iraq had weapons of mass destruction, that Saddam Hussein and al-Qaida were connected, and an Iraqi was among the 9/11 terrorists."

    A good write-up on the subject can be found at http://library.thinkquest.org/C0111500/proptech.htm

    The A4M v Wikimedia complaint says...

    "This defamation action rises out of an ongoing campaign by anonymous editors on the website (http://www.en.wikipedia.org), a free encyclopedia on the internet available to the public, to disparage A4M and its two founders, Dr. Goldman and Dr. Klatz, by posting false and defamatory information about the medical credentials of Dr. Goldman and Dr. Klatz, A4M's scientific qualifications, and the research findings in the field of anti-aging medicine by A4m's founders and members."

    The A4M v Wikimedia complaint also says...

    "Upon information and belief, Defendants John or Jane Does 1 through 10 ("Defendants)" are anonymous editors of the A4M website entry on Wikipedia, located at (http://en.wikipedia.org/wiki/American_Academy_of_Anti-Aging_Medicine), attached to in its entirety as Exhibit A, who have posted false and damaging information, as alleged herein, about Plaintiffs on the web page cited above. The true identities of the Defendants are currently unknown to Plaintiffs, but plaintiffs believe that information obtained in discovery will lead to the identification of each anonymous Defendants' true name and identity."

    So, what happened to A4M on Wikipedia...

    On June 21st, 2006 a Wikipedia Editor named Benbest created the first article about A4M. It was warm, friendly, and accurate. The article stayed that way until late 2007. You can read the original article by clicking here.

    On October 17th, 2008 the assault on A4M began with an edit by an unknown person using the hidden ID 152.132.10.128 adding a misrepresentative sentence claiming "The A4M is not recognized by the American Board of Medical Specialties, which currently recognizes 130 medical specialties in the US, but has tried to establish anti-aging medicine as a specialty." And, there the editing war began between those wanting an honest article and those who wanted A4M presented in the worst possible light.

    For the most part, those that sought to deride A4M did so from a hidden identity. And, when supporters of A4M went into the article to set the record straight one of the A4M detractors (Keepcalmandcarryon) called on the usual trick of getting those people that disagreed with him/her banned permanently from Wikipedia. At that point the article became a simple "hit piece" against A4M, reading like something on the crackpot quackwatch website.

    After the lawsuit was filed, suddenly, a new editor appeared named TimVickers. Vickers is actually not an editor, but a Wikipedia administrator with direct ties to Wikimedia management.. I suspect he was brought in to solidify Wikipedia's legal position. He has kept the "hit piece" article the same.

    If you want to see a history of the Wikipedia A4M article editing wars click here. If you know what to look for you'll find some of the "quackbuster" regulars sliming through the pages...

    This is the case to watch.

    Stay tuned...

    Tim Bolen - Consumer Advocate
     
  6. kolowesi

    kolowesi Senior Member

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    ME Agenda Fred Wiki and CBT paper

    ME Agenda,
    Wow, I had no idea about Wiki. It seems like corruption is being exposed everywhere I look. This is a good thing, though I am feeling disillusioned. Thank you for telling your story. You are very well-balanced to have gone through that and not come across as bitter.

    Fred,
    I wonder if you would copy that post to a thread of its own. It's wonderful that someone actually did that work (I hope I followed it). Maybe it should go in the advocacy section as it has to do with the obfuscation aspect?

    Well, I'm scared I'm not making any sense. Time for bed!

    Kelly
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    [NB: I have added a date correction, in Indigo, to yesterday's comment.]

    During the Wiki Admin board feeding frenzy, where the fates of myself and a colleague were to be ratified, Chapman, who had hitherto been fanning the flames in readiness for a stake burning, ironically, and alone amongst his fellow Admins (though in his case, he was at the time an Admin on sabbatical, being extended honorary Admin status) pleaded in favour of my retaining editing rights. He suggested to the others that I was capable of "rehabilitation" and that there was evidence that I had tried to work within the Wiki ethos.

    He also contacted me backchannel to say that he had written personally to Wales to try and diffuse the situation and in favour of my not receiving a ban. But he was too late, Wales stepped in, had my User page wiped, its History log wiped and my User name added to the Banned Users page.

    At Chapman's suggestion, I wrote to Wales setting out my case.

    Wales' response was, "The tone and content of this email suggests strongly to me that you do not have the appropriate temperament that we are looking for in Wikipedia editors. Your ban from Wikipedia will stand for now. You have to understand: we have an ongoing problem with people pushing an agenda here, and we are putting our foot down to stop it. I do not know what degree of responsibility you have in all of this, nor do I care. I just want you all to go away and leave us alone. Please respect that wish."

    (In the preceding months, Wales and the Foundation had been under pressure following a legal issue over the content on a bio page.)

    Even if it were possible, I would not want to become involved in Wiki again. Leaving aside the disturbing, cultish nature of the Wiki administrative set up, with its pages and pages of "Wiki Wisdom", its rules and its jargon, its puerile "awards" and "stars" and the dubious MO and motivations of some of those elevated to the status of Admins, it is hugely frustrating to see text that you have suggested and for which you have provided reasoned argument and references, accepted as an edit to an article page, only to check back six months later to find that is has all been edited out and replaced with something entirely different.

    I am sure there is much good editing work to be found on Wiki and examples of good Admin practices, too, but the CFS, CFS related pages and the Wessely article page have been steeped in controversy for several years, attract Admins with agendas, pushing their own "POV" and who, when it suits their purpose, are prepared to sling the Wiki rule book right out of the Wiki window. And for one colleague, the repercussions continue.
     
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Wiki tip

    Not only does Wiki take a dim view of User names linked to websites, Wiki does not like "single issue" editors. By this I mean new Users who register a membership only in order to edit a single article or related articles, or if the article page is a "protected" page, who only engage in discussion of potential edits on a single discussion page.

    So if you have a User ID but are not yet active, it's worth generating some cred by also becoming involved in other, unrelated subjects, like editing the stub for naked bog snorkelling or knitting llama wool socks on three pins, or some such.

    Also, being unregistered and editing article pages or discussion pages will display your IP code. If you have a static IP and you are blocked, either temporarily or have a permanent ban slapped on you, your static IP will be logged.

    If you have a dynamic IP and you are blocked - a whole range of IP codes within the range that your ISP uses will also be blocked, which then creates access problems for others using the same ISP.
     
  9. starryeyes

    starryeyes Senior Member

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    If only I had the energy to take Wiki on. I've read some of the History of the edit battles on the CFS page and I just shake my head in dismay. I don't remember now how I got there and maybe you can't anymore but it was a word-for-word back-and-forth war between CFS patients and the Wiki Nazis.

    As soon as good edits were made they were taken out. Thank you so much for trying your best to remedy this and sorry you ended up on the firing line, ME agenda.

    tee
     
  10. Advocate

    Advocate Senior Member

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    This is so discouraging! You know so much, and you couldn't edit Wikipedia--that doesn't leave much hope for the rest of us. But thank you, thank you for trying.
     
  11. Koan

    Koan Be the change.

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    Something else...

    If you google: wiki war cfs, the second hit you get is this thread.

    So, discussions about wiki are very public. An editor with an opposing view can find any editors who may post here in about a second and a half without even knowing about the existence of this forum.

    Future threads might best have creative titles :)
     
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Also be aware that Guy Chapman has said, on the Wikipedia Wessely Talk page, that he has been monitoring (at least one) ME discussion board.

    Suzy Chapman (no relation)
     
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    (Former Wiki Admin) Guy Chapman did not hint at which ME discussion boards, forums or social network sites he might be monitoring (though I imagine, given his focus, these are likely to be UK boards) or whether these are public archive boards, lists or forums or platforms where membership is required to view the messages.

    Unless a List owner is very vigilant, one never knows who might be lurking or posting under a pseudonym.

    But in my experience, the gals and guys who practice this MO, sooner or later make a slip.

    Suzy Chapman (no relation)
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    UK Times articles and opinion piece on decline in Wiki editors

    Five articles/opinion on Wiki in today's UK Times

    http://technology.timesonline.co.uk/tol/news/tech_and_web/the_web/article6930546.ece

    November 25, 2009

    Wikipedia shows signs of stalling as number of volunteers falls sharply

    Murad Ahmed, Technology Reporter

    ----------------

    Leader page

    November 25, 2009

    http://www.timesonline.co.uk/tol/comment/leading_article/article6930419.ece

    Who Knows Best?

    Wikipedia is alienating its editors as it strives to safeguard its credibility

    -----------------

    http://technology.timesonline.co.uk/tol/news/tech_and_web/article6930560.ece

    November 25, 2009

    Wikipedia: an anti-intellectual venture to its core

    Oliver Kamm: Commentary

    -----------------

    http://technology.timesonline.co.uk/tol/news/tech_and_web/article6930656.ece

    November 25, 2009

    Shifting sands offer poor foundation for a dependable truth

    -----------------

    http://technology.timesonline.co.uk/tol/news/tech_and_web/the_web/article6930641.ece

    November 25, 2009

    Five right, five wrong and five just plain weird
     
  15. George

    George Guest

  16. starryeyes

    starryeyes Senior Member

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    Thank you George and ME agenda, hurray! hurray! :)
     
  17. Dolphin

    Dolphin Senior Member

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    Wikipedia

    I use Wikipedia a lot so when I saw they need $10m a year and were
    appealing for money, I gave a little (8 Euros) (I have of course also donated to aboutmecfs.org before as I think it is a great site).

    But I didn't waste the chance to make a complaint of sorts about Wikipedia:

    ==========

    I might have given more but I think the coverage of Chronic Fatigue
    Syndrome (CFS) is biased. The editors seem to have been taken in over the
    hype of CBT/GET - much fair comment is not being accepted

    http://wikimediafoundation.org/wiki/Special:ContributionHistory/en
    22:35, 29 December 2009 (that's GMT I think or are we one hour off that at the moment - same time zone as London anyway).

    ========

    Quite a few people have told me (or I have read them say on lists/forums)
    that they tried to add or alter the information but they were not
    allowed/it was changed back. Dr. Ellen Goudsmit highlighted changes she made which were all referenced and added information - a few hours later, the information was deleted and some studies e.g. on pacing, energy envelope, etc were then not mentioned again; and generally I have read a lot of people say they are unhappy with it.

    Just in case anyone else is donating, might be worth complaining at the
    same time.
     
  18. Dr. Yes

    Dr. Yes Shame on You

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    Hey Tom,

    You've probably already seen this thread, but in case you didn't take a look (you're actually mentioned on it somewhere!):

    http://www.forums.aboutmecfs.org/showthread.php?t=1021&page=3

    The page linked to above has some very interesting posts by ME Agenda about Wiki internal politics (including apparently soliciting Wessely's input) and getting banned from contributing herself.

    Disturbing, but predictable.
     
  19. Dolphin

    Dolphin Senior Member

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    Thanks Dr. Yes. Hadn't seen that thread - I've only dipped in and out of the forums here.
     
  20. Tammie

    Tammie Senior Member

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    While I applaud your desire to give charitably, Tom, and the comment that you made to Wiki re their CFS coverage, personally I absolutely will not use Wikipedia anymore. Prior to the CFS issues, I found a few errors on other Wiki pages, but had continued to use the site, just keeping in mind that it is not always entirely accurate. However, after I saw waht they were writing re CFS and heard about the attempts made by patients and doctors to correct the info (and the subsequent results), I decided to boycott the site. Too many people take Wikipedia as absolute fact and I will not support anything that is helping to spread bad info about us to so many people.....esp when they remain unrepentant.
     

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