The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Hurrah! Wikipedia me/cfs entry finally changed for the better

Discussion in 'General ME/CFS News' started by beaverfury, Jan 6, 2013.

  1. beaverfury

    beaverfury beaverfury

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    I put this on my blog first so as not to clog up the forum with more threads, but what the hell!
    On further reflection i think this is a morale booster after a battering 2012 for the me/cfs community! Sure, we're still sick, but how people percieve our sickness matters a lot.

    I've been waiting a while for the wiki article to change. I think the new entry is much more unequivocal about the seriousness of me/cfs and gives less weight to the psychosocial side. Thats how i see it anyway.

    Considering that wiki is the 4th biggest site in the world and is many peoples entry point to information, this can only be a good thing.​
     
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  2. alex3619

    alex3619 Senior Member

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    Porting my comment on the blog to here: If the wikipedia is starting to show a little balance, and this does appear to be the case on first reading, this is a very positive sign. It may mean that those promoting psychogenic views are starting to accept and evaluate the biomedical evidence. The control over the wikipedia entry has been strict. I sent out an alert on this years ago on Co-Cure. Is this yet another manifestation of the change we see in rhetoric from the likes of Simon Wessely and Peter White?
     
  3. alex3619

    alex3619 Senior Member

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    Having said that this is a positive sign, I am reminded of an RPG game that I used to play. In the rule book was a drawing of a small child, carrying a rattle or mirror or something. A nice looking man was walking toward the child but this was really a mask hiding a horrific visage. What the big bad masked man did not see was the small child was holding an automatic pistol behind its back.

    Things are not always what they seem. This is hopeful, but real change requires effort over time.
     
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  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Erm ? What changes exactly ? I can't see anything substantial in the history that shows more than the regular small scale back and forth activity ? Certainly there's been a long term 'improvement' , probably the result of taking many small steps so as not to frighten the natives, which is really the best way to seek change on Wikipeda.

    IVI
     
  5. alex3619

    alex3619 Senior Member

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    Wikipedia several years ago was so counterfactual and so full of spin that I sent a global alert out to advocates. Almost nothing in it had substance or was supported by objective evidence. It was a deep propaganda piece on biopsychosocial treatments. During this period there were NO changes to correct things. Any changes were reversed within hours.
     
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  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don't think there's any reason to see any change on Wikipdia as representative of changes elsewhere, nor would I characterise the control of the CFS article as exceptional for a 'controversial' issue. Many articles are 'policed' by individuals who are concerned that their favoured perspective is maintained, and I would say that was more of an influence on the CFS article than any 'corporate' Wikipedia control. In the case of the CFS article editor Sciencewatcher has been an active 'participant' over several years, and has a 'particular' view of CFS: see http://en.wikipedia.org/wiki/User_talk:In_Vitro_Infidelium

    Wikipedia is best viewed as a MMORPG where persitence and gang culture allow latitude in gaming the system. It is impossible to make extensive and rapid progress without making alliances, and the most important alliances are with those who play the game most frequently. Without alliances one has to operate strictly within the 'rules' and only seek small gains. It can have some entertainment value - and there are certainly well intentioned and well informed editors and administrators who makes the aim of creating an meaningful encyclopaedia not wholly unachieveable - but there are plenty of game players with whom one has to learn to deal. It can get a bit tedious after a while.

    IVI
     
  7. beaverfury

    beaverfury beaverfury

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    Damn. You made me go over the wiki history to justify my thread title....Which i can't!!

    Mine must have been a highly subjective reading because in essence it hasnt changed that much.
    41 changes since december 1st 2012, but as you say, nothing substantial.
    I thought the general tone had changed but on reading past transcripts it's essentially the same.

    You would know, IVI, because ..you contributed to the pages, apparently ??

    I must be on drugs. How do i bury this thread?
     
  8. peggy-sue

    peggy-sue

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    I'm afraid I'm just waiting for the psychos to come along and change it back agian.
    I've edited it a few times myself...
     
  9. beaverfury

    beaverfury beaverfury

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    Rather than tell chicken jokes to save face, let me introduce you all to some little known and long forgotten me/cfs symptom patterns from the 2004 me/cfs wiki page-

    The Yo-Yo pattern

    The Yo-Yo Pattern happens when people work very hard at some activity, but only on good days. This leads to worse symptoms which prevents them from working for the next few days. When they feel better, they work extra hard to make up for the bad days — or just because they're so excited to feel good — but this leads to them feeling bad again...

    and...
    The downward spiral

    The Downward Spiral happens whenever feeling bad puts a patient in a situation that makes them feel worse. This is similar to the yo-yo, but in the downward spriral, people don't have time to recover on bad days. Here are some examples:
    • A person works very hard one day at work. This makes them feel worse, which leads to them not working as effectively. In order to catch up, they work harder, which leads to them feeling worse...
    • A person loses their appetite when they don't sleep well because they're so tired, they don't realize they're hungry. Then, they don't sleep well at night because they wake up very hungry...
    • A person does not feel well, and therefore cancels a date with a friend. This leads to them feeling depressed and sleeping poorly, which leads to them cancelling more dates...
     
  10. The psychobabblers do not want to admit they were full of sh*t
    not just wrong but outright bigotted, inhumane swine

    but they'll creep and they'll cringe and pretend and act nicey-nicey as their rug is pulled out under their feet
    not for decency, not for compassion of the sufering, no, but purely to save their own moribund assholes
    hence for osmetime you can see they've been building "wiggle room" to avoid being exposed as responsible for terrible abuses, and the prison cell
    Very old story :/

    IVI has good point there in last part, it's why I generally loathe "society" in it's effect (not individuals mind you, it's a group/cultural problem that drives me nuts)
    the "group", the "clique's acceptable boudnaries", constantly demanding a limiting of effective action, denying issues or "difference", has been a devastating pestilence on Mankind, worse than any plague :(
     
  11. alex3619

    alex3619 Senior Member

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    To really check back you might have to go back through 500 pages/entries? of history. I have not been following it lately, as the few times I rechecked in the last several years it was still a massively distorted entry. So I do not know when change happened. My advocate alert was in 2007 or 2008, or perhaps early 2009, though I don't think it was that late.

    I recall earlier wikipedia pages that were far more accurate than those in 2008 or so. When I sent out my alert, there was more written on dubious literary commentaries like Hysteries than on biomedical approaches.
     
  12. beaverfury

    beaverfury beaverfury

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    I just went through a few pages from earlier years, 2002, 2004, 2006. They were surprisingly sympathetic.

    Something changes around 2008. Wiki me/cfs entry dec 2008"
    "Psychological factors

    The success of certain treatments suggests CFS may be perpetuated when patients fixate on a physical cause of illness, their symptoms and when exercise is avoided. Lack of support or reinforcement of illness behavior from social networks can also delay recovery,[36] as can conflict with doctors who insist on psychological causes over a patient's objections. High scores of neuroticism and introversion on psychological tests have also been associated with a predisposition to developing CFS.[37]

    Different trials of CBT use different measures of outcome, and some studies report higher success rates (as high as 70%[54] and 73%[55]) than those reviewed by Cochrane. One observational study suggested that CBT could facilitate recovery in 23% to 69% of the patient cohort depending on the recovery criteria used.[56]
    In a review in The Lancet, Dutch researchers state that while CBT is not necessarily a cure for CFS, in some studies it results in improvements in about 70% of patients. They stress that, with the current understanding of the biological nature of the brain, a psychological CFS model does not preclude neurobiological components.[37] The authors of the Australian 2002 clinical practice guidelines state that speculation about psychogenesis based on the outcome of CBT trials is unwarranted.[57]'
     
  13. beaverfury

    beaverfury beaverfury

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    No great surprise there i guess. Just reflects the increasing influence of psychiatry in the field around this time.
     
  14. Firestormm

    Firestormm Guest

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    Ok. I plead being a dumb-arse. What exactly and where on Wikipedia am I meant to be looking at/for? A linky would be nice. Thanks :)
     
  15. Sam Carter

    Sam Carter Guest

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    Two linkies, here (for the article) and here (for the history). ;)
     
  16. Esther12

    Esther12 Senior Member

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    Wasn't Wessely in contact with Jim Wales around then too? I know that Wessely has done work with wikipedia since.
     
  17. Firestormm

    Firestormm Guest

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    Muchas Gracias Sam and good to see you posting :)
     
  18. Esther12

    Esther12 Senior Member

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    PS: Thanks to all those trying to keep the CFS page reasonable. For a lot of medical staff, wikipedia is the first place they look when they get a patient with a diagnosis they are not up to date with (it's scary, but I've been told this by a few people working in the NHS edit: maybe I shouldn't say a lot when it's only 5 people... but that's out of 6!), never mind the general public, so what wikipedia claims is really important.

    I've really not spent much time on wikipedia, but what I saw did make me think that wikipedia is illustrative of some of the problems which surround CFS, in that there seems to be a commitment to a deference to authority, rather than 'truth'. It seemed that peer reviewed papers are to be respected, and pointing out specific ways in which they are poorly done can be dismissed as original research - for an area like CFS where there's a lot of poorly done research, this can be very difficult. Also, patients tend not to be able to express their views in the venues which wikipedia uses as sources.
     
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    All true. Wikipedia is Rule Based, but 'gameable' - however in terms of permitted gaming, some are more equal than others, and more equality is conferred by the amount of time you commit to the grand 'project' that is Wikipedia. The Rules of Wikipedia are in the main logical and certainly 'Not Truth' is a basic dictum - what goes into Wikipedia has to come from a limited type of resource - and in terms of medical articles this is very heavy prescribed. Sorry I can't face dragging out the prescriptions right now, but it does make sense, at least in the limited terms of Wikipedia.

    IVI
     

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