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Wikipedia entry on CFS

Discussion in 'Action Alerts and Advocacy' started by cigana, Aug 31, 2013.

  1. cigana

    cigana Senior Member

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    Hi,

    I remember a while back there was a thread on the wikipedia entry on CFS. I seem to recall that whenever we tried to make changes to make it properly reflect the physical basis for the disease and treatment, someone else would always change it back quickly.
    I've just looked again and it's pretty lame to say the least.

    Does anyone know if we ever got to the root of this? Also, if you could point me to that original thread I'd appreciate it.

    Thanks
  2. Esther12

    Esther12 Senior Member

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    Someone explained that wikipedia isn't interested in 'truth', but in reflecting what is claimed by certain sources. As the CFS article is classed as being 'medical', that means that it reflects the views of researchers, even if their published claims are false. eg: One cannot explain that the claims made by PACE about SF36-PF data is false, even though the paper they cited shows this to be the case, as this is an 'original thought' or something, and wikipedia is only interested if the thought originated from someone with a certain sort of authority.

    It looked like there were some people working hard to keep things reasonable, and point out how misleading some of the claims from 'sciencewatcher' were, it all looked like a real chore to me. Thanks to those involved in maintaining a degree of sanity over there.
    justinreilly, Sean, lastgasp and 3 others like this.
  3. Legendrew

    Legendrew Content team

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    I feel you could say that the PACE trial has caused a lot of controversy and find some links to back that up.
  4. SickOfSickness

    SickOfSickness Senior Member

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  5. taniaaust1

    taniaaust1 Senior Member

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    For a very long time there are a few people who control the CFS article at wiki (I once had good evidence that of those main people, two of so called individuals are actually the same person!!. Maybe that person has even more the two).

    I dont know if it's still going on there but also the things there which people did manage to get into the article (near impossible to do), things which werent supportive of a psych view, if one clicks the referance links to them, someone has made sure that even in those articles that psych stuff was mentioned

    . I even found some of the references for non psych stuff if clicked, sometimes the links which someone has added in were completely unrelated to what they were supposed to support. (so that someone trying to find out more on the non psych CFS stuff if they clicked the links, then no good evidence coming up on it! but rather once again psych views). Was it mistakes with having wrong links put there to back up things? No I dont think so, I think purposely wrong links had been added to the views those of psych school thoughts didnt want there.

    Seriously work with trying to change things in the wiki for a while and you will see there is some kind of conspiratory going on there.
    peggy-sue likes this.
  6. Sean

    Sean Senior Member

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    You want to see one of the unsung heroes of CFS?

    Check out Tekaphor's work on the WP article over several years, and the endless crap he has put up with from 'sciencewatcher' in particular.

    That article would have been an awful lot worse if it was not for Tekaphor's outstanding efforts. I don't know how he persists in the face of that toxic crap.

    (Don't you just love the name' sciencewatcher', a piece of pure spin if ever there was, implying he is independent and science based and anybody who opposes him isn't, when the truth is the complete opposite.)
  7. Guido den Broeder

    Guido den Broeder *****

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    If you want to experience the MMORPG named Wikipedia first-hand, try to create an article on ME. Warning: don't use your real name for the defamation you'll receive stays at the top of Google searches forever.
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Wikipedia is completely controlled and not there for you to read the truth. It has its own agenda. I have tried in the past to make changes in some articles and they always get removed. Especially in articles who defy the "official" version like alternative health or "conspiracy theories".
    vli likes this.
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have edited the article a bit. Yes Wikipedia explicitly states that the truth is not the goal, but documenting what certain sources have to say about things. for med articles they want review articles in journals and textbooks and also newspaper and magazine articles and position statements from prominent organizations in the field.

    They won't take cites to primary sources like medical journal research articles. fortunately there is now a lot more of these sources that are good that can be used. There were basically none a couple of years ago.

    I think editing it is important because so many people get their info from wikipedia, but you are not allowed to recruit people to help on the article per the Wikipedia rules (but you are allowed to pay people to edit articles, which I bet the insurance companies do, although I don't see how you can pay someone to edit without having "recruited" them to do it.) I got "busted" for trying to recruit people on the last thread. Haha, so ridiculous.
    Purple and vli like this.
  10. Guido den Broeder

    Guido den Broeder *****

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    Mr. Sciencewatcher can also be found at times on the unmonitored CoCure forum, where he uses his real name, promotes his book and attacks other posters for disagreeing with his ridiculous views.
  11. Esther12

    Esther12 Senior Member

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    Who is that?
  12. Wally

    Wally Senior Member

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    Some general info. on who may be anonymously editing Wikipedia.

    Here is an article from 2007 discussing how anonymous editing of Wikipedia entries can be monitored. See, http://www.wired.com/politics/onlinerights/news/2007/08/wiki_tracker?currentPage=all

    Here is a the link to a post on the Forum where additional information on who may be editing Wikipedia entries is identified. Unfortunately the article which is quoted in this post is apparently no longer available online. http://forums.phoenixrising.me/index.php?threads/anonymous-editing-on-wikipedia.23478/
    justinreilly likes this.
  13. Kina

    Kina Moderation Team Lead

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    Google 'sciencewatcher co-cure' and you will find an answer.
    Esther12 likes this.
  14. Snowdrop

    Snowdrop Senior Member

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    I just did the google search for 'sciencewatcher co-cure' and I'm not finding any enlightenment.
  15. peggy-sue

    peggy-sue

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    Me neither. I was wondering about a certain psychiatrist in the uk who runs a so-called "Bad Science" site, but he is unable to work out why the PACE trial should never have passed peer review, even actively supporting it.

    He is also behind reporting Dr. Myhill to the GMC for trying to help us. He even boasts about it.
    It's not exactly a reliable site and clearly cannot differentiate between science and pseudoscience.

    He gets a lot of media coverage - even turning up on tv game shows to promote his "authority" on matters "scientific".

    If he turns up, I switch off.
    aimossy likes this.
  16. Valentijn

    Valentijn Activity Level: 3

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    Esther12 and SOC like this.
  17. Snowdrop

    Snowdrop Senior Member

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    Thank you Valentijn. got it.
  18. IreneF

    IreneF Senior Member

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    He says, in response to negative Amazon reviews of his book, that, "Far from being my "opinion", the book was the result of talking to hundreds of recovered CFS patients, and digging through thousands of research papers."

    I'd be interested in those hundreds of recovered CFS patients. Did they have what I have? And are they still recovered?
    SOC likes this.
  19. Esther12

    Esther12 Senior Member

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    lol - was just reading his book. Ah man... it really bums me out to think that there are people like this arround.

    He's like a poor man's Wessely. Wessely without being nicely written, constructing these stories about 'high achievers/burnout-prone', and the amazingly powerful placebo/nocebo, then seasoning it with references to sophisticated understanding of how mind/body interact, HPA responses, adrenalin, etc... with no good evidence for anything. Now that they're pushing to 'low socio-economic status' as a CFS risk factor, doesn't that undermine a rather key part of his model?

    I wonder what Wessely would think of that book. Agree with it? Feel ashamed of what his work had led to?
    Valentijn likes this.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Very interesting. The second article especially, showing that a group of people under one username Yobol were making edits to a wide variety of medical articles and also using automated software to detect and automatically revert changes or deletes of their edits. What group of people could plausibly be doing this. I can only think of three- an insurance company or group of companies, CDC and NIH or drug companies. Probably insurers.
    peggy-sue likes this.

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