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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PatientsLikeMe Connection to Simon Wessely, at CFS Central

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Feb 18, 2011.

  1. Mindy Kitei

    Mindy Kitei

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    SIX DEGREES OF SEPARATION, at CFS Central

    PatientsLikeMe is doing a study on "illness perceptions" and ME/CFS; in other words, how one's "perceptions" cause the illness. Eleven hundred patients are participating in this study conducted by New Zealand scientist Dr. Keith Petrie.

    Petrie believes ME/CFS is psychological and has done several studies with Dr. Simon Wessely.

    The director of research and development at PatientsLikeMe is Dr. Paul Wicks, who trained at King's College, where Dr. Simon Wessely works. In addition, Wicks has been affiliated with psychological proponents of ME/CFS.

    Patients can withdraw from the PatientsLikeMe study at any time. If enough withdraw, the study dies.

    The CFS Central post details how to withdraw and how to let other PatientsLikeMe participants know what the study is all about.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com
     
  2. Esther12

    Esther12 Senior Member

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    Thanks Mindy. I think Dolphin started a thread based upon these concerns too. It's a shame if this tool is being used against us... or maybe patient's answer will utterly disprove their theories!
     
  3. Francelle

    Francelle Senior Member

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    Victoria, Australia
    I did this survey a week or two ago and unequivocably ensured that I made clear that I had NO depression, NO anxiety, and NO apprehension about the future. Just need to think about each question, what is behind the question and what they are really asking!
     
  4. Enid

    Enid Senior Member

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    What on earth are they trying to get at - "perceptions" cause illness. Cunning lot.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Mindy,
    *two thumbs up, you go, gal!!* :thumbsup: :thumbsup:

    yeah one of the best ways we can deal with these psycho-gobber-gabbers is to "scorch earth" the bastards!
    Give them no sustenance, no support, no aid, no help, no info, no input for their cockamammy CRAP!
    They are happy to get fat and rich from fraudulent pseudoscience at OUR cost and denying us step by step, any chance of a real cure, so remember folk: TO HELL WITH THEM!
    oR rather, send 'em to Coventry ;)

    "HELL! NO! WE WON'T GO!"

    ,!,, to the psychobabblers!
    and big hugs for Mindy! :D
     
  6. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Just to add to the debate on scorched earth tactics, if most of the patients in the PACE trial had dropped out, there would be no PACE trial. The sad truth is that they recruited chronically fatigued patients, not those with ME/CFS, so this is very difficult to do.
     
  7. Cort

    Cort Phoenix Rising Founder

    Isn't that something! How about that.......thanks for digging that up Mindy....I don't know what PLM is thinking.
     
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    True enough mate ;) But...if it was demonstratable that this trial had NO support whatsoever from the ME/CFS community from outset, no actual ME/CFS patients, it wouldn't have much of a leg to stand on, eh?
     
  9. Enid

    Enid Senior Member

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    No support sounds the very best - guess though investigators "tactics" not realised ( any port in a storm possibly). B..... Psyches. All the best Mindy in all of this.
     

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