PatientsLikeMe Connection to Simon Wessely, at CFS Central

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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
 

Esther12

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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!
 

Francelle

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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!
 

Enid

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

SilverbladeTE

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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
 

alex3619

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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.
 

SilverbladeTE

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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.
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?
 

Enid

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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.