New UK XMRV/Retrovirolgy Website - MEA announces

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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By the way, if anyone's interested: Prof Michael Sharpe, back row, second in from left; Prof Peter White, back row, fifth from left; Prof Simon Wessely, front row, fifth from right and I think, based on other photos, that to the right of Prof Wessely (in the blue sweater) that's Prof Tony Pinching.

 

pictureofhealth

XMRV - L'Agent du Jour
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Thanks! Look forward to hearing if there is any further clarification from the MEA.

Thanks for heads up on the photo. But who is the chap in the black bobble hat, far left middle row??!!! "Last of the Summer Wine" springs to mind. Perhaps he just walked into shot off the street at the last minute!
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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...

What I have done, though, is this. Someone commenting in the comments thread for the ME Association's News page posting which flagged up the new forum has asked who has set the forum up. The MEA's Tony Britton has responded that he does not know.

So I have posted the following. (It's a premoderated comment facility and the comment has not yet appeared.)

http://www.meassociation.org.uk/?p=3653


Comment

Tony,

I have joined this new forum and I know in whose name the site is registered and who the forum administrator is, but they are not known to me personally.

Because the MEA has flagged up the launch of this forum without providing any information about which organisation has set it up, or whether it has been set up by an individual and if so, whether they are affliated to any organisation, this has resulted in some confusion and speculation on a large, international forum over whether this new forum is associated with the MEA or with some other organisation.

I think it would be helpful if you could edit your post to clarify that this new forum for discussion of XMRV is not associated in any way with the ME Association and also request from the admin, a little background information about who has set it up.



I'll let you know how Tony responds.

Tony Britton has responded:

Im happy to clarify that the MEA was not involved in any way in the formation of this new forum, wish it well and hope it provides a useful, UK-centric forum for discussion of this hugely important topic.

Ive now seen the name of the new site owner bruited abroad. Hes not known to me but I hope he gets a fair wind behind him before long.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Thanks! Look forward to hearing if there is any further clarification from the MEA.

Thanks for heads up on the photo. But who is the chap in the black bobble hat, far left middle row??!!! "Last of the Summer Wine" springs to mind. Perhaps he just walked into shot off the street at the last minute!
Hah! I very nearly drew attention to the startling resemblance of the gentleman on the end of the middle row to "Compo"...
 
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Hi Pictureofhealth,

MEagenda is quite correct about the actual structure and function of BACME…..


And I share MEagenda’s concerns about the Phoenix site owner’s ‘permissive’ attitude to Phil Parker’s Lightning, Gupta, both of whom claim their systems cure ME: not help you live with sickness, or help with relaxation, but Recovery from ME, and according to Parker, Gupta etc - when ME sufferers don’t recover its because they supposedly didn’t do it right, or do it enough…



Some UK ME sufferers have followed the soaring careers and business ‘success’ of the NLP mindbody exploiters, deconstructed their tactics, and warned that the mindbody entrepreneurs’ construction of ME does not fit the Canadian Criteria but does fit dustbin diagnosis chronic fatigue… these people such as Parker, John Eaton (Reverse) and Gupta have basically redefined out disease. OK, some people with ME sufferer from stress, so do some people with Motor Neurone disease, MS etc etc. Stress is not exclusive to ME sufferers. But stress reduction is not the be all and end all of treatments for other diseases.



…..and I am also alarmed that this site owner has not noticed that ‘Abraham’ as ‘channelled’ by Esther and Jerry Hicks, propagates the mainstream misconception of ME as yuppie burnout (amazing that Abraham as a discarnate wise energy-entity does not have knowledge of the medical research facts about ME, the facts about the Lake Tahoe and other epidemics, or insight into the collusion of the health insurer UNUM in the British ME policy, or Unum executives Mansel Aylward and Gordon Waddell’s influence on British sickness benefits policy…. etc etc etc)…




BUT, Pictureofhealth, So Many of your points about the British ME policy and how its propagated are justified and I’m very glad you made them….. please carry on making those points, as informed British ME sufferers are currently being silenced by the ubiquitous false construct of ME as stress, burnout and dysfunctional emotions etc etc. We are being beaten over the head with the ‘Positivity’ religion, and urged to do relaxation, NLP, yoga, Tai Chi (get real! I did Tai Chi before ME, now its far too demanding on energy and impossible because of my problems with physical balance) etc …. whilst being denied legitimate tests, treatment, homecare, and legitimate sickness benefits……… and referenced ME bio-research and other referenced facts even get dismissed as ‘Negativity’ by adherents of the new cultural Positivity Cult.


.
 
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In the photo (aargh), the fella fourth from the left in the front row looks like Prof Peter Halligan of the UNUM Centre for Psychosocial Disabilities at Cardiff University. The fella in the front row next to Wessely (like the Mac!) with the red buttonhole may be Prof Mansel Aylward of the UNUM Centre. But difficult to be one hundred percent sure as they are squinting.

.
 

justy

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Thanks wildcat for that really good precis of the situation.
I have had mitochondrial testing done which has proven to me beyond a doubt that my illness is not just in my mind or only caused by stress. And yet the idea of M.E as being stress burn out induced is so ubiquitous that i even consider doing these type of therapies in my desperation to get well. I question myself continously and that is a stress that people with other illnesses do not have to endure.

This is also the view of the general public and NHS so it is very hard not to buy into it for many who consider themselves intelligent and political beings.
Thanks to everyone on this thread who has reminded me of that.
 

carolwxyz99

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By the way, if anyone's interested: Prof Michael Sharpe, back row, second in from left; Prof Peter White, back row, fifth from left; Prof Simon Wessely, front row, fifth from right and I think, based on other photos, that to the right of Prof Wessely (in the blue sweater) that's Prof Tony Pinching.


The first thing that struck me about SW fifth from the right in the front row, is what is he doing with his hands while they are in his pockets LOL. It would be very interesting to get a psychologist to analyse his stance/posture.