Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

Dolphin

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MAY BE REPOSTED


A new report from Tymes Trust:


*Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)


Today Tymes Trust publishes the inside story on the Collaborative. Here is the introduction.


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Introduction


When the UK CFS/ME Research Collaborative (UK CMRC) was set up in 2013, the Young ME Sufferers Trust declined to attend the launch, due to concerns we expressed in a Statement, the text of which is here:

http://www.tymestrust.org/txt/alert201305meawarenessday.txt


Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC).


We note:


In the run-up to the full formation and launch of the Collaborative, a meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list:


* Freedom of Information Requests

* Complaints to the GMC and various institutions

* Parliamentary Questions


A series of Action Points include:


* 'Support4rs - Work with Peter White and Simon Wessely to develop resources for dealing with harassment'

* 'SMC – Run a press briefing on biosocial illness to improve public understanding.'


NB Two sets of written records are kept of Collaborative meetings; one for the Board, another for the public. This should be borne in mind when reading records that are placed online.

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Our report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community.


You can find our report here:



http://bit.ly/1vSRhOI


Jane Colby, Executive Director

Lesley Scott, Scotland Representative

The Young ME Sufferers Trust
 

Bob

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It does make depressing reading. I was willing to give the collaborative a chance before I judged it, but it's got to perform better than this. From the edited extracts, this appears like worst case scenario in action already.

It's interesting, but not really surprising, that Wesley is involved.
We were supposed to believe that he'd retired from CFS work because he felt safer in Afghanistan.
It confirms that he's still there in the background, as interested in CFS as ever.

I think the charities have got to step up and know that they're dealing with public relations supremos, and people who will go to great lengths to get things done their way. The charities have got to be assertive, smart and possibly scheming.
 
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Bob wrote: "....The charities have got to be assertive, smart and possibly scheming."

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As opposed to being utterly compliant or occasionally weakly bleatiing a 'concern' which is then ignored.

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The Charities need to decide exactly who they represent. Because it doesn't look like the Charities involved in the Collaborative represent the patients.
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And so much for the claim that the Charities can only influence the Collaborative if they are on the inside. There does not appear to be any such "influencing" going on. Just more giving way and 'going along with' the biopsychosocial agenda.
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Dolphin

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I haven't given up on the Collaborative myself, but neither am I a big fan - I've always been very divided on it.

The charities should possibly keep track of times they have compromised as well as things regarding the Collaborative that didn't go down well with their constituency, to help them bargain in future. This could also be useful to point to if any of them pulled out. The problem of course is leaving in very weak groups, like AYME, could cause worse problems.
 
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The Young M.E. Sufferers' Trust are one of three national UK M.E. charities in the UK refusing to be part of the Collaborative (the other two being Invest in ME and the 25% Group for the severely affected).

Their document appears to show that Prof Simon Wessely was involved with the Collaborative from the beginning.



The doctors involved in setting up the Collaborative appear to have reclassified myalgic encephalomyelitis as a 'biosocial' illness (whatever that is) rather than accept the World Health Organisation classification of it as a neurological illness that has stood since 1969. I know of no authority by which they can do this.



The Collaborative seem determined to broadcast that research into M.E. has been hampered by what they view as 'harassment' by patients. Is it possible that this 'harassment' is justified criticism of the way patients have been mistreated, misrepresented and denied effective treatment over the last 30 years? Denigrating patients in the media by accusing them of harassment when in fact they have acted within the law by making legitimate complaints and requests is a very dirty trick.



They seem unable to grasp that the real reason research has been hampered in the UK is that the MRC have repeatedly denied biomedical research such as that proposed by Jonathan Kerr funding, until the researchers involved have given up forwarding proposals, whilst at the same time the MRC has been pouring millions into seemingly useless nonsense such as PACE and FINE.



The UK charities that are members of the Collaborative are the M.E. Association, Action for M.E., Action for Young M.E. and M.E. Research UK.
 

Sasha

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It does make depressing reading. I was willing to give the collaborative a chance before I judged it, but it's got to perform better than this. From the edited extracts, this appears like worst case scenario in action already.
According to the document, the five-page summary is based on over 200 email threads. I don't feel that we're getting enough context to really judge what's what. We already knew that there was that bizarre anti-harrassment clause; we already knew what the title of the organisation was. I think it was already obvious that concessions had been made. What we don't know is what concessions were gained in return and I don't know that a charity that is against the Collaborative is going to be the best source of information on what has gone right for us, any more than the charities in the Collaborative would be the best sources of what has gone wrong for us.

I think the charities have got to step up and know that they're dealing with public relations supremos, and people who will go to great lengths to get things done their way. The charities have got to be assertive, smart and possibly scheming.
Perhaps they are. Certainly the meeting in Bristol on Monday (?) has the potential to do us a lot of good, and getting Dr Lipkin over will be a real boost. I hope they'll really make hay with him in the media.

I think it's important to keep our eyes on the prize, which is the goal of very considerably increased government funding overall for biomedical research into ME. That's the major goal of the Collaborative and in my view, that's worth a few concessions on relatively trivial matters such as the order of ME and CFS in the title and the inclusion of a bizarre clause in the charter.

Time is going to tell on this one. I'm still hoping for the best.
 
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... in my view, that's worth a few concessions on relatively trivial matters such as the order of ME and CFS in the title and the inclusion of a bizarre clause in the charter.
It is hardly a trivial matter that Simon Wessely was involved in the setting up of the Collaborative, without us being told, not that they call our neurological illness 'biosocial', nor that they insisted that patients' legitimate complaints be mispresented as 'harassment' in order to denigrate the patients they are paid to help.

In my opinion, the charities involved in this have sold out and betrayed us.
 
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Sasha wrote: ".....Time is going to tell on this one..."

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How much time exactly. this time? There was 1998 to 2002 (Chief Medical Officers Report on CFS) ... waste of time and energy and a waste of our hopes.

NICE Guidelines (2004-2007).... the strongest Patient Representative (Tanya Harrison of Brame) resigned in Protest (before the Guidelines were published).

APPG Inquiry into NHS ME Services (2008-2009) .. waste of paper.. disappeared without barely a trace .

PACE Trial (2005-2011) Collaborating Charity AFME....

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We can see the wool pulling tactics a mile off...... they are so easy to recognise.

"Concessions" to what or whom??? Would that be Consessions to White, Crawley, Wessely and Chalder?
If so, Why?
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Some of us do not have "time" to wait whilst the Biopsychosocial researchers continue running the show.

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Esther12

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I'd still like to see the original e-mails. There are bits that look really quite helpful - if they're admitting the worst harassment they've received if FOI requests, that's pretty funny, and pretty much undermines the 'dangerous militant patients' story they've been trying to use to distract attention from their own quackery.

I think it's hard for someone to see how the data from PACE has been misrepresented, and then insist that it is unreasonable for patients to try to get more information through FOI requests.
 
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Bob

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According to the document, the five-page summary is based on over 200 email threads. I don't feel that we're getting enough context to really judge what's what. We already knew that there was that bizarre anti-harrassment clause; we already knew what the title of the organisation was. I think it was already obvious that concessions had been made. What we don't know is what concessions were gained in return and I don't know that a charity that is against the Collaborative is going to be the best source of information on what has gone right for us, any more than the charities in the Collaborative would be the best sources of what has gone wrong for us.
Yes, we have to keep in mind that it is a highly edited document, and that it was created to serve a purpose.
However, it was depressing reading, even though I had been bracing myself for the worst.
Like you, I'm still optimistic that something good will come from the collaborative, despite the document, but it's not going to be an easy ride for the community.
The document didn't present me with anything that I hadn't already considered a possibility, except that I was surprised to see Wessely's involvement in such an explicit manner.
 

Bob

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In my opinion, the charities involved in this have sold out and betrayed us.
It's an understandable opinion, but I don't agree. I believe that their involvement in the collaborative gives us a voice. My concern is that they are not bold enough or assertive enough to counteract the highly effective psycho-social lobby within the collaborative.
 

Bob

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Some of us do not have "time" to wait whilst the Biopsychosocial researchers continue running the show.
I agree, but the main purpose of the collaborative was to promote biomedical research. i.e. to looks for answers to the biomedical nature of ME/CFS. Stephen Holgate does not believe that ME is a psycho-social disorder, and he knows that CBT/GET only serve to help patients cope (i.e. that they do not address the underlying cause), and he knows that the PACE trial had a very poor result. I've been very impressed with his insights, which is why I had some hope for the collaborative.

Holgate set it up to follow the model of another (highly successful) collaborative that he set up. Unfortunately, he probably didn't realise what sort of agenda some in the ME/CFS research community have, and so assumed that bringing all the ME/CFS researchers together would be a success.

I don't think we can judge the success or otherwise of the collaborative based on a bunch of emails which contain information that doesn't surprise us. Yes, it's depressing reading, but I still think something can come out of the collaborative. But then I'm ever the optimist, and perhaps I shouldn't be on this occasion!
 
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Dolphin

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I'd still like to see the original e-mails. There are bits that look really quite helpful - if they're admitting the worst harassment they've received if FOI requests, that's pretty funny, and pretty much undermines the 'dangerous militant patients' story they've been trying to use to distract attention from their own quackery.

I think it's hard for someone to see how the data from PACE has been misrepresented, and then insist that it is unreasonable for patients to try to get more information the FOI requests.
Yes, the PACE Trial investigators themselves described it as the definitive trial on the issue (in the Statistical Analysis Plan). And it did cost £5m of taxpayers' money.
 

Bob

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I'd still like to see the original e-mails. There are bits that look really quite helpful - if they're admitting the worst harassment they've received if FOI requests...
You're forgetting the heinous crime of asking a parliamentary question! There's no such danger to life or limb as a Countess asking a parliamentary question! ;) Indeed, I would feel that my life was threatened if a Countess asked a pertinent question about my research data! :rolleyes: