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

[Scarecrow]

How does the Collaborative define "orchestrated campaigns against those conducting peer-reviewed research"?

It doesn't define it at all in the Charter. Orchestrated would surely need to involve more than one person, though?

 

[Dx Revision Watch]

Scarecrow writes:

They [the BPS school] are rapidly going out of fashion.

Is that so?

I suggest you consider the number of pilots over the last year or two in England and Scotland for money saving "one-stop" service provision for treatment of patients with so-called Medically unexplained symptoms/syndromes (MUS) and Functional somatic symptoms/syndromes (FSS), under which umbrella term IBS, FM, CFS, ME et al are frequently aggregated.

Here's just one example from my collection:

PDF: Pilot of Enhanced GP Management of Patients with MUS

Note the list of illnesses under the definition of “MUS”: Chronic Pain, Fibromyalgia, Somatic Anxiety/Depression, Irritable Bowel Syndrome (IBS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-viral Fatigue Syndrome.

 

[Scarecrow]

Scarecrow writes:



Is that so?

I suggest you consider the number of pilots over the last year or two in England and Scotland for money saving "one-stop" service provision for treatment of patients with so-called Medically unexplained symptoms/syndromes (MUS) and Functional somatic symptoms/syndromes (FSS), under which umbrella term IBS, FM, CFS, ME et al are frequently aggregated.

Here's just one example from my collection:

PDF: Pilot of Enhanced GP Management of Patients with MUS

Note the list of illnesses under the definition of “MUS”: Chronic Pain, Fibromyalgia, Somatic Anxiety/Depression, Irritable Bowel Syndrome (IBS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-viral Fatigue Syndrome.

Yes, I'm aware. But I said 'going' out of fashion not 'gone'.

 

[Sasha]

Scarecrow writes:

They [the BPS school] are rapidly going out of fashion.​

Is that so?

I suggest you consider the number of pilots over the last year or two in England and Scotland

But we're not talking about the last year or two, we're talking about now. And we can't realistically expect change to be implemented immediately. It's going to take time for the biomedical push to gather momentum and media coverage and clout within academia and clinical practice but we're seeing the very, very strong beginnings of that process now. The huge success of the domination of the biomedical side at the CMRC conference is going to be a big, big part of that and I'm celebrating it. The CMRC has just delivered a huge plus for us. Our biomedicine-pushing charities and researchers have played a blinder. What we've been hoping for is starting to happen.

 

[Dx Revision Watch]

It doesn't define it at all in the Charter. Orchestrated would surely need to involve more than one person, though?

No, it does not define it.

My point being, how would those members of the Collaborative who are patient organisations stand should they need to campaign in opposition to research published by other members of the Collaborative or in opposition to research published by researchers who are not members of the Collaborative, or in opposition to research studies that are currently underway or that are being piloted but for which results are not yet published?

Or if these organisations needed to campaign in relation to ethics committee decisions for research projects, the protocols for which they found unacceptable - for example, trialling therapies in children where the safety of the therapy has yet to be trialled in adults?

Are they likely to find their autonomy compromised by the clauses they have signed up to, as members of the Collaborative?

 

[Scarecrow]

A couple of pages back, someone posted details of the Southampton group. One of those researchers was at my table for the patient / researcher collaboration. I won't name her. She seemed very nice and well intentioned but I couldn't help notice that she said an awful lot without saying very much at all. I thought to myself 'I'll bet you're some sort of psychologist'. [No offence meant to psychologists. I just sometimes find them 'vague'.] Later in the discussion I made a reference to the psychosomatic label for ME being overturned and that more biomedical researchers would be attracted to ME research. I saw her noticeably wince. I'll bet there's quite a bit of wincing going on just now by quite a number of folk. Shame.

 

[Scarecrow]

No, it does not define it.

My point being, how would those members of the Collaborative who are patient organisations stand should they need to campaign in opposition to research published by other members of the Collaborative or in opposition to research published by researchers who are not members of the Collaborative, or in opposition to research studies that are currently underway or that are being piloted but for which results are not yet published?

Or if these organisations needed to campaign in relation to ethics committee decisions for research projects, the protocols for which they found unacceptable - for example, trialling therapies in children where the safety of the therapy has yet to be trialled in adults?

Are they likely to find their autonomy compromised by the clauses they have signed up to, as members of the Collaborative?

Members are allowed to critique the work of other member's. They are not allowed to campaign against individuals. Not necessarily a clear cut situation but never the less not the same thing.

 

[Dx Revision Watch]

A couple of pages back, someone posted details of the Southampton group. One of those researchers was at my table for the patient / researcher collaboration. I won't name her. She seemed very nice and well intentioned but I couldn't help notice that she said an awful lot without saying very much at all. I thought to myself 'I'll bet you're some sort of psychologist'. Later in the discussion I made a reference to the psychosomatic label for ME being overturned and that more biomedical researchers would be attracted to ME research. I saw her noticeably wince. I'll bet there's quite a bit of wincing going on just now by quite a number of folk. Shame.

I take it you mean this Southampton group:

http://www.anlp.org/files/2014-abstract-summary_11_378.pdf

Ref: International NLP Research Conference

Feasibility study for a community based intervention for individuals
with severe CFS/ME

--------------------------------------------------------------------

Clare McDermott(*), Sarah Frossell, Dr Selwyn Richards, Prof George
Lewith, Prof Paul Little, Prof Diane Cox, Dr Geraldine Leydon,
Dr Caroline Eyles.

The NLP for severe ME patients pilot study group?

 

[Bob]

My point being, how would those members of the Collaborative who are patient organisations stand should they need to campaign in opposition to research published by other members of the Collaborative or in opposition to research published by researchers who are not members of the Collaborative, or in opposition to research studies that are currently underway or that are being piloted but for which results are not yet published?

Or if these organisations needed to campaign in relation to ethics committee decisions for research projects, the protocols for which they found unacceptable - for example, trialling therapies in children where the safety of the therapy has yet to be trialled in adults?

Are they likely to find their autonomy compromised by the clauses they have signed up to, as members of the Collaborative?

If my memory serves me correctly, the ME Association have put out a statement about this, and have said that the clause does not hinder criticism of research by other collaborative members. (I think that this issue was discussed and agreed within the collaborative.) Indeed the MEA have already published quite a strong critique of the PACE trial.

 

[Dx Revision Watch]

Members are allowed to critique the work of other member's. They are not allowed to campaign against individuals. Not necessarily a clear cut situation but never the less not the same thing.

Do you have references please for what you've written above?

 

[Scarecrow]

I take it you mean this Southampton group:

http://www.anlp.org/files/2014-abstract-summary_11_378.pdf

Ref: International NLP Research Conference

Feasibility study for a community based intervention for individuals
with severe CFS/ME

--------------------------------------------------------------------

Clare McDermott(*), Sarah Frossell, Dr Selwyn Richards, Prof George
Lewith, Prof Paul Little, Prof Diane Cox, Dr Geraldine Leydon,
Dr Caroline Eyles.

The NLP for severe ME patients pilot study group?

Yes, that one. Strangely, she didn't mention NLP.

 

[Sasha]

Prof Edwards has just started to post about the science at the conference, for anyone interested:

http://forums.phoenixrising.me/inde...erence-1-2-sept-2014.32344/page-5#post-499345

 

[Scarecrow]

Do you have references please for what you've written above?

I think that we're agreed that 3.1.3 and 3.2.3 are preventative** clauses and that the object of those clauses are individuals ('those conducting peer-reviewed research'). I freely acknowledge that there are no clauses that explicitly state that members are allowed to critique the research but:

• it would be a strange sort of scientific endeavour that prevented criticism of the science.
• if a constitution is 'silent', you can do it

** edited: I meant prohibitive

 

[seanpaul]

Bob - you seem to want to decide whats relevant or not, but even after I showed you how points 1-3 were indeed relevant to the Collaborative you then change tact and claim its not substantiated - even bordering on being aggressive, if thats how you need to make your point fair enough, but you seem to be blind to the general discussion at hand - ie the motivations and role of the Collaborative.

Whether or not they are bio-focused now or not is rather mute - if they have a hidden agenda its not anti-research to raise these points - i think this fact is most striking

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.'

With Holgate overly thankful to the very man who has distorted ME/CFS research for so long - it makes you sick, its a bit like Tony Blair who won an award for philanthropy or Wessely's award for science - its beyond a joke!

 

[Bob]

Bob - you seem to want to decide whats relevant or not, but even after I showed you how points 1-3 were indeed relevant to the Collaborative you then change tact and claim its not substantiated - even bordering on being aggressive, if thats how you need to make your point fair enough, but you seem to be blind to the general discussion at hand - ie the motivations and role of the Collaborative.

I think you have successfully demonstrated in your posts, that "the Collaborative" is not a homogeneous beast, but that there are different elements within it, and that decision-making is not dominated by the elements that you don't trust. If elements of the collaborative are not to your liking, it does not automatically mean that the collaborative as a whole is corrupt or dysfunctional. I think this has been demonstrated by the info in your posts (i.e. decisions were made that apparently went against the wishes of the individuals whom you don't trust), and is also demonstrated by the success of the conference. However, you have concluded that the whole of the collaborative is corrupted because of the inclusion of the elements that you don't trust.

If I'm coming across as slightly aggressive, then it's because I'm irritated with the way you have presented your information and conclusions. You have placed a huge burden on the reader who is forced to sift through your information, only to find out that your conclusions are based on hearsay, partial information, tittle-tattle, 'intuition' and guess-work. You've used some vague, contradictory and (by your own admission) flaky information to present us with a narrative and conclusions that fit your own agenda. You've mixed facts with hearsay and guesses and 'intuition'. But when analysing your posts, your 'facts' and conclusions don't stack up, so it's up to the rest of us to pick apart the contradictions and hearsay that you've presented to us, and to work out what's what. That's why I'm irritated. Note that I'm not irritated simply because you are critical of elements of the collaborative.

Like I said, I'm not against criticism of the collaborative. And I'm not naive enough to think that everything is rosy. However, I want to reserve judgement of the collaborative as a whole and base my conclusions on actual evidence and events rather than: hearsay; edited extracts of FOI requests; and tittle-tattle. It is not possible to get a full picture of the facts based on any of these.

By all means criticise, but please present us with actual facts, and then we can make up our own minds about the collaborative, based on the facts presented.

The successful biomedical conference that we've just seen take place, does not seem, to me, that it was organised by a board that is dominated by those individuals that you have been criticising.

 

[Chickadee9]

Dear forum members

I need to draw your attention to a cache of emails that has just been sent to me by someone calling her/himself “conspiracy theorist number 1” revealing a close connection between Professor Lipkin and the psychiatric world---a connection that, if known before this week, would have cast the CMRC conference in an entirely different light. According to this source Professor Lipkin participated in an email exchange with a psychiatrist within living memory and MAYBE as recently as last month. Whether this was professional or personal is impossible to say as the names have been redacted. Nor has my source provided me with any emails I can share with you. But GIVEN HIS RECENT HIGH PROFILE INVOLVMENT WITH THE CMRC the evidence must point towards a professional involvement (even though he lives in New York, where there are as many psychiatrists as there are fire hydrants). THIS IS CLEARLY OUTRAGEOUS and must serve to undermine anything and everything he said at the CMRC conference and the subsequent seminar he gave. He, of all people, should be aware that association is synonymous with contamination. Yet, by this very action, as my source attests, he has invalidated 30 years of ground-breaking science. Thank you, thank you, thank you conspiracy theorist number 1 for revealing to us THE TRUTH about Professor Lipkin. You have done this forum a great service.

 

[A.B.]

@Chikadee9 you might want to be less subtle with sarcasm (inserting a disclaimer that it's sarcasm should do it). Someone could easily mistake this for a serious post. I'm not even 100% sure myself because I haven't gotten to know your online persona yet.

 

[worldbackwards]

@Chikadee9 you might want to be less subtle with sarcasm (inserting a disclaimer that it's sarcasm should do it). Someone could easily mistake this for a serious post. I'm not even 100% sure myself because I haven't gotten to know your online persona yet.

We're not that bad, are we?

Are we?

 

[Cheshire]

I just hope your whole post is sarcastic...

 

[Chickadee9]

@Chikadee9 you might want to be less subtle with sarcasm (inserting a disclaimer that it's sarcasm should do it). Someone could easily mistake this for a serious post. I'm not even 100% sure myself because I haven't gotten to know your online persona yet.

Point taken. It is intended to satirise this thread - not the points made in it - which was initiated by a post, followed by another post, not too far from what I've posted.