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

[energyoverload]

I'd just like to echo what Prof. Edwards felt about the conference. I felt truly very inspired to hear about intriguing relatively novel concepts for disease pathogenesis, that have not been applied very much to science in general before. This was a great chance for patients and researchers to interface in order to ensure focus on the target - develop efficacious treatments for this disease. This was the start of something big it felt very positive and we have barely scratched the surfaced!!!!

 

[alex3619]

I'd just like to echo what Prof. Edwards felt about the conference. I felt truly very inspired to hear about intriguing relatively novel concepts for disease pathogenesis, that have not been applied very much to science in general before. This was a great chance for patients and researchers to interface in order to ensure focus on the target - develop efficacious treatments for this disease. This was the start of something big it felt very positive and we have barely scratched the surfaced!!!!

That is what conferences can do. Its why they are so important.

 

[energyoverload]

Indeed they do. Yet it can be all too easy to forget the good when its out of sight.

 

[alex3619]

At the risk of throwing a cat amongst the canaries, I would like to quote Machiavelli (I think, though some attribute it to Sun Tzu) for people to think about:

"Keep your friends close, and your enemies closer."

Whether you are a friend or enemy to psychobabble, you might want to keep them close. In a Collaborative you might therefore have both friends and enemies to psychobabble.

 

[biophile]

@alex3619 - Many journals literally will not publish any statement in a letter which is not supported with a citation, with the possible exception of the opening sentence. Logic and reason are insufficient to them - there must be an authority.

The irony of course being that often the citations don't actually support the statement!

 

[alex3619]

The irony of course being that often the citations don't actually support the statement!

Which gets let though. Nobody checks ... well, at least not often enough. Which is partly where my earlier nonsense comment came from.

 

[seanpaul]

Dear Forum Members

I must bring to your attention an additional bit of information. I am aware of a researcher at Manchester University Dr Keith Geraghty, who attempted to join the ME/CFS Collaborative and he was refused full membership on the grounds he had not published a paper on ME/CFS in the past 2 years. His membership was approved by Esther Crawley and other members only after they have done a background check on him (ie seeing if he could join the club) - later he submitted a formal request to access the PACE Trial Data and was refused, when he sought clarification a complaint was made against him by Peter White who tried to claim he acted in an 'unprofessional' manner. Emails that Dr. Geraghty had sent to the Collaborative suggesting he didnt subscribe to the psychosocial model were used to formulate this complaint. It appears these emails may have originated from Prof. Holgate who passed on all emails sent to him - to Crawely and White, regarding Dr. Geraghty's views on ME/CFS.

As far as I am aware White tried to stop Dr Geraghty seeking access to the PACE Data by claiming that Dr. Geraghty had some underlying bias due to the fact he had written emails to Prof. Holgate stating he was unhappy about the direction of research in the UK, specifically the amount of funding given to psychological studies.

As far as I can see the Collaborative is run by White, Crawely, and now from whats been written above, its perhaps run by Wessely, also, who basically run the show behind the scenes.

They are trying to silence all criticism by attempting to construct an outwardly independent looking Collaborative, when in fact they run the show and say whos in and whos out.

Its not a Collaborative but a Clique.

 

[Min]

Dear Forum Members

I must bring to your attention an additional bit of information. I am aware of a researcher at Manchester University Dr Keith Geraghty, who attempted to join the ME/CFS Collaborative and he was refused full membership on the grounds he had not published a paper on ME/CFS in the past 2 years. His membership was approved by Esther Crawley and other members only after they have done a background check on him (ie seeing if he could join the club) - later he submitted a formal request to access the PACE Trial Data and was refused, when he sought clarification a complaint was made against him by Peter White who tried to claim he acted in an 'unprofessional' manner. Emails that Dr. Geraghty had sent to the Collaborative suggesting he didnt subscribe to the psychosocial model were used to formulate this complaint. It appears these emails may have originated from Prof. Holgate who passed on all emails sent to him - to Crawely and White, regarding Dr. Geraghty's views on ME/CFS.

As far as I am aware White tried to stop Dr Geraghty seeking access to the PACE Data by claiming that Dr. Geraghty had some underlying bias due to the fact he had written emails to Prof. Holgate stating he was unhappy about the direction of research in the UK, specifically the amount of funding given to psychological studies.

As far as I can see the Collaborative is run by White, Crawely, and now from whats been written above, its perhaps run by Wessely, also, who basically run the show behind the scenes.

They are trying to silence all criticism by attempting to construct an outwardly independent looking Collaborative, when in fact they run the show and say whos in and whos out.

Its not a Collaborative but a Clique.

Good grief

 

[Chickadee9]

Dear Forum Members

I must bring to your attention an additional bit of information. I am aware of a researcher at Manchester University Dr Keith Geraghty, who attempted to join the ME/CFS Collaborative and he was refused full membership on the grounds he had not published a paper on ME/CFS in the past 2 years. His membership was approved by Esther Crawley and other members only after they have done a background check on him (ie seeing if he could join the club) - later he submitted a formal request to access the PACE Trial Data and was refused, when he sought clarification a complaint was made against him by Peter White who tried to claim he acted in an 'unprofessional' manner. Emails that Dr. Geraghty had sent to the Collaborative suggesting he didnt subscribe to the psychosocial model were used to formulate this complaint. It appears these emails may have originated from Prof. Holgate who passed on all emails sent to him - to Crawely and White, regarding Dr. Geraghty's views on ME/CFS.

As far as I am aware White tried to stop Dr Geraghty seeking access to the PACE Data by claiming that Dr. Geraghty had some underlying bias due to the fact he had written emails to Prof. Holgate stating he was unhappy about the direction of research in the UK, specifically the amount of funding given to psychological studies.

As far as I can see the Collaborative is run by White, Crawely, and now from whats been written above, its perhaps run by Wessely, also, who basically run the show behind the scenes.

They are trying to silence all criticism by attempting to construct an outwardly independent looking Collaborative, when in fact they run the show and say whos in and whos out.

Its not a Collaborative but a Clique.

Here we go again. Yet another attempt by the "anti-CMRC clique however much biomedical research they encourage" to denigrate what was, by all accounts, a most successful gathering of biomedical researchers to discuss ME. You sound as if you are grasping at straws in your desperation to blacken the CMRC. Would someone of Lipkin's stature and reputation have travelled over the Atlantic to a conference that was psychological in nature? Of course not. He has said many times he believes firmly that ME is biological. You should be pleased that the MRC has now pinned its flag to the biological mast - admittedly after years of neglect - instead of this constant carping.

 

[Esther12]

I didn't see seanpaul's post as an attempt to denigrate a successful gathering, although I don't agree that the collaborative is run just by White and Crawley. I also don't think I agree that (or really understand the claim that) the MRC has now pinned it's flag to the biological mast.

I think it's important to be aware of the bad things that may come out of the CMRC even if you think it is a good thing overall, just as those who think it is a bad thing overall should try to be aware of and recognise that good things can come out of it too. If Holgate was passing on private e-mails that have then been used as an excuse to prevent a researcher from being able to analyse the data from the PACE trial, and un-spin some of their results, that is a bad thing - again, I'd like some more info on this.

Maybe I'm wrong about this, but on my reading of this thread it seems like most people are often pretty close together when it comes to the facts of what is happening, and a lot of the disagreement is over whether these facts should be view as 'good' or 'bad'. Maybe I'm wrong though, as I may well have missed stuff (also, Wildcat did mistakenly think an 'Esther' aimed at me was about Esther Crawley).

(Also - it's easy to sound reasonable when one positions oneself between two opposing arguments, even though it's often the least sensible position to take... I hope no-one falls for that!)

At the moment, I think the CMRC a mixed bag. I'd like to see a lot more info being made public though.

 

[Bob]

Dear Forum Members

I must bring to your attention...

Dear seanpaul,
You don't seem to be certain about any of the details, and your post seems to be unsubstantiated.
You say that a particular researcher wasn't allowed to join the collaborative, but then he was allowed to join, so the end result is that he joined the collaborative. So much for the show being 'run' by White, Crawely and Wessely.

You also seem to be conflating a few separate issues:
1. Membership of the collaborative.
2. Access to the PACE data.
3. A complaint about harassment.

These are all entirely separate issues, none of the details of which you seem very certain about.
Only number 1 (in the list) has anything directly to do with the collaborative.

Access to the PACE data has nothing to do with the collaborative, and it's well known that White will not release the data to the public, and will avoid releasing it to researchers whenever possible.

I have no problem with people criticising the collaborative, if the criticisms are based on facts, but I'd prefer the criticisms weren't entirely shaped by personal agenda's, and preconceived thoughts, and I'd like criticisms to be based on substantiated information, and without confusing the discussion by conflating completely separate issues. Otherwise, it's unfair on the rest of us, who wish to assess the proceedings objectively.

 

[user9876]

At the moment, I think the CMRC a mixed bag. I'd like to see a lot more info being made public though.

I was quite negative about the CMRC but I have changed my mind the conference seems to have been very positive. With any loose grouping there will be both good and bad but I'm now very hopeful that there will be much more good than bad.

Although I agree about more info being made public - for example when this thread started I hadn't seen the conference program although I had looked (there was a rough program with a lot of blanks). I guess people here want to understand and contribute to research whilst being outside of an academic research community - which isn't part of the standard academic model. However, I think we are lucky to have people on the forum who went and will communicate some of the content.

I also don't think I agree that (or really understand the claim that) the MRC has now pinned it's flag to the biological mast.

Having people within the MRC voicing support for biological research either as committee chairs or MRC staff seems important and I would think will help in getting research proposals through. It will be interesting to see how that influences the reviewing process.

 

[Dx Revision Watch]

I was not planning on contributing further to this thread but I cannot let this go:
http://forums.phoenixrising.me/index.php?members/chickadee9.11867/
Chickadee9

"anti-CMRC clique"

This is a forum, not a public relations platform for the Collaborative.

It should be possible, on a forum, for any individual to voice concerns about the assembly and MO of the Collaborative, or about the research interests of its Executive or non executive members, or about the clauses written into its Charters or any other aspect of its operation without being lumped together as part of an "anti-CMRC clique."

If Chickadee9 were to review the posts that I have posted, for example, nowhere have I "denigrated" what took place over the two day conference.

The considerable concerns that some of us have about the TYMES Trust report based on documents obtained under FOI and the two day conference that has just taken place are two separate issues.

A "successful" conference does not reduce my concerns about the content of the TYMES Trust report.

The media campaign orchestrated last year by the SMC was a very dirty business indeed.

The documents obtained by TYMES Trust shed more light on who was involved in that campaign. That is a matter of public interest and concern to some of us, whether we are members of those patient organisations who have signed up to the Collaborative or not.

It should be possible to voice concerns and discuss them openly without being dismissed as being part of "a clique" and without two issues being conflated, as though a "good conference" somehow mitigates the carrying out of a filthy dirty media campaign against a patient group.

That was not accepable.

Half a dozen "95% non psych conferences" won't make it any more acceptable.

It is what it is.

http://en.wikipedia.org/wiki/List_of_fallacies

 

[seanpaul]

May I reply to the above:

First - two researchers that I have knowledge of tried to join the collaborative - Dr. Keith Geraghty and Dr. Stoyan Kurtev - both as far as I know were refused full membership on the grounds that they hadnt published about ME/CFS prior (this is a requirement of full membership) this requirement was established by members of the Collaborative (my instincts tell me White and Crawely) as was the requirement that you cant join this Collaborative if you have ever harassed or been involved in any organised campaign against any ME/CFS Researcher -- hello, basically if you are new you cant have full membership and if you ever criticised Crawely or White they can refuse membership on these grounds. *thats point one addressed

secondly, they were only offered associate membership which gives these members no rights or access to board decisions

third, Crawely and White are consulted on who joins the Collaborative or not - as pointed out in the original document of this forum, emails sent to Wessely asking who he thinks should join. So you have a UK collaborative set up were White, Wessely or Crawley decides who's in and who's not.

fourth, the researcher White complained about, Dr. Geraghty, - is it not a form of harassment to make complaints to Detps and Universities - so is there one rule for those against White/Crawley and Co, and another rule for White/Crawley and Co? They can complain and harass anyone they want, who asks for anything, eg minutes of minutes, FOI requests or data?

Lastly, bringing facts to light is not demonstrating either being for or against anything, its up to others to decide that. The emails Ive read are highly alarming concerning how this Collaborative behaves - could it be that this Collaborative is a wolf in sheeps clothing, appearing to be new and forward looking, eg a bit of biomedical research, the odd event, but in reality its the same protagonists in the UK, Crawley, White, Wessely, using a new forum to control UK ME/CFS research - if they have control of this Collaborative formal or informal, they have even more control of funding and decisions and publicity than ever before?

Thats the question!

Bob sorry but you are wrong that only 1 is relevant - the complaint made against Dr Geraghty at Manchester University was that he had been unprofessional by writing to Prof. Holgate expressing concerns about the dominance of psychological research, as far as I can gather, Prof. Holgate shared emails that Dr Geraghty wrote, and these were used to form the complaint which was later sent to Manchester. ie they colluded to complain, the board members, mainly White and Holgate - perhaps Crawley also.

 

[seanpaul]

Here we go again. Yet another attempt by the "anti-CMRC clique however much biomedical research they encourage" to denigrate what was, by all accounts, a most successful gathering of biomedical researchers to discuss ME. You sound as if you are grasping at straws in your desperation to blacken the CMRC. Would someone of Lipkin's stature and reputation have travelled over the Atlantic to a conference that was psychological in nature? Of course not. He has said many times he believes firmly that ME is biological. You should be pleased that the MRC has now pinned its flag to the biological mast - admittedly after years of neglect - instead of this constant carping.

you are either naieve or blind to the facts before you - when you say they , who are they? do you think psyhciatrists who earn hundreds of thousands of pounds in salaries and have essentially concerned the market on ME/CFS research in the UK, do you really think they are putting their shoulder to the wheel and crying out for new biomedical studies into the pathophysiology of ME/CFS. You are lucky Wessely even allowed it be called the ME/CFS Collaborative, he cleverly knew it had to have the term ME otherwise it would be rejected by patients. - So, are the same people who state ME/CFS is an illness of aberrant illness beliefs, are these the same people pushing for funding to go to new innovative research?

Start using your mind - - they are seeking to control a ship that is moving away from them.

 

[Scarecrow]

So, it seems that despite the concerns of the Tymes Trust, Stephen Holgate may have played a blinder after all.

As was pointed out earlier in this thread, not all e-mails have been disclosed so there's not an awful lot that any of us can conclude other than that Crawley, White, and Wessely have their own agenda. But we knew that. What we do not know is the full story of how the collaborative was set up. We're all quick enough to criticise selective reporting of trial data and rightly so. Is it not a bit hypocritical to be castigating Stephen Holgate when we don't have all the evidence?

There is, by the way, a false claim in the Tymes Trust statement of 12/05/2013. The CMRC Charter does not contain any gagging clauses. I can only assume that the following clauses are those being referred to and, if so, it's blatant misrepresentation by the Tymes Trust:

Members must:
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.

and

3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.

If I've misunderstood, can someone show me where these 'gagging clauses' are?

What constitutes harassment is another matter but I'll be surprised if the BPS school won't soon be yearning for those halcyon days when they were being 'harassed' because I doubt they'll be getting much of any kind of attention soon. They are rapidly going out of fashion. I have a hunch that Crawley will adapt and change.

Sonya Chowdhury has, I think, been unfairly criticised for 'going along with the majority'. She's a member of a committee and on a committee, aside from it pretty much being a prerequisite to go along with the majority, if you're astute you pick your fights carefully. So she didn't oppose CFS/ME over ME/CFS. So what? I'd far rather the latter but I'm sure they were much more significant matters to vote on and influence others about. I'm not saying she has done this - I've no way of knowing - but criticising a committee member for 'going along with the majority'? Really!

And can anyone answer me this? If Wessely, Crawley and White have been so influential and Holgate merely a pawn, why was the Conference so overwhelmingly biomedical, including the research presented by psychiatrists?

 

[Dx Revision Watch]

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

 

[A.B.]

And can anyone answer me this? If Wessely, Crawley and White have been so influential and Holgate merely a pawn, why was the Conference so overwhelmingly biomedical, including the research presented by psychiatrists?

The conference was very encouraging, but I don't see BPS model advocates simply letting go of their position of power. Things are going in the right direction, but we haven't won yet.

It's worth pointing out that as long as the BPS model advocates can present CBT/GET as the only "evidence based" treatment, they will remain in a very good position.

I'm also curious what this is supposed to mean:

Members must:
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.

The BPS model advocates have a history of labelling requests for PACE trial data and the like as harassment.

 

[Scarecrow]

The conference was very encouraging, but I don't see BPS model advocates simply letting go of their position of power. Things are going in the right direction, but we haven't won yet.

Agreed.

I'm also curious what this is supposed to mean:

Members must:
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.
Click to expand...
The BPS model advocates have a history of labelling requests for PACE trial data and the like as harassment.

I know what it doesn't mean, if that's any help! It doesn't mean that members are not allowed to critique research.

I wonder how common clauses like these are in similar initiatives? White et al. may indeed view requests for data as 'harassment' but I believe that the term used in the FOI is 'vexatious' and it's clearly defined. If only we knew the truth behind the claims of harassment.

 

[Bob]

First - two researchers that I have knowledge of tried to join the collaborative - Dr. Keith Geraghty and Dr. Stoyan Kurtev - both as far as I know were refused full membership on the grounds that they hadnt published about ME/CFS prior (this is a requirement of full membership) this requirement was established by members of the Collaborative (my instincts tell me White and Crawely)...

OK, so what you are telling us here is that people cannot join the collaborative board unless they are researchers with published research. That doesn't seem like a completely outrageous rule. You/we might not like the rule, but it's not completely outrageous. And your 'instincts' tells you who imposed the rule.

secondly, they were only offered associate membership which gives these members no rights or access to board decisions

So these people who were not allowed to join the collaborative, have in fact joined.

third, Crawely and White are consulted on who joins the Collaborative or not - as pointed out in the original document of this forum, emails sent to Wessely asking who he thinks should join. So you have a UK collaborative set up were White, Wessely or Crawley decides who's in and who's not.

So White, Wessely or Crawley decide who's in and who's out, but the people they didn't want to join have joined anyway.

fourth, the researcher White complained about, Dr. Geraghty, - is it not a form of harassment to make complaints to Detps and Universities - so is there one rule for those against White/Crawley and Co, and another rule for White/Crawley and Co? They can complain and harass anyone they want, who asks for anything, eg minutes of minutes, FOI requests or data?

I assume that the complaint was made in a personal capacity and not on behalf of the collaborative. So you're conflating issues.

Lastly, bringing facts to light is not demonstrating either being for or against anything, its up to others to decide that.

The 'facts', if I may say so, seem to be rather vague and confused and contradictory!

Bob sorry but you are wrong that only 1 is relevant - the complaint made against Dr Geraghty at Manchester University was that he had been unprofessional by writing to Prof. Holgate expressing concerns about the dominance of psychological research, as far as I can gather, Prof. Holgate shared emails that Dr Geraghty wrote, and these were used to form the complaint which was later sent to Manchester. ie they colluded to complain, the board members, mainly White and Holgate - perhaps Crawley also.

"As far as I can gather..." etc. So that nails the 'facts' then doesn't it!

I'm sorry, seanpaul, but you don't seem to be very clear about the 'facts', and you seem to be contradicting yourself, frequently. And your conclusions don't seem to be supported by your own evidence.

I'm not saying that everything is rosy as far as the collaborative is concerned, but please report actual substantiated facts and not agenda-driven tittle-tattle.