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

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Bob Wrote: "...... the single purpose of the collaborative was to promote biomedical research..."

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In which case White, Crawley, Wessely and Chalder are all surplus to requirements. Not Needed.

I mean, none of them are short of research funding, are they? And what kind of new researchers are they likely to attract? Ones who have swallowed the heinous story that absence of funding for ME bioresearch has always been the fault of the patients. And that "story" is a pretty dirty cover up if you ask me.

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Min

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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.


If MEA, AfME, AYME and MERUK had simply refused to go along with the formation of this Collaborative, there simply would not be one. As it is, we now have one with White, Wessely and Crawley clearly running the show and denigrating patients.

At what point do the charities involved in this stand up and say that these doctors are wrong, and that we patients have endured 30 years of abuse and neglect because of them?
 

Bob

Senior Member
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Bob Wrote: "...... the single purpose of the collaborative was to promote biomedical research..."

In which case White, Crawley, Wessely and Chalder are all suplus to requirements. Not Needed.

I mean, none of them are short of research funding, are they? And what kind of new researchers are they likely to attract? Ones who have swallowed the heinous story that absence of funding for ME bioresearch has always been the fault of the patients. And that "story" is a pretty dirty cover up if you ask me.
Yes, I really wish they weren't involved in the collaborative. I do find the whole situation depressing. I just hope that something good can come out of it. I think we'll be able to judge it better after their upcoming meeting.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Min

Guest
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Yes, I really wish they weren't involved in the collaborative. I do find the whole situation depressing. I just hope that something good can come out of it. I think we'll be able to judge it better after their upcoming meeting.


After 30 years of the Wessely/ White/Crawley etc. stranglehold on myalgic encephalomyelitis that has thus far deliberately prevented nearly all biomedical research in the UK, your hope will probably prove to be be a forlorn one.

(If the Collaborative are not involved setting up the blood and tissue bank, why were they discussing it in one of the meetings posted above?)
 

Sasha

Fine, thank you
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(If the Collaborative are not involved setting up the blood and tissue bank, why were they discussing it in one of the meetings posted above?)

Presumably you're referring to item #6 in this:

http://www.actionforme.org.uk/Resou...ments/chair-approved-cmrc-minutes-5614-jm.pdf

which is proposing to put more work into getting the biobank set up.

We should welcome this because it means that the Collaborative are doing here something that we want - to boost a crucial resource for biomedical research. There's no requirement on them to discuss or support only their own initiatives and it would make no sense for that to be a requirement if they're to do their job properly.

As a reminder of what they're trying to do, here are their aims from their charter and I've bolded the one that I think applies here:

2.2 Objectives
2.2.1 Develop inform and update a national strategy for CFS/ME research
2.2.2 Promote the need for world class research into CFS/ME across all fields
2.2.3 Facilitate all high quality peer reviewed research into all aspects of CFS/ME in both
adults and children. This will include: basic mechanistic research; translational research;
epidemiological research; health resource use research and research investigating all
types of treatment and prevention of CFS/ME.
2.2.4 Encourage multidisciplinary research by facilitating links with those already active in
the field and involving scientists in other fields to undertake research in CFS/ME.
2.2.5 Facilitate investment in essential research infrastructure e.g. bioresources,
technology platforms, well phenotyped patient cohorts to deliver high quality research in
CFS/ME and promote increased research capacity in the field.

2.2.6 Work collaboratively to raise the profile of CFS/ME research in the UK in both
professional and public domains.
2.2.7 Promote, facilitate and support the development of a good career structure for
CFS/ME researchers.
2.2.8 Foster research collaborations and communication between clinicians, researchers,
professional bodies, industry and charities with research interests in this field.
2.2.9 Promote conditions in which more research can take place in NHS bodies within the
UK, including supporting clinicians and researchers conducting all types of peer reviewed
research.
2.2.10 Work collaboratively with funders, charities and researchers to increase the
financial support for CFS/ME research in the UK
2.2.11 Raise awareness of the achievements of the CFS/ME research community
2.2.12 Liaise with UK and international agencies and funders to share information and
respond to consultations.​
 
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What's in a name?
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Peter White demonstrates the purpose of the term 'CFS/ME' :
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https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

Peter White:
“...... I agree with Simon that CFS has to lead. The hybrid CFS/ME allows the broad church that encourages generalizable research, while allowing stratification where necessary.”
(quote 8)


Sonya Chowdhury, , CEO of Action for ME (AfME) replied
“ ... my preference is that we use ME/CFS and I suspect if we were to ask members, there would be a preference for this form from them too. However, I am prepared to work with either as the importance here is consistency and collaboration and if the general view differs, I will go with the majority.”
(quote 9)
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




So, 'CFS' has to lead because that will allow 'generalised' research (more fatigue/pain studies) on patient groups selected by non-specific research definitions.


And Sonia Chowdhury believes the important factor is "consistency and collaboration" and demonstrated early on her willingness to go along with the majority. Dissenting patients and charities can be 'Dissed and Dismissed' with the conveniently prepared 'extremist/militant harassers and troublemakers' label.


So the patients "Had a Voice" via the collaborating charities. A voice that was co-opted or ignored. So much for influencing from the inside.


I think the Collaborative will throw in just enough "generalised" bioresearch to keep patients pacified
..... and some will be grateful for being thrown a stale crumb or two, whilst the biopsychosocial train rolls ever onwards decade after decade. Aided, as always, by the Science Media Centre (SMC).

The SMC has far more of a "Voice" than the patients will ever have.

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Simon

Senior Member
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I worry about the selectivity of the Tymes Trust information.

I'm pretty sure many people were consulted about new researchers, not just Simon Wessely. That includes the ME charities on the board as well as biomedical researchers like Julia Newton.

From the beginning, it's been an explicitly broad church, so of course proponents of biopsychosocial research are being involved and consulted. The information released by Tymes Trust implies, unfairly, I think, that this is the exclusive focus.

As far as I'm aware, the view that FOI requests are both vexatious and harassment is the view of some CMRC members, but is not an official CMRC position.

As for FOI requests for trial results being harassment, here's what Ben Goldacre has to say as part of the All Trials campaign:
We need immediate access to the full methods and results of all trials on all uses of all the treatments that are currently being prescribed to millions of patients

The All Trials campaign is backed by the MRC, the Wellcome Trust, NICE, the BMJ, amongst others.​

Finally, it's worth noting the perspective of Prof Stephen Holgate, the chair of the CMRC and driving force behind its establishment. In his view, research needs to focus on causal molecular pathways.
A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research
Equally, he is insistent on including all shades of research, but he's not a very likely candidate to set up an organisation that exists to promote biopsychosocial research above all. He wants to promote research generally, and clearly wants to see a lot more biomedical research.
 
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Sasha

Fine, thank you
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I worry about the selectivity of Tymes Trust information.

I'm pretty sure many people were consulted about researchers, not just Simon Wessely. That includes the ME charities on the board as well as biomedical researchers like Julia Newton.

From the beginning, it's been an explicitly broad church, so of course proponents of biopsychosocial research are being involved and consulted.

I agree. We can expect major players to have influence whether they're on a committee or off it because a scientific committee doesn't operate in a bubble, not should it.

I think we can all agree that we'd rather the BPS school didn't exist and hadn't perpetrated such a spectacularly successful grab for funding in the past. We can also agree that attempts to overthrow them haven't worked so far. But that's no reason to stop trying - it's a reason to try harder and to try new things. I see progress, and I think that the Collaborative could be part of it. When we see good things happening, such as the biobank, we should be praising and supporting that work. That's the kind of initiative that's going to tip things heavily in favour of biomedical research.
 
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Simon wrote: “From the beginning, it's been an explicitly broad church, so of course proponents of biopsychosocial research are being involved and consulted.”

False.

From the beginning (2008) Professor Holgate proposed Biomedical Research, what he called 'omics' - genomics, proteonomics, metabolomics etc. NOT more ‘generalised’ research, which has already consumed tens of million of UK Public Money over decades. Professor Holgate said nothing about any “broad church”, or that the involvement of Peter White and Dr Crawley (not to mention Profs Wessely and Chalder) would be inevitable because the biopsychosocial school has to have their platform for influence and power.
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1,446
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The issue is the influence of Prof Peter White and Dr Esther Crawley (and apparently Profs Wessely and Chalder), who do not subscribe to a biomedical definition of ME, and who have wielded unconscionable amounts of influence in reconstructing ME as Chronic Fatigue (Broad church) and as a psychosomatic/psychosocial entity.


Those doctors have, over the years, received VERY many £millions in funding for CBT/GET and other psyche based studies into 'CFS', what they define as Chronic Fatigue. Whilst Esther Crawley claims to research ME, she, and Peter White, use broad church vague fatigue definitions.

But both White and Crawley have been given places on the CMRC, and Dr Crawley is Vice Chair.

AFME and AYME have long history of collaborating with Peter White and Dr Esther Crawley.



Prof Stephen Holgate, who proposed and chairs the CMRC, announced his proposals at a Royal Society of Medicine (RSM) conference in July 2008.....his proposals were for Biomedical Research, what he called 'omics' - genomics, proteonomics, metabolomics etc. NOT more ‘generalised’ research, which has already consumed tens of million of UK Public Money over decades.

Since then the only UK ME genetics researcher (Dr Jonathan Kerr) has lost his tenure. All of Dr Kerr's applications for funding from the MRC were rejected. Dr Kerr went on record stating that his applications were scuppered by psychiatrists on the MRC funding board. Dr Kerr's statements on that were recorded on video at an IIME conference.



It should be noted that the July 2008 RSM conference on ME at which Bioresearchers were allowed to speak, was arranged only due to a very widely supported ME Patient Protest outside the RSM in April 2008. The Protest, Petition, and Postcard campaign to the RSM was due to the RSM hosting a 'CFS' conference in April 2008 at which Biomedicine was not represented.

At that April 2008 RSM Conference Psychiatrists (Peter White included) promoted 'CFS' as a psychosomatic entity, and ridiculed the Canadian Consensus Criteria. The UNUM Representative, Professor Mansel Aylward also spoke at the RSM April 'CFS' Conference, as did Sir Peter Spencer, then CEO of AFME, against the wishes of the patients.


Due to the widespread and strong dismay in the patient community about the 'Psychiatrists CFS Conference' of April 2008, but especially due to the Protest outside the RSM, the Patient Petition, and a protest Postcard campaign to the RSM (post cards were sent from all over the world) the RSM convened a half day ME conference in July 2008, which patients and carers could attend as well as researchers.

At that July RSM Conference ME Bioresearchers spoke, alongside presentations from the children's charity Tymes Trust, and Prof Holgate announced his proposals for an MRC ME research collaborative of some kind.

Prof Holgate did not propose more involvement and influence by psychosocial proponents, who have wielded unreasonable power in ME research, policy, and perpetrated massively damaging, distorted portrayals of both the disease and the patients, over decades.


It should be noted that the RSM Patient Protest was disparaged by AFME and not supported by the MEA. However those charities’ representatives were more than happy to attend the second RSM conference that was engendered by the Patient Protest.

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user9876

Senior Member
Messages
4,556
I agree. We can expect major players to have influence whether they're on a committee or off it because a scientific committee doesn't operate in a bubble, not should it.

I think we can all agree that we'd rather the BPS school didn't exist and hadn't perpetrated such a spectacularly successful grab for funding in the past. We can also agree that attempts to overthrow them haven't worked so far. But that's no reason to stop trying - it's a reason to try harder and to try new things. I see progress, and I think that the Collaborative could be part of it. When we see good things happening, such as the biobank, we should be praising and supporting that work. That's the kind of initiative that's going to tip things heavily in favour of biomedical research.

I think there is a big problem with academic committees in general. From observations made in other subjects often those who set up and have time to sit on committees are not those with the good research idea and the intuition about where to look. But their presence on committees can limit what gets funded. There is often a lot of politics around committees and those with the political skills and time often win out over those with the good research ideas. To my mind that is why the research councils in the UK are very conservative about the research they fund and why its often 'me too' research following the latest fashion.

I also worry about people who set up 'research infrastructure' I've seen computer science projects where expensive research infrastructure gets build but never gets used because it never meets the needs of the researchers who were intended to use it. I worry it will be the same in the medical world where the infrastructure just doesn't have the right information to easily test a given hypothesis and researchers need to do their own data collection. This can also be a problem of research politics where those without good research ideas and intuition are looking to form projects and follow this route.

So for the CMRC I don't have a great deal of faith that it will stimulate research or get funding to the right areas. I'm sure it will look good on some of the CVs of people involved. I hope I will be proved wrong.

It has been going for about a year now and what are the measurable outcomes.
-- Have there been any additional MRC funded ME research. Since the 6 biomedical research proposals funded in 2012 I have only seen one additional funding since which Oct 2013 for Esther Crawley (I thought it was a very poor quality proposal). Maybe there are more to come?

-- Have we seen additional researchers thinking and innovating in theories about ME driven by the CMRC. Maybe it will be an outcome of their conference and we should wait to judge? But from I would expect from an organization trying to pull in new researchers we would be hearing about how ME is a difficult, challenging and exciting area for research; one requiring the best researchers efforts. But I've not heard this just research management speak. The tymes trust document here is very worrying since it shows that some are wanting to push a message that researchers are being harassed which doesn't encourage new people into an area.

-- I don't think running a conference is a good outcome to measure but the measure should be around ideas, collaborations formed as a result and eventually funded high quality research efforts.

Maybe its too early to judge but I've read the published minutes and it is not clear to me that this is a committee that has ideas on how to work towards collaborative goals. Hence I worry that it is just a political construct but one getting public money both in the 5000 from the MRC but also in the academics time which is also paid out of the public purse.

In terms of ways to encourage collaboration. I have been impressed by the EPSRC (Engineering and Physical science research council) 'sandbox' sessions where they invite researchers from different disciplines to meet, discuss areas and them form collaborative research proposals. The TSB (Technology Strategy Board) have also been quite good at drawing together collaborations. In ME terms the IiME conference seems to facilitate interesting discussions around mechanism but isn't tied into a funding mechanism.

In the end the innovation and answers won't come from committees but from researchers who have a good intuition about how various systems such as the immune system works. People like Jonathan Edwards and Ian Lipkin. I keep feeling that the Rituximab trials provide a way in to build insights and this looks like a way forward. Hence it seems important to try to get the type of discussions that Jonathan Edwards has on threads here (around potential mechanisms) to researchers who may get excited by the ideas and try to build on them and hence draw their knowledge in.
 

Sasha

Fine, thank you
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In terms of ways to encourage collaboration. I have been impressed by the EPSRC (Engineering and Physical science research council) 'sandbox' sessions where they invite researchers from different disciplines to meet, discuss areas and them form collaborative research proposals. The TSB (Technology Strategy Board) have also been quite good at drawing together collaborations. In ME terms the IiME conference seems to facilitate interesting discussions around mechanism but isn't tied into a funding mechanism.

That sounds good - if you've got specific examples of something like that working well and you don't think that the Collaborative are fully exploiting that approach, I hope you might contact Prof Holgate directly and make him aware. I agree that the IiME conference is a fantastic thing - and like you, I'd like to see a conference like that tied in with a route to government funding.

In the end the innovation and answers won't come from committees but from researchers who have a good intuition about how various systems such as the immune system works. People like Jonathan Edwards and Ian Lipkin. I keep feeling that the Rituximab trials provide a way in to build insights and this looks like a way forward. Hence it seems important to try to get the type of discussions that Jonathan Edwards has on threads here (around potential mechanisms) to researchers who may get excited by the ideas and try to build on them and hence draw their knowledge in.

Again, I agree - I think that this kind of committee is for facilitation of innovation rather than innovation itself, and that innovation comes from researchers. Both Prof Edwards and Dr Lipkin are attending the Collaboration meeting, which I think is a great thing. We need top-level people like that attending such conferences and giving a strong message that this is a biomedical research issue that scientists should be flocking towards.
 

Bob

Senior Member
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I wonder how banging on about CFS researchers supposedly being at the receiving end of harassment and death threats is supposed to achieve any of the following? (Or perhaps it's not intended to achieve any of the following!)
2.2 Objectives
...
2.2.6 Work collaboratively to raise the profile of CFS/ME research in the UK in both
professional and public domains.
2.2.7 Promote, facilitate and support the development of a good career structure for
CFS/ME researchers.
2.2.8 Foster research collaborations and communication between clinicians, researchers,
professional bodies, industry and charities with research interests in this field.
2.2.9 Promote conditions in which more research can take place in NHS bodies within the
UK, including supporting clinicians and researchers conducting all types of peer reviewed
research.
 
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alex3619

Senior Member
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I just got the last IiME conference DVDs in the mail the other day, though I have yet to view them. I have long been a fan.

The issue is about the consultation process, not the official views and stated intentions of researchers like Holgate. I have no problem with the approach outlined by Holgate using systems biology. I have been pushing such an approach where I can. Of course I might be a bit biased because I was trying to get into systems biology research myself. ;)

However the political reality of the UK research arena in CFS and ME is still very much apparent. There is, in my view, way too much conciliation and toleration going on to what is essentially very poor science, if indeed it qualifies as science at all. In the long run though I think approaches like those outlined by Holgate will lead to a much better understanding.

These situations are murky, unclear, apparently contradictory, and far too much like compromising with the bad in the hopes it will lead to good.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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Simon wrote: “From the beginning, it's been an explicitly broad church, so of course proponents of biopsychosocial research are being involved and consulted.”

False.

From the beginning (2008) Professor Holgate proposed Biomedical Research, what he called 'omics' - genomics, proteonomics, metabolomics etc. NOT more ‘generalised’ research, which has already consumed tens of million of UK Public Money over decades. Professor Holgate said nothing about any “broad church”, or that the involvement of Peter White and Dr Crawley (not to mention Profs Wessely and Chalder) would be inevitable because the biopsychosocial school has to have their platform for influence and power.
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My understanding was that the collaborative was supposed to be inclusive, in terms of bringing the whole field together, but that it is supposed to focus on biomedical solutions to the illness.

However, looking at the charter it doesn't seem to explicitly state that the collaborative was set up to encourage biomedical research, so perhaps I misinterpreted the situation because of Prof Holgates impressive personal statements:
2.2 Objectives
2.2.1 Develop inform and update a national strategy for CFS/ME research
2.2.2 Promote the need for world class research into CFS/ME across all fields
2.2.3 Facilitate all high quality peer reviewed research into all aspects of CFS/ME in both
adults and children. This will include: basic mechanistic research; translational research;
epidemiological research; health resource use research and research investigating all
types of treatment and prevention of CFS/ME.
2.2.4 Encourage multidisciplinary research by facilitating links with those already active in
the field and involving scientists in other fields to undertake research in CFS/ME.
 
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Min

Guest
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I wonder how banging on about CFS researchers supposedly being at the receiving end of harassment and death threats is supposed to achieve any of the following? (Or perhaps it's not intended to achieve any of the following!)

it looks like deliberate propaganda designed to put new researchers off whilst the Wessely school of psychiatry's 'fatigue' gravy train rolls ever onwards.
 
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1,446
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Min wrote: "it looks like deliberate propaganda designed to put new researchers off whilst the Wessely school of psychiatry's 'fatigue' gravy train rolls ever onwards."

The banging on about harassment and death threats looks like Science Media Centre propaganda.
What on earth is the SMC doing involved with the Collaborative?

Professor Holgate appears to be being rather naive about the strategies of the psychosocial school, and about the agenda and tactics of the Science Media Centre; in particular the SMC orchestrated media blitz alleging harassment and death threats against 'scientists'..
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