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UK Research Collaborative means business

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by Simon McGrath

stephen-holgate.jpg

Prof Stephen Holgate

The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds - and they have key players on board too.


The Players

The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with Dr Esther Crawley as vice chair. There are then five charities and five further researchers to complete the Executive Board.

So far Professors Julia Newton (Autonomic system & fatigue), Hugh Perry (Neuropathology), Paul Little (Primary Care Research), and Peter White (Psychiatry) have been appointed, with one more to follow. I don't know the views of all the researchers, but that looks to me like a greater emphasis on the biomedical than the biopsychosocial.

Hugh Perry is a particularly interesting member as his research is on links between inflammation, the brain and disease. He was on the former MRC ME/CFS Expert group and is Chair of the MRC's Neuroscience and Mental Health (funding) Board. That's a very useful person to have onside.

The five charities are the ME Association (Dr Charles Shepherd), Action for ME (Sonya Chowdhury, chief executive), the CFS Research Foundation (Clive Kerfoot), Association for Young People with ME (Mary-Jane Willows) and ME Research UK (Dr Neil Abbott/Sue Waddle).

There are several official Observers too, which helpfully includes the three main funders of research in the UK: The Medical Research Council (MRC), the National Institute of Health Research and The Wellcome Trust. The MRC were represented by Joe McNamara, Programme Manager for the Population Science and Public Health Board, who went out of his way to offer support to the group, including resources for a planned AGM. The other funding Observers, along with the researcher Executive members, sent apologies, but are expecting to be present at future meetings.

Also as Observers are BACME, representing clinicians, and Ed Sykes for the Science Media Centre (SMC). The presence of the SMC is very much part of the broad church approach, as they have promoted a biopsychosocial view of ME/CFS up till now. However, Charles Shepherd did raise concerns with Ed Sykes about the way the SMC has presented ME/CFS research, so it does represent an opportunity for a dialogue.

The Collaborative would also like to have parliamentary input and this will be discussed with the All Party Parliamentary Group.

Action for ME are providing the secretariat for the CMRC, which has been funded by one of their donors who has been very impressed by the work of the CMRC. Administrative support is not usually seen as an exciting thing to fund, but I think that's a smart move by the donor.


Why it's critical for the ME Association to be in the Collaborative
Charles Shepherd explains why the MEA is taking a seat at the top table of the CMRC to argue for more biomedical research and clinical trials:
"The CMRC is a very big (and potentially extremely powerful) tent with prominent people from a whole spectrum of opinion on causation and management of ME/CFS actively involved ... part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with.
Would it be better for people with ME/CFS if we were not forming part of the Executive (remember the charities have five seats here - as do the researchers) of a multidisciplinary research organisation that involves almost all the established UK ME/CFS research groups, as well as new/young researchers, people from the MRC, NIHR, other major funding bodies, politicians from the APPG on ME at Westminster, and (in due course) the pharmaceutical industry? We would be letting down our members if we opted out."
Fulll version at the ME Association
Getting down to work: Funding and more

The Collaborative is setting up four 'Workstreams' to get things done. Little was said about three of them - Publicity & Awareness, Increasing Capacity, and Organisation (presumably more will emerge on this in future) but there were some significant developments regarding funding priorities.


Funding priorities: severely-affected and sub-grouping

The Collaborative wants to stimulate more funding for research and support a strategic approach for future funding. Stephen Holgate has said that fundraising will be a priority. It's quite possible that the UK Research Collaborative - backed by almost all the ME charities and all the main researchers - could pull in new and wealthy donors. Parkinson's research was revolutionised by a donation of £5 million - wouldn't it be nice if something like that came out of this initiative? (I do like to dream).

The MRC has already identified four priority areas including immune dysfunction and neuropathology, but the Collaborative has now also prioritised severely-affected patients and epidemiology (including sub grouping/phenotyping). Great to see the severely-affected (and severely-neglected) getting attention in research. The Board even discussed having ‘severely affected’ as a separate workstream, but it was better as a research priority to ensure that activity was cross-cutting and that the focus is on increasing funding to enable more research into this area.

Obviously this new approach brings the risk of the CMRC competing with individiual charities for funds so those involved are approaching this with some caution. Signing up to the research priorities "would in no way undermine the charities’ independence with regard to their own research activities". And it was agreed that all charities would provide a summary of their research priorities by the end of June to identify where the differences and alignments exist. Action for M.E. are asking for views to inform their research strategy as well as the priorities they will put forward to the Collaborative - you can take the AfME survey here.

As well as specific areas for research, the Collaborative might look at studentships, joint fellowships and bursaries to increase access to research in the field for early career researchers.

On the subject of research funding, both the ME Association and ME Research UK are both hoping to win for up to £2,000 in 'The Big Break'.


Dealing with the first spat

Given its 'Big Tent' make up, there are bound to be disagreements in the CMRC - and it looks like the first one has already taken place over the launch press release:
Some of the charities received negative feedback regarding some aspects of the press release and the notes to editors prepared by Bristol University. It was acknowledged that there are differences in some areas such as prevalence rates and that we need to produce information that best reflects the range of positions for future use [my note: this probably also refers to background notes included with the press release emphasing the role of psychological factors]. Sonya Chowdhury has coordinated a teleconference for the charities to discuss this and to prepare a draft for approval by the Board. It was reiterated that there was not an expectation that independent positions should be compromised.

I think the significance of this is not in the specifics of the press release, but in the fact that the problem was recognised - rather than swept under the carpet - and is apparently being dealt with constructively. If the CMRC is to succeed, I suspect there will need to be a lot more of this constructive work in future.


Big Pharma takes an interest

An unnamed pharmaceutical company has expressed an interest in working with the Collaborative and will be asked to show "what value they would create and what they could contribute to support the workstreams, especially with a focus on funding" ( :), my italics).


Annual conference

There will be an annual event for researchers which could provide a combination of learning and development through showcasing research projects, as well as time to develop collaborations on new projects.

So: the Research Collaborative looks like it's going to make an impact. Charles Shepherd described it as "a very big and potentially extremely powerful tent". Sonya Chowhury is positive too: "As a group, we are committed to action; to making a real difference and enhancing work in the research field ... It’s such an exciting time at the moment and it’s essential that we work collaboratively to leverage the potential and create even more capacity than we would by working on our own".

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Thanks Simon though I fail to see what White is doing there unless sometimes it is necessary to "sup with the tiger".
Peter White is very much part of the Big Tent approach tht Stephen Holgate has championed. Charles Shepherd said "part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with", but 'supping with the tiger' is neat.
Bloody marvelous. Thumbs up from little-olde me :)

Simon's previous article about this initiative is attracting comment and debate about this latest summary and can be found here.
Thanks for your comments there too. I understand why people have reservations about this initiative, but overall I think it's a huge opportunity. With the likes of Stephen Holgate, Julia Newton and Hugh Perry backing it, I can see why most ME charities are there too.
 
Charles Shepherd's case for the CMRC was omitted from the thread version of the full blog, so I'm including it here

Why it’s critical for the ME Association to be in the Collaborative

Charles Shepherd explains why the MEA is taking a seat at the top table of the CMRC to argue for more biomedical research and clinical trials:

The CMRC is a very big (and potentially extremely powerful) tent with prominent people from a whole spectrum of opinion on causation and management of ME/CFS actively involved … part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with.

Would it be better for people with ME/CFS if we were not forming part of the Executive (remember the charities have five seats here – as do the researchers) of a multidisciplinary research organisation that involves almost all the established UK ME/CFS research groups, as well as new/young researchers, people from the MRC, NIHR, other major funding bodies, politicians from the APPG on ME at Westminster, and (in due course) the pharmaceutical industry? We would be letting down our members if we opted out.

Fulll statement at the ME Association
 
Thanks Simon though I fail to see what White is doing there unless sometimes it is necessary to "sup with the tiger".
Peter White is very much part of the Big Tent approach tht Stephen Holgate has championed. Charles Shepherd said "part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with", but 'supping with the tiger' is neat.
People can discuss/debate with Peter White if they like. Not convinced it is likely to change his views.
 
Time will tell what will happen.

Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with pretty much anything.
 
It does seem that some patient organisations are led by those who feel it's sensible to just trust those who claim to be experts, while just campaigning for more money to be given to them. I'd like to see some more fiery patient organisations in there (even if I often disagree with them myself) just to mix things up a bit.

I'd like to see patient groups push for the release of the protocol outcome measures for the PACE trial through this organisation too. I'd be interested to see the responses from those others involved too: it might be a good way of seeing who is really interested in helping patients, and who want to use this group as a way of papering over past problems.
 
People can discuss/debate with Peter White if they like. Not convinced it is likely to change his views.
Think Peter White is as likely to change his mind as Julia Newton is to change hers. The Collaborative doesn't aim to produce a consensus view of the illness.
Time will tell what will happen.

Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with anything.
Bad things might happen, but it's pretty clear from Charles Shepherd's comments that the MEA is very committed to making this work.
 
It does seem that some patient organisations are led by those who feel it's sensible to just trust those who claim to be experts, while just campaigning for more money to be given to them. I'd like to see some more fiery patient organisations in there (even if I often disagree with them myself) just to mix things up a bit.

I'd like to see patient groups push for the release of the protocol outcome measures for the PACE trial through this organisation too. I'd be interested to see the responses from those others involved too: it might be a good way of seeing who is really interested in helping patients, and who want to use this group as a way of papering over past problems.

I think if in the future these meetings were televised - we might actually 'see' and hear what is said by our representatives. It has not always been possible to see them in action so to speak. We only get to hear about the result - or non-result.

Whilst in the USA these conferences - televised - are too much for me to watch/listen to pretty much all the time; at least they pull no punches. We as a community see it all and our more able (at the time) friends can try and summarise these things for us or we can revisit the event when we are feeling up to it.

I am not saying that this collaborative will be live-streamed, or that it will be all of the time. But I hope at least that the conference - if it proceeds - will be. Or that this will be a public event.

Anyway, just wanted to say that to be fair we don't always know what happens at meetings or behind the scenes and more transparency would be a good thing to have on this particular (and any other organisations) agenda :)
 
More transparency would certainly be a great thing. Some of my concerns about this do result from a knowledge of how the British state has operated in the past - with transparency and openness not exactly being key-words. Maybe things have changed though. It would be good to have a video recording of all their discussions (and bugs in the corridors outside!).

I think that we'd have far fewer problems around CFS if patients had been given access to researchers work/presentations/etc from the start.
 
Thanks for the summary, Simon.

I've made a list of current members, just for reference (in no particular order)...

Executive members:

Professor Stephen Holgate, Southampton University - Chair
Dr Esther Crawley, Bristol University – Vice Chair

Action for M.E. (Sonya Chowdhury) - Secretariat
Association for Young People with ME (Mary-Jane Willows, Matthew Wright)
CFS Research Foundation (Peter Muir, Clive Kerfoot)
ME Association (Dr Charles Shepherd)
ME Research UK (Sue Waddle, Dr Neil Abbott)

Professor Julia Newton, Newcastle University
Professor Hugh Perry, Southampton University
Professor Paul Little, Southampton University
Professor Peter White, Barts and The London School of Dentistry and Medicine

Non-executive members:

Non yet elected.

Observers:

Medical Research Council (MRC) (Joe McNamara)
National Institute of Health Research
The Wellcome Trust.
BACME
Science Media Centre (SMC) (Ed Sykes)

Proposed future members/observers:

A nursing representative.
A Member of Parliament.
 
Also for reference, this is the CFS/ME Research Collaborative 'charter':
http://www.actionforme.org.uk/Resources/Action for ME/Documents/cmrc-charter.pdf

I've just looked up the voting system:

3.4 Decision making
3.4.1 All members will be eligible to vote at the AGM.
(Note: It seems that this includes any non-executive members who may be elected in the future.)
3.4.2 Voting will ordinarily be using a simple majority, and by a show of hands, but may be
by ballot if the Chair so decides, in the event of late submission of items, or if requested by
any two members.
3.4.3 The Chair will not normally vote but, in the case of a tied vote, will have a casting
vote.

4.5 Decision making process
Decisions (including decisions on membership) will be made by the executive on the vote
of the chair plus at least 4 executive members (quoracy).


And this is how the formal meetings are organised:

3.3 Members meetings.
Members of the UK CMRC will meet once a year at the annual general meeting (AGM). At
this meeting, workstreams will present their progress in meeting objectives and
researchers will be able to present research findings. Confirmation of elections to the
executive will take place at this meeting (see Section 4). Additional meetings may also be
arranged if members so wish.

4.4. Meetings of the Executive
4.4.1 The Executive committee will meet at least twice a year in addition to the annual
members meeting.
 
Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with pretty much anything.

Yes, that's what I've just been thinking, after looking at the list of members, and the voting system. Looking at the voting system (which is: one-member one-vote), perhaps it is a good idea for organisations like Invest in ME, and the TYMES Trust to become members. (They've both said that they don't want to get involved because of the make-up of the membership.)
 
Whenever the psychiatrists have been involved in ME projects, the result has been detrimental for ME patients and I don't have any confidence that this will be any different. The proponents of the biopsychosocial model may be in the minority on the exective board, but they wield a disproportionate amount of power and influence outside the collabortive. I dearly hope I'm proved wrong, but I fear this collaborative will merely give credibility to Peter White and Esther Crawley's research and beliefs and help to further their agenda, whilst dumbing down the biomedical position. I wonder how long it will take for White and Crawley to start discussing their research, beliefs and positions in the same breath as the 'Collaborative'. They have the ear of the media (and very much so of the SMC), the government, the MRC, NICE and GPs and now they can claim to be part of a collaborative, endorsed by most of the ME patient groups and charities. Am I the only one to see a very alarming danger to this?

The alarm bells rang loud and clear for me with the launch press release, which highlighted psychological factors and absurdly inflated prevalence rates, which I assume were based on Esther Crawley's (very limited) research, which was studying chronic fatigue rather than ME, or even CFS. This may have been queried by such as MEA and will supposedly be discussed, but to be quite honest, the damage has been done as it has already been reported on and is in circulation. It's extremely difficult to withdraw damaging comments and I suspect nothing will be released to rectify the inaccurate information. Will this be the only time inaccurate and damaging information is released by the 'Collaborative'? With Crawley and White on the executive, I very much doubt it.

I do agree that sometimes one has to get around a table with people you disagree with and I think that there is a lot of truth in keeping 'friends close, and enemies closer', but I also believe that there are times to take a principled stand. I'm more inclinded to believe that if the major patient groups and charities stood together and refused to share a platform with the psychiatrists who believe ME is a psychological condition, it would alientate the psychiatrists rather than stimie research into biomedical research. My fundraising efforts will definitely be going to Invest in ME or Tymes Trust rather than any of the groups associated with the Collaborative, which may potenitally and indirectly benefit the psychiatrists.
 
There is something here I did not see before, a politically very astute move - at least potentially. If White and others with similar views are involved in the process, then they have a political/academic out for their past research. See, we are reformed, we help solve the puzzle. Its a face saving measure, and may make very big change in how ME is viewed more politically acceptable.

Of course I am presuming the puzzle is fully biomedical, but thats the way the objective evidence falls.
 
CaronR, I share many of your concerns, but this collaborative comes off the back of the MRC CFS/ME expert group, which had some of the same members, and which was also set up and chaired by Prof Stephen Holgate. And, in my opinion, the MRC expert group was a raving success, and absolutely transformed the way the MRC dealt with ME/CFS.

You can see the research that the expert group managed to get funded here:
http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm#P97_6648
(Look at the list of "Currently funded projects", which came about after the expert group was formed. The "Recently completed projects" were organised prior to the expert group.)

So I have some hope.