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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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My point wasn't that the MS Society survey was biased.

My point was that I wouldn't be happy it being used at this moment in time for ME/CFS in the UK as it would likely be used to justify a lot of research done by biopsychosocialists.

One has to take political realities into the equation. It's a bit like asking was the PACE Trial a good idea: in theory, one might say it would be interesting to know how effective GET, CBT and a form of pacing are. In practice, I don't think having such a major trial led by Peter White, Trudie Chalder and Michael Sharpe at that moment in time was a good idea.
I didn't think it was being used as a template for ME/CFS research, but as an example of how a patient charity established research priorities, in this case using both health researchers and patients. And bear in mind that for MS, BPS is not such a big factor - I suspect things would have been spelled out more clearly by patients if it had been. If you factor that in then I'm not sure the list is that different from ME - but the point is it's a list of MS priorities, not ME ones. Similarities/differences are interesting, but no more than that.

Whereas the AfME list explicityly prioritises pathological pathways. Incidentally, the AfME list was based on a survey of poeple of whom 90% had ME. I wonder if the 6% choosing to prioritise psychological research came came disproportionately from the 10% who didn't have ME.

I also wonder how big the contrast in results will be when AfME send the same survey to researchers.
ETA: I'm not one of the people totally against the collaborative. But I think it's important to point out that it can easily be misdirected if people aren't conscious of possible problems.
My ETA too:
Good to hear, and I am very conscious of how everything could go wrong.

It is at least a minor miracle that the CMRC ever came into being given the wildly diverging views represented within it (I gather the birthing pains were immense) and its ongoing existence will no doubt continue to be a 'challenge'. I'm sure there will be constant jockeying for position and attempts to take control of the agenda. That said, I think it has the potential to lead to more and better research in the UK than would have happened if it had never been created- and I think Stephen Holgate deserves immense credit for his work.
 
I didn't think it was being used as a template for ME/CFS research, but as an example of how a patient charity established research priorities, in this case using both health researchers and patients. And bear in mind that for MS, BPS is not such a big factor - I suspect things would have been spelled out more clearly by patients if it had been. If you factor that in then I'm not sure the list is that different from ME - but the point is it's a list of MS priorities, not ME ones. Similarities/differences are interesting, but no more than that.
Most of the same points/principles could be applied to ME. I'm pointing out the problems.

Charles Shepherd said on MEA on FB on Monday:

Interesting list of research priorities that have been identified by people with MS - a list that also partially overlaps with ME/CFS. We discussed this list at the UK ME/CFS Research Collaborative meeting at the MRC on Monday this week

So I don't think we can necessarily assume that they were talking about how it was drawn up. I've seen no mention about it being discussed in the context of how it was drawn up.

The AfME list has effective treatments as the second item. It could be operationalised like:
Other - end result, not type of treatment is specified
1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
3. Which treatments are effective for fatigue in people with MS?
7. Which treatments are effective to improve mobility for people with MS?
8. Which treatments are effective to improve cognition in people with MS?
9. Which treatments are effective for pain in people with MS?

The point I'm trying to make, which you appear to agree with, is MS is different from ME. The BPS is not such a big factor in that illness. So we have to be very wary copying what they do.
 
Most of the same points/principles could be applied to ME. I'm pointing out the problems.

So I don't think we can necessarily assume that they were talking about how it was drawn up. I've seen no mention about it being discussed in the context of how it was drawn up.

The AfME list has effective treatments as the second item. It could be operationalised like:


The point I'm trying to make, which you appear to agree with, is MS is different from ME. The BPS is not such a big factor in that illness. So we have to be very wary copying what they do.
I see what you mean. However, I hope AfME and other charities on the CMRC will note the AfME survey that showed 'psychological aspects' had minimal support and didn't make the top 3 of 94% of responders ie patients are not looking for yet more psychological research into treatments for fatigue etc. That road has been well-travelled, with less-than-impressive resutls.
 
Simon said;
"That road has been well-travelled, with less-than-impressive results"

I don't know, Simon - they really do spend a lot of time and effort coming up with very impressive acronyms.
even the latest "money down the drain project" has provided us with GETSET...
Surely that's worth a few grand?;)

(For the foggy - I am being sarcastic)
 
There is ever seen to be a fight between 'treatment' now and 'research' for treatment (or cure) some time in the future.

Those who are pushing the 'management' options upon us seem to be to be doing very little more than reinventing the wheel.

All these projects are achieving little - they are not improving on the recommendations in NICE. All they are doing is - in my mind - wasting money.

Illness Management options are here to stay - until something better comes along. They don't seem very interested in using these funds to find the 'something better' - although that money Esther received recently I think was in part intended to discover if GET was good enough for kids or somesuch; but it still seems a waste and a repetitive waste to me.

Research - and I speaketh generally - in all other diseases comes in large part (75% +) from the voluntary and/or private sector. Take cancer research if you like or MS.

The results from the MS survey will like as not help direct - or reinforce - the spending priorities of the MS charity sector and not so much the 'government'.

I think we perhaps need to start thinking more about what our charities are doing with our money, and slightly less about what da government is.

The collaborative is not a funding initiative. They have no money. I am interested in their influence and in how a patient survey might help them reach a joint funding venture that embraces all ME charities and (to perhaps a lesser extent) government sources.

It's potentially very influential. It could for example influence BACME as well as the MRC and that other body I can't remember who funded Esther recently: but it will still depend on attracting researchers to whatever projects are highlighted.

This is where we have fallen down before. But perhaps collaborative efforts will - unlike in the past - be of sufficient size (£) to make a study significant and attractive.
 
Simon It fascinates me that AfME of all charities are doing this survey - when they have no money :)

I'm pleased they've been giving money to research in recent years. Generally under £100,000 a year I think, sometimes a lot less than that, but still something.

I remember for many years, they were just lobbying which I think probably influenced them to support the application of the PACE Trial for funding - so that there was some research happening they could point to.
 
There is ever seen to be a fight between 'treatment' now and 'research' for treatment (or cure) some time in the future.

Those who are pushing the 'management' options upon us seem to be to be doing very little more than reinventing the wheel.

All these projects are achieving little - they are not improving on the recommendations in NICE. All they are doing is - in my mind - wasting money.
Yes.

And I don't want to see the collaborative coming up with something which would overly justify more funding of such research.
 
I'm pleased they've been giving money to research in recent years. Generally under £100,000 a year I think, sometimes a lot less than that, but still something.

I remember for many years, they were just lobbying which I think probably influenced them to support the application of the PACE Trial for funding - so that there was some research happening they could point to.
In 2012-2013, they spent £57,713 (ref:

http://www.actionforme.org.uk/Resou...informed/annual-report-and-accounts-12-13.pdf )

They have the following policy now:

Research Fund Trustees have also elected to set aside 25% of any legacy received to a designated research fund.

This has resulted in a transfer of £30,000 in 2012/13. These are being used to support several new pilot research
projects initiated this year.
 
A small bit of qualitative data from Action for ME's research priorities survey

http://bit.ly/17I1CPn i.e.
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/annual-report-and-accounts-12-13.pdf

We recently asked people with M.E. to let us know what their research priorities were.
We received more than 1,000 replies.

Here’s just a few:

- “I think we need to have more biomedical research to understand what is actually going wrong in order to find treatments. It’s the only way forward.”

- “I’d first support research which aims to prove once and for all that this is a real, physical illness, which we are not fabricating.”

- “I would like to see a cure in my lifetime. I would also like to see more understanding of the illness and effective treatments created. Thank you for working hard on our behalf.”

- “I need a cure and/or the ability to prove that this condition exists and how debilitating it is. Being judged because you don’t look ill is the final slap in the face.”

- “I just would like a cure – I have suffered 21 years now.”

The 6 NIHR-funded projects I mentioned here: http://forums.phoenixrising.me/inde...ative-means-business.23574/page-3#post-394575 don't do a good job in doing this, I would say.
 
Dolphin I think you might find that much of this research money has in recent years been in support of the collaborative effort to get the Biobank up and running. Though it may be AfME are unable to continue supporting this (I would say) vital initiative.

As a general point - I would certainly endorse a statement from any charity declaring x% of all donations (including legacies) being reserved automatically for biomedical research projects.

I was discussing with others about the positives and negatives of promoting individual projects rather than simply having a general research fund for donations.

I think it appeals more to people if there is a definite project - with details and reasons. I believe it would result in more support on the whole.

Rituximab and IiME is perhaps an exception - but it could be indicative of the way things should be done in future. I mean having a designated project has resulted here - and with e.g. that clinical centre of excellence (though I'm never sure where they are with that) in funds being raised and from sources that previously unknown sources.

There are downsides to designating projects e.g. it can tie you to the project, the project might not come to fruition, what happens if you don't raise enough cash etc. But for existing projects e.g. Biobank or for infrastructure, then why not? At least people have a better idea of where their money is going, and who is endorsing it and why.

Of course it also helps to have a highly motivated, committed and innovative fundraising team.

Any thoughts?
 
As a general point - I would certainly endorse a statement from any charity declaring x% of all donations (including legacies) being reserved automatically for biomedical research projects.

I was discussing with others about the positives and negatives of promoting individual projects rather than simply having a general research fund for donations.

I think it appeals more to people if there is a definite project - with details and reasons. I believe it would result in more support on the whole.

Rituximab and IiME is perhaps an exception - but it could be indicative of the way things should be done in future. I mean having a designated project has resulted here - and with e.g. that clinical centre of excellence (though I'm never sure where they are with that) in funds being raised and from sources that previously unknown sources.

There are downsides to designating projects e.g. it can tie you to the project, the project might not come to fruition, what happens if you don't raise enough cash etc. But for existing projects e.g. Biobank or for infrastructure, then why not? At least people have a better idea of where their money is going, and who is endorsing it and why.

Of course it also helps to have a highly motivated, committed and innovative fundraising team.

Any thoughts?
I think one needs a mixture. Ring-fenced funding for particular projects can be useful for fundraising. But I think ideally one wants a range of angles being looked at (rather than just one or two big projects) and it could be slow and awkward for researchers if they always had to wait for money to be raised (and they might not be sure it would be raised).
 
Biobank got £1m (US$1.59m) in funding http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/ . So AfME may not need to fund it now.

I am afraid that isn't the case. Those charities - MEA, MERUK, and AfME - who have got the project this far, will all be asked (and are in fact considering) to continue funding this project even with the NIH money in place.

Am afraid I can't break it down for you at the present time but hope to at some point.
 
Dolphin said:
Biobank got £1m (US$1.59m) in funding http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/ . So AfME may not need to fund it now.
I am afraid that isn't the case. Those charities - MEA, MERUK, and AfME - who have got the project this far, will all be asked (and are in fact considering) to continue funding this project even with the NIH money in place.

Am afraid I can't break it down for you at the present time but hope to at some point.

Thanks. Interesting.
 
Thanks. Interesting.

I didn't mean that to sound like 'I know things that you don't' it's just that I do know things are in flux at present and that you should get an announcement about who is doing what and how much, shortly.

It is true though that the charities will be needed to continue funding despite the NIH contribution. To be honest, it's all a mess in my own head, Dolphin, and I haven't had a chance to sit down and work all the figures out.
 
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.

I thought I'd already seen this mentioned elsewhere, but I thought that I should add that the Susses and Kent ME/CFS society is now a member.

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.
 
Do you happen to know what type of member? Non-executive perhaps?
They very much support the psycho-social side of things, including promoting LP to their members.

It said 'associate member' - have to admit that I'm not really sure what that means.

Didn't the guy who runs it have his wife report being cured by lp? That may be a confused semi-memory though, so don't pass it on! Any embrace of lp represents a disturbing embrace of quackery though.