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Launch of inclusive UK CFS/ME Research Collaborative

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by Simon McGrath


Prof Stephen Holgate

Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK's main research funders (MRC, Wellcome Trust and NIHR) it aims "to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.


Not everyone is happy

What's not to like? Well, although it's backed by most ME charities and almost all the UK's biomedical researchers, the collaborative is deliberately a broad church including all types of research, including psychological research. And that has upset a good number of patients (as you can see on this thread: "read and weep..." was one pithy objection).

The ME Association acknowledges these concerns, but its Chair Neil Riley argues:
"The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice. ...Provided the Collaborative drives forward and promotes research into the biomedical causes of ME then we shall be in there, taking an active part and supporting its efforts. "

Action for ME, AYME, the Chronic Fatigue Syndrome Research Foundation, The ME Association and ME Research UK all agree. The most significant ME charity choosing to remain outside the tent for now is Invest in ME, who have voiced their scepticism, arguing that what's needed is exclusive focus on biomedical research.

Nonetheless, it was an extraordinary achievement to bring together such diverse views into a single collaborative. As Stephen Holgate says, "It is the first time this has ever been done anywhere in the world—to get buy-in from these different communities”.


A new era of Research in the UK?

"a field that is in desperate need of new science"
- Stephen Holgate

For the last twenty years, the study of CFS in the UK has been dominated by researchers with a biopsychosocial perspective, so it's notable that the CMRC emphasises the need to do things differently. CFS is "a field that is in desperate need of new science", says Stephen Holgate. At the meeting he highlighted several new areas and opportunities:
  • The application of state-of-the-art research methodology, including Genomics, Proteomics and Metabolomics.
  • Using the new Networks approach as powerful tools for integrating and modelling biological data. This systems-based medicine approach focuses on how biological systems interact within the body, rather than looking at changes in individual genes or proteins. Nancy Klimas's Neuro Immune Centre in Florida, with Gordon Broderick providing network modelling, is a great example of this.
  • Emergence of large collections of biobanks. eg The UK ME-CFS Biobank and the CFI bio-bank in the States. Such well-characterised patient groups, with clinical and biological material, open the way to large-scale studies probing any number of biological mechanisms.
  • Holgate also wants to engage a wide range of new fields such as maths and environmental science who could all add to the party.
This looks to me like an agenda for cutting-edge biomedical research, particularly as he says:
By coming together in this way, the application of state-of-the-art research methodology... will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets.

As he's said repeatedly in recent years: "The key to success will be the engagement of scientists outside the field", drawing new blood into CFS research, bringing insights from other diseases, and encouraging young new researchers to study ME/CFS. Similarly, the MRC stresses the importance of proposals for research funding to include at least some researchers new to the field. And the MRC, who were at the launch, has a highlight notice encouraging specific biomedical areas, including neuropathology and immune dysregulation.

One other important area discussed was heterogeneity and case definitions, which is a big issue for the whole field. Stephen Holgate referred to CFS/ME as a 'complex group of conditions' ie multiple conditions with different aetiologies, and so 'phenotyping' - dividing patients into different groups on the basis of clinical information, or even biomarkers - is a priority too.


How will the new Research Collaborative make a difference?

It's still very early days for the research collaborative and the organisers hope that many new researchers will join the CMRC and help shape its future. However, it's already been agreed that there will be quarterly meetings between researchers and funding charities, divided into four different streams. The content of those streams will be decided at the first meeting of the CMRC on May 22nd. This meeting will also firm up research priorities, and a fundraising drive will be on the agenda too. An annual CMRC science conference is also possible, but with such a new organisation, much remains to be decided.

Stephen Holgate knows that some patients will continue to doubt the value of the new Collaborative, and anything he says is unlikely to change their minds. However, he hopes that the efforts of the collaborative, and ultimately the results of new research stemming from it, will persuade those patients that this venture will be making a big contribution to understanding ME/CFS.



Simon McGrath has a science degree, and has watched not much happening in ME/CFS research for a long time, but now thinks things are finally kicking off. He occasionally tweets on research: follow @pSimonMcGrath

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Comments

Help yourself Bob. I've got to admit, that it left me feeling pretty irate after I read it too.
 
The launch of the CMRC was discussed at the Forward with ME meeting on May 14:

The Chairman said that it had been good to see so many people involved.

She was shocked to see that the Charter for the Collaborative contained a ‘gagging’ clause. There appeared to be some confusion between the desire on the part of a number of individuals to engage in honest scientific debate and the activities of a very small number of ‘activists’ which might be construed as offensive.

Members expressed various concerns about aspects of the Collaborative. The Chairman said that these could be discussed with Professor Stephen Holgate at the July meeting. They could also ask him questions about the Charter and how the researchers would be vetted. She asked members to let her know of any questions they wanted to ask
I do hope someone said something constructive about it too :)

Professor Stephen Holgate will be addressing the next Forward with ME meeting, on 2 July.
 
When I read the title I immediately thought of "inclusive criteria". I'm now left wondering which of the 11 (or more) sets of criteria for ME/CFS these researchers will be using. Not that I'm trying to rain on anyone's parade, it could bring great change. With hope they'll create a new objective criteria (or better still, subsets based on objective diagnosis), because lets face it, research will be quite imperfect and suffer from a monumental legacy of credibility problems until we reach this mile stone of progress.
 
The launch of the CMRC was discussed at the Forward with ME meeting on May 14:


I do hope someone said something constructive about it too :)

Professor Stephen Holgate will be addressing the next Forward with ME meeting, on 2 July.
Not sure who was present at the Collaborative and also present at this Forward ME meeting, Simon. Charles and Sonja sent apologies and I think both might have been at the launch. Was Lady Mar at the launch also? I can't recall.

Stephen certainly gets about, doesn't he? Seems to be putting much effort into our condition and raising the profile. I should drop him a line again I think.

'Champion' [now do pass the ginger beer old chap] :)
 
When I read the title I immediately thought of "inclusive criteria". I'm now left wondering which of the 11 (or more) sets of criteria for ME/CFS these researchers will be using. Not that I'm trying to rain on anyone's parade, it could bring great change. With hope they'll create a new objective criteria (or better still, subsets based on objective diagnosis), because lets face it, research will be quite imperfect and suffer from a monumental legacy of credibility problems until we reach this mile stone of progress.
At their first meeting, CMRC made subgrouping a research priority - and I agree with you that this is crucial for progress.
 
UK CFS/M.E. Research Collaborative Executive Board
Teleconference meeting
Summary of discussion
19 July 2013

Minutes of recent executive (teleconference) meeting:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-190713.pdf.pdf
Charities have met to discuss the information in future press releases re prevalence. This is still being progressed.
First thing I noticed. Hope they agree to go with the NICE range and not the upper ranges that hit the news every once in a while. Feeling a bit nervous now as I had thought it wasn't the charities who were at fault but certain researchers who have a tendency to like citing large numbers. Fact of the matter is that nobody still knows what the prevalence is for this condition. Maybe the ME Observatory epidemiology projects will get us there: but until then the 0.2-0.4% range seems reasonable to me at least. Better than 1-2% at any rate.

Thanks Bob. Am reading through it all now :)
 
Some information posted by Sonya Chowdhury on AfME's Facebook page:

"It is good news that the NIHR recognise the need for more funding into M.E. and as you may know, we are working with the NIHR, MRC and others, through the Research Collaborative, to raise funding for priorities that were identified by people who responded to our survey - the five priorities we put forward were the top five from the survey."

"The five priorities were disease processes (to achieve a better understanding of the underlying pathology of M.E), more effective treatments, faster and more accurate diagnosis, clinical course of M.E., outcomes and prognosis, and severely affected patients."

https://www.facebook.com/photo.php?...omment_id=10476340&offset=0&total_comments=21


So, to list AfME's research priorities:
1. disease processes (to achieve a better understanding of the underlying pathology of M.E),
2. more effective treatments,
3. faster and more accurate diagnosis,
4. clinical course of M.E.,
5. outcomes and prognosis, and severely affected patients.

Items 1 & 2 seem very reasonable to me, as long as 'more effective treatments' doesn't mean continuously making fine adjustments to GET, and as long as looking into 'disease processes' doesn't pump research funds into studies looking at deconditioning and false illness beliefs.
Item 3 seems reasonable, depending on the nature of the study.
Items 4 & 5 seem reasonable as long as they aren't eating up funds that would otherwise go (for example) towards a Rituximab study.
 
So 2, 3, 4 & 5 can be used by A for ME as an excuse to give money to those whose work many patients are concerned by and do not want to support.
 
So 2, 3, 4 & 5 can be used by A for ME as an excuse to give money to those whose work many patients are concerned by and do not want to support.
No 1 as well, I think, if it goes towards research into deconditioning for example.
 
Notice from Action for ME re membership of the CFS/ME Research Collaborative:
http://www.actionforme.org.uk/get-informed/news/our-news/join-the-uk-cfsme-research-collaborative

Membership is open to researchers, charities, health care professionals, students and patients etc.

For patients, the free membership basically just seems to mean being kept up-to-date with progress.

Action for ME said:
Join the UK CFS/M.E. Research Collaborative

07 February 2014

Would you like to join the UK CFS/M.E. Research Collaborative (CMRC)?

The CMRC aims to promote the highest quality of basic and applied evidence-based and peer-reviewed research in to CFS/M.E.

Patients and carers who want to support the work of the CRMC are invited to become Associate Members. This is free and means they will be kept up-to-date with work progress, new initiatives and outcomes of meetings.

Alternatively, professional membership (£20 per year; £15 for research students) is open to UK health professionals, researchers and charities involved in research.

Find out more about joining the CMRC.
Find out more here:
http://www.actionforme.org.uk/get-i.../joining-the-cfsme-research-collaborative.htm

To join, complete the application form at the following link (it's a Word document download):
http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/cmrc-membership-form.docx
 
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@Bob It would seem that even as a patient I would be required to download a form, print it off, complete it, and return in the post. Seems a bit 'old fashioned' and cumbersome for the benefits I must admit. I'll try and discover more...
 
I have to disagree with Professor Holgate very strongly here. Learning from research into 'general fatigue' is fine. But ME/CFS funding should be used exclusively for OUR illness not diverted into yet more 'related illnesses'.

The issue with the involvement of psychologists in research into ME is less the discipline and more the evil individuals who have foisted insulting pseudo-science onto us and abused funding for their own ends. It's about WHICH psychologists are involved and the standard of science.

They have abused our funding and should not be getting more of it. We must be able to trust those involved in our research. I would not trust White/Chalder not to block research on Neurotransmitters that did not fit their viewpoint.