United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

MEA
Work underway to support the development of a Delivery Plan on ME/CFS

https://meassociation.org.uk/2022/0...the-development-of-a-delivery-plan-on-me-cfs/

 

I have posted a short Twitter thread on the research aspect of the UK ME/CFS Delivery Plan, which is now massively delayed. I hope the report is published soon.

https://twitter.com/user/status/1682007446116618243

 

https://threadreaderapp.com/thread/1682007446116618243.html

 

"And we need our charities to understand that we're not likely to achieve a research breakthough through small, charity-funded research projects."

Personally I feel that is misrepresenting our charities. Is there any evidence that they believe that we are "likely to achieve a research breakthough through small, charity-funded research projects"?

In fact the ME Association says the opposite

• We continue to regard the funding and promotion of biomedical research as a top priority. Good quality research provides much-needed hope for a deserving and desperate patient community.
• We are learning more about ME/CFS – what triggers and perpetuates it – and one day we will discover effective treatments, but we cannot carry this burden alone.
• We can assist researchers with pilot investigations, with replication attempts, support them when they make grant applications to the main funding bodies in the UK, and work collaboratively with charity partners to fund larger studies.
• We will only see discoveries accepted when large-scale clinical trials are undertaken that demonstrate efficacy, and to this effect we will continue to lobby the Medical Research Council and National Institute of Health Research to support such investment.

https://meassociation.org.uk/research/


ME Research UK say

"Recognising that much of the existing research into ME has concentrated on psychological interventions designed to ‘manage’ the illness, ME Research UK believes that a programme of biomedical research is what is needed, and is what most patients and carers want to see. To achieve this, researchers with fresh, novel ideas have to be recruited and encouraged to undertake research in this field. This is the most difficult task of all, not least since government funding via the established research agencies is hard to access for groups wishing to research ME/CFS. It is at this leading edge that ME Research UK sees its role: to give help to biomedical scientists for novel research projects that would otherwise not be funded, and to support research groups to the stage where they can apply, on the basis of their previously published work, to major funding agencies for support."

https://www.meresearch.org.uk/about-us/


Action for ME are less clear but they do say

"Significant investment in high-quality research is critical." and "To end the neglect of M.E. we need a national strategy that includes a focus on research."

https://www.actionforme.org.uk/news/breakthrough-me-our-plan-to-rapidly-grow-research/

so my perception is that they are all aware that larger investment is needed but they are doing what they can with what they have. And I'm not aware that they are not willing to work together to achieve that.

 

I'm not suggesting they are not aware that larger investment is needed. But I don't think they've prioritized enough the need for a substantial change in direction from the large institutional funders. Remember, this is primarily what the CMRC was set up to do. But my experience in the CMRC PAG was that the charities did not prioritize this work, with the exception of Sonya and AfME in years before DecodeME was funded. It felt like it was all just a big hassle. AfME and MEA would not even cover basic secretariat support of circa £1K. It all just fell apart and the researchers that did attend CMRC meetings didn't feel supported. Perhaps they felt the CMRC was a spent force? But then what? What happened to AfME's Breakthrough project?

One thing that still bothers me is that each charity has their own research funding programme and they all do their own thing. This limits the size of the projects that can be funded (usually to ~£100–200K) and research programmes aren't usually sustained. It would be nice to see the charities (including Invest In ME Research) working together on a national research strategy.

 

But it was re-established with an entirely biomedical stance after the MEGA project was rejected and Crawley left (circa 2017). That's why I joined the PAG in 2019. I have no idea what's going to happen with MERC after the Delivery Plan is published. Everything is up in the air. I guess it depends on what's in the report.

 

I don’t think Invest In MER agree either, hence working towards The Centre of Excellence and being the founder member of the EMEA. Years of energy and fruitless efforts trying to engage the CMO.

They say-

Invest in ME Research (IiMER) has, as an objective, to make a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.

We aim to do this by concentrating our efforts on three main areas - funding for biomedical research into ME, education of healthcare professionals, the media and the public and lobbying for improvement in the treatment of people with ME and their families. We have no membership fees and try to offer as much as possible for free, or at cost price.

Our efforts are focused on setting up a UK examination and research facility (click here) which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Together with an ever growing number of resourceful and dedicated supporters we are all working toward the goal of making a positive contribution to progress.

 

Unfortunately, as most here will know, IiMER have had historical disagreeements with other charities, and they generally do not work together. I think that's a shame. I'm not sure if eventually they became involved in the Delivery Plan.

 

Agree with whom? I was making the point that there is no evidence that the major charities aren't willing to work together, or that they think that small projects are the most likely way to bring about substantial change.

 

There's a limit to what small organisations can achieve and in the charity sector most operate at close to their maximum with little in the way of slack or in the way of security for employees, from one financial year to the next. Operating in this way can make it very difficult to change parts of the organisation without impacting those things the organisation is especially good at, this in turn induces a certain conservativism - employees and the voluntary managements they support understand that by doing what they are doing, a defined need is being met and this is rewarded by feedback from charity members or a client group.

It's easy from the outside to say how an organisation should change to meet wider challenges but the organisation may have little room for manoeuvre given its existing obligations. As far as I understand AfME has no current commitment to be a funder of research with its resources fully committed elsewhere, the MEA continues with its broad approach of doing a bit of everything including funding the 'Ramsey Research Fund', while ME Research has the single focus of supporting research in to ME/CFS. Given that IiMER has always pursued a separate vision, then in practical terms the only two UK ME/CFS orgs that need to co-ordinate on research funding are MEA and MER - my (past) understanding is that the two do communicate on a regular basis.

The enduring problem is that all ME/CFS charities have such a small supporter bases - even on a very conservative estimate of ME/CFS numbers in the UK, then less than a fifth of patients are supporters/members of the UK organisations and the higher end of patient numbers membership/support is fractional. And internationally the UK appears to have the highest identifiable supporter base of any country. Difficulties of achieving necessary recruitment numbers into DecodeME has demonstrated how difficult it is to reach PwME, and with continued low levels of support for the charities I think it is very difficult to see how they are to be able to do things very different to their current fields of activity.

 

ME Association announces three new research grants, Oct 2019 | Science for ME
https://www.s4me.info/threads/me-as...w-research-grants-oct-2019.11845/#post-210349

“The ME Association announces three new research grants into an incurable disease that affects 250,000 Brits
Vital research funding that could lay bare the cause of one of the world’s cruellest illnesses can today be announced by the ME Association. “

 

Moved post
https://twitter.com/user/status/1744297288539963703


From tweet
Todd Davenport
I'm so excited to speak to the UK Department of Heath and Social Care Research Working Group on #MECFS on post-exertional malaise next month, sharing current physiological insights and future directions on potential responsible uses of clinical exercise testing to find a cure.

 

ME Association
·

DHSC Delivery Plan Working Group on Research
Workshop on Post Exertional Malaise (PEM) - held this afternoon
This was a really interesting Workshop with some excellent presentations from an international group of experts who are doing research into muscle function in ME/CFS and/or PEM
Speakers:
Professor Nicola Clague Baker - University of Liverpool and Physios for ME
Professor Todd Davenport - Workwell Foundation, USA
Professor Leonard Jason - USA
Professor Alain Moreau - Canada
Professor Karl Morten - University of Oxford
Dr Robert Wust - Netherlands (whose team have just published their important findings on muscle abnormalities in Long Covid)
Dr Michelle Barraclough - University of Liverpool (who spoke bout the use of fMRI (functional neuroimaging) in the investigation of cognitive dysfunction in SLE (lupus)

Dr Charles Shepherd
Hon Medical Adviser MEA

 

I think Charles is being generous here. I was also at this workshop. My initial understanding of the workshop was that there would be far more opportunity for attendees to input into what they considered to be important directions to research. Instead we had a series of presentations by researchers reviewing their work - useful perhaps to anybody new to the field. I personally consider my energy and time expended preparing and attending to have been wasted.

 

I agree with Andy. One of the big problems of online workshops is that you do not have the opportunity for private conversations - which are where people actually make progress at scientific meetings.

 

I understand the limitations of online workshops, however in-person workshops has the effect of limiting patient participation.

 

Yes that is a good point.

I was thinking more in terms of the objective of the workshop - which I think was to bring researchers together, including potential new ones, to beef up the scientific community resource. Something may have been achieved in some 'bonding' between a few researchers but my experience with meetings is that the real bonding and mutual inspiration comes from coffee break chats with targeted people.

I think the workshop was also poorly chaired, in that delegates were asked to raise questions to speakers as if for clarification or further detail. A good chair will raise some awkward questions about basic premises and encourage others to pitch in with views. Ian Bruce keeps saying that a lot has been achieved and how brilliant it all is. He doesn't seem to realise that none of us are very interested in what he thinks about it. He is not the Sunday School Teacher. Most people, as you say, are frustrated by how tedious and predictable the process has been.