Funding of ME/CFS research in the UK

Yes, we could e.g. ask a Parliamentary Question:
NICE's review of NIHR funded research, into ME/CFS, found the studies to be low/very low quality. Typically these studies were unblinded and used subjective outcome criteria. Will the Office for Strategic Coordination of Health Research (OSCHR) take action to ensure that NIHR no longer funds these low/very low quality studies?
We could try variants of this approach/question.
Copy in the world and his uncle --- APPG's (ME & Covid), charities (ME & Covid), anyone we can think of who's high profile/influential.

I think I noticed that Jonathan suggested that it would be useful to ask for the MRC group, which considered potential research areas, to be reconvened - e.g. it could look at Actimetry (sleep & activity management?). That wouldn't necessarily be related to the GWAS study - more whether management can deliver quality of life benefits now. Actually, as well as delivering potential benefits, well conducted studies could put an end to the BPS brigade. However, we needn't necessarily get involved in that action/call to reconvene the MRC group.
See comments here - https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/

 

As noted in #16, this £5 mill does not include funding of most of the King's lot -Trudie, Rona, Simon and any PhD students etc. Nor any funding for Sharpe other than the PACE trial.

Kings seems to hav its own pot, bolded below.

"Acknowledgements
ML is funded by theNational Institute for Health Research(NIHR Doctoral Research Fellowship,DRF-2016-09-021). TC acknowledges the financial support of the Department of Health via the National Institute for Health Research (NIHR) Specialist Biomedical Research Centre for Mental Health award to the South London and Maudsley NHS Foundation Trust (SLaM) and the Institute of Psychiatry at King's College London. This paper represents independent research funded by the National Institute for..."

Above is from: https://www.sciencedirect.com/science/article/abs/pii/S0272735807001249

 

Interesting - thanks. @CRG was looking at the data re NIHR funding
@ringding

 

That I think is covered by:

https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-407017

"Chalder receives salary contributions from the NIHR - declared in: Paediatric chronic fatigue syndrome: 25 year perspective and Graded exercise therapy for patients with chronic fatigue syndrome in secondary care – a benchmarking study

"Professor Chalder acknowledges the financial support of the Department of Health via the NIHR Specialist Biomedical Research Centre for Mental Health award to the South London and Maudsley NHS Foundation Trust (SLaM) and the Institute of Psychiatry at King’s College London."

"TC receives salary support from the National Institute for Health Research (NIHR) Mental Health Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London."

The NIHR Specialist Biomedical Research Centre - https://www.kcl.ac.uk/ioppn/research/nihr-maudsley-brc is comprised of Institute of Psychiatry, Psychology and Neuroscience and the South London and Maudsley NHS Foundation Trust (SLaM), and forms part of King’s Health Partners Academic Health Sciences Centre. Lead at the centre is Vice Dean Mathew Hotopf and Carmine Pariante is on the staff, both previously active in ME/CFS research. This centre is clearly a source of funding for psych based research in ME/CFS but it's difficult to separate out from the many other activities that are covered by the organisation. The centre is perhaps more important as a source of influence on how the NIHR perceives ME/CFS than on actual commitment of resources. It might be worthy of advocacy attention but I would keep that separate from the very plain picture of NIHR grants"

And what I was referring to (should have been specific !) at:

https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/page-2#post-408284

"The structural problem appears to be undue influence for a BPS approach within the NIHR , and which is (or has been) immune to outside influence, I'd suggest it is that which needs to be the focus of challenge. So first of all get the past spending figures out into the public sphere, then perhaps explore influence via OSCHR, which the orgs are probably best placed to do."

Edit to add - if a friendly MP can be encouraged to ask about OSCHR as suggested above then that needn't wait on any action taken by the orgs.

 

So, @CRG, are you saying that funding of most of the research at Kings is covered by salaries for TC, RMM, SW and then doctoral research grants for PhDs etc.

 

There is one other possibility. I believe NIHR grant-funding committees require lay participation ("public contributors", they're called at NIHR). While serving on such a committee would be an arduous task for most pwME, it might be an opportunity for someone either mildly affected or, better yet, an ally without ME to bring some influence to bear. Sometimes all it takes is to have one person in the room with a good grasp of the underlying issues; even if no grant applications came through relating to ME, useful perspective could be provided.

 

So they are explicitly misusing biomedical funds to fund psychosocial pseudoresearch?

Of course they are. Because no such injury is complete without being insulting.

 

I think it is more complicated than that - one would have to go through all the studies by individual lead researcher and/or Phd supervisor to collect the data - that could be done, though at this point I'm not sure of the value of doing that. Of the three you mention, as far as I can tell only TC receives part of her salary from the NIHR Specialist Biomedical Research Centre partnership, RMM and SW have their teaching and admin salaries from KCL and so have their names on papers related to either as lead researcher or supervisory roles which would involve Phd publications. The only Phd project grant of those I listed above that was managed by KCL was the 2011 grant to Goldsmith - however that didn't translate to a single paper but fed into a whole lot of post Pace work, see funding statement for:

Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial

"Funding for the PACE trial was provided by the Medical Research Council, Department for Health for England, The Scottish Chief Scientist Office, and the Department for Work and Pensions. TC, ARP, and KAG were in part supported by the National Institute for Health Research (NIHR) Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust and Institute of Psychiatry, Psychology & Neuroscience, King's College London. KAG was also funded by an NIHR Doctoral Fellowship. We acknowledge the help of the PACE Trial Management."

 

Applying for Public Committee Member Roles with the NIHR

NIHR Evaluation Trials and Studies Coordinating Centre Patient and Public Involvement Reference Group

Payments to Public Contributors

The requirements look pretty challenging and I'm not sure that there's huge opportunity to impact NIHR culture. There might be value in reaching out to existing disabled members.

 

Interesting inhouse NIHR perspective: https://www.s4me.info/threads/long-covid-and-the-ghost-of-nursing-theory-2022.24898/

 

I'm assuming someone else has already mentioned the following NIHR funded Biomedical research centre at 'SLam' ie Kings+Maudsley?: https://www.maudsleybrc.nihr.ac.uk/about-us/

One of their £66m grants was awarded in April 2017-2022. I can see what it says it does cover but not a lot of detail below that and whether it is additional areas to those listed which therefore would include ME. Anyway this would put NIHR 'close' to King's dept

And I've noticed a longer list of such funded research cenres, institutes, services here: https://www.kingshealthpartners.org/research/national-institute-of-health-research

Which interestingly includes a research design service London which "helps health and social care researchers develop competitive funding applications

This is all under the 'King's Health Partners' (and academic health sciences centre for London) which is designated as a national centre for health research under NIHR: https://www.kingshealthpartners.org...ignated-as-an-academic-health-sciences-centre

And it also has the centre for global mental health: https://www.centreforglobalmentalhe...ttachments/2019-11-06/CGMH 10 Year Report.pdf

 

Received this reply from Rory:
"Dear Francis and Evelien,

Happy to help with this if I can - have you approached any UK MPs at this stage?

I can certainly seek some engagement with the Shadow Health team (Labour) - do you have a fuller briefing note or paper on the issues you raise that I could share initially?

Many thanks,
Rory"

So I think this is the key bit: "do you have a fuller briefing note or paper on the issues you raise that I could share initially?"

@CRG @ringding - I assume that the answer to this question "have you approached any UK MPs at this stage?" is NO - correct?

 

No from me. Also 'shudder' at "briefing note" - I'll start work on something, will share via dm - could get a bit messy for an open thread.

 

No from me. I've a bit of a family crisis going on which is taking all the effort I have I'm afraid, and is likely to for the next week or two. I can put you in touch with someone else from the MEActionUK volunteer pool who is interested? They're already involved with an MP on me funding so are interested.

 

@JellyBabyKid

 

Thanks @ringding

I refer back to post #31 on this thread, as I am part of the group working with with Alex Chalk

 

This one @NelliePledge ?
https://meassociation.org.uk/wp-con...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf

@CRG @FMMM1

 

Also, this briefing from MEAction UK:

https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf

 

I do think it is interesting that the organisation that the charities used to extract data for the report (Uber Research) did not pick up any of the Kings BPS research. Also a bit concerning that the charities who had logos on the report, including MEA and ME research UK did not pick this up/follow it through/comment on it.

http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf