Funding of ME/CFS research in the UK

Sly Saint

Sly Saint

Senior Member (Voting Rights)
I thought that in response to the Ministers statement at the debate on PACE yesterday that a break down of funding for research between psychological 'treatment' and actual biomedical research would also clearly show how skewed the research into ME is.

The only figures that have been collated as far as I know was in the report in 2016:
http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf
this is from 2006-2016
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sorry but I have to quote the next para only because it is so sickening

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Anyone have more up to date figures?
or is there a way these can be worked out?
obviously more was given to PDW...............and for Esther Crawley, then we have the rest of the 'club'........

It would be good to have a list (with the actual research projects as well as the authors and cost).

PS if such figures for the US or across the rest of the world exist (there are some in this report but again only up to 2016 and a lot has happened since then) then it would be good for comparison purposes.

If they do manage to secure another debate in Parliament it could be useful to have this info.

eta: just wondering if a similar list of published papers might be helpful?
 

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I have data in the form of spreadsheets and a database that covers from the 90s with reliability, and the 80s with less reliability, up to around 2012. I have extracted all the studies funded by the MRC or NIHR, but not those funded by charities. My summary works on studies rather than authors. In essence, the PACE trial, the FINE trial, the 5 studies funded in 2012 following the arm-twisting by the MPs on the MRC, and a handful of very small psychosocial stuff. NIHR had funded nothing up to their recent decision to fund Crawley. There were also a handful of what I would call investigations, carried out by a specialist, involving no extra specific funding, and seldom ending up with a published report as far as I can tell.

The spreadsheet was produced by the MRC, put online to download, then, shortly after I contacted them to check my figures and confirm that the spending on ME was so low, it vanished. But I had downloaded it by then. We did start to discuss whether we should keep a copy of it somewhere here, but didn't come to any conclusion.

The database also vanished from an NIHR website when I checked that they hadn't spent a penny on ME research. That was more mysterious because the university that hosted it hadn't realized it had gone, and had no idea what had happened. It took several months to track it down, but eventually a kind bod in NIHR gave me a link to an Access database, which Bob transformed into a format I could use. It is very big and sluggish, and contains details of what seems like all studies carried out in Europe over that time frame. It's a slow process to sieve through it for ME stuff.
 
DigitalDrifter said:
Does any one know how much the government spends towards ME per year? Also how much of it goes towards quack psychosocial research?
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There is no Government defined figure for ME/CFS research. There are two sources of Government funding for medical research, the Medical Research Council and the National Institute for Health Research - both of these are contributing to the DecodeME study, I can't recall the exact split but the total is £3.2 million. The NIHR is also currently funding three BPS focussed studies 1) Measuring Health in Children with CFS/ME with an award over 30 months of £149,457 2) Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK which is£1,026,403.00 over six years, ending 2022 and 3) Depression in paediatric chronic fatigue syndrome (CFS/ME) at £317,866.00 also over six years ending 2022. NIHR has supported other BPS research in the past, you can search here: https://fundingawards.nihr.ac.uk/search

The MRC was the major funder of the PACE trial but has not provided significant funds for BPS research since 2011 although there are two studies https://gtr.ukri.org/projects?ref=MR/K020269/1 and https://gtr.ukri.org/projects?ref=MR/M02363X/1 which might not meet approval from PwME. There are links to 2 spread sheets at the bottom of this page https://mrc.ukri.org/funding/scienc...e/our-science-and-contacts-psmb/mrcfs/#expert which list MRC historic funding of ME/CFS linked research.

Off topic question - how do folks prefer links - I've been using bracket numbers in post text and putting the raw htmls at the bottom of the page, above I've used inline links and raw html in the text - which of these three ways of doing things is the easiest to read ? Poll now at: https://www.s4me.info/threads/links-in-posts.23391/

Edit to correct link
 
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Trish said:
In the UK the funding for all this crap BPS research comes, as far as I know, from the NIHR. There are lots of universities and clinics involved in employing the researchers, but they don't fund the research.

I think if we want this stuff stopped we need to educate the NIHR and ethics committees about not funding and approving such research projects on the dual grounds that they are already proven ineffective, so it's a waste of money doing more of the same, and that they can't produce usable results if they keep using unscientific methodology.
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^Absolutely this^

A complication is that in the weird semi devolved world of the UK, NIHR is effectively 'English NIHR' so engagement with the organisation has to be made on that basis. Forward ME would be the ideal locus for communicating with NIHR and its political masters but there's no reason that any group of patients shouldn't seek to get the ball rolling so long as the approach isn't identifiable as exclusively or predominantly from NI, Scotland or Wales - so if politicians are recruited those from English constituencies would be key.

NIHR Grants can be searched at: https://fundingawards.nihr.ac.uk/search - the top left has an award type drop down box - a large proportion of the chronic fatigue syndrome grants were for "career development" !

This may be relevant:

https://www.s4me.info/threads/uk-ni...se-public-partnerships-call-brief-2022.24423/
 
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Snowdrop said:
Does anyone here know, Is the funding that comes from the NIHR for the BPS studies from the mental health section?

Here are the leads in the various areas at NIHR:

https://www.nihr.ac.uk/about-us/contact-us/directory.htm

Trying to 'follow the money'
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Awards are classified by programme areas, and these change over time - see current Programme Acronyms https://nihr.opendatasoft.com/pages/nihr-awards-filters/#-value-of-awards (lower right side).

Below are all the grants I could find using https://fundingawards.nihr.ac.uk/search on terns CFS, ME, ME/CFS, Chronic Fatigue Syndrome, Myalgic encephalomyelitis doesn't include the Decode ME allocation.



Award code > Award Title > Contracting Organisation > Chief Investigator > £s > completion date



97/41/08
Cognitive behavioural therapy in chronic fatigue syndrome: A randomised controlled trial of an outpatient group programme
University of Bristol
Dr Hazel O'Dowd
£75,432.00
2008


CS/08/08/06
Evidence based prevention, identification and treatment of chronic fatigue syndrome (CFS/ME) in children and young people
University of Bristol
Professor Esther Crawley
£816,199.28
28/02/2014


PB-PG-0609-19108
Chronic Fatigue Syndrome (CFS/ME) interventions within the Primary Care Setting: Developing resources for support and self-management in primary care.
NHS Central Manchester CCG
Dr Lisa Riste
£234,129.00
28/02/2014


DRF-2011-04-061
Mediators, Moderators, Mixtures and Model Averaging
King's College London
Ms Kimberley Goldsmith
£287,517.06
2011


PB-PG-0610-22060
Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome: a randomised controlled trial in secondary care
Barts Health NHS Trust
Professor Peter White
£343,008.00
01/04/2016


PB-PG-1010-23253
Early Intervention In Fatigue: A Feasibility Study
North Bristol NHS Trust
Dr Hazel O'Dowd
£214,613.00
01/08/2014


PDF-2013-06-011
CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services
University of Bristol
Dr Simon Collin
£320,885.66
31/12/2016


SRF-2013-06-013
Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME).
University of Bristol
Professor Esther Crawley
£840,691.00
28/02/2019


RP-DG-1213-10001
Fatigue: acute fatigue Assessment and Management in Everyday practice (FAME)
Southern Health NHS Foundation Trust
Professor Paul Little
£99,962.00
01/06/2018


14/26/08
Medically unexplained symptoms(MUS): primary care intervention
The University of Sheffield
Dr Joanna Leaviss
£205,194.62
2008

14/192/109
Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK
University of Bristol
Professor Esther Crawley
£1,026,403.00
01/05/2022


ICA-CL-2015-01-019
Developing an activity pacing framework for the management of chronic pain/fatigue
Pennine Acute Hospitals NHS Trust
Dr Deborah Antcliff
£108,331.00
31/01/2020


DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome (CFS/ME)
University of Bristol
Dr Maria Loades
£317,866.00
28/02/2022


DRF-2017-10-169
Developing an effective intervention for younger children (5-11 years) with Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME)
University of Bristol
Miss Amberly Brigden
£222,971.00
01/04/2021

NIHR200509
Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice.
Royal United Hospitals Bath NHS Foundation Trust
Professor Esther Crawley
£149,457.00
02/09/2022


Total = £5,262,659.62
 
Institution receiving most Grants/value:

University of Bristol....Dr Hazel O'Dowd.................................... £75,432.00
University of Bristol....Dr Maria Loades................................... £317,866.00
University of Bristol....Dr Simon Collin.................................... £320,885.66
University of Bristol....Miss Amberly Brigden............................ £222,971.00
University of Bristol....Professor Esther Crawley........................ £816,199.28
University of Bristol....Professor Esther Crawley........................ £840,691.00
University of Bristol....Professor Esther Crawley...................... £1,026,403.00

Total...................................................................................£3,620,447.94

Individual receiving most Grants/Total value:

University of Bristol.... Professor Esther Crawley.................................................. £816,199.28
University of Bristol ....Professor Esther Crawley...................................................£840,691.00
University of Bristol ....Professor Esther Crawley............................................... £1,026,403.00
Royal United Hospitals Bath NHS Foundation Trust....Professor Esther Crawley..........£149,457.00

Total........................................................................................................... £2,832,750.28
 
Using these NIHR figures in advocacy. For reasons I noted in the Flottorp thread:

"A complication is that in the weird semi devolved world of the UK, NIHR is effectively 'English NIHR' so engagement with the organisation has to be made on that basis. Forward ME would be the ideal locus for communicating with NIHR and its political masters but there's no reason that any group of patients shouldn't seek to get the ball rolling so long as the approach isn't identifiable as exclusively or predominantly from NI, Scotland or Wales - so if politicians are recruited those from English constituencies would be key."

being Celtic fringed I haven't got the necessary standing to take this forward. But if I had a helpful MP in an English constituency - though not in the Bristol region - I would ask the MP to consider asking questions of Ministers about these figures. The objective would firstly to get them on public record, and then further to raise concern about NIHR choices in terms of backing approaches not supported by patients and which yielded little or no ultimate benefit, to raise concern about continued backing of what was clearly a failed approach (as per NICE) to raise concern about apparent 'favouritism' of preferred researchers, a preferred institution and lack of institutional and geographic diversity in funding of research into ME/CFS.

It's important to understand the limitations of what an MP questioning can achieve - it won't alter anything immediately, it won't get the Government directly involved and it won't change the institutional brief of NIHR or the parameters under which it operates. But the raising of 'concern' can have useful long term impacts - it lets the Government and more importantly Departmental civil servants that the public is watching, it lets NIHR know that at least one politician plus some element of the public is watching and is interested. There may also be some media interest.

So on that basis, (and having provided the figures and source), the questions I would ask a supportive MP to ask the relevant minister are:

a) why out of over £5million spent by the NIHR on research into ME/CFS prior to 2022 has this expenditure been committed solely to psychologically based interventions or the career development of those investigating psychologically based interventions ?

b) why long after it was clear that such psychologically based interventions had little or no value for patients or the health service* did the NIHR continue to fund this area of research ?

c) why prior to 2022 has just a single institution been in receipt of 69% of all the funding committed to ME/CFS research by NIHR ?

d) why prior to 2022 has just a single researcher been in receipt of 53% of all the funding committed to ME/CFS research by NIHR ?

An additional complication is that currently the relevant minister is in the House of Lords** but anyway the questions are best put as a written question and then some bag carrier gets to respond in the Commons if the MP wishes to pursue it. The answer will of course be anodyne except for lauding Decode ME, but the put is put down a marker.

* important to include details of the evidence of PACE which even taken at face value meant that there was little point in continuing to invest heavily in CBT/GET. PACE destruction by Wilthsire et al. NICE 2021.

** Parliamentary Under Secretary of State (Minister for Technology, Innovation and Life Sciences)
https://www.gov.uk/government/ministers/parliamentary-under-secretary-of-state--137

To sum up - I'd do it but I can't, so I'm leaving it as an open suggestion. Maybe it's something for the orgs - anyone with good links, or should I write (groan) ?
 
So why so little record of funds spent through researchers at Kings.
?only this?
"DRF-2011-04-061
Mediators, Moderators, Mixtures and Model Averaging
King's College London
Ms Kimberley Goldsmith
£287,517.06
2011"

How have Simon and his followers Chalder and Moss Morris had their "research" funded to say nothing of all the PhDs they have been supervising for decades.

They were also excluded from another way I sourced NIHR funding.
 
MEMarge said:
Looking again, the funding from #1 only lists K Goldsmith from Kings as well.

So where are SW and his puppets getting the money from?
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The figures I gave are specific to the limited search (terms = CFS, ME, ME/CFS, Chronic Fatigue Syndrome, Myalgic encephalomyelitis) - there may be other results using MUS, FND etc but my thinking was that these were too diverse to be useful for a fairly simple advocacy action. I also think it is most useful to identify current or very recent recipients where the expenditures are exclusively tied to ME/CFS - rather than say a broader BPS approach to COVID, MUS etc - so as to keep the message focused, something which is easily lost in both political and media spheres.

Historically the other main source of UK research funding has been the Medical Research Council (MRC) but as the the MRC seems to have not funded any outright psych studies on ME/CFS since PACE and its follow ups, and since the MRC is funding the largest part of Decode ME, my inclination is that, what is most useful at this point is to contrast NIHR with MRC, by treating MRC as (now) the good guys who have learned the lesson of CBT/GET failure, while NIHR has yet to make the science informed leap and abandon that dead end (notwithstanding NIHR's welcome support for Decode ME).

We probably need to be more precise when identifying researchers - any consensus or grouping that existed in the PACE era has undergone change and talking about a single monolithic group in terms of BPS, Wessely etc can gloss over differences that maybe useful in advocacy terms - an image of disparate misled/misleading researchers is a stronger position for us than a united block who by their common certainty are more likely to be accepted as 'right'.

Profs Moss Morris and Chalder are probably now, along with Crawley, the major UK named published psych researchers who have ME/CFS on their 'interest' lists. As Profs they are frequently last named, and not the grant recipient. In an about to be published paper - A research agenda for post-COVID-19 fatigue Moss Morris declares:

"Outside the submitted work, RMM reports personal fees from training in CBT for irritable bowel syndrome for Central and North West London NHS Foundation Trust, the University of East Anglia, and University of Southampton. She receives payment for consultancy to Mahana Therapeutics and is a beneficiary of a licence agreement with King's College London and Mahana therapeutics to bring Regul8 (to the NHS and other international markets)."

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.
 
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