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Funding of ME/CFS research in the UK

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Feb 21, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    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
    "
    upload_2018-2-21_16-10-11.png

    upload_2018-2-21_16-10-45.png
    "
    sorry but I have to quote the next para only because it is so sickening

    upload_2018-2-21_16-12-25.png
    "
    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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    Last edited: Feb 21, 2018
  2. Adrian

    Adrian Administrator Staff Member

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    @Graham looked at the funding figures for his video a while ago
     
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  3. Graham

    Graham Senior Member (Voting Rights)

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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.
     
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  4. Andy

    Andy Committee Member

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  5. CRG

    CRG Senior Member (Voting Rights)

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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
     
    Last edited: Nov 17, 2021
  6. CRG

    CRG Senior Member (Voting Rights)

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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/
     
    Last edited by a moderator: Feb 19, 2022
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  7. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Last edited by a moderator: Feb 19, 2022
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  8. CRG

    CRG Senior Member (Voting Rights)

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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
     
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  9. Remain in Light

    Remain in Light Established Member (Voting Rights)

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    Jeez, that's depressing
     
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  10. CRG

    CRG Senior Member (Voting Rights)

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    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
     
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  11. CRG

    CRG Senior Member (Voting Rights)

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    Of that £5,262,659,62 total, 69% has gone to just one institution (BU) and 53% to just one researcher (EC), this hardly seems balanced even if we allow that psych approaches were worth pursuing.
     
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    Nauseating
     
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  13. Ariel

    Ariel Senior Member (Voting Rights)

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    This financial information is truly sickening.

    What is the explanation for all of these successful grant applications from one individual?
     
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  14. Kitty

    Kitty Senior Member (Voting Rights)

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  15. CRG

    CRG Senior Member (Voting Rights)

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    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) ?
     
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

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    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.
     
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  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    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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  18. Ariel

    Ariel Senior Member (Voting Rights)

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    I feel like the story of King's College London and its research, funding, and connection with public policy is something that needs to be told.
     
  19. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    And if you haven't found the money when looking for it why is it not transparent -- as it should be.
     
  20. CRG

    CRG Senior Member (Voting Rights)

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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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