Funding of ME/CFS research in the UK

[Snowdrop]

King's Health Partner's Academic Health Science Centre:

https://www.kingshealthpartners.org/about-us

Governance:

https://www.kingshealthpartners.org/about-us/our-governance

Mind and Body Champion:

https://www.kingshealthpartners.org/mindbody/champions

More on Mind and Body:

https://www.kingshealthpartners.org/our-work/mind-and-body/khp-mindbody

 

[FMMM1]

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) ?

Excellent analysis. Reminds me of a podcast title (haven't watched it yet) "Send in The Not Complete Clowns". What you've set out above makes those responsible for NIHR i.e. the Minister/Department for Health and Social Care look like complete clowns. So by copying in the APPGs (ME/CFS & Covid), NIHR and the charities you'll challenge the Minister/Department to explain either that they are not complete clowns or to take some action to address these failures. Reminds me slightly of Yes Minister* --- Sir Humphrey and the roof gardens ++. You'll get some smart arse in the Department replying that NIHR funds high quality research [I've had that reply]; however, those on the APPG etc. may take note that this makes the Government/them look like complete clowns --- so behind the mirth of the smart arse reply, there may be some attempts to get the Department/Minister to take steps to address this evident stupidity --- maybe throw in a hint about cronyism, jizz them up to take some action perhaps (anything that hints at cronyism?).
Actually the Yes Minister episode ends with (the smart arse) Sir Humphrey being dumped by the Minister -- some memorable quotes about 30 pieces of silver**. The folks who wrote Yes Minister said that the more unbelievable the storyline the more likely it was to be based on real events.

*[]
**

 

[FMMM1]

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) ?

Just wondering if we @Keela Too could come up with a friendly MP [Jim Shannon?] to ask some questions --- we're definitely

Celtic fringed

"don't mention the war!"
I managed to get my MP [Claire Hanna] to ask a question; could try again.

 

[CRG]

Just wondering if we @Keela Too could come up with a friendly MP [Jim Shannon?] to ask some questions --- we're definitely
"don't mention the war!"
I managed to get my MP [Claire Hanna] to ask a question; could try again.

I guess a motivated MP can find a way to pursue any issue but it's difficult to see where a non England MP could get purchase on a subject that's entirely about English allocated spending because there's not much room to claim a wider UK interest.

The previous (now sacked) Health Secretary made a long speech in early 2021 that sought to tie all four constituent nations together in health research: Saving and Improving Lives: The Future of UK Clinical Research Delivery which might give some kind of hook for an NI perspective, but there would be no room to make the point about geographic allocation of funds - which would be a shame because regional/institutional jealousies are a good getting the media excited.

 

[FMMM1]

I guess a motivated MP can find a way to pursue any issue but it's difficult to see where a non England MP could get purchase on a subject that's entirely about English allocated spending because there's not much room to claim a wider UK interest.

The previous (now sacked) Health Secretary made a long speech in early 2021 that sought to tie all four constituent nations together in health research: Saving and Improving Lives: The Future of UK Clinical Research Delivery which might give some kind of hook for an NI perspective, but there would be no room to make the point about geographic allocation of funds - which would be a shame because regional/institutional jealousies are a good getting the media excited.

Interesting insight/approach ----regional/institutional jealousies are a good getting the media excited.
I've sent an email to someone in England (from memory) whom I was in contact with a few years ago (2019). From memory they were working with their MP; just wondering if that was the Teresa May parliament, Boris --- hard to keep up.
I'll get back to you if they reply.

Bound to be someone on this site, who lives in England, and would act as a proxy. An alternative might be someone like ME Action.

EDIT - just sent you a message @ringding has offered to help - thanks ringding

 

[ringding]

I'm just about to climb the wooden hill, so will read the thread tomorrow, but happy to support finding an MP to ask a question. I can approach mine (minimal chance of success TBH), or find another in the South West through the MEAction Facebook group I help admin. We have a number of supportive MPs who are receptive to helping out.
Will check back tomorrow.

 

[FMMM1]

I'm just about to climb the wooden hill, so will read the thread tomorrow, but happy to support finding an MP to ask a question. I can approach mine (minimal chance of success TBH), or find another in the South West through the MEAction Facebook group I help admin. We have a number of supportive MPs who are receptive to helping out.
Will check back tomorrow.

Thanks ringsding, just wondering if @CRG would prefer an MP in a different geographic area - the South West of England (Bristol Uni) is benefiting disproportionately i.e. Esther Crawley (Bristol Uni) is getting 50% of the UK research funding.

 

[CRG]

Thanks ringsding, just wondering if @CRG would prefer an MP in a different geographic area - the South West of England (Bristol Uni) is benefiting disproportionately i.e. Esther Crawley (Bristol Uni) is getting 50% of the UK research funding.

It may not be a killer, but I would guess the MPs for the four Bristol constituencies - E, W, S and NW together with the immediate surrounding constituencies of North Somerset, NE Somerset, Kingswood, Thornbury/Yate and Filton/Bradley Stoke might be wary of upsetting the applecart, although political affiliations and very local jealousies - Bristol Uni versus UWE Bristol - might encourage a more enthusiastic response. Bath presents similar problems to Bristol.

The ideal would a be northern MP who could run with the 'levelling up' south versus north angle. But beggars not choosers etc so even if only some part of the issue can be raised in Parliament while NICE 2021 is still relatively new that should be a small win.

 

[ringding]

Darren Jones has been helpful in the past( Bristol North West) and Alex Chalk (Cheltenham) has been supportive. But if you'd like I'll check with the MEAction database to see which other advocates we have to call on elsewhere in the country?

 

[CRG]

Darren Jones has been helpful in the past( Bristol North West) and Alex Chalk (Cheltenham) has been supportive. But if you'd like I'll check with the MEAction database to see which other advocates we have to call on elsewhere in the country?

Whatever you think - I can only offer suggestions from the sidelines as per https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406747

Darren Jones may feel conflicted over having a go at his local University so the Crawley aspect would have to be toned down - leaving the allocation of funds per se as the fundamental question - so just questions a. and b. in the link post. Alex Chalk is on the Government payroll - so the approach there might be more about working behind the scenes, I'm not sure how that would work, though a written question to the Minister might be possible.

Edit to correct name - Chalk not Jones

 

[It's M.E. Linda]

Darren Jones has been helpful in the past( Bristol North West) and Alex Chalk (Cheltenham) has been supportive. But if you'd like I'll check with the MEAction database to see which other advocates we have to call on elsewhere in the country?

Whatever you think - I can only offer suggestions from the sidelines as per https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406747

Darren Jones may feel conflicted over having a go at his local University so the Crawley aspect would have to be toned down - leaving the allocation of funds per se as the fundamental question - so just questions a. and b. in the link post. Alex Jones is on the Government payroll - so the approach there might be more about working behind the scenes, I'm not sure how that would work, though a written question to the Minister might be possible.

[NB ^^ Alex Chalk, not Jones]

1. I very much like all of @CRG ’s questions a) - d)

2. Agreed. A Bristol MP may risk censure from some constituents who are employed by Bristol University. Would Darren also still be considered to be in a marginal seat?
I am sure @ringding (my fellow Admin) can find another helpful MP in the SW - certainly some of them have previously asked good questions.

2. I confirm that work is continuing in the background and Alex Chalk still supports his constituents with M.E.



ETA: This tweet should have read “biomedical research”

 

[ringding]

Bit brain scrambled today, but from what I've read and understood, I think it's a good idea.
Perhaps best to not muddy the waters with what Alex is doing (with guidance from @It's M.E. Linda et al) and go for a separate MP with some separation. It's a couple of years since I worked on the database so I've asked on Slack for a current status of it. I'll come back with some suggestions when I've got them...

 

[FMMM1]

It may not be a killer, but I would guess the MPs for the four Bristol constituencies - E, W, S and NW together with the immediate surrounding constituencies of North Somerset, NE Somerset, Kingswood, Thornbury/Yate and Filton/Bradley Stoke might be wary of upsetting the applecart, although political affiliations and very local jealousies - Bristol Uni versus UWE Bristol - might encourage a more enthusiastic response. Bath presents similar problems to Bristol.

The ideal would a be northern MP who could run with the 'levelling up' south versus north angle. But beggars not choosers etc so even if only some part of the issue can be raised in Parliament while NICE 2021 is still relatively new that should be a small win.

I've another possible route; Rory Palmer [Bosworth - Leicestershire], former Labour MEP was quite helpful. I'll see if I can find contact details and ask him if one of the Labour MP from that neck of the woods could help.

 

[It's M.E. Linda]

I've another possible route; Rory Palmer [Bosworth - Leicestershire], former Labour MEP was quite helpful. I'll see if I can find contact details and ask him if one of the Labour MP from that neck of the woods could help.

Rory Palmer still very supportive of PwME on Twitter and shared when Evelien (@Michiel Tack ) last spoke at the European Parliament (December 2021).

 

[FMMM1]

Darren Jones has been helpful in the past( Bristol North West) and Alex Chalk (Cheltenham) has been supportive. But if you'd like I'll check with the MEAction database to see which other advocates we have to call on elsewhere in the country?

I've sent you a private message with Rory Palmer's email. As per the message Rory should be able to come up with a contact.

Yes MEAction may have some contacts - that would be helpful.

 

[FMMM1]

[NB ^^ Alex Chalk, not Jones]

1. I very much like all of @CRG ’s questions a) - d)

2. Agreed. A Bristol MP may risk censure from some constituents who are employed by Bristol University. Would Darren also still be considered to be in a marginal seat?
I am sure @ringding (my fellow Admin) can find another helpful MP in the SW - certainly some of them have previously asked good questions.

2. I confirm that work is continuing in the background and Alex Chalk still supports his constituents with M.E.



ETA: This tweet should have read “biomedical research”

Looks good - I like this bit "The Secretary of State agreed to work with Alex to ensure appropriate research projects are properly supported”
Might just be that the concerns about the funding of "low and very low quality research", is finally getting through ---- let's hope so and well done to those banging that drum.

 

[FMMM1]

Just sent this email* to the former Labour MEP - Rory Pamer - see if Rory can come up with a helpful MP - really @CRG ideas
@ringding

"Rory,
I am part of the EMEC [European ME Coalition] group, you spoke very eloquently in support of Evelien's (cc) petition, on funding for ME/CFS research in the EU Parliament.

I've been in contact with some others in the UK (via the Science 4 ME website) regarding UK funding for research. We wish to highlight the following concerns (outlined below a - d); perhaps you can recommend an MP who might assist in this?

Thanks in advance,
Francis

The issues to challenge the 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 ?


* 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.
**- the single institution is Bristol University and the research provides no useful evidence since the studies are unblinded and use subjective outcome criteria (questionnaires) rather than objective outcome criteria (actimetry - FitBit type devices, which measure activity levels objectively).
***Esther Crawly Bristol University.

 

[It's M.E. Linda]

Looks good - I like this bit "The Secretary of State agreed to work with Alex to ensure appropriate research projects are properly supported”

Our group now has regular meetings with Alex Chalk on local and National matters. We will continue to encourage him to (urgently) press the Health Secretary for “ring fenced biomedical research commensurate with disease impact” and also for research studies to include both ME and Long Covid cohorts, alongside HC, to compare the similarities and research the differences (whether the study is for ME or LC)

Just sent this email* to the former Labour MEP - Rory Pamer - see if Rory can come up with a helpful MP - really @CRG ideas
@ringding

Thank you @FMMM1 ! Let’s hope Rory Palmer can find a suitable MP to ask @CRG’s excellent questions.

 

[FMMM1]

Our group now has regular meetings with Alex Chalk on local and National matters. We will continue to encourage him to (urgently) press the Health Secretary for “ring fenced biomedical research commensurate with disease impact” and also for research studies to include both ME and Long Covid cohorts, alongside HC, to compare the similarities and research the differences (whether the study is for ME or LC)



Thank you @FMMM1 ! Let’s hope Rory Palmer can find a suitable MP to ask @CRG’s excellent questions.

Agreed. We could also ask for a rerun of the MRC Committee appointed to identify potential research areas*, which led to the GWAS (Chris Ponting) study.
@ringding @CRG

*https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/

 

[CRG]

Agreed. We could also ask for a rerun of the MRC Committee appointed to identify potential research areas*, which led to the GWAS (Chris Ponting) study.
@ringding @CRG

*https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/

Time for capital letter soup. The UK's publicly funded research set up is pretty complicated and any process led by the MRC - which might now be overseen by UKRI with different priorities to the previous management - would not have a direct impact on NIHR.

There is the Office for Strategic Coordination of Health Research = OSCHR, which also includes Strategic Coordination of Health of the Public Research = SCHOPR but these have a somewhat low profile and it's difficult to know what influence they actually have.

At this point the MRC appears to be doing the right thing with the resources it has, and I'm not sure what could/should be asked of the MRC now, given there might reasonably be an argument to wait for completion of DecodeME to give direction of further resources.

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.

It might be a bit painful to not demand rapid action but we are probably looking at turning around a proverbial ocean liner and a long term quietly expressed strategy might be the better option for getting a course change. So firstly shame the NIHR for previous waste of funding and failure to listen to patients, secondly work with NIHR, MRC etc on DecodeME and use that as the pivot point to shift NIHR away from its psych based approach the ME/CFS.