Research funding: Examples needed of ME research projects failing due to not getting funding

R

Richard Smallfield

Established Member
Hi,
I’m trying to find relevant information for a friend who is writing a book and would like to provide a list of research that has been stopped due to lack of funding.

Does such a list exist? I need references as it’s an academic book.

thanks,
Richard
 
Richard Smallfield said:
Thanks. I should have been more precise. ‘Stopped’ and ‘not started’ count as the same thing for the purpose of my question.
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I think to get any relevant links, your question needs to be more precise. Are you interested in only ME/CFS research? Biomedical only, or all ME/CFS research? In the UK, or worldwide?

Still, I don't quite understand your question. It seems what you want is a list of research proposals that have not been funded. But such projects aren't really 'not started' due to lack of funding. Ok, the total funding pot could always be more generous, but the real issue is that the number of proposals in ME/CFS is extremely low because of a lack of researchers—particularly those in biomedical research. And in some cases the quality of the proposal is not good enough.

ETA: You might find anecdotal evidence of researchers in this field struggling to get funding. See the link to Ron Davis' podcast above, but also Karl Morten at the University of Oxford has talked about this.

Hope this helps.
 
I echo InitialConditions' reply, there is no way to meaningfully answer the question.

Global health research funding is $100 billions, most of that is pharmaceuticals but even at the level of Institutional grant making the numbers are still vast, AND even then applications for funding greatly outstrip the annual budgets, which means that most proposals will not get funded. There's undoubtedly discrimination and favouritism - a whole subject of research in itself: Institutionalized biases in the award of research grants: a preliminary analysis revisiting the principle of accumulative advantage (Scihub full version) but demonstrating bias in an are of specific health research is hugely difficult.

There's information in this thread re: funding in the UK which in practice has been heavily weighted toward psychological approaches to ME/CFS https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/ but that doesn't show that alternative biomedical proposals were submitted to the funding bodies or that if such proposals were made, they met quality considerations or that they were unfairly discriminated against.

There have been cases where a medical researcher who has carried out research into ME/CFS has had their employment terminated, so one could argue that their research has stopped because funding was halted, but that is rather circular because researcher employment is often dependant on attracting grant funding and failure to submit successful bids means failure to meet condition of employment. And it tell us nothing about the quality of research or the quality of, or bias against any refused proposals.
 
Another angle is to look at how much research (biomedical) has relied on funding by patients. The MEA in the UK (might have some figures/examples), Invest in ME also might be able to provide examples.

Solve might have some examples re the US.

eta:
just re-read your initial post.
from a historical perspective there were a number of potentially promising avenues for ME research (some of which are now resurfacing with research for LC) way back, that were not followed up. Partly presumably due to lack of funding, but more likely due to the adoption of the biopsychosocial/psychosomatic model of ME and change to CFS (1990s in UK). Most available funding (which was still not a lot) was largely awarded to those 'researchers' who promoted this model.
 
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We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH's analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.
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We're number 1! We're number 1!

Here you can distinctly see the difference a biomedical does compared to a psychosomatic one:
We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer.
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The difference? Literally everything. It's the difference between success and locked-in failure.
 
CRG said:
I echo InitialConditions' reply, there is no way to meaningfully answer the question.

Global health research funding is $100 billions, most of that is pharmaceuticals but even at the level of Institutional grant making the numbers are still vast, AND even then applications for funding greatly outstrip the annual budgets, which means that most proposals will not get funded. There's undoubtedly discrimination and favouritism - a whole subject of research in itself: Institutionalized biases in the award of research grants: a preliminary analysis revisiting the principle of accumulative advantage (Scihub full version) but demonstrating bias in an are of specific health research is hugely difficult.

There's information in this thread re: funding in the UK which in practice has been heavily weighted toward psychological approaches to ME/CFS https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/ but that doesn't show that alternative biomedical proposals were submitted to the funding bodies or that if such proposals were made, they met quality considerations or that they were unfairly discriminated against.

There have been cases where a medical researcher who has carried out research into ME/CFS has had their employment terminated, so one could argue that their research has stopped because funding was halted, but that is rather circular because researcher employment is often dependant on attracting grant funding and failure to submit successful bids means failure to meet condition of employment. And it tell us nothing about the quality of research or the quality of, or bias against any refused proposals.
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I think underlining this, and the chilling effect it has on future applications being made by others or supported by the grant support mechanisms, other people avoiding the area for their projects or specialisms and so on, shows how important just having a list of ‘could have been’ research could be to have.

And that was in those brave enough and in a position at that one point to submit.

I don’t know how it would be framed or contextualised but it feels part of a list or dataset (with relevant other context) to make certain points. The narrative ‘Noone wants to work in it’ inferring because of patients or there being nothing to be found is going to be hard to unbundle without seeing what comes up from comparing the list or projects, people and places that didn’t get off the ground (the ‘what could have been) vs the list of those that did (and showing the repetition in the individuals, sums, places and often very methods issues in these).

But can see how having the data could be a nice starting point to see what a bit of analysis flags up
 
Sly Saint said:
Another angle is to look at how much research (biomedical) has relied on funding by patients. The MEA in the UK (might have some figures/examples), Invest in ME also might be able to provide examples.

Solve might have some examples re the US.

eta:
just re-read your initial post.
from a historical perspective there were a number of potentially promising avenues for ME research (some of which are now resurfacing with research for LC) way back, that were not followed up. Partly presumably due to lack of funding, but more likely due to the adoption of the biopsychosocial/psychosomatic model of ME and change to CFS (1990s in UK). Most available funding (which was still not a lot) was largely awarded to those 'researchers' who promoted this model.
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Agreed. And the old guidelines and pathways suggesting to avoid investigations in patients (meant and interpreted as it being like encouraging hypochondria in people they never excluded anything for before binging that label on) or assumption that anything found ‘wasn’t of note’ has pushed this ‘nothing biomedically wrong’ when for all we know there could be flags of things that eg when someone with ME gets eg flu or overdoes it crops up a lot.

To avoid this sounding like an entirely theoretical soapbox point, when you imagine how much ‘research’ BPS fatigue or PPS clinics squeezed out of retrospectives on a dataset that they can’t even confirm the condition validly for and nor why particularly some of the ideas were captured used to inform funding apps you can see how cyclical control of what information could be ascertained for about us vs not and by who has obviously been a big mechanism.

Just like coding people under more hysteria type areas vs sensible coding that flags what is actually wrong probably plays a part in what certain areas can claim is the ‘demand’ ‘usage’ or ‘savings’ when selling potential of a piece of research

so these 2points of context seem relevant in feeding into access to certain pots too.
 
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Hi @Richard Smallfield, good to see you here

As others have said, it would be helpful with more detail on what exactly you're looking for, and also on what it's for, its purpose (to the extend you're at liberty to divulge), to build trust. While I've seen you around elsewhere online making sensible and constructive comment, and therefore assume your book-writing friend is equally sensible, most people here don't know you yet.

It may also help to edit the title of this thread to something along the lines of 'Help: need examples of ME study projects failing due to no funding' to help attract readers with relevant knowledge. I'm sure the mods would be happy to help you with this if necessary.

I'm not one of those readers with relevant knowledge but here are some top of my head potential lines of enquiry.

$$$ stopped: have there been research centers or the like that didn't get funding renewal (most likely US)?

$$$ diverted: also US, wasn't there something about a pot of money destined for ME research spent elsewhere? quite a few years back I think

$$$ not given to start studies: are there accessible records kept anywhere of grants applied for but denied? Otherwise it would be a tedious task of approaching individual researchers to find out. The charities who fund some research probably have records but their rejections are likely largely due to limited $$$. What would be really interesting to see is the reasons given for public money grant rejections and how ME grants were evaluated and by whom

There may be some useful info in this thread:
https://www.s4me.info/threads/usa-nih-national-institutes-of-health-news.18724/page-9
 
UK
Grant applications accepted by the Medical Research Council

Projects live from 1993-94 to June 2008

Projects live from 1993-94 to June 2008.jpg
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All grant applications that were accepted by the Medical Research Council before the 2011 set of funding had primary investigators that were either psychiatrists or psychologists
 
(from http://meactionuk.org.uk/The-MRC-secret-files-on-ME.htm )


As Dr Jonathan Kerr, Sir Joseph Hotung Senior Lecturer in Inflammation, Department of Cellular and Molecular Medicine, Hon. Consultant in Microbiology, St George’s University of London, stated at the Invest in ME Conference held in London in 2006:

“It is rather sad that the MRC does not fund any biological studies such as we are doing, and I think the current…consideration of grant applications to the MRC on CFS is currently with the Neurosciences and Mental Health Board…and I think that (this) immediately biases the decision-making process because that panel is made up predominantly I believe of psychiatrists. It would be desirable if this could be reclassified (by the MRC) such that there would be money available…for biological approaches…It is a fact that currently the MRC does not fund any biological approaches”.

At the 2007 Invest in ME Conference, Dr Kerr repeated his message:

“We have applied several times to the MRC and on each occasion we were invited to submit those applications and on each occasion we got scores typically of 9, 8 and 3 – the 3 score was obviously from a psychiatrist who was complaining about our way of enrolling the patients, the criteria we had etc…David Tyrell told me the MRC will never fund biomedical research in CFS because they are in the thrall of the psychiatrists – so far, he has been right”.

DVDs of both these Conferences are available from http://www.investinme.org/
 
There may be a useful quote or 2 in this
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Inquiry into the status of status of CFS / M.E. and research into causes and treatment

November 2006
Group on Scientific Research into Myalgic into Myalgic Encephalomyelitis
(M.E.)

http://www.erythos.com/gibsonenquiry/docs/me_inquiry_report.pdf
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This report wasn't a formal Parliamentary Inquiry report but was written by a group of UK parliamentarians.

I remember seeing what looked liked the final draft which looked quite good but then for some reason it was watered down a bit.

I spent a number of days writing a submission highlighting the problems with how the Medical Research Council had been dealing with research in the area, not just in terms of funding but also in terms of the 2003 Medical Research Council strategy and the process used in drawing it up.
 
Hello @Richard Smallfield,

For the US up to 1994 (and a "10 years later" epilogue) Hillary Johnson's book "Osler's Web" is a major source.
One of the issues there was that researchers of the CDC, who found the idea that patients were really sick laughable, used the assigned funding from congress as a personal piggy bank for their own non-CFS research.

I recommend the whole book, but a Washington Post article about the CDC issue can be found here.

Johnson's book also details how funding and grant proposals (and their rejection) went for researchers from other sources like the NIH.
(I'd swear that I've seen John Gow, a Scottish researcher, also quoted in Johnsons book about how after a certain point in the string of psychiatry claims that it was psychiatric, funds just dried up for him. If you or your friend read the book and come across it, please message me as it's been driving me nuts that I can't find it again.:laugh:)

In the UK something similar happened. The Medical Research Council (MRC) up to at least 1995 tried to pretend they were funding ME research while they were not, putting up a smokescreen when MP's or patients asked about what they were funding. They talked about doing "limited" research into it - when the exact amount was none- and presented non-ME research as "basic research" into it, which it wasn't. (They had been doing this last bit since at least 1988, when there seems to have been a slight panic within the MRC because HORIZON wanted to confirm if they were indeed funding nothing, and if not why - they were afraid HORIZON "would make a meal" of the answer.)

The only thing they had been funding for years, since halfway through the 80s, was Anthony David et al.'s project at the Institute of Psychiatry that was about general fatigue in GP clinics. This wasn't about ME, nor was it biomedical. (But it was used to wave around at questions as the CFS research they were doing.)
Despite being aware of biomedical issues (they had a report from the Behan's from 1987, and Cheneys 1993 testimony before the FD scientific advisory committee among their files) there was no funding for it.

At the MRC there's also the issue of who was on the Board. Somewhere in that period new MRC Board members were installed, and instead of that being public information, it got stuffed in the "Myalgic Encephalomyelitis (ME) Postviral Fatigue Syndrome (PFS)" file and redacted, exempt from FOI, until 2071.

This is not normal; It is not regular to hide board members or who is in fund-deciding committees. You can go to the MRC page today and see who serves on the Boards and I know that e.g. in the arts&culture, at least here in The Netherlands, it is normal that Board members are known. There's no big secret about it, and it is important for the sake of transparency to see who is in the committee that decides on funding. There is no need for the MRC to hide these names as personal information exempt from FOI (unless of course they want to hide something problematic, that would go against the public interest to know who was on the Board at the time), plus the fact that it was specifically put into the ME file indicates it has something to do with it directly.

If I had more time and health this would be something I would want to go after, to start a process to make this public. (Or start a social media campaign to demand it.)

MRC file download here, which will be the same as what @Dolphin posted above.
 
NelliePledge said:
Hi @Richard Smallfield welcome to the forum. I googled you so I can see you’ve been in the ME community for years. maybe a good idea to give people a summary of what the book will cover, ideally possibly who is writing it and what is their interest in ME/CFS.
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Thanks.

The book is by a friend (from long ago, when I was growing up) who is a professor of medical anthropology in the US. The book is on the effects of stigma associated with diagnosis and is under contract to Johns Hopkins.

She got in touch because ME/CFS is a relevant illness.

I’ve not been well enough to edit what I wrote a while ago and hope I’ll be able to get it done before she needs it.
 
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