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

Ravn said:
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
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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 a publisher.

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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Richard Smallfield said:
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
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Thanks, everyone, for your many thoughtful replies. I’m struggling to read (esp from a white screen), but have got through most of your responses and will return tomorrow, as I now can’t recall much of what I’ve read. I tried to reply to one comment and then couldn’t find my reply, so may have stuffed it up.

I’ll reread this thread tomorrow, if possible.
 
Richard Smallfield said:
Thanks, everyone, for your many thoughtful replies. I’m struggling to read (esp from a white screen), but have got through most of your responses and will return tomorrow, as I now can’t recall much of what I’ve read. I tried to reply to one comment and then couldn’t find my reply, so may have stuffed it up.

I’ll reread this thread tomorrow, if possible.
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Maybe as this thread is in the public area of the forum you could just send a link to your friend.
 
Ravn said:
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
Click to expand...
Can anyone please help me amend the title? Due to brainfog, my initial post was rather clumsily expressed. Words are normally one of my strengths - not at present, unfortunately.
 
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.
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There was an imbalance for a period when the MRC wasn't funding any biomedical research, though it was still paying for research.

But it would be not correct to say that other illness communities don't have to raise money privately for research, that taxpayer funding pays for all or even most of it (in the same way that a national health system like the NHS pays for all medical healthcare).

See for example

UK medical research charities spend a broadly similar amount to the taxpayer-funded National Institute for Health Research & Medical Research Council
https://forums.phoenixrising.me/blo...ealth-research-medical-research-council.2591/

And in terms of ME/CFS I'm not sure whether the public versus private funding ratio is hugely different given the cost of DecodeME.

I'm not sure whether there has been an imbalance in the US in terms of private versus public funding there. I'm not sure what the overall ratio is i.e. across all conditions. Privately raising money for research seems to be big over there also with some very large charities/nonprofits/foundations for some conditions. And the NIH has given large sums over there over the years for ME/CFS research, probably 9 figures, nearly all of which was biomedical. And the CDC has also funded research to a level of 8 figures. In total I would imagine NIH and CDC funding would have been a lot larger than private funding for ME/CFS research over the years.

There are things that can be highlighted in this area certainly.
 
Dolphin said:
The two tables I posted above of successful and unsuccessful grant applications were created by the MRC itself and released following FOI requests.
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In case I wasn't clear, I was referring to:

Dolphin said:
(from http://meactionuk.org.uk/The-MRC-secret-files-on-ME.htm )
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(That link does not work for me today btw., did it still work for you on Friday?)

Richard Smallfield said:
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.
Click to expand...

And you're absolutely sure she's taking ME/CFS serious as a biomedical illness? She might be great, but for me this triggers all kinds of alarm bells. Notions about stigma from medical anthopology, based on "observations" of non-Western culture, were in fact heavily used to pull ME into psychiatry, by pretending (out of relevant context as well) it was a cultural construction of illness that was used to avoid admitting to depression due to cultural taboos. It was also used to take away ME patients' voices and disarm objections to getting psychiatrised: ME patients saying that they were experiencing physical illness was framed as a sign that they refused to admit they had a depression.

I'm going to assume that your friend's intention is not to parrot the same old nonsense, so I wish her the best of luck and lots of enjoyment writing. (But if this above is somewhere part of her writing, then she should know she is repeating distorted old nonsense that served the goals of the people propagating it, not patients.)
 
Dolphin said:
(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/
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Jonathon Kerr no longer with us https://www.s4me.info/threads/dr-jonathan-kerr.7982/page-3#post-470931

Re: Kerr's comment on the MRC - timing of his applications was unfortunate - as I've commented in another thread:

"The history of MRC support for PACE & FINE was very particular, it coincide with neurobiologist Colin Blakemore becoming MRC CEO, with a commitment that psychology should get a bigger slice of MRC grant cake. Blakemore left the MRC in 2007 with the FINE and PACE funding already in the pipeline. Substantial changes have happened at the MRC in the intervening years, most notably in 2018 with the creation of UKRI [3].

Since the fading of the Blakemore regime there has been little evidence (some follow on PACE funding ?) that MRC is BPS fan club. Following publication of the 2021 Guideline contact could usefully be made with MRC simply outlining that past investment in BPS approaches to ME/CFS have not proved hugely useful and that from the patient perspective research concentrating on purely biological investigations would be most welcome. There's probably no mileage in holding the current MRC leadership to account for the failures of a past CEO."

As a more general point, when adopting an historical perspective on ME/CFS research, caution is needed not to romanticise the 'never happened'. We don't know the quality of the grant applications, nor the level of competition that applied at any given time - for example it's notable that there's no ready list of testable hypotheses that can be pointed to as long neglected, only grants that were applied for and not approved.

That said the tenure of Blakemore at MRC, from 2003 to 2007 saw (as per lists in posts above) grants (n =4) awarded to Weardon, White, Sharp and Morris for which hypotheses were demonstrably weak (at best) and which together represented the largest ever block of MRC funding to ME/CFS, while in the same period 32 other grant applications were refused, 29 of which were biomedical with only 3 psychology based grant applications refused. In the UK context this is probably the strongest evidence of an institutional block on non psychology focused ME/CFS research.

This doesn't of course explain why ME/CFS was so little researched in other countries with comparable science research budgets and we need to be careful not to extrapolate what was perhaps a UK specific cultural issue to any wider context.
 
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