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

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.

 

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.

 

In case it helps, the forum has a number of 'themes', see this thread for further details, Did you know that the forum has several different 'themes'? Aka dark and light modes and how to change them.

 

Thanks so much - yes, it helps a lot!

 

Thanks. I had the same thought.

 

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.

 

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.

 

In case I wasn't clear, I was referring to:

(That link does not work for me today btw., did it still work for you on Friday?)

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.)

 

No, it was something I copied from elsewhere.

 

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.