MRC-funded grant proposals on ME/CFS by year, 2003–2023, along with the total number of proposals received that year.

[InitialConditions]

There have been numerous discussions recently regarding research funding, with particular emphasis on the MRC. We know almost nothing in this space is being funded, but the exact reasons why are unknown.

One major unknown is the number ME/CFS research proposals submitted to MRC each year (and therefore how many are being rejected, and at what rate). This data is generally not available publically. So I used a FOI request and data provided by MRC to look at the stats on funded and rejected/unsuccessful grant proposals on ME/CFS for the period 2003–2023.

I am sharing a plot here to show just how few proposals are being submitted to MRC. Note that these data overestimate the number of ME/CFS proposals owing to inclusion of 'false hits' — these are generally projects that include the term ‘chronic fatigue syndrome’ in their title, abstract and/or summary but whose primary focus is either fatigue associated with an overlapping condition, or idiopathic (chronic) fatigue. Manual screening for false hits has yet to be carried out because the information needed to sceen for false hits in the reported rejected grant stats is not available.



Here is a Figshare DOI if anyone wants to reference this work, although I repeat that this is unfinished analysis owing to reasons stated above:
https://doi.org/10.6084/m9.figshare.27187110.v3

 

[Dolphin]

The funding in 2011 was following a rare ring-fenced funding call.

 

[Dolphin]

As I have argued before, though some don’t seem to like me making this point, private research funding is important not just because it pays for research directly but because it draws (i) new researchers to the field and (ii) helps keep others interested, who can then make research grant applications.

A grant application will have a greater chance of success if it has pilot data to suggest a hypothesis is fairly plausible and private funding is very useful to help enable researchers collect pilot data.

 

[InitialConditions]

As I have argued before, though some don’t seem to like me making this point, private research funding is important not just because it pays for research directly but because it draws (i) new researchers to the field and (ii) helps keep others interested, who can then make research grant applications.

A grant application will have a greater chance of success if it has pilot data to suggest a hypothesis is fairly plausible and private funding is very useful to help enable researchers collect pilot data.

I agree, but we are at the point where we need a substantial — i.e., order-of-magnitude — increase in research funding £s/year, and soon. IMO this can only come from policy change at the large funders (MRC and NIHR) to attract new researchers and to establish and commit to ME/CFS research centres.

 

[Nightsong]

That is really quite astonishing.

For comparison's sake, is there any indication - even if grant rates are not published - of how many proposals they tend to receive for conditions of similar prevalence, e.g. MS, in the data that is publicly available?

 

[Kiristar]

Great work @Initial Conditions
I agree it would be valuable to map this against one or a group of useful comparators.

Then it would be great to cross map with disease burden on the other axis as Jason Leonard did for the US. ( a bit easier as funding by disease is in the public domain to start with)

ME Funding has increased somewhat in the USA and I think that advocates having that visual analysis to hand showing areas of over and under funding with ME off the bottom of the charts really helped the argument.

At the end of the day it really comes down to political appetite which will be driven by seeing both the long-standing under investment and the national economic cost.

 

[InitialConditions]

That is really quite astonishing.

For comparison's sake, is there any indication - even if grant rates are not published - of how many proposals they tend to receive for conditions of similar prevalence, e.g. MS, in the data that is publicly available?

Not that I'm aware of because usually only data on funded grants are publically available. One could compare funded projects and overall funding levels for any disease/illness of their choice using database searches, but, again, these records contain data about awards made. Data for MRC awards are available from the UKRI Gateway database: https://gtr.ukri.org/ .

 

[InitialConditions]

Great work @Initial Conditions
I agree it would be valuable to map this against one or a group of useful comparators.

Then it would be great to cross map with disease burden on the other axis as Jason Leonard did for the US. ( a bit easier as funding by disease is in the public domain to start with)

ME Funding has increased somewhat in the USA and I think that advocates having that visual analysis to hand showing areas of over and under funding with ME off the bottom of the charts really helped the argument.

At the end of the day it really comes down to political appetite which will be driven by seeing both the long-standing under investment and the national economic cost.

I don't think these figures are widely made available, apart from when funders are asked to provide a figure. It takes someone crawling through research awards totting up the total amount to arrive at a figure. Interestingly, this piece of work has revealed that the figures quoted by the MRC for ME/CFS are likely overestimates because they include projects that shouldn't really be classified as ME/CFS.

 

[wigglethemouse]

@InitialConditions Karl Morten has talked about some of the funding challenges in the UK in his video's and on social media. Might be worth sending him an email and asking for some background on the challenges to getting grants.

It's been discussed/implied here on S4ME that there will be no major UK projects funded until Decode ME reports.

ME Funding has increased somewhat in the USA

In the US the NIH does not want to significantly increase funding without a solid lead / pathway to follow. It is my understanding that funding by NIH has actually decreased. The NIH intramural study was supposed to provide a direction to go in and they did not. The roadmap report was issued and approved but no NIH institute want to provide funds for it.

 

[wigglethemouse]

There is another FOI response I saw on X today.

Here the link to the reply with all documents. I just got this so didn't look through it yet. Might take me a while. Happy for your help. #pwme #MEcfs #MyalgicEncephalomyelitis End/

The author is asking for feedback for their reply.

Last call #pwME MRC responded to FOI, there are 100s of reviewers so they can't list them all. If we want details, we need to ask about precise study application. I don't have time left. I need to ask latest tomorrow to give them response time before end of the month. Please 1/

 

[Kitty]

As I have argued before, though some don’t seem to like me making this point, private research funding is important not just because it pays for research directly but because it draws (i) new researchers to the field and (ii) helps keep others interested, who can then make research grant applications.

A grant application will have a greater chance of success if it has pilot data to suggest a hypothesis is fairly plausible and private funding is very useful to help enable researchers collect pilot data.

Yeah, I agree. Some schemes are just unsuitable for some projects, and in those cases a lack of proposals doesn't mean a great deal more than that.

There's also the likelihood that smaller teams have to take into account the costs of application, especially the staff resources. It's possible some projects are planned from the off to fit the criteria of funding schemes with less onerous application processes. I've never done research funding, but in other contexts that way of working is normal—what's currently available, what aspects of this work could we explore with it, how could we and the funder get the most out of it?

 

[InitialConditions]

@InitialConditions Karl Morten has talked about some of the funding challenges in the UK in his video's. Might be worth sending him an email and asking for some background on the challenges to getting grants.

What I want to illustrate is that MRC is not getting the proposals. I think some patients are convinced there is a conspiracy at MRC to reject any ME/CFS grant applications. The MRC grant success rate is approximately 20%. So statistically we need five proposals to get one funded. The number of ME/CFS proposals being submitted is vanishingly low. It's perhaps better to ask: why has there only been an average of 2 grant applications to MRC each year over the past decade?

EDIT: Ok, so the success rate based off the above chart is about 12% (11/92, if I've counted correctly), so that's lower than the MRC average. Perhaps this is significantly lower than the MRC average.

 

[Dolphin]

Yeah, I agree. Some schemes are just unsuitable for some projects, and in those cases a lack of proposals doesn't mean a great deal more than that.

There's also the likelihood that smaller teams have to take into account the costs of application, especially the staff resources. It's possible some projects are planned from the off to fit the criteria of funding schemes with less onerous application processes. I've never done research funding, but in other contexts that way of working is normal—what's currently available, what aspects of this work could we explore with it, how could we and the funder get the most out of it?

I remember a researcher a decade or two ago saying if I recall correctly an application form for the MRC was 48 pages long and took a lot of work to fill. If I was a researcher I’d be more likely to do it with pilot data which showed the lead had promise and also increased the chances of being funded.

 

[Kitty]

I've never done research funding, but in other contexts that way of working is normal—what's currently available, what aspects of this work could we explore with it, how could we and the funder get the most out of it?

Also, funding's often viewed as a patchwork. Some aspects of a team's work may be funded by earned income or capital schemes that of themselves don't say much about the main research priorities, so they don't get included in analyses of dedicated funding. Without having those base costs covered, though, the research couldn't happen.

 

[wigglethemouse]

What I want to illustrate is that MRC is not getting the proposals.

That's why I thought it would be great to talk to a few researchers. I picked a random Karl Morten Video and here at 1:09 in a 2021 video he is talking about some of the infrastructure issues that lead to problems getting access to funding. Sorry, I couldn't find the transcript. In another video I remember him talking about specifics of what infrastructure he needs to collect fresh blood needed for many experiments.
He has his annual meeting coming up again and maybe you could email some questions beforehand to see if he can discuss in his talk.

 

[Jonathan Edwards]

What I want to illustrate is that MRC is not getting the proposals.

I agree.

EDIT: Ok, so the success rate based off the above chart is about 12% (11/92, if I've counted correctly), so that's lower than the MRC average. Perhaps this is significantly lower than the MRC average.

And to be honest this is a very good rate of funding in an area where there are no solid leads. Any other areas that get more like 20% funded will have well established avenues and tenured MRC fellows extending ongoing work.

Putting it bluntly the figures do not such any bias - if anything being reasonably generous.

I get involved in these processes and have seen these data before. I am unclear whether or not there is any systematic bias against ME/CFS projects. I have heard, nonetheless, of referee reports that do not sound reasonable. You get that in all areas but one or two of these did sound as if a chairman should have quietly slipped them in the bin.

We should have had some sort of answer to this at the Government Working Party on Research but the MRC and NIHR sent along some juniors who were polished at saying nothing with lots of long words.

Anyway, the real problem is obviously no researchers putting in grants -probably partly because there are no leads and early because there is no clinical infrastructure to provide well-defined patient cohorts and starting observations.

 

[Sasha]

Anyway, the real problem is obviously no researchers putting in grants -probably partly because there are no leads and early because there is no clinical infrastructure to provide well-defined patient cohorts and starting observations.

Can we do anything here on S4ME about providing starting observations - for example, as with your digging on the experience of lying flat, and the recent thread that @EzzieD started on how PwME don't get colds until they start getting better? Are those the sort of observations that you mean? If so, could we be more systematic about it? Perhaps we are one big clinic here (or at least one big clinic's waiting room).

 

[Eleanor]

Anyway, the real problem is obviously no researchers putting in grants -probably partly because there are no leads and early because there is no clinical infrastructure to provide well-defined patient cohorts and starting observations.

And on the other hand there are people like Danny Altmann who has said on many occasions that they have studies ready to go but can't get any interest from funders - e.g. https://twitter.com/user/status/1812073146968601029

 

[Kiristar]

@InitialConditions Karl Morten has talked about some of the funding challenges in the UK in his video's and on social media. Might be worth sending him an email and asking for some background on the challenges to getting grants.

It's been discussed/implied here on S4ME that there will be no major UK projects funded until Decode ME reports.


In the US the NIH does not want to significantly increase funding without a solid lead / pathway to follow. It is my understanding that funding by NIH has actually decreased. The NIH intramural study was supposed to provide a direction to go in and they did not. The roadmap report was issued and approved but no NIH institute want to provide funds for it.

I know there are challenges atm but I guess it depends on the time period you look at. It's down from a pre pandemic peak when the centres of Excellence were set up but still above the early 2010s

 

[Kiristar]

I don't think these figures are widely made available, apart from when funders are asked to provide a figure. It takes someone crawling through research awards totting up the total amount to arrive at a figure. Interestingly, this piece of work has revealed that the figures quoted by the MRC for ME/CFS are likely overestimates because they include projects that shouldn't really be classified as ME/CFS.

Yes it's a great shame there is not more transparency as there is in other countries. It would a be powerful exercise.

I do know of at least one thing they boasted of funding that did cover ME but where the main title wouldn't make you think so. (from memory I think it used the inappropriate neurological "FND" term and included a CFS cohort as a subcategory ).