[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

[bobbler]

Entrenched is different its that there is no point in having a discussion as arguments are repeated and ignored.




I also worry about paralysis - we can't move forward and try things as they may go wrong which seems to be an argument that I am reading here. Sometimes we just need to try things to get change - change may not lead to a perfect result but doing nothing won't work.

In the end we can only have an influence by taking part in discussions and making the arguments to the right people - also by researchers, charities and patients putting together an argument to move things forward. If we don't try to change things and move things forward nothing will happen.

people seem to be raising the issues and catches that need to be being planned for and it’s quite disheartening that rather than reply on these questions (for which we had not assumed weren’t already being tackled and people might well have had answers they could provide about how they’d thought that conundrum through) as if it is ‘don’t want change’.

I’ve been around things like how to create or tackle pipelines in academia and it starts off with identifying the issues and being as forensic as one can be in working out how tweaks will either address or keep an eye on the main problems raised. The amount of meetings and time is normally extensive.

You might not have the answers immediately to what crops up as questions but you’d think it would be taken seriously and looked into. I’m disheartened such questions would be taken as such just because the hat today is patient rather than staff. I’m even open to the not on a public forum but are looking into making sure it does cover these issues. But not criticising the question. Because I know from experience these are valid. Because I’ve been on the other side of the coin and how it works when people are open and appropriate to input.

I’m quite therefore confused by this type of reply we seem to be getting. If the justification for doing something is a list of x then you’d expect discussion to be drawing lines between how option a,b,c is for each of those factors or whether the structure part is necessary or part of it. There are gaps currently we are just trying to have explained about why the benefits cited need this structure to be tackled and importantly the examples being brought up are so that we can learn from the experience of things that haven’t gone ideally and those which have in case there are indeed clues there at what makes a difference on the most important aspect - making sure for all this work that it is indeed going to help research in the right areas rather than the wrong

It feels like we are being replied to at cross-purposes and it feels quite strange to be saying similar points if have said as a non-ME person in said jobs on a different project but instead getting a different attitude back.

When I think it can be assumed we all want things to move forward, none however wants things to move backwards/there is always the basic sense of looking at unintended consequences of any part. People shouldn’t be getting the reply of this sort of retort ‘do you not want things to be better’ just for asking what would be a normal question from a normal member of staff - that’s the reason they took the time to ask the question. Such assertions are not a prize people only get if they agree with something as a blank cheque but I think asking detailed questions to define the conundrum shows this serious interest. Of course no one is asking because they want things to be worse than they can be and I shouldn’t be having to even say that - just as none of us are rude enough to be using terms to those suggesting initial ideas with ‘are you trying to make things worse or better’, I’d expect not to be hearing these phrases vice versa.

just because the right people mightnt want to take them on as a discussion when it exactly the right point to be raising it because it can be planned in and changes can be made doesn’t mean either the questions or indeed the issue behind them being raised ceases to exist. It’s not pwme fault they have these things repeatedly having been an issues, and it’s not unreasonable therefore for people to say what can be done to guard against this predictable problem - because in normal processes these are exactly the questions that are respected?

And of course there is often no ideal answer but people are being asked to choose and in order to compare you pick the most important factor and game it through . So knowing how the thing that’s just been tabled works for these elements is pretty key. And will remain questions as long as it isn’t answered and I’d rather know they’ve been thought about

this is all a bit surreal because I’d assume someone putting it forward would want these questions and have these responses and discussions ready because that’s the norm I’m used to but it seems there is some sort of memo I’ve missed about something on etiquette others think we should have?

 

[bobbler]

That is exactly my point. We are being far too timid and worried - "but what if BPS stuff gets funded". If we always take that approach we won't push for more research money an nothing will change (in the UK - money is being spend elsewhere). In all the discussions I've had with the MRC, NIHR, others in government no one has been pushing, interested in or even receptive to the BPS lobby.

Its not creating bureaucracy its about creating platforms that enable research and getting researchers together to create critical mass. There are reasons why certain areas attract good researchers - often because they are well funded and they have access to good facilities that simplifies the task of doing the core research.

Thank you for confirming. This is the context I feel removed from - who would be round a table making such decisions, and what is it that is causing the problem. It’s a reasonable ask to check because of eg Rosmalen and other examples elsewhere. And I’m intrigued to see how that one (and others happened) and to compare to the UK context

 

[rvallee]

We are being far too timid and worried - "but what if BPS stuff gets funded"

Plus, BPS stuff always gets funded anyway, it's super cheap and derivative, no one even expects anything more out of it. And unlike medical research, money doesn't change outcomes. They get the exact same out of $10K than they get out of $10M. They may end up doing more of it, but it would just be more of the same. There is literally no possibility of a "BPS breakthrough" that would sweep the rug from under us.

That's one side of the equation that we should never forget: more of them literally does nothing more than just the same baseline has ever done. If PACE had never gotten funded, I am absolutely convinced that it would make zero difference, we would be at the same stage regardless, it would be some other BS set of studies, or maybe even nothing. Evidence is entirely irrelevant to the ideology.

So more funding is always better as long as some goes to real medical research, because whatever worse they can get out of it, they've already got, and any funding our way is preferable to no funding, whereas more or less literally doesn't matter with them.

 

[bobbler]

We can push for more research money through projects. Is this about trying to get earmarked funding?

Norway got a BPS-led national competency service a few years after Fluge and Mella kickstarted the biomed angle and everyone were talking about how we need to take these patients seriously for once. They are still around and cause tremendous amounts of damage.

That’s why I’m cautious about asking for infrastructure that we frankly don’t have control over the staffing of.

It’s also probably a good warning that we do something to nail a proposal ourselves that eventually seems like a no-brainer when you look back (sign of something good is it seems obvious in hindsight but that’s because of the work gone into getting it right) rather than something dumped on us.

I’m unaware of the constraints the funding context and orthodoxies put on what could be designed so I also see why starting with something that can be mapped back to something that was received well in another context makes sense.

I also get the strategy idea so we can have replications and we can hopefully find out which pathways are cut-de-sacs by research confirming the null as much as where it finds something of interest. And so we know it’s not ‘this looks good but not sure about cohort’ waiting for replications that don’t happen fir some promising find to actually become something that is built from and a rolling stone. Having staff with experience because they aren’t having to make a reliable living /career in another area alongside could theoretically build in some good orthodoxies that make data more comparable across projects.

it sounds like just as pwme might find one of the hardest things of having me and the cultural context is that we’ve been made to live precarious lives and that’s a huge drain as it prevents you from planning /makes it more impossible to do as you can’t rely on things others do - and that’s mapping to the research context being/seeming hand-to-mouth. Which makes working up to bigger investigations bigger work than it might be for other areas as everything that might be a given (eg whether a lab will find room for them when they do finally get said X to that stage) involves more work to get and potentially back up plans due to less certainty due to profile and how maybe institutions respond to whether something could lead on to further future funding or equipment or other resources (like samples or recruitment lists) will have future uses vs is a one-off then apply again

I’m interested in what happened in these cases so that I can be reassured. And because I’m getting the impression that eg the bps mindset is quite implicit in many as well as those who are proper bps having got themselves some pretty well-established set-ups and have resources and contacts etc that make them better set-up ie could have competitive advantage perhaps for certain things.

having said that it seems to have been NIHR (applied angle) rather than MRC for the recent stuff but I know the big mental health centres some might be linked with were was it BBSRC ? Anyway once something exists but needs funding to maintain itself there is often an institutional support structure to keep that show on the road helping with future-planning and horizon scanning for funding.

so I’m intrigued with how certain things are built in and to just think through what certain things might look like from different positions so we aren’t taken by surprise

 

[Adrian]

It’s a reasonable ask to check because of eg Rosmalen and other examples elsewhere.

I don't know what happened there?

 

[Adrian]

people seem to be raising the issues and catches that need to be being planned for and it’s quite disheartening that rather than reply on these questions (for which we had not assumed weren’t already being tackled and people might well have had answers they could provide about how they’d thought that conundrum through) as if it is ‘don’t want change’.

When reading comments I am reading some people basically saying that they 'don't want change' or only if a system can be proved to be perfect; or even just wait and something may spontaneously happen - and I really find that quite depressing.

The thing is any proposals need to be negotiated with details worked out. But as @Kiristar said it is based on an analysis of what is happening in other disease areas and in other countries for ME. Other areas such as dementia there are research platforms being created to help boost research. For example, Alzheimer's,. dementia, chronic pain and mental health.
(1) https://ukdri.ac.uk/about-us
(2) https://www.alzheimers.org.uk/about...ion-key-dementia-challenges/dementia-research
(3) https://www.dementiasplatform.uk/about-us
(4) APDP https://www.ukri.org/what-we-do/browse-our-areas-of-investment-and-support/advanced-pain-discovery-platform-apdp/

I’ve been around things like how to create or tackle pipelines in academia and it starts off with identifying the issues and being as forensic as one can be in working out how tweaks will either address or keep an eye on the main problems raised. The amount of meetings and time is normally extensive.

I see Academia are remarkably inefficient but they are the route to getting discovery research funded so we have to work with academia. Industry wouldn't be so unstrategic in how money is spent. The idea of a hub is also to try to pull together academics, industry, charities and patients.

I would see it as the most important thing is to incentivise top quality researchers (and early career researchers) to get involved in ME research particularly from adjacent research areas - for example areas that Decode points to. Currently we simply don't have many researchers interested in ME and if someone expresses interest they are quickly put off by things like the bad reputation of research funders and the lack of skills in the area (for example, even to diagnose people) and the need to set lots up from scratch (data platforms, trial methodology etc). There is so little resource - working in ME research is not an attractive career prospect. I think I have met/spoken with most if not all the ME researchers in the UK - to contrast this I couldn't say the same for my research areas where there are many more researchers and groups - also much more dynamic.

So we need ways to build research capacity (people and platforms).

Given the current situation I think it is really important the MRC to signal that they are taking ME research seriously (given the reputation that they don't fund ME research)- They claim to have done this with their highlight notice but that has achieve no funded research (or maybe one thing has been funded since it was issued - I don't include Decode as that was a different route) so it hasn't lead to any change. So repeating this seems flawed - and given the highlight/priority notice only helps when reviews are good it really doesn't signal a serious attempt to fund ME research. The MRC did have some ring fenced funding a good few years ago with 6 proposals funded (I believe due to political pressure) and that didn't lead to a sustained research pipeline - I have a feeling one of those projects didn't even publish results.
So something else needs to be tried.

In other areas things like research centres have been created to help facilitate research. In my field issues were raised about the lack of research (although large compared to ME research) and the government set up 3 or 4 research centres. The don't have massive funding but enough to have an organizing groups, fellows with some seed/travel money, and projects that are attached from research calls (i.e. they involve researchers in multiple institutions as they can bid for money associated to one of the centres). This helps create community and links between researchers, industry, government, funders etc. The centre I know about the 'funders' are heavily involved as they care about the results and also do things like write problem books to direct the strategically important research areas.

So given this and approaches of creating research platforms in other areas then I would argue a hub proposal is a good way to try to get a sustainable research pipeline covering multiple different important strands for ME research. At the least we need the MRC as the funder for discovery research to think strategically about how to achieve this and talk with researchers, patient groups to achieve something, and the hub proposals put forward are a stake in the ground in that direction.

When I think it can be assumed we all want things to move forward, none however wants things to move backwards/there is always the basic sense of looking at unintended consequences of any part.

I don't think we can move much further back than the current situation.

@bobbler what alternative suggestions do you have to get ME research going and create a sustainable pipeline?

 

[Jonathan Edwards]

When reading comments I am reading some people basically saying that they 'don't want change' or only if a system can be proved to be perfect; or even just wait and something may spontaneously happen - and I really find that quite depressing.

Who is saying any of these things, Adrian?

If anything you seem to be taking a wet blanket approach by moaning how few good researchers we have. We have some brilliant researchers and I am pretty sure they will deliver. You only need one group with talent and commitment to break through a problem. In the UK the productive research into RA and lupus in the last twenty years has been zilch to be honest. The progress in ME/CFS is in contrast pretty impressive. Infrastructures don't solve problems on their own. As you point out people do. Useful data will come because of individuals, yes, and those individuals exist.

And my view that things are changing, and not just DecodeME but a whole lot of other thing, is not just my view. It was enunciated recently by someone right in the middle of this.

The issue for me is that you have to work within a peer review framework with funders who assess and applicants who propose. There is no Deus ex Machina to break through that. The also-rans will always shout loudest - as we see in LC research in the USA. We need to see good projects and we need the appointed assessors to know what they are doing. Nobody seems to be tackling the latter.

 

[Utsikt]

When reading comments I am reading some people basically saying that they 'don't want change' or only if a system can be proved to be perfect; or even just wait and something may spontaneously happen - and I really find that quite depressing.

That’s not how I’m reading the comments. And it might suggest some defensiveness on your part if criticism is seemingly dismissed as perfectionism or entrenchment.

Other areas such as dementia there are research platforms being created to help boost research. For example, Alzheimer's,. dementia, chronic pain and mental health.

I don’t think chronic pain or mental health are examples of where good research is being done. After all - we want good research, not just research. We’ve had enough mediocre research as it is - and I don’t think that was an issue of funding!

I would see it as the most important thing is to incentivise top quality researchers (and early career researchers) to get involved in ME research particularly from adjacent research areas - for example areas that Decode points to. Currently we simply don't have many researchers interested in ME and if someone expresses interest they are quickly put off by things like the bad reputation of research funders and the lack of skills in the area (for example, even to diagnose people) and the need to set lots up from scratch (data platforms, trial methodology etc). There is so little resource - working in ME research is not an attractive career prospect.

Have you or others actually spoken to researchers from other areas about this?

Because it seems to me like we’ve had a influx of good researchers lately - despite the lack of the infrastructure described in the proposal.

And I think it’s important to address another issue - can the proposed setup attract researchers you don’t want as well? Either BPS researchers or just simply mediocre career researchers, instead researchers that might make meaningful contributions?

If it can - what’s being done to ensure we attract and prioritise the right kind of people?

The centre I know about the 'funders' are heavily involved as they care about the results and also do things like write problem books to direct the strategically important research areas.

I don’t think this would be the case for the funders of ME/CFS research. How does that affect the dynamics?

 

[Adrian]

Thank you Adrian for providing more information than most of us have about what is happening. I am pleased to hear you take a positive view of the aims of asking for a research platform. Do you have any idea of the likelihood of success? And if there is any chance of success, is there a more detailed description of how a research platform would work?

I think it's understandably hard for those of us on the outside to be confident anything good can come from this, as we've been so badly treated in the past. I don't lack confidence in the good efforts and intentions of you and others from the patient and carer side working on this, but I have little to no confidence there will be any push coming from the government or from inside the MRC.

DecodeME was the first really positive step the MRC has taken, and that took a lot of lobbying, I understand. Can something equally positive come in the near future?

To be clear I don't think it will happen - the situation as I see it at the moment is that the MRC aren't interested in doing anything - I think the situation with the DHSC (and hence NIHR) is different but they fund translational research not discovery research (which is needed).

If it were to happen, I'm not sure how you would characterize if something works but I do think it would improve the situation (which is pretty bad at the moment) and I would see something around a national research hub(s) being the best option to improve things. From my experience having the right structures and incentives in place can help encourage research into important areas.

Decode was a good step and it could lead to more research as results are published - it was somewhat of an obvious step in terms of being hypothesis generating in an area that needs that and clearly resonated with the MRC strategy board for this reason. But I feel something needs to be done to ensure that the hypotheses generated get explored (and by people who know the science behind the areas they are in) and as I would see it the MRC simply hope there may be some spontaneous research growth due to these results and I see no push/desire from them to improve the situation.

 

[butter.]

When reading comments I am reading some people basically saying that they 'don't want change' or only if a system can be proved to be perfect; or even just wait and something may spontaneously happen - and I really find that quite depressing.

The thing is any proposals need to be negotiated with details worked out. But as @Kiristar said it is based on an analysis of what is happening in other disease areas and in other countries for ME. Other areas such as dementia there are research platforms being created to help boost research. For example, Alzheimer's,. dementia, chronic pain and mental health.
(1) https://ukdri.ac.uk/about-us
(2) https://www.alzheimers.org.uk/about...ion-key-dementia-challenges/dementia-research
(3) https://www.dementiasplatform.uk/about-us
(4) APDP https://www.ukri.org/what-we-do/browse-our-areas-of-investment-and-support/advanced-pain-discovery-platform-apdp/



I see Academia are remarkably inefficient but they are the route to getting discovery research funded so we have to work with academia. Industry wouldn't be so unstrategic in how money is spent. The idea of a hub is also to try to pull together academics, industry, charities and patients.

I would see it as the most important thing is to incentivise top quality researchers (and early career researchers) to get involved in ME research particularly from adjacent research areas - for example areas that Decode points to. Currently we simply don't have many researchers interested in ME and if someone expresses interest they are quickly put off by things like the bad reputation of research funders and the lack of skills in the area (for example, even to diagnose people) and the need to set lots up from scratch (data platforms, trial methodology etc). There is so little resource - working in ME research is not an attractive career prospect. I think I have met/spoken with most if not all the ME researchers in the UK - to contrast this I couldn't say the same for my research areas where there are many more researchers and groups - also much more dynamic.

So we need ways to build research capacity (people and platforms).

Given the current situation I think it is really important the MRC to signal that they are taking ME research seriously (given the reputation that they don't fund ME research)- They claim to have done this with their highlight notice but that has achieve no funded research (or maybe one thing has been funded since it was issued - I don't include Decode as that was a different route) so it hasn't lead to any change. So repeating this seems flawed - and given the highlight/priority notice only helps when reviews are good it really doesn't signal a serious attempt to fund ME research. The MRC did have some ring fenced funding a good few years ago with 6 proposals funded (I believe due to political pressure) and that didn't lead to a sustained research pipeline - I have a feeling one of those projects didn't even publish results.
So something else needs to be tried.

In other areas things like research centres have been created to help facilitate research. In my field issues were raised about the lack of research (although large compared to ME research) and the government set up 3 or 4 research centres. The don't have massive funding but enough to have an organizing groups, fellows with some seed/travel money, and projects that are attached from research calls (i.e. they involve researchers in multiple institutions as they can bid for money associated to one of the centres). This helps create community and links between researchers, industry, government, funders etc. The centre I know about the 'funders' are heavily involved as they care about the results and also do things like write problem books to direct the strategically important research areas.

So given this and approaches of creating research platforms in other areas then I would argue a hub proposal is a good way to try to get a sustainable research pipeline covering multiple different important strands for ME research. At the least we need the MRC as the funder for discovery research to think strategically about how to achieve this and talk with researchers, patient groups to achieve something, and the hub proposals put forward are a stake in the ground in that direction.



I don't think we can move much further back than the current situation.

@bobbler what alternative suggestions do you have to get ME research going and create a sustainable pipeline?

I don't know who you are and what you are working on exactly, but I think if you do something rather than nothing that's a good thing for all of us. Also, having read only a few of your posts, I agree with a lot of what you say, and I am sure many others do as well. Absorb and learn from what is being said here if you think its useful and if it's not just move on. Don't let others disparage you and don't waste your precious energy trying to convince people. Thank you for your work.

 

[Adrian]

That’s not how I’m reading the comments. And it might suggest some defensiveness on your part if criticism is seemingly dismissed as perfectionism or entrenchment.

No its about style of comments more generally. I see comments basically saying either we don't need to do anything or why create structure to achieve change or wouldn't that just get the wrong research. What would be more interesting to discuss and a more constructive discussion how we can create change and get some a sustainable research pipeline going - the hub proposal came about through lots of discussion and it is intended as a way to get things moving. But there may well be other good ways to achieve more research that can be added/combined into the discussion I would see that as a positive thing.

Because it seems to me like we’ve had a influx of good researchers lately - despite the lack of the infrastructure described in the proposal.

Have we - in the UK? We have had researchers coming in through long covid but as the letter that was published points out the situation with regards to reviewing is not great. Internationally, we have some researchers coming in where funding is happening such as Germany and the Netherlands.

I would pose the question how much research is there in ME compared to a disease with similar number of people suffering and impact on their lives.

I don’t think this would be the case for the funders of ME/CFS research. How does that affect the dynamics?

The dynamics in this case are very different as the funders are effectively customers for research. In the case for ME we need different structures to pull in industry who eventually are the ones who roll out new treatments. But we also need the funders to understand the need for research.

 

[Sasha]

So the target for any campaign or proposal should be to educate the MRC and NIHR about what sort of research they should be approving for ME/CFS, and who they should be getting to vet proposals.

Stephen Holgate has been trying to do that for twenty years. Minds will change when there are data. Which is why for me the strength of the Zhang genetic data is crucial to establish. If there is reliable evidence for certain immune or neural genes playing a causal role then we should have turned the corner. But that seems unclear.

I think it is really important the MRC to signal that they are taking ME research seriously (given the reputation that they don't fund ME research)- They claim to have done this with their highlight notice but that has achieve no funded research

We need to see good projects and we need the appointed assessors to know what they are doing. Nobody seems to be tackling the latter.

Whether our model for progress is a research hub or a bunch of maverick geniuses, is it right to say that the problem is the rubbish assessors at the MRC? A situation that Stephen Holgate has been trying to fix for twenty years but hasn't?

To be clear I don't think it will happen - the situation as I see it at the moment is that the MRC aren't interested in doing anything

Then shouldn't all our efforts be focused on the problem of the dodgy MRC assessors? How can we tackle it?

[Edit]Are we pushing Zhang et al. for answers?

 

[Adrian]

Who is saying any of these things, Adrian?

If anything you seem to be taking a wet blanket approach by moaning how few good researchers we have. We have some brilliant researchers and I am pretty sure they will deliver. You only need one group with talent and commitment to break through a problem. In the UK the productive research into RA and lupus in the last twenty years has been zilch to be honest. The progress in ME/CFS is in contrast pretty impressive. Infrastructures don't solve problems on their own. As you point out people do. Useful data will come because of individuals, yes, and those individuals exist.

And my view that things are changing, and not just DecodeME but a whole lot of other thing, is not just my view. It was enunciated recently by someone right in the middle of this.

The issue for me is that you have to work within a peer review framework with funders who assess and applicants who propose. There is no Deus ex Machina to break through that. The also-rans will always shout loudest - as we see in LC research in the USA. We need to see good projects and we need the appointed assessors to know what they are doing. Nobody seems to be tackling the latter.

I would liken it to investing in start ups. Identifying the winner is very hard (too many factors) so investors will spread their investments over multiple companies with the hope one will win. It may be that progress will be made by one group but identifying that group is really hard so I'm arguing we need to get more research groups involved to up the chances that progress is made.

Most research is also taking small steps on what others have done. Hence Newton's comments of standing on the shoulders of giants. So it may take one idea to transform but this is normally build on knowledge and then requires more research to translate into something useful - and in some cases to even to recognize that an idea is good and works.

 

[Adrian]

Whether our model for progress is a research hub or a bunch of maverick geniuses, is it right to say that the problem is the rubbish assessors at the MRC? A situation that Stephen Holgate has been trying to fix for twenty years but hasn't?

The MRC point out that they have very few proposals for ME and hence they aren't rejecting many. I would say we have reached a situation where researchers are very reluctant to put the effort into writing proposals as there is an expectation they will be turned down. Its much easier to work in other areas.

 

[Utsikt]

What would be more interesting to discuss and a more constructive discussion how we can create change and get some a sustainable research pipeline going

First: «create change» says nothing. We need specifics - especially about which root problems we’re trying to solve and why we believe those are the root problems in the first place.

Second: why is a «research pipeline» desirable? What does «research pipeline» even mean?

I say this as a former management consultant that has seen a lot of these reports in various industries, and all I read is the normal buzzwords and «change is good». It reads to me like an eagerness to «do something», more than an eagerness to get to the bottom of why we’re in an undesirable place to begin with.

Edit: I saw the comment about researchers thinking they will get their grant applications rejected. I’ll make a separate comment on that.

 

[Utsikt]

The MRC point out that they have very few proposals for ME and hence they aren't rejecting many. I would say we have reached a situation where researchers are very reluctant to put the effort into writing proposals as there is an expectation they will be turned down.

If the issue is that people are not writing applications because the MRC rejects most of them - do we know why they get rejected?

Are the projects bad, or doesn’t MRC want to fund ME/CFS research at all?

If it’s the former, it’s not a loss.

If it’s the latter - how will this proposal change that?

 

[Sasha]

The MRC point out that they have very few proposals for ME and hence they aren't rejecting many. I would say we have reached a situation where researchers are very reluctant to put the effort into writing proposals as there is an expectation they will be turned down. Its much easier to work in other areas.

From what I've read on the forum (possibly this thread), high-quality biomed researchers are having their proposals turned down by BPS proponents who think there's no need for biomed research. I don't blame those researchers for not bothering to submit proposals in such a situation.

Don't we need to fix the MRC's choice of assessors?

 

[Adrian]

If the issue is that people are not writing applications because the MRC rejects most of them - do we know why they get rejected?

Are the projects bad, or doesn’t MRC want to fund ME/CFS research at all?

If it’s the former, it’s not a loss.

If it’s the latter - how will this proposal change that?

I see it as a downward spiral - researchers wrote a letter around this which was shared with the hub proposal Microsoft Word - Letter from ME Researchers to Funders which I think outlines the issue with reviewers: For example

A recent application to the highlight notice, having taken into account advice from academic experts, UKRI funders and PPI groups about the imperative to align and synergise molecular pathogenesis approaches across both ME/CFS and Long Covid, and from an internationally recognised team with multiple relevant, recent publications in Science, Nature and Lancet, was declined with one referee allocating a score of ‘1/6; poor’. Another research team with a similar output profile has shelved all plans to work on ME/CFS after four attempts to obtain funding since 2020. Each application was revised in line with the feedback but then compromised by highly inappropriate reviews, two of which indicated that the reviewer had not read the grant (e.g., by criticizing experiments that were not proposed anywhere in the application), and one of which indicated that the reviewer had little or no relevant knowledge (e.g., by stating that there is a universal treatment for ME/CFS). Other reviews used earlier published research with conclusions based on highly questionable data to criticize the validity of the approach, which had already pinpointed a molecular signature of ME/CFS. This work remains unpublished without funds needed to push it through to completion.

And also saying given that they would not recommend researchers going into ME research

Because of its historically low funding, we cannot, in good conscience, today recommend to early career researchers (ECRs) that they pursue a career in ME/CFS research.

From what I've read on the forum (possibly this thread), high-quality biomed researchers are having their proposals turned down by BPS proponents who think there's no need for biomed research. I don't blame those researchers for not bothering to submit proposals in such a situation.

Don't we need to fix the MRC's choice of assessors?

Yes but where an area has a bad reputation fixing something may not be sufficient to change the reputation.

 

[Utsikt]

I see it as a downward spiral - researchers wrote a letter around this which was shared with the hub proposal Microsoft Word - Letter from ME Researchers to Funders which I think outlines the issue with reviewers: For example

The examples in that letter makes it seem like the issue is the reviews by MRC? How does the current proposal address that?

I also don’t understand this sentence in the beginning of the letter:

We are writing to urge the UKRI funders and charities to intervene decisively by interrupting the cycle wherein a low funding rate yields a low evidence base that hinders the competitiveness of project proposals.

What is a «low evidence base» and why does it reduce the competitiveness of proposals?

 

[Trish]

@Adrian, I have read the introductory part of the NIHR website.
I understand from it that they fund 'health and social care' research that takes scientific discoveries already made and funded by other funders such as the MRC and researches application of scientific discoveries to health and social care.
https://www.nihr.ac.uk/about-us/what-we-do

In other words, it seems the NIHR would not fund things like genomics, and other omics biomedical research that I understand is still needed before there is anything to apply to health and social care. What we seem to need more at this stage is MRC funding for biomedical research including when there's a good indication, drug trials.

Even from within our 2 main charities there are still mis-steps on health care (supporting approaches taken by Tyson, Gladwell and BACME). While there is continuing influence from BACME as well to try to maintain the rehabilitiation model, tweaked to pretend to be NICE compliant, what is to say the NIHR won't allocate the funding for research hub to a BACME style therapy centre to fund ongoing research on the rehab model of care?

You say you are not familiar with the Rosmalen situation. I'm no expert, and others can doubtless explain it better, but my understanding is that the Netherlands government allocated funding for two research hubs on ME/CFS. One of the hubs funded has as lead researcher, Rosmalen, who is a BPS supporter who doesn't seem to distingulsh ME/CFS from chronic fatigue and does dreadful research which is a real backward step.

Combining that mis-step in another country, and the fact that so far the NIHR has funded awful research including millions to Crawley and others, and the ongoing dominance of BPS in UK medical establishment, and I see real danger here if we ask them to fund research hubs. I am sure you would want to insist that the research they fund is not BPS, but that will be up to the NIHR, not to pwME.