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

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?

 

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

 

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.

 

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

 

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.

 

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.

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!

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?

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

 

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.

 

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?

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?

 

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.

 

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?

 

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?

 

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:

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