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

I'm surprised this is going down so badly here. We have to build research capacity. Yes, money can get wasted in things like this (RECOVER!) but wouldn't this be a great opportunity for S4ME to get stuck in and show the world how science-involved patients can lead the way?

Have we all gone a bit 'perfect is the enemy of the good' about this? If we'd been offered this ten years ago we'd have taken their arms off.

 

Happily, I disagree.
It will happen.

 

I am all for this, I like a lot of the aggressive language being used as well to not mix words on how poor the UK state has been on ME/CFS and numbers impacted. Researchers are behind it, three major charities are behind it and I think 5 researcher centre and a controlling hub with patient involvement sounds like it would be an enormous improvement on what is currently happening. Securing biomedical research finally gets the bulk of the money from the MRC/NIHR in the future and it goes to people we know are going to try to do the right sort of things.

Getting that money allocated is what has failed so far, forcing it into centres that do this biomedical research is vastly better than the MRC/NIHR proposal to help researchers write better proposals, that was and is just insulting.

 

The problem of continuing inappropriate reviewing at MRC and NIHR does appear to be real. Many of those signing this proposal, like, me, were on the working group where MRC and NIHR representatives could have been challenged directly about this but were not - largely I think because they were systematically steered away from doing so. Until that nettle is grasped I don't see a mechanism for getting actual projects funded. But I have reason to think things will change anyway.

 

But project funding is still going to have to go through MRC or NIHR presumably.

 

Thanks @Adrian and everyone else who’s helped with this. I’ve signed (with some reservations) and will share widely.

One minor quibble: when you sign it asks for employment status. Options include “disabled” and “unemployed”. I am disabled but that’s not my employment status. I don’t consider myself unemployed as that is usually used to mean that you are seeking employment. My status is that I am unable to work due to illness but that didn’t seem to be an option.

 

A number of concerns that I have;

The call is for an ME/CFS, Long Covid, and Post-Infectious Disease research platform. What will stop its focus being on everything other than ME/CFS, especially considering the bias against ME/CFS that the funders seemingly have?

Why was it felt necessary to include Long Covid and other Post-Infectious Diseases? According to the proposal, this could potentially even include malaria, on the basis that "Climate change, through tick- and mosquito-borne diseases, will increase numbers of people with ME/CFS-like diseases.". I have no confidence in "trickle down research", where research into one of the named conditions is assumed will prove useful for others - after all there is plenty in the Long Covid phenotype as it is currently defined that is nothing like ME/CFS.

And I note that, at quick glance, there are no representatives from LC or other "post-infectious disease" organisations listed - why is that? If the tables were turned and there was a call for a research platform that was to include ME/CFS but didn't include ME/CFS organisations or community representatives then I wouldn't be happy at the lack of representation. How do we know even that LC or other "post-infectious disease" patient communities support this proposal?

 

If we are close to that point, the question is, would that work have come sooner if something like this proposal had been enacted before?

If we are not close to that point, the question is, will this proposal help us to arrive at that point sooner?

We can’t know but I think the answer to both questions is probably yes.

 

I understand your concern but ME/CFS has been failing to get research funding forever, and getting a bigger group calling for funding could be a very good move. I'm surprised to see such scepticism on the 50% figure for the number of PwLC who fit an ME diagnosis, given that we were all warning about a mass-ME event when the pandemic started. But if that figure is anything like true, then that's a whole load of new (Long Covid) activists to push for ME funding during an ongoing Covid crisis that governments will find it ever harder to ignore as it continues to impact the workforce.

I haven't seen any reason to think that post-Covid ME isn't just plain old ME, but am I missing something?

Cort Johnson had a look at NIH funding of Covid studies in RECOVER and said:

So vigilance will be necessary but 31 studies is surely better than the zero extra ME/CFS studies that would have happened without being part of a Long Covid initiative (the quality of them being a separate issue).

 

We will see Adrian.
The history of ME/CFS research has been one of dramatic change - and largely in the ten years since we co-authored a paper saying that it was a solvable problem !!

 

I cannot see why it should. Useful science is done by individuals with motivation and insight. The overwhelming shift in science in the last twenty years has been to something quite different - a business model of generating papers. That is largely why I left to do other things. Fortunately, there are still people around with the motivation and insight, but if you build an institute without first identifying the people with insight it will immediately fill with the business model people.

I am limited in what I can say about what other people have said to me so I think I will just repeat what I said. Events will overtake this.

 

DecodeME happened because it was the one very good idea around at the time. It will have involved a lot of work but that is why it happened. I was on one of the advisory boards.

I think you are missing the reality of how much individuals matter here. We have recently had about half a dozen really bright young scientific minds join S4ME - have you not noticed? I am no longer having to hold my own against a crowd of enthusiastic and sharp patients and carers who may have knowledge in a relevant discipline but are not directly involved in the research community. Now I have to hold my own against people actually doing research. And we are seeing papers from groups that know what they are doing.

Things have changed out of all recognition.

 

This is what happened in Norway when we asked for a national competency service. Actually, it was worse because they actively work to undermine good research and to produce harmful research, not just useless research.

 

But this is just a slightly bigger group, consisting of mostly ME/CFS people calling for it.

Where have I expressed scepticism of that figure? What I'm pointing out is that there is a lot in the LC phenotype that isn't ME/CFS, and researching that could easily takeover this proposal.

 

There is always a massive amount of work involved in getting a big project like that to fly.
I presume Stephen Holgate was involved as a mediator but he had been doing that for at least ten years already. And that doesn't seem to me to have anything to do with setting up infrastructure without identifying the right people and the right projects. That was what made DecodeME a runner. It was a good project proposed by some excellent people.

 

Sure have but are any in the UK? And if they are, how can they get funding to support themselves if the reviewers at the MRC are still barking?