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

[Jonathan Edwards]

Sure have but are any in the UK?

At least one is but Adrian was talking about the lack of progress worldwide.

 

[Sasha]

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.

Was it the only one ever, though? The MRC have funded utter rubbish (PACE) while funding hardly any biomedical stuff, for decades. Were there really no other runners?

 

[hotblack]

Don’t we need both? Good people with good ideas and good people working hard to get the funding and wider support? Neither alone solves anything, surely it is great news we are finally seeing both come together?

 

[Jonathan Edwards]

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?

I share this concern partly because it already mentally shoehorns ME/CFS into a 'post-infective illness' pigeonhole. That will immediately bring in the post-infective illness fast-followers that are so evident on X. ME/CFS does have an important link to infection but the last thing we want is researchers who think in these mental pigeonholes.

 

[Jonathan Edwards]

Was it the only one ever, though? The MRC have funded utter rubbish (PACE) while funding hardly any biomedical stuff, for decades. Were there really no other runners?

In the ten years I have been watching ME/CFS research DecodeME stood out as an order of magnitude more worthwhile than anything else. Maybe two orders of magnitude. I have never been sure that any other projects should have an unequivocal "fund" response. I have seen some other quite good studies recently but they have not come through to the public consciousness yet and none of them are a no-brainer 'fund it' like DecodeME. Most of the stuff that we have discussed, at least until the last year or two, I wouldn't expect to get MRC funding.

 

[Sasha]

I share this concern partly because it already mentally shoehorns ME/CFS into a 'post-infective illness' pigeonhole. That will immediately bring in the post-infective illness fast-followers that are so evident on X. ME/CFS does have an important link to infection but the last thing we want is researchers who think in these mental pigeonholes.

I'm less keen on a general post-infective illness group because it will be much wider and include things probably very un-ME-like.

As far as whether we would be wise to join forces with Long Covid, it seems to depend rather heavily on what proportion of PwLC have ME, and we seem to be all over the map there.

I think the analysis is probably useless. It looks at the proportion of people with LC who satisfy ME/CFS criteria. But the majority of people who get LC get better by six months or at least a year. If you sample the ones who go on being ill then quite a few may have ME/CFS. If the figure was really 50% it would show up on all sorts of statistics on absence from work etc. There has been an increase in people off sick but not to that extent (assuming that 10% of people who have Covid get a period of 'LC'.)

Do we know that most people who get non-Covid ME don't get better by a year or so, though, and aren't just like ME-type PwLC in that regard?

The proportion of PwLC who have ME seems to be an important question to resolve for all sorts of reasons. How could it be done? It seems weird that it hasn't been done well, if all those studies in the meta-analysis are duds.

 

[Jonathan Edwards]

As far as whether we would be wise to join forces with Long Covid, it seems to depend rather heavily on what proportion of PwLC have ME, and we seem to be all over the map there.

For me the problem with joining up with Long Covid is that Long Covid has already been colonised by second rate pigeonhole researchers world wide. The last thing you want in medical science is to be the latest fashion. People carrying tired old baggage ideas from the 1970s will jump in straight away.

 

[Kiristar]

My concern is that it sounds like its goal is creating and maintaining a bureaucracy. Politicians like that, since they can point to it as progress, even if there are no scientific advances. Some structure can be good, to prevent waste, but the wrong structure is waste in itself. Will the government use input from researchers who have made credible efforts to look for the mechanism of ME, or will they cherrypick researchers who will give input convenient for the bureaucrats?

The goal isn't to create a research bureaucracy. But to remove the issues that make research ineffective and costly for lone institutions now eg by setting a common research definition and framework, sharing data, access to patients and PPI rather than each place do these things separately, making results inconsistent / incomparable and expensive due to reinventing the wheel.
The structure was developed by a group of researchers learning from other countries and past similar UK projects, trying to set up what they need to be effective and not by ivory tower bureaucrats.

 

[Jonathan Edwards]

But to remove the issues that make research ineffective and costly for lone institutions now eg by setting a common research definition and framework, sharing data, access to patients and PPI rather than each place do these things separately, making results inconsistent / incomparable and expensive due to reinventing the wheel.

I am sure everyone has the very best of intentions here. But as, I suspect, the only person involved in this discussion, either here or in the relevant working groups, who has actually made a major difference to the understanding and treatment of chronic disabling disease, I will just say that for me this is bureaucracy. It isn't what my science was like at all. I beavered away alone, with Jo C and a few staff and made contacts with people across the world from time to time as needed. We spent hardly any money.

But all will be well. Things will fall into place. Because there are a few people prepared to go on tearing their hair out to get things right.

 

[Sasha]

I will just say that for me this is bureaucracy. It isn't what my science was like at all. I beavered away alone, with Jo C and a few staff and made contacts with people across the world from time to time as needed. We spent hardly any money.

That's the thing, though - you had jobs. You were staff, not researchers on short-term contracts, scrabbling for grants to stay in the field. You could do your research on the side.

Also, you may have been unusual in working in an area that didn't need much money spent on it. DecodeME, for example, cost a lot.

 

[Utsikt]

I think multiple things can be true at the same time:

1. Ideally, we need more very good researchers in the field of ME/CFS.
2. The lack of funding for ME/CFS research has hindered basic research from being done.
3. A lot of the current research has been wasted due to poor methodology or hypotheses. This is true for all of medicine.
4. Funding and attention attract all kinds of researchers - and maybe more of the bad ones.
5. We need government funding do to large scale basic research like genetics, large cohort tracking, biomarker verification.
6. Really good ideas will likely receive funding today regardless of the bureaucracy in place.
7. An organisation might attract people that at good at playing the organisation game instead of people that are good at achieving results with said organisation.

I don’t think more funding, attention, or public organising is necessarily bad per se. But I don’t think it’s a guarantee for a better outcome. And it might not shift the scale at all.

 

[Yann04]

I am sure everyone has the very best of intentions here. But as, I suspect, the only person involved in this discussion, either here or in the relevant working groups, who has actually made a major difference to the understanding and treatment of chronic disabling disease, I will just say that for me this is bureaucracy. It isn't what my science was like at all. I beavered away alone, with Jo C and a few staff and made contacts with people across the world from time to time as needed. We spent hardly any money.

But all will be well. Things will fall into place. Because there are a few people prepared to go on tearing their hair out to get things right.

But doesn’t that require at minimum someone to fund your salary and having access to a good lab?

Wouldn’t having more funding increase the chance that more people interested could have this ergo more probability of finding something.
I very much assume there are some researchers who are talented and rigorous and have a chance of making major discoveries in ME but shy away because of the poor funding and career prospects in the field.

 

[Kitty]

Don’t we need both? Good people with good ideas and good people working hard to get the funding and wider support?

Playing devil's advocate (who, me?) I'd say that if the people and the ideas really are good, they'll win the support of individuals who have real influence in funding circles. Patients don't have much clout, even when there are a lot of us.

It sounds to me as if we should put ME/CFS-specific advocacy plans on hold for the next 12 months. We should get initial findings from DecodeME, and reading between the lines there may be one or two other things coming down the line too. A single paper reporting a solid finding or strong association could throw all other plans out of the window.

 

[Yann04]

Really good ideas will likely receive funding today regardless of the bureaucracy in place.

I personally think this is wishful thinking. But I don’t have the energy to debate this.

 

[Utsikt]

I personally think this is wishful thinking. But I don’t have the energy to debate this.

I’m just replying to elaborate on why I’m optimistic on this specific point.

SequenceME seems to be able to get funding and partners, and DecodeME got funding. Same with Fluge and Mella’s studies. It obviously takes a lot of work to secure the funding, but that would be true regardless of the bureaucracy in place.

It might not be the case all over the world, but this proposal only affects the UK.

 

[Yann04]

I’m just replying to elaborate on why I’m optimistic on this specific point.

SequenceME seems to be able to get funding and partners, and DecodeME got funding. Same with Fluge and Mella’s studies. It obviously takes a lot of work to secure the funding, but that would be true regardless of the bureaucracy in place.

It might not be the case all over the world, but this proposal only affects the UK.

But my thinking is that is selection bias. In that we only know about good studies that got funding because they got it.

There could be plenty of good ideas we never heard of because they never got to that stage.

Definetely agree that some good ideas get institutional funding. But disagree it is generalisable as a trend.

 

[Utsikt]

I very much assume there are some researchers who are talented and rigorous and have a chance of making major discoveries in ME but shy away because of the poor funding and career prospects in the field.

A counter point is that we very recently had a researcher from another field join us here on the forum, and he’s already planning talks with other researchers.

And I suspect the really good ones don’t really care too much about the career prospects because they want to do science and not play the game.

 

[Utsikt]

But my thinking is that is selection bias. In that we only know about good studies that got funding because they got it.

There could be plenty of good ideas we never heard of because they never got to that stage.

Definetely agree that some good ideas get institutional funding. But disagree it is generalisable as a trend.

A lot of the planning and reasoning has to be done before any of the grants come into play. And we know small pilots can get funding through patient organisations etc., you don’t have to start with the large scale stuff right away.

I also think the ME/CFS world is small enough that someone here would have heard of their hypoteses if they had any merit. It wouldn’t make any sense to not try to spread the word to gain some traction.

 

[Jonathan Edwards]

But doesn’t that require at minimum someone to fund your salary and having access to a good lab?

It is the way you do it that is important. I benefited from a scheme set up by the Arthritis Research Campaign that had the policy of seeding senior clinical lecturer posts with a view to professorships in Universities where a suitable candidate could be identified. Somebody thought I would do so I applied for 'my job'. I was nearly booted out but benefited from some musical chairs that suited the College, which made me professor. Jo Cambridge never had a regular salary. We found money where we could.

Wouldn’t having more funding increase the chance that more people interested could have this ergo more probability of finding something.

It would chiefly encourage people with no great talent to move into the area in my experience. Dedicated people work on a problem because they have a personal motive to do so. Sure, having funding available when someone good needs it is crucial, but it is the way you do it.

I very much assume there are some researchers who are talented and rigorous and have a chance of making major discoveries in ME but shy away because of the poor funding and career prospects in the field.

I doubt it. The people committed to ME/CFS research tend to battle on despite having no funds. I could have earned twice as much just being a rheumatologist with rooms in Harley Street but I got fascinated by RA and struggled for twenty five years as a result and I am glad I did. I may have an old fashioned view of science but I know what produced results in my own field.

 

[Jonathan Edwards]

There could be plenty of good ideas we never heard of because they never got to that stage.

I think I probably get to hear, mostly through here, about most of the ideas and we know most of them are pretty pedestrian. In the last two years some reasonable projects may have been turned down at MRC that shouldn't. The solution to that is to confront the MRC or for there to be a change of staff there - which there has been quite recently.