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

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.

 

Yes I think we do know that. In fact I would say that we are only really interested in the people who have an illness that lasts more than a year and we can call that ME/CFS. The others are better described as having post-viral fatigue. The two illnesses may have major commonality in terms of physiology but it is the long term persistence of ME/CFS that makes it a major disabling illness and something different from PVFS.

 

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.

 

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.

 

I agree that those samples would be the more severely ill but is there any reason why a different proportion would have ME-type LC than at lower levels of severity? (Just thinking aloud about whether there is any way to rescue some useful information from these studies.)

I don't think that the arbitrary ME diagnostic cut-off means that those who fall below it don't have ME, though.

 

People campaigning for anything have a tendency to believe and/or use unreliable data if it supports their objectives and vice-versa. I have always considered that to be unfortunate and wrong but there are numerous examples (not least in US politics) where it has be shown to be effective, at least in the short term. Apart from the value of truth per se, I consider it to be mistake to use invalid data to support valid arguments as it enables adversaries to undermine the latter by exposing the former – as has happened repeatedly with criticism of BPS research.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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 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.

 

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.

 

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.

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 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.

 

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.

 

Have the MRC never been confronted? People have been complaining forever about their mad decisions and irrational rejections by BPSers, but do you think those complaints weren't necessarily justified?

 

Doesn't being able to find odd bits of money depend on being allied with someone in a senior position who can access those departmental pots and apply for grants, though, which is something that people on research contracts can't do? Unless a researcher can glom onto someone senior with a permanent contract who is willing to support their ME/CFS research, we're going to lose them, surely?

 

The reality is more complex and also more mundane. You survive if you can. A high proportion of good women scientists in particular have held on simply because they were indispensable - they knew what they were doing when nobody else did.

That doesn't really arise. A senior researcher is only going to support what they are interested in.