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

And senior researchers who are interested seem to be pretty good at finding bright minds to work with them, if Chris Ponting is anything to go by.

Whereas the NIH, which had enough money to buy Edinburgh and put a sprig of parsley on top, found Brian Walitt.

 

A lot of the criticism of PACE in the early days was misplaced and in a sense unjustified. The problem with PACE was not the diagnostic criteria or choosing to study a psychological meachniasm. It was the methodology that made it a bad project. I wrote to Fiona Watt to question her continuing support for PACE and she replied in a way that indicated she wasn't the slightest bit interested in quality, just the MRC reputation. Until recently it seems that the MRC has just assumed the critics are irritating activists. That may have changed but I don't have any detailed information. The government working parties provided an opportunity for a frank discussion of what was the real situation but the chair was clearly not interested in annoying the funding bodies so nothing happened. The representatives from the funding bodies didn't really seem to recognise what problem there might be. They just produced the usual statements about having fair rules and being pleased to have good applications.

The whole infrastructure of biomedical science is pretty much a cess pit I am afraid. If general there are far too many people doing science, and for the wrong reasons. Progress up the ladder is much the same as events in Lilliput and Brobdingnag. S4ME is an island of sanity in comparison.

 

And that is exactly the problem.

 

That's my point, though. If a junior researcher can't become a protegee, they've had it.

 

Doesn't that apply in almost every field with tough competition, though? I've never worked in science, but it often did in those I am familiar with.

It's not what you know, it's who you know etc.

 

One thing I was surprised NOT to read about. Having ME/CFS clinics tied to research.

If my reading of @Jonathan Edwards posts about his ground breaking research are right, he had a steady access to patients. How are ME/CFS researchers going to be able to access patients if they need to access fresh blood and process blood immediately to control their experiments. There seem to be no biomedical research clinics especially after funding for Julia Newton's team at Newcastle dried up.

I understand the almost universal plaudits for DecodeME but they "only" needed postal access with samples processed by an experienced team who had processed 100,000's exact same samples before.

Karl Morten was one of the only signatures on the researchers letters. Do people understand how many years and how many hoops he had to go through just to get the Raman Diagnostics papers(s) published. Again and again he had to add more samples due to peer review asking for more. And again and again he had to beg and scrounge to add another batch of patient samples to the pilot study cohort. Even with promising pilot studies there is no access to MRC/NIHR funds to do a proper sized replication study. UK biomedical research has been at a dead end except for the odd project or so.

And the US has funded a significant amount of UK research via LSHTM and now Brunel with Jackie Cliff. More than a dozen years of funding I believe. Without that funding there would have likely been no team to build the CureME biobank initially. The UK has to step up in funding. How is that going to happen if a research network linked to clinical access to patients is not built.

The Netherlands have a plan they are implementing. So is Germany. Please UK, catch up.

In the last CureME webinar they mentioned that samples are aging fast and they have a lot of available samples. Who in the UK is placed to use them for a good quality study that has funding?

 

Structures that can funnel funding and nurture careers could overcome major barriers. From what I can see this is considered best practice. Some money goes into overheads, but the result is greater continuity stability and ability to get things done.

I'd be interested to hear from current researchers on how they see it.

 

One might expect that this is the sort of thing that a well-funded system would fix. The papers suggest that the hub model will be based on a model the UK uses for mental health.

This is an excerpt from the Brain and genomics Hub of that mental health model and it shows that one of their roles is finding patients to study

 

What I'm catching is that funding and coordinating structures are good, actually?

Is there some other subterranean power struggle going on in the UK

 

I would like to Know how much funding is being asked for over the 5 year period, this type of £20m or would that just be the set up starting costs?

 

Yes. We have no data on whether or not these people have the same illness – no evidence at all. What we do know is that long Covid is “defined place great by a couple of hundred symptoms – it’s not based on a limited number of course symptoms. Some definitions of long Covid, which have been used to diagnose patients, don’t even require Significant physical disability. Mental health problems alone will suffice.

So long Covid is an incredibly broad thing, something the field doesn’t seem to have got to grips with yet.
there’s some evidence of studies that a lot of people who didn’t get Covid have long Covid symptoms seen afterwards (there’s an employment one and at least one other).

one of the major challenges with ME/CFS is identifying people that have something distinct, as opposed to people have general health, including chronic fatigue. Without any data, we can’t receive anything about this huge group of people with a broad range of symptoms.

See above.

and it: there’s wide agreement that postexertional malaise is a defining symptom of the illness Because it’s so unusual.

It’s not required for long Covid. I don’t think safe to make any kind of assumption of around amillion people in the UK having ME/CFS in the absence of any evidence.

 

Certainly Long Covid is a very broad thing but I had thought that it was well established that there's a subset who fit ME criteria. Is that not the case? I'm wondering if we're talking at cross-purposes.

 

I can see that, and maybe it’s what’s needed to get a result. But like you, I think it’s high risk, as well as not the right way to go.

The numbers are already pretty big, and I wonder if making them even bigger make the case that much stronger. Especially as a lot of politicians are even more dismissive of long Covid than they are of ME/CFS.

 

It’s only established more severe cases and those that found their way to specialist clinics or social media campaign groups. There’s no reason to assume they are typical of the whole, particularly when we know the whole are much milder and can qualify for long Covid with a huge range of symptoms.

nobody is suggesting that postviral fatigue should be merged with ME/CFS, in fact that’s one of the things people have tried to avoid, including Introducing severity threshold and making post exceptional malaise as the
cardinal symptom.

 

We seem to be epically at cross-purposes! I'm not suggesting that the ME/CFS subset of LC is typical of the whole - I don't think anyone is. I'm not suggesting either that PVF should be merged with ME/CFS, or that any of the criteria for ME/CFS should be removed to identify an ME/CFS subset of Long Covid.

To clarify, do you think that there is an ME/CFS subset of LC? Even if you think it's a much smaller one than the 50% touted?

 

I got ME/CFS from covid. I know many others that experienced the same. But I know far more patients that did not get ME/CFS.

So covid can cause ME/CFS. But that doesn’t mean that LC in general has anything to do with ME/CFS.

 

Yes, amongst those people who make it specialist clinics or are actively involved in social media groups who are not typical. I have no idea about the rest – the major majority. Some of them may have me/CFS, but I would like to see some evidence of this. I suspect most do not.

 

But there are PwME who never make it to the clinics or get involved in social media. The ME/CFS subset of LC is larger than the people in those places, surely? (I still have the impression that we are talking past each other a bit but that's the joy of the Internet.)

 

The absolute size of the subset doesn’t matter. It’s the ratio of the population that matter. And we know pretty much nothing about that.

 

Funding individuals who have the talent to make a big impact is clearly good. Such individuals now exist in the UK and they deserve funding.

But I am sceptical that trying to build 'co-ordinating structures' makes any sense. Biomedical science moves by unpredictable shifts in one direction and then another. You cannot build ME/CFS units to cover all the sub disciplines staffed by people with talent. My experience has been that new collaborations form and dissolve along the way.

If you ask a group of researchers what plan they recommend, they will of course suggest a multi-hub model, in the hope that none of them will lose out. Each of them might prefer to say 'just give me all the money' but that tends not to get you anywhere. We have had people saying something like that but they don't seem to be part of the proposal.

I don't think we have evidence that planning co-ordinated superstructure is a good model in medical science. We have no controlled experiments so what evidence we have is as anecdotal as the argument for GET. It suits people to say so.

So, yes, but it isn't subterranean. It is on the table. But much more importantly it seems that the real problem is that the medical profession not only do to believe in ME/CFS but are now deliberately airbrushing it out. As someone has pointed out, there is no mention of a clinical service in the proposal and there is no way forward without doctors and patients. None of the people involved in the proposal as far as I can see are physicians actually providing an ME/CFS service.

What that means is that, much as one would like a fairy godmother to decide who should be funded, we are stuck with a system that will need referee reports from 'experts'. Just as we have had 'experts' from BACME settle back in to running the service side, as soon as experts are called in on the medical academic side the default will be to have advice from people who don't believe there is anything to study.

The situation has been desperate, as we all know. But I am pretty sure it is going to change very soon. Maybe the data from Zhang et al. proves nothing. I would still like to nail that. But if they have genuinely identified genetic risk factors for ME/CFS we now have a real biological process to study. There are several other groups whose work I think will fall into place but is not as yet published, or has to be taken as circumstantial evidence only as yet because it does not have the causal certainty of genetic data. I think it will come together and at that point things should change completely, because academic physicians will be interested and suddenly forget that they did not believe in ME/CFS.

I may be wrong, and there is definitely another lap of the 10,000 metre tack to cover, but I think things are going to change. It would be nice if one could bend the ear of the head of MRC and have them say 'Oh gosh, yes, we really should have been funding these projects' but I don't have that privilege and I have no idea what the reply would be today.