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

Not really. From my perspective as some who has worked on there mechanism of chronic disease it is very obvious which groups should be supported. Some are doing excellent work. Others aren't.

Start-ups is the model we already have. I am not sure these analogies are very useful.

 

I'm one of the Nays, because I'm not convinced an artificially constructed pipeline is what's needed. I think what we need is bright people with ideas, and they cost nothing.

Someone making a fundamental discovery lobs a pebble into the pond, and ripples go out in all directions. In my mind, that's what a research pipeline looks like.

There are some very good people in the UK, but I don't see that it matters where they are.

Nor does it matter what area they work in. Ripples will reach people we didn't know existed, with knowledge we didn't know we needed, working on problems we didn't know were related. How do we plan for that?

 

I have to admit that I really don’t care where stuff gets published, and I’m not confident that researches that care about it are motived to do the best possible research for the patients.

The goal shouldn’t be to create the best circumstances for researchers, but to create the best circumstances for breakthroughs. The methods for achieving those outcomes might be very different and even directly conflicting in some cases.

 

How does a «research strategy» mitigate those issues? Who’s strategy is it and who has to follow it?

 

I know that is how academia works - but the people that are good at playing the game might not be good researchers. And the good people often don’t like playing games so they find positions where they can do their thing without it. At least that’s my experience from other industries.

Breakthroughs are created by excellent researchers, not just any researchers in general. My question is still how to attract and fund the right people - people that actually can make a difference. More mediocre research isn’t going to make a difference and it might actually harm the long term prospects of funding because they don’t have anything to show for their previous work.

My job was to write and implement strategies both in the private and public sector. I wasn’t able to do it for too long before Covid took that away from me, but I never saw a strategy that ever achieved anything without the right people pushing for concrete measures. An usually they would ignore the strategy when they knew better themselves.

Strategies are also extremely high level and rarely tell you anything about how you’re going to achieve your goals.

If MRC is going to decide on the funding - how does their current track record look? Judging by examples in the letter you shared earlier - it’s appalling.

I don’t see anything in this proposal that directly targets decision making at MRC.

If MRC gets a big pot of ME/CFS-funding, it’s going to be impossible to deny the BPS-lobby because they will just claim that they are doing bio research with a holistic viewpoint based on bio neuroscience etc. And everyone will accept it.

And they will keep denying the good projects like they do today.

 

This .
I live in the land of Carson and Stone and their ever expanding empire .

 

It means not this:

The above is the opposite of a research pipeline, it's an ideological gate. There is nothing to work with here, the gate blocks everything reflexively.

ME/CFS research proposals can't be assessed properly by randos, it needs competent experts who understand the state of things. This would be the goal here.

 

The downward spiral where low funding means few results, leading to low interest from researchers because there isn't much to work with, which means few submissions, this keeping a state with few results to work with.

Basically it's asking to jumpstart a field that has been intentionally suppressed through dedicated funding. This is necessary. I assume that everyone involves know this, that the intentional suppression has been very effective at one thing and one thing only: at depressing the entire area of meaningful results. So to get out of this spiral, we need to generate interesting starting points.

Although it's hard to say how we can accomplish this when you look at RECOVER and how almost $2B later they haven't even shown a single thing worth a damn. It could be that the medical profession is just so completely out of its depth over a problem of this complexity that no amount of money will jumpstart anything. Most likely because about 90% of that money appears to have been badly misspent, but that's still almost $200M and still nothing at all worth showing.

Medicine is extremely conservative, and if there's one thing that defines a conservative approach, it's that it's never there early, it barely starts putting its slippers on to enter very late in the game. The general approach in medicine is clearly to just wait for someone to find one thing, and if that takes centuries then that's just the way they do it.

 

It's guaranteed that whatever amount is made available, even if it's explicitly marked as being for serious biomedical research only, a lot of it will be grabbed by ideologues, or wasted by newcomers with good intentions but no understanding of the situation, as we're seeing in LC. We can't avoid that. Any amount of money marked for serious research will have to be offset with some junk, as the reactionaries will throw a fit and get their way anyway.

The question is over how the balance is spread out. In a sane world no public funding would go to anything psychobehavioral, it serves absolutely no purpose and the near total absence of private funding for it (outside of investment ventures) says a lot about this, how almost no one is willing to put their own money on this. They depend entirely on hand-outs from big interests, who also see this as an investment.

But as I said above, any money they get will not see them move one bit. They don't even do real research, it's strictly marketing, and they will never move on from the state they have been since day 1. Whereas all it takes for us is one breakthrough, which makes it worth having some funding wasted on their marketing.

 

I can’t see anything in the proposal that addresses this point. Which is why I’m asking about it.

I don’t understand how any of that matters when it comes to the decisions regarding funding for specific projects?

Even if we accepted that some funding would go to the BPS crowd, how do we ensure that funding actually gets to the good biomed researchers as well?

Nobody has given any answers for this as far as I can tell. And it’s the most important question, IMO.

 

To be honest I was surprised at some of the responses to start with, but I've found it really useful and informative to talk through them and try to understand concerns. I hope it’ll make me better at making the positive case to others for what we need when I try to.

Setting up hubs or whatever will not solve things alone. Equally a scientific breakthrough by an individual will not solve things alone. I’ll keep on saying it but my view is we need a combination of things and we need to remove barriers as much as possible without introducing new ones. I see value in what those for and against this proposal have been saying.

I wholeheartedly agree. Especially as we’re at a point where long term strategies and funding are being set out and competed for. This is also part of what I mean about being ready. You often need to work on people for a while until they come round, people can be hard work…and are often the obstacles. We need people who currently don’t understand, to understand, so that when things arrive in front of them it’s an easier ask. Research, education, hospitals, care, it’s all part of the picture.

 

I'd just like to share one example of a promising ME/CFS Biomarker from a UK group. It was published in 2018, 7 years ago. The team still does not have sufficient funding to properly progress this very promising work. Current status is they can separate ME vs MS vs healthy controls, and ME vs severity level, and need a much larger replication cohort. They need many many more samples. The lead researcher had to accept another position due to lack of funds and even with that person working remotely part time, they are still struggling.

A new approach to find biomarkers in (CFS/ME) by single-cell Raman micro-spectroscopy, 2018, Morten et al

One of the keys to good studies is being able to first stratify patients. This project looks like an essential platform to do that, pending a large replication study. Why hasn't it been funded. This is just one example.

 

The last post in that thread says that the findings did not replicate. But it certainly took a long time to get that done and money would have helped!

 

Where is funding going to come from for this study?

"wrh.ox.ac.uk/news/mitox-2025 Great meeting yesterday! Sheeza Mughal's talk showing serum from severe ME/CFS & Long Covid patients impacts 3D muscle function, induces mitochondrial stress and eventual failure was one of the highlights. A bigger study is desperately needed."

"What is exciting about the model is that not only do we have a cell model that reflects some of the issues observed in patients when we add serum. But can also look to fractionate the serum into its components and test which specific component /factor triggers the response."

 

Some findings did not replicate! My understanding from previous talks was that sampling handling was an issue. Metabolites used for energy are used up very quickly e.g. glucose. If you don't control sample processing time after collection, short half life metabolites used in the TCA cycle don't give consistent results. That is a problem for CureME Biobank samples which can have 0 to 14 hrs before being processed and frozen. Other long life metabolites are not affected.

I read recently somewhere that they have started a pilot project to try and decode the some of the unknown VIP metabolites but can't find the reference and don't know if it is funded. The Oxford ME/CFS web page for Karl Morten shows a project titled "Professor James McCullagh (Department of Chemistry). Using plasma mass spectrometry analysis to increase our understanding of ME/CFS.".

 

Possibly a bit of a tangent but there was mention on a Financial Times podcast I was listening to of the UK gov looking at attracting teams of scientists from the US and supporting them in getting set up and finding their work in the UK. There seemed to be a particularly focus on life/bio-sciences, research leading into medicine etc.

 

This. It can't be said enough times.

We had 30-odd years of people suggesting structures to develop what was effectively applied creativity, and 30-odd years of explaining why it wouldn't work. Structures just get filled up with people who're good at working in structures.

The real job was to chase down the truth and tell it, regardless of how long it took or how unexpected or confronting the result was. The best practitioners were obstinate sods who'd walk rather than lower their standards, not people in polite suits.

I'd be surprised if scientific research was very different.