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

InitialConditions

InitialConditions

Senior Member (Voting Rights)
https://psp-me.co.uk/campaign-strategic-approach-mecfs-research/

A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS. 

Urgent action is needed to ensure a strategic approach for research into ME/CFS and associated post-infectious illnesses, including Long Covid. There are an estimated 1.3 million people in the UK who experience ME/CFS or ME/CFS -like symptoms with post-exertional malaise, the hallmark symptom of ME/CFS.

Despite ME’s high prevalence, little is known about its causes and ultimate cure. Parallels have also recently been drawn between ME/CFS and Long Covid with some research indicating that at least 50% of people with long covid have symptoms that directly mirror ME/CFS."

The Grand Challenge 
The grand challenge therefore is to urgently improve understanding of disease mechanisms and to find evidence-based diagnostic tests and treatments for the growing numbers of patients with ME/CFS and associated post infectious diseases. These strands must be run in parallel to best serve people with ME/CFS. 

The proposed solution 
We have worked together to develop a proposal to establish a national ME/CFS research consortium in line with UKRI’s 5-year strategic themes and 4 of the 5 NIHR Key Initiatives.  

While ME/CFS is not a mental health illness, our platform proposal is based on the principles established in the MRC’s recent Mental Health Platform investment. It would comprise five hubs, funded over 5-years, coordinated by a single centre whose remit is to work in partnership with patients and stakeholders to develop and promote innovative solutions to building research capacity for patient benefit.  

The new ME/CFS and Post-Infectious Disease research platform will adopt the successful collaborative model of the Mental Health Platform by bridging research silos, accelerating drug development, connecting academic research with industry and clinical care, using interdisciplinary methods (including Artificial Intelligence/Machine Learning), whilst performing open innovative research, sharing data, and accelerating new treatment options.
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The proposal (attached) can be supported via the 'Support the campaign' button on the above linked page.
 

Attachments

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Additional documents:

(i) Letter from ME researchers to funders
(ii) Letter to MRC and NIHR leadership
(iii) Strategic Research Funding - Parliamentary Briefing
 

Attachments

I don’t have much context here. What are they actually proposing?

InitialConditions said:
"Despite ME’s high prevalence, little is known about its causes and ultimate cure. Parallels have also recently been drawn between ME/CFS and Long Covid with some research indicating that at least 50% of people with long covid have symptoms that directly mirror ME/CFS."
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They could have done without the last part.
 
It is not clear to me what is actually being proposed. Which is why I didn't join in on the working group I guess. I am not clear what 'Hubs' are.

I have also had a conversation with someone who has signed who expressed the same uncertainties - if not rather more baldly.

I think events will overtake this. It may do no harm but we don't want white elephant millstone hanging around the necks of those actually making progress.
 
Jonathan Edwards said:
It is not clear to me what is actually being proposed. Which is why I didn't join in on the working group I guess. I am not clear what 'Hubs' are.

I have also had a conversation with someone who has signed who expressed the same uncertainties - if not rather more baldly.

I think events will overtake this. It may do no harm but we don't want white elephant millstone hanging around the necks of those actually making progress.
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As you know ME research is at a very very low level in the UK and across the world - there are very few researchers who know anything about it or have any interest. On odd occasions when someone expresses interest they are quickly put off by the difficulties (things like bad review processes) and probably the lack of overall support.

So if we take say Decode coming up with interesting results then who are the researchers who will follow them up. Say that three potential mechanisms are identified then we need people who are experts in these areas to explore these. But the current situation is that its not easy; reviews are bad and there is a lack of infrastructure and expertise to support research (biobanks, data sharing, diagnostic methods, ways to measure severity etc). These things make doing research easier and having an organization (that needs to be backed by government) signals to researchers that ME research is being taken seriously (maybe helping to counteract the "don't go there you won't get funding its bad for your career".

So we need to create infrastructure and organization to help with capacity building. This is what the hub proposal is about. There have been research platforms created in other areas that are helping boost research. Equally look at how the German Government have put money into ME research and it has attracted lots of new researchers into the field.

I realize that you think ME research shouldn't get funding until some researchers spontaneously come up with work that will suddenly interest lots of researchers. But that will never happen. Something is needed to kick start research in ME and this type of proposal seems like a good way to do that.

I have also seen this type of approach being used in other areas (non medical ones where the government has identified the strategic need to increase research in some areas). Unfortunately I don't see medical research funders having much of a strategic view in terms of meeting the countries needs (they just seem to be a club for funding those within the club making small advances). Given the numbers with ME in the UK (400k + more with long covid) and the severity (leading to costs and high opportunity costs) it would seem important that the country invests in research (and discovery research). The other economic argument is that UK industry could miss opportunities as discovery happens as we don't have researchers knowledgeable in the area to take advantage of this.
 
Yann04 said:
I think it’s one of those memes that people have seen repeated so many times that they just become an agreed upon truth no matter what the data says.

Like “25% of people with ME are housebound or bedbound.”
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There have been a number of studies Jason did one Estimating ME/CFS prevalence in individuals with long COVID. I think there was one study which had smaller numbers.

Utsikt said:
They could have done without the last part.
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The point about including long covid is there are probably common mechanisms (given ME criteria are met for a significant number of people) and hence it makes sense to develop research capacity jointly. It also extends the numbers and the size and justification of the problem
 
The letter from the 9 researchers is especially interesting, particularly around the challenges with MRC. Open criticism of reviews as "highly inappropriate" is unusual & the mention of a reviewer stating that there "is a universal treatment" for ME/CFS makes me wonder to what extent psychobehaviouralist reviewers are still trying to squelch research that doesn't conform to their worldview:
A recent application to the highlight notice, having taken into account advice from academic experts, UKRI funders and PPI groups about the imperative to align and synergise molecular pathogenesis approaches across both ME/CFS and Long Covid, and from an internationally recognised team with multiple relevant, recent publications in Science, Nature and Lancet, was declined with one referee allocating a score of ‘1/6; poor’. Another research team with a similar output profile has shelved all plans to work on ME/CFS after four attempts to obtain funding since 2020.
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Each application was revised in line with the feedback but then compromised by highly inappropriate reviews, two of which indicated that the reviewer had not read the grant (e.g., by criticizing experiments that were not proposed anywhere in the application), and one of which indicated that the reviewer had little or no relevant knowledge (e.g., by stating that there is a universal treatment for ME/CFS). Other reviews used earlier published research with conclusions based on highly questionable data to criticize the validity of the approach.
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Adrian said:
The point about including long covid is there are probably common mechanisms (given ME criteria are met for a significant number of people) and hence it makes sense to develop research capacity jointly. It also extends the numbers and the size and justification of the problem
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I understand why they want to mention LC, but saying that 50 % with LC also has ME/CFS is simply wrong. Those numbers are from reports from specialist clinics and they can’t be generalised. There really is no excuse for mistakes like that.

It would have been more then enough to say that the number of people with ME/CFS is increasing due to frequent covid infections.
 
Utsikt said:
@Adrian what stops the money from being wasted like what they did in the US for covid?
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Lots of research money is wasted. But the notion of having some joined up strategy to build capacity and research platforms should tend to create useful artifacts and people with expertise to continue.
No one is suggesting that peer review should not happen. But it needs to be acknowledged that ME research is early in the stage of exploring hypotheses (although hopefully Decode will help here).

One of the reasons for having a mix of researchers, charities, patients and industry involved is to try to focus research in useful areas.

To my mind some research should fail - as in having negative results - otherwise risks aren't being taken in exploring potential outcomes. In the same way that, for example, a VC would expect to invest in 10 companies to get success with 1. But in both cases the doing stuff builds expertise that can be used in other projects.
 
Adrian said:
Lots of research money is wasted. But the notion of having some joined up strategy to build capacity and research platforms should tend to create useful artifacts and people with expertise to continue.
No one is suggesting that peer review should not happen. But it needs to be acknowledged that ME research is early in the stage of exploring hypotheses (although hopefully Decode will help here).

One of the reasons for having a mix of researchers, charities, patients and industry involved is to try to focus research in useful areas.

To my mind some research should fail - as in having negative results - otherwise risks aren't being taken in exploring potential outcomes. In the same way that, for example, a VC would expect to invest in 10 companies to get success with 1. But in both cases the doing stuff builds expertise that can be used in other projects.
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I don’t mind negative results and that’s not what I meant to imply by «wasted». In my mind, resources are «wasted» if they didn’t have a chance at producing results to begin with.

So my concern is: how do they intend to make sure that the money is spent on things that has the potential to provide us with a better understanding of ME/CFS?
 
The proposal looks to be requesting "strategic investment" funding for a research consortium to build a research platform structured like the one the MRC did recently fund for Mental health. https://www.mentalhealthplatform.ac.uk/
Structurally it's based on a hub and spoke model.
It makes sense to go with a structure they approve of.

Individual research centres would each be focussed on a PSP theme with a lead institution platform hosting a data repository and handling the much needed common research framework , environment, infrastructure and processes eg PPI etc as depicted in the organisational diagram.

While it's not a massively detailed paper, it's intended as a concept proposal not a final detailed requirement specification. It's job is to paint enough of a picture of the concept to proceed to the next stage where the details get thrashed out.

The concept that is there seems quite clear to me and process wise it doesn't make sense to specify every detail at a the very first preliminary proposal stage until there is a commitment to funding, as it would be wasted effort and things constantly change.

I find it very reassuring that all three of the lead charities are joined up and behind this and the team at decode are involved.

I think it is a tangible proposal that could be a very good solution to address the delivery plans extremely empty research chapter action list.

I see it as a positive proactive step forward by the charities and very much hope that the ME and LC community get behind it and it is effective in piling more pressure on the government to actually do something constructive to help us rather than just make empty platitudes.
 
Utsikt said:
So my concern is: how do they intend to make sure that the money is spent on things that has the potential to provide us with a better understanding of ME/CFS?
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By focusing on the important questions - set out by the JLA exercise.

Wise spending of research money will always be an issue but there can be a huge cost to not spending, not building research capacity and ending up with no research and hence no treatments. We've seen too many years of no spending and no progress.

[Adding]

I think one of the reasons for building structure rather than say just calling for ring fenced funding is that it is more likely to produce positive outcomes (in the long term as it helps build facilities and expertise which helps facilitate good research)
 
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?
 
Let’s be honest, the UK government spending review is coming up and this could be setting budgets for multiple years for many organisations including those that fund research. There’s also other events like the 10 year health plan and of course Delivery Plan for ME/CFS around the same time.

Look at the timing of this in that context. This is what effective lobbying groups do.
 
Nightsong said:
The letter from the 9 researchers is especially interesting, particularly around the challenges with MRC. Open criticism of reviews as "highly inappropriate" is unusual & the mention of a reviewer stating that there "is a universal treatment" for ME/CFS makes me wonder to what extent psychobehaviouralist reviewers are still trying to squelch research that doesn't conform to their worldview:
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Yes, it's good that they've decided to publically challenge funders on this.
 
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