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

Discussion in 'ME/CFS research news' started by InitialConditions, Apr 22, 2025 at 1:52 PM.

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  1. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    https://psp-me.co.uk/campaign-strategic-approach-mecfs-research/

    The proposal (attached) can be supported via the 'Support the campaign' button on the above linked page.
     

    Attached Files:

    Last edited: Apr 22, 2025 at 2:38 PM
    InitialConditions, Apr 22, 2025 at 1:52 PM
    #1
    Arvo, Robert 1973, hotblack and 7 others like this.
  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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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
     

    Attached Files:

    InitialConditions, Apr 22, 2025 at 1:58 PM
    #2
    Murph, Arvo, hotblack and 5 others like this.
  3. Utsikt

    Utsikt Senior Member (Voting Rights)

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

    They could have done without the last part.
     
    Utsikt, Apr 22, 2025 at 2:33 PM
    #3
  4. Yann04

    Yann04 Senior Member (Voting Rights)

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    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.”
     
    Yann04, Apr 22, 2025 at 2:38 PM
    #4
    Utsikt and EndME like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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, Apr 22, 2025 at 2:41 PM
    #5
    obeat, Starlight, MeSci and 2 others like this.
  6. Chestnut tree

    Chestnut tree Senior Member (Voting Rights)

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    Chestnut tree, Apr 22, 2025 at 2:57 PM
    #6
    hotblack likes this.
  7. Adrian

    Adrian Administrator Staff Member

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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.
     
    Adrian, Apr 22, 2025 at 3:20 PM
    #7
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  8. Utsikt

    Utsikt Senior Member (Voting Rights)

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    @Adrian what stops the money from being wasted like what they did in the US for covid?
     
    Utsikt, Apr 22, 2025 at 3:25 PM
    #8
  9. Adrian

    Adrian Administrator Staff Member

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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.

    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
     
    Adrian, Apr 22, 2025 at 3:26 PM
    #9
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  10. Nightsong

    Nightsong Senior Member (Voting Rights)

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    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:
     
    Nightsong, Apr 22, 2025 at 3:30 PM
    #10
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  11. Utsikt

    Utsikt Senior Member (Voting Rights)

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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, Apr 22, 2025 at 3:30 PM
    #11
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  12. hotblack

    hotblack Senior Member (Voting Rights)

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    That seems a key point. People working together. Both researchers and charities.
     
    hotblack, Apr 22, 2025 at 3:30 PM
    #12
    Chestnut tree, Deanne NZ, BrightCandle and 1 other person like this.
  13. Adrian

    Adrian Administrator Staff Member

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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, Apr 22, 2025 at 3:32 PM
    #13
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  14. Utsikt

    Utsikt Senior Member (Voting Rights)

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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?
     
    Utsikt, Apr 22, 2025 at 3:38 PM
    #14
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  15. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Utsikt, Apr 22, 2025 at 3:39 PM
    #15
  16. Adrian

    Adrian Administrator Staff Member

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    The numbers are uncertain and my guess would be higher. The 50% does come from what few studies there are. The 400k for ME comes from Chris Ponting's latest paper (I think published today). But for years we have talked about a vague 250k in the UK. The important thing is numbers give an idea of the order of magnitude of the problem and hence the need for solutions.

    And the latest Jason figures are from patients recruited from social media
    Given lack of investment in ME/LC research then figures will always be difficult.
     
    Adrian, Apr 22, 2025 at 3:42 PM
    #16
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  17. Kiristar

    Kiristar Senior Member (Voting Rights)

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    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.
     
    Kiristar, Apr 22, 2025 at 3:42 PM
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  18. Adrian

    Adrian Administrator Staff Member

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    Adrian, Apr 22, 2025 at 3:43 PM
    #18
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  19. Adrian

    Adrian Administrator Staff Member

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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)
     
    Adrian, Apr 22, 2025 at 3:45 PM
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  20. Utsikt

    Utsikt Senior Member (Voting Rights)

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    But those studies are not generalisable, and we can’t pretend they are just because it fits the narrative of «ME/CFS is a massive societal issue and it’s profitable for society to invest in research».
    We don’t need a bigger number than 250-400k to get the point across. The annual cost is already in the billions. It’s going to be profitable to solve the problem regardless of how many with LC that also has ME/CFS.
    Yes, but that doesn’t mean that we should use numbers that clearly are not appropriate for that use case. It’s like begging to not be taken seriously.
    And those numbers are also very, very biased and clearly not generalisable.
     
    Utsikt, Apr 22, 2025 at 3:56 PM
    #20
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