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

[Cinders66]

Before the mental health platform formation, The ME association had put in its DHSC delivery plan proposal something like the dementia platform that was set up in 2014.

The Dementias Research Platform UK (DPUK) is a £50 million investment, funded mainly by the Medical Research Council alongside six other partner companies. The aim is to speed up dementia research towards new treatments and preventions. The plans are big. Big ideas, large experiments and massive amounts of number crunching. But crucially, huge numbers of people. The DPUK will be the largest population study ever; two million people above the age of 50 lending a hand (and various biological samples along the way) to help researchers tackle key questions in dementia research

https://www.alzheimersresearchuk.org/news/dementias-research-platform-uk/

 

[hotblack]

Or is this campaign now separate to the DHSC delivery plan?

I think I mentioned it earlier but I don’t think it’s a coincidence in terms of the wider political landscape with a multi year departmental spending review, NHS 10 year health plan and yes the ME/CFS delivery plan all due this summer.

 

[hotblack]

I mean sharpening up on what we do know, individually and collectively. Questioning what we might assume we know, but possibly don't. The leaflets project has given us something of a workout in that regard, and I think we can see the results in some of the discussions that have happened alongside or since.

I think a lot of people here see knowledge, research as the route to all improvements. So supporting research and funding seems obvious.

I really like the way you look at it Kitty. And how we can as patients, be the best participants in any research seems a very worthwhile cause. In various different ways. Perhaps we can discuss this more as a group?

I also wonder what it is we should be asking for. And who we should be asking. I’d assumed trying to get people involved, support pathways and funding was worthwhile, but many seem to think not…

Also agree that understanding all the science isn’t necessary. I like learning because I like learning and biology is a new area for me. Probably more of a distraction or a change from sorting other practical things in my life out if anything. And a novelty to be able to use my brain after a few rough years! But I certainly wouldn’t want people to feel they have to to participate.

 

[bobbler]

Keep talking and honing our understanding, maybe?

I don't necessarily mean reading up on biochemistry if we as individuals don't know much about it. It's interesting, but hard to get the breadth and depth to spot important questions that haven't been answered convincingly.

I mean sharpening up on what we do know, individually and collectively. Questioning what we might assume we know, but possibly don't. The leaflets project has given us something of a workout in that regard, and I think we can see the results in some of the discussions that have happened alongside or since.

We can apply a lot of collective knowledge and experience to questions about whether theories make sense or findings add up. We can also put it to good use when it comes to testing interventions or commenting on ideas for trials. It's crucial work that even those of us with no scientific background can do, but there's always scope to get better at it.

agree

 

[Nightsong]

There's now an article in the Times about this effort.

 

[Hutan]

I think I'd be a bit concerned that the structure creates some sort of monopoly. If you aren't one of the anointed ones and you have an idea for something that fits within one the 'hubs', or indeed doesn't fit into any of them, is your ability to progress your idea reduced? Would the government say, 'oh, we've pumped all the millions into these hubs, sorry, none left specifically for you. Go talk to the hub manager'?

For example, take genetics. I would assume that Edinburgh gets selected as the 'Genetics, Machine Learning and Diagnostics' leader. Now, Chris is as fair minded as they come, but what happens if another researcher in another university has a great genetics idea? Do they have to collaborate with Edinburgh? What if the idea is about genetics and immunity? Does this outside researcher now have to work with the genetics team and the 'Infection and immunity' hub as well?

I don't really understand what is proposed here. Do the hub managers have funds that they manage? Or do they just organise meetings with other researchers doing work related to the hub topic? Or organise meetings with other hub managers? As far as I can see, the Mental Health platform that this idea is built on picks and funds winners that to a large extent just carry on with business as usual e.g.

The ImmunoMIND Hub is investigating how changes in the immune system and certain metabolic factors could cause severe mental illnesses (SMI).

ImmunoMIND is based in Cambridge and led by Professor Ed Bullmore.

I see Sarah Tyson signed the proposal. On paper, she would also be a shoe in to lead a hub: she is supported by the MEA, and BACME would endorse her, she herself has ME/CFS. Presumably she could claim to be well connected to clinics. There would be many BPS supporters in government who would be happy for her to be given funding. So, who is doing the deciding? If she managed to land this hub that was given as an example:

• PSP#2, 5, 10+: Clinical trials involving drug repurposing and/or innovative treatments.

what would that mean? Would that mean that she would have funding to do a study of some goal-setting app if she wanted?

I can't see how the structure gets around existing problems such as there being prejudice within the MRC and other funding entities. Nor do I think it solves the problem of there being some existing researchers in the ME/CFS field who are writing proposals that are not worth funding. Possibly, it might just entrench mediocre researchers in the system, and make it harder for better ones to get access to patients, funds and collaborations?

Wouldn't it be simpler and more equitable and possibly more effective to lobby for:

• government funding of the ME/CFS Biobank;
• several non-BPS clinics headed by specialists; and
• for a funded call for ME/CFS-related proposals?

That's a genuine question, not a rhetorical one.

 

[Jonathan Edwards]

I think I'd be a bit concerned that the structure creates some sort of monopoly,

I don't really understand what is proposed here.

Do the hub managers have funds that they manage?

So, who is doing the deciding?

I can't see how the structure gets around existing problems such as there being prejudice within the MRC and other funding entities.

Nor do I think it solves the problem of...

My thoughts exactly.

 

[bobbler]

Agree

And a further on this point about research needing to be combined with clinics/ access to patients that needs to be flagged:

It is vital that those who have been ill for longer are included - particularly because it takes a long time to get to know the illness (and most of us boundary push and can’t quite believe we don’t get slowly better for many years at first)

as well as those who are more severe

the current situation of the very mildest is of limited use - and needs people anyway to be part of a long term clinic not disappearing and not seen years on when they might be much iller (or indeed better if anything is found that works)

BUT I can’t see how they’d get any of these people brave enough and feeling safe enough unless these are totally different entities- it would be unsafe and unreasonable and to me feel like you are asking people to return to those who abused them (and still don’t want to change their attitude really) to have bacme-led or psych and are really not medical or any feeling of safety or care or upside just threat.

The past and I feel many current ‘clinics’ are more akin to a coaching type model which isn’t ‘care’ but putting people into a system where they are being watched and might feel coerced to give the right answers etc because of the position they are in (needing to not be seen as non-compliant)

I can’t underline how inappropriate and unsatisfactory and not anything like a medical situation what we’ve had has been and how because of this past and status quo huge care to ensure proper change ie making sure any old staff are oversighted so they aren’t just still believing old paradigms and coercive communication techniques will be. People who will be terrified of going into a system that has done them harm in many ways will need continual reassurance of their safety by this being cleaned up - and I think this needs a discussion to describe it in a way that sounds reasonable and doable

 

[hotblack]

I have not gone through what is being proposed in detail and in many ways I agree with the points @Hutan makes

My question though again comes back to how do we build the pipelines of researchers and the supporting frameworks/structures that will be needed to carry out research, drug trials etc in the future. I don’t see this just spontaneously happening.

Simplest for immediate research could well be to give some money to the biobank and to Chris to do their work, at least until we know more, but again again who is to say that isn’t biased as just my view?

And it seems better to have things running in parallel rather than waiting until they’re needed and only then starting asking for them. We’re already asking for SequenceME funding right? What about supporting other early stage researchers? What about the ability to gather samples cross the country rather than in limited areas around London?

Also CureME and DecodeME and didn’t just happen. They took work by lots of different people. Too much bureaucracy is a curse, but so is the idea of the lone individual who can do everything. The most successful projects in my experience lie somewhere in between. Good people with good support and structures. We can and should be working for both.

 

[Robert 1973]

I think I'd be a bit concerned that the structure creates some sort of monopoly. If you aren't one of the anointed ones and you have an idea for something that fits within one the 'hubs', or indeed doesn't fit into any of them, is your ability to progress your idea reduced? Would the government say, 'oh, we've pumped all the millions into these hubs, sorry, none left specifically for you. Go talk to the hub manager'?

For example, take genetics. I would assume that Edinburgh gets selected as the 'Genetics, Machine Learning and Diagnostics' leader. Now, Chris is as fair minded as they come, but what happens if another researcher in another university has a great genetics idea? Do they have to collaborate with Edinburgh? What if the idea is about genetics and immunity? Does this outside researcher now have to work with the genetics team and the 'Infection and immunity' hub as well?

I don't really understand what is proposed here. Do the hub managers have funds that they manage? Or do they just organise meetings with other researchers doing work related to the hub topic? Or organise meetings with other hub managers? As far as I can see, the Mental Health platform that this idea is built on picks and funds winners that to a large extent just carry on with business as usual e.g.



I see Sarah Tyson signed the proposal. On paper, she would also be a shoe in to lead a hub: she is supported by the MEA, and BACME would endorse her, she herself has ME/CFS. Presumably she could claim to be well connected to clinics. There would be many BPS supporters in government who would be happy for her to be given funding. So, who is doing the deciding? If she managed to land this hub that was given as an example:

• PSP#2, 5, 10+: Clinical trials involving drug repurposing and/or innovative treatments.

what would that mean? Would that mean that she would have funding to do a study of some goal-setting app if she wanted?

I can't see how the structure gets around existing problems such as there being prejudice within the MRC and other funding entities. Nor do I think it solves the problem of there being some existing researchers in the ME/CFS field who are writing proposals that are not worth funding. Possibly, it might just entrench mediocre researchers in the system, and make it harder for better ones to get access to patients, funds and collaborations?

Wouldn't it be simpler and more equitable and possibly more effective to lobby for:

• government funding of the ME/CFS Biobank;
• several non-BPS clinics headed by specialists; and
• for a funded call for ME/CFS-related proposals?

That's a genuine question, not a rhetorical one.

Agree with this. Given the broad support that the proposal has to date (notwithstanding the concerns that some of the signatories are reported to have expressed privately) I don’t think it’s realistic to tear it up and start again. But I’m wondering if we could/should lobby to modify the proposal to incorporate some of Hutan’s suggestions.

I certainly think any proposal needs to include the provision of non-bps physician-led clinics connected to research institutions. As far as I recall, there is no mention of such clinics in the proposal. If that’s is correct (please correct if I’m wrong), that seems to be a glaring omission.

@Hutan When you say “a funded call for ME/CFS-related proposals?” do you mean ring-fenced funding? I have always favoured that, although I understand the concerns about quality control.

One of the difficulties appears to be striking the right balance between collaboration, coordination and monopolistic control. Does anyone have any suggestions about how the proposal could be modified to reduce the risk of the latter?

I would be surprised if any of the signatories disagreed with funding the ME/CFS Biobank. If the MRC doesn’t want to fund it, I think it should explain why.

[Edited to correct autocorrect gobbledegook]

 

[Jonathan Edwards]

My question though again comes back to how do we build the pipelines of researchers and the supporting frameworks/structures that will be needed to carry out research, drug trials etc in the future. I don’t see this just spontaneously happening.

Except that it does happen. To me the research programme that made the quantum shift to real science for ME/CFS was that of Oystein Fluge and Olav Mella. They just got on with it. And while providing their oncology service at the same time.

 

[Utsikt]

Except that it does happen. To me the research programme that made the quantum shift to real science for ME/CFS was that of Oystein Fluge and Olav Mella. They just got on with it. And while providing their oncology service at the same time.

There are also multiple organisations that provide small grants for pilots that can be used for applying for larger grants, if money really is an issue.

 

[Jonathan Edwards]

One of the difficulties appears to be striking the right balance between collaboration, coordination and monopolistic control. Does anyone have any suggestions about how the proposal could be modified to reduce the risk of cancer of the latter?

I may be wrong but it seems to me that you need a clear separation between people supplying funding and people benefitting from funding. This proposal does not seem to address that. You need a funding body, or at least a steering committee who are not the researchers. At the moment government funding channels that through MRC and NIHR. NIHR was designed to bypass the rigour of MRC to suit political purposes, so I would keep well away from that. I keep coming back to the need for an independent ME/CFS funding committee under MRC that has been elected in a transparent way. All you really need then is to fund good projects sent in.

 

[Kitty]

I keep coming back to the need for an independent ME/CFS funding committee under MRC that has been elected in a transparent way.

That's an interesting idea. I wonder if a diverse committee that includes patient representative could be set up—similar to the Nice guideline group?

It might not even need a special initiative or new ringfenced funds to get underway. They could begin by assessing applications to current funding pots.

 

[Robert 1973]

I keep coming back to the need for an independent ME/CFS funding committee under MRC that has been elected in a transparent way. All you really need then is to fund good projects sent in.

I agree about the need for transparency. And a competent, well-informed committee without COIs would be great in theory. In practice, it might be tricky to get the right people involved, however they were chosen. Many patients’ and clinicians’ preferred choices may not coincide with ours.

As ever the problem is how to get more of the right people involved, whether that is in research, funding or advocacy – and how to create a framework that mitigates the risk of any one particular view having undue influence.

 

[wigglethemouse]

Wouldn't it be simpler and more equitable and possibly more effective to lobby for:

• government funding of the ME/CFS Biobank;

Government funding and expansion of the ME/CFS Biobank seems like a no brainer ask for establishing a research network in the UK. It has a very convincing story. It would free up ME Association funds for a PHD sponsorship or pilot research project. And the Biobank can get the might of the NIHR/MRC to advertise it's resource across UK research teams.

 

[Hutan]

We have split off the discussion of the rates of post-Covid-19 to this new thread:
Rates of ME/CFS following Covid-19

 

[Cinders66]

I welcome a solid proposal to the MRC after the MRC giving us the run around for years. However, It would only address decades of underinvestment if it a) asked for sizeable sums & b) included neuro/sensory/ cognitive research which a) is currently unspecified? b ) this doesn’t

The #Thereforme #fundtheplan campaign had called for £100m research funding over 5 years - £20m/ year & the previous APPG for long covid had asked for £100m / year. The MH MRC platform this new proposal is based was a £20m investment over 5 years. Over 5 years that =£4m per year. John McDonnell MP in his blog to the treasury stated fair funding for ME/CFS would be £18m / year. The longer the government and UKRI keep kicking the can and refusing ME biomedical research funding, which is at least 23 years now, the greater the need/ urgency and higher the amount of money required to match that. Let’s remember that in 1988 a minister of Parliament put in an early day motion signed by then now very famous Harriet Harman ,saying the situation of m.e was lamentable, young people were being driven to suicide, The hostility of the medical profession was unacceptable and could there be Parliamentary monitoring of research progress to make sure that this field didn’t languish.

A platform wouldn’t prevent other research being funded but the history of m.e funding is so bad, looking at the past it would be very likely that if we only ask for £20m and turn this one project, as our representatives did for MEGA/DecodeME, into THE focus , that this would be it. And its ,in monetary terms, a quite modest ask that doesn’t really, as claimed in the newspaper on the weekend, address years of underinvestment. The MRC are afaic doing their usual thing of offering nothing, dragging out despair, , so eventually a “something”/ anything project then seems/ gets presented as a big ask.

 

[BrightCandle]

And its ,in monetary terms, a quite modest ask that doesn’t really, as claimed in the newspaper on the weekend, address years of underinvestment. The MRC are afaic doing their usual thing of offering nothing, dragging out despair, , so eventually a “something”/ anything project then seems/ gets presented as a big ask.

We know from the USA example with the moonshot 1 billion funding for Long Covid once a number has been suggested that is what is going to happen. Many people had criticisms of that number given the lack of social support and many Long Covid sufferers in the US becoming homeless but the setting of a lowball number set the agenda. They will choose the lowball answer every single time, they wont be assessing themselves or doing a proper process to work out the right number they will just use the lowest of the answers given to them by the organisations.

 

[bobbler]

I welcome a solid proposal to the MRC after the MRC giving us the run around for years. However, It would only address decades of underinvestment if it a) asked for sizeable sums & b) included neuro/sensory/ cognitive research which a) is currently unspecified? b ) this doesn’t

The #Thereforme #fundtheplan campaign had called for £100m research funding over 5 years - £20m/ year & the previous APPG for long covid had asked for £100m / year. The MH MRC platform this new proposal is based was a £20m investment over 5 years. Over 5 years that =£4m per year. John McDonnell MP in his blog to the treasury stated fair funding for ME/CFS would be £18m / year. The longer the government and UKRI keep kicking the can and refusing ME biomedical research funding, which is at least 23 years now, the greater the need/ urgency and higher the amount of money required to match that. Let’s remember that in 1988 a minister of Parliament put in an early day motion signed by then now very famous Harriet Harman ,saying the situation of m.e was lamentable, young people were being driven to suicide, The hostility of the medical profession was unacceptable and could there be Parliamentary monitoring of research progress to make sure that this field didn’t languish.

A platform wouldn’t prevent other research being funded but the history of m.e funding is so bad, looking at the past it would be very likely that if we only ask for £20m and turn this one project, as our representatives did for MEGA/DecodeME, into THE focus , that this would be it. And its ,in monetary terms, a quite modest ask that doesn’t really, as claimed in the newspaper on the weekend, address years of underinvestment. The MRC are afaic doing their usual thing of offering nothing, dragging out despair, , so eventually a “something”/ anything project then seems/ gets presented as a big ask.

I agree but when I think of that suddenly being switched on then I think of what happened in the USA and what we saw with the Dutch? was it 'Zon' funding, and I think we need to learn from looking at these - @Utsikt mentioned Norway in this post: https://www.s4me.info/threads/uk-a-...se-research-platform.43778/page-5#post-604401

HOw do we get past the hump (if that is the right term) where there might be a catch 22 of without a promise those good mightn't be able to turn on plans to use such funding and build the structure needed, but as soon as it sounds like a metaphorical tap is being switched on somewhere I assume you get the usual stampede of a certain type chasing it with their hands out and making claims of entitlement.

And of course the catch 22 is probably that if you know where we need to be looking then a plan can be a roadmap to eg looking into phlangees and bipbops via x, y, z and pricing up what that would involve.

In my opinion bps has utterly proven over the decades the null hypothesis that they will always refuse to test (use the non-falsifiable which to me also means they aren't a science or medicine really) but the sophism seems to end up reigning and at best we all get distracted by a battle royale of people whose self-interest is thinly veiled as 'helping someone (who is another question)'


I don't think I'm saying anything enlightening here as most of us can picture the video playing out. I would really be interested in us all taking our thinking caps to this conundrum and how we can crack this particular one to find a potential way forward though?


I was interested that @Adrian mentioned Germany as somewhere some things have worked well or good things have happened.

I know that things are different all over the place not least due to culture, infrastructure and political situations and orthodoxies but would it be useful for us to have a page somehwere that is on this same topic but collects links to these different schemes or whatnot in different countries and can describe the good, bad and the catches to try and learn from them. And see if it sheds any light?