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

jnmaciuch said:
I suspect that all the people who made careers off of psychologizing us will be allowed to go back into the woodwork without apology or accountability. Or they’ll start new trajectories pushing CBT as a cost effective therapy for even “biological” illnesses.

There will be more fighting to be done, but at least we’ll have more people on our side who simply weren’t paying attention before there was a biological story.
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It's likely that not everyone who currently has an 'ME/CFS' diagnosis will actually have whatever problem the new biological explanation points to. Some will be left as a 'mysterious chronic fatigue' afterthought and they'll be great prey for the psychologisers - not only are all their tests normal but they don't even have what they thought they had!
 
I'd disagree that we simply have to wait for a definitive finding from research. Even "independent" and "arms-length" agencies listen to political signals and are not insulated from evolving political & social trends & understanding. Even if a lot of what is in the delivery plan isn't ideal there may be benefits flowing from it as the leaders of these agencies sense which way the winds are blowing. There is much that could be done to shape attitudes & obtain better care that is not being done, & there is also still too much misguided & counterproductive advocacy out there, although things have improved in recent years.

A lot also depends on individuals. A single sympathetic person in a high-level position can effect great change; IIRC the idea of the delivery plan only came about because of Javid's interest in ME. A concerted effort focussed on things that could bring about change that would propagate through systems, such as medical education, should IMHO also be a focus.

Far too many pwME are currently, today, falling through the cracks; neglected, dismissed or subjected to terrible care; malnourished; unable to receive care for entirely separate medical problems. The few physicians who were interested in helping the severe & very severe are retired or only taking on a few private patients with no-one to replace them. Alleviating that suffering - on a purely human level - should be the greatest priority regardless of any research results or non-results.
 
I was listening to Terry Pratchett’s Truckers today and this quote with seemed appropriate to some of the discussion here

He'd thought it would be difficult, learning to drive, learning how a lorry worked, learning to read, but they were, well, just tasks. You could see all the difficulties before you started. If you work at them long enough, then you were bound to succeed.

He'd been right. The difficult thing was going to be all the people.
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They’re fun children’s books about Nomes, little people in a human world, but also like so much Pratchett come with a message. As Wikipedia says “The main theme in the trilogy is the struggle of challenging society's accepted beliefs in the face of new information.”
 
Dear @Kiristar , thank you for providing some background information. My reading of this discussion, besides some other important political topics, is that most people commenting here would find this plan rather agreeable if it included a plan for something like patient cohorts under clinical care. You by no means have to defend anything, but do you perhaps know why this wasn't included at the current time, whether it could still be included in the plan or which hurdles have to be overcome to make something of that form possible? If not, do you perhaps know who best to talk to about this?

Both the Netherlands and Germany, which seem to be a motivation for this plan, seem to have something of that sort at some select places.
 
A reply to long covid kids from Ashley dalton containing statements regarding ME/CFS funding

Response from Ashley Dalton MP received 24th April 2025.
https://www.longcovidkids.org/post/reply-from-ashley-dalton-to-our-open-letter-dated-26th-march-2025

While no additional funding has been attached to the ME/CFS Delivery Plan at this time, additional funding to support those with ME/CFS may be secured in future Spending Review rounds. There is also a need to use current government and NHS funding better to improve patient outcomes and experiences.
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which I think is an utter p*** take. As I am writing in my letter to her, what was the point of three years of talks and consultations and a year to read patient views only to resume where the CMRC left off Afaic.
 
Jonathan Edwards said:
Which sadly says nothing much. The support for research seems to be helping researchers to write grant applications. I don't think Paul Morgan needs to be told how to write a great application. In other words whoever wrote 'response' this doesn't actually understand the problem.

But nothing new there.
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MRC rep. spent a whole hour at CMRC conference 2016 lecturing on how to write a good application. They've always blamed that. Sonya Chowdhury was given 10 minutes to present on the CMRC commissioned report into UK and global ME/CFs research funding.
 
Cinders66 said:
A reply to long covid kids from Ashley dalton containing statements regarding ME/CFS funding

Response from Ashley Dalton MP received 24th April 2025.
https://www.longcovidkids.org/post/reply-from-ashley-dalton-to-our-open-letter-dated-26th-march-2025
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which I think is an utter p*** take. As I am writing in my letter to her, what was the point of three years of talks and consultations and a year to read patient views only to resume where the CMRC left off Afaic.
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I think it also indicates that they feel that they can walk over this community because we’re passive in our organisations and ineffective in campaigning and making any noise about the injustice side of it. They know that they could do this and our orgs will be back at the table, smiling at whatever comes next.

I don’t really understand even what the "campaign part" of the platform proposal being released at this late stage into the public space was supposed to be.
There is a repeated messaging that the government isn’t going to put any money to the DHSC non delivery farce plan. so this is either the truthor they're doing this to reduce expectations and then go along with quite minimal gestures in an "a-ha surprise we're actually going to do something aren't you lucky", type reveal. Wiith a normal "campaign" there would be repeated pushing for signatures & publicity, if the intent was to apply pressure to get this platform into the DHSC delivery plan. however the charities involved haven't mentioned it above the initial posting.

The only Effect of making this public has been to seemingly quash the thereforme #fundtheplan campaign, which had made bold calls & been pretty much the only effective pressure applying Advocacy we’ve had for a long time. We’re facing, as far as I’m concerned, one of the biggest injustices any health community can face and we’re going into an mE awareness/action day with virtually no effective coordinated actions.
 
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To me the sad reality is that Dalton's letter make it crystal clear to what extent a group of professionals can carry on regardless not having any idea what they are doing and not even having any idea that they might have no idea what they are doing.

The same applies to research. In chronic disease research I can point to people who have spent 30 years spending tens of millions pounds achieving precisely nothing because they have no idea what they are doing. You can tell that from the start, yet these people tend to rise to the top of the food chain.

Fortunately went have some people in ME/CFS research who are not in this category!
 
Jonathan Edwards said:
To me the sad reality is that Dalton's letter make it crystal clear to what extent a group of professionals can carry on regardless not having any idea what they are doing and not even having any idea that they might have no idea what they are doing.

The same applies to research. In chronic disease research I can point to people who have spent 30 years spending tens of millions pounds achieving precisely nothing because they have no idea what they are doing. You can tell that from the start, yet these people tend to rise to the top of the food chain.

Fortunately went have some people in ME/CFS research who are not in this category!
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i think ME/CFS is one of the few potentially devasting common diseases that has made virtually no progress towards treatments over the past thirty years, nor has had much state investment despite being in this predicament. Dementia is having loads of extra investment to drive progress, it had particular focus in this announcement of the UKRI record funding this year
https://www.gov.uk/government/news/...-unveiled-to-boost-innovation-jobs-and-growth and MND (another illnesses I know with little treatment options but still comprehensive nhs care) which recently had £50m tax payers money, Afaics some of that was to further presumably well-researched-already treatments. We are totally back of the queue, low priority and this is injust , when so many who are severely affected are so because of the bad care of the NHS.
 
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Trish said:
I don't see the viewpoints of forum members as a whole as being entrenched. Criticism may be rather blunt at times, and we don't always agree, but that's part of exploring the benefits and pitfalls of any proposal.
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Entrenched is different its that there is no point in having a discussion as arguments are repeated and ignored.


Trish said:
Like others, I do think there is a real danger that whatever small and precious funding can be obtained could be misapplied, not through any fault of the people involved in this exercise, but through more powerful forces outside our control.
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I also worry about paralysis - we can't move forward and try things as they may go wrong which seems to be an argument that I am reading here. Sometimes we just need to try things to get change - change may not lead to a perfect result but doing nothing won't work.

In the end we can only have an influence by taking part in discussions and making the arguments to the right people - also by researchers, charities and patients putting together an argument to move things forward. If we don't try to change things and move things forward nothing will happen.
 
Hutan said:
I don't know Professor Holgate, unlike some here. I'm not sure if distance provides a better perspective or not.

But, based simply on what he has said, observing videos of presentations and what is recorded of his actions in minutes, I concluded quite a long time ago that he was part of the problem. And nothing I've seen since that time has convinced me otherwise. He supported Esther Crawley, he seemed to have an extremely paternalistic attitude to people with ME/CFS. He looks to be very much on the fence when it comes to BPS explanations of ME/CFS.

I know that Professor Holgate is supported by a number of people who have had dealings with him. But, I feel very uneasy about any reliance on him to present our case to the NIHR and MRC. I've written about this elsewhere, presenting some evidence. Even just the fact that 'Stephen Holgate has been trying to do that for twenty years' and largely failing suggests to me that other methods and people should be explored. (I do accept that it it is a difficult task, and that failure does not necessarily imply poor intent.)
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Having worked with Stephen on this he has been pushing very hard to try to improve the state of research for ME and working with others (people like Chris Ponting but also the charities and patients) to try to get change.
 
Adrian said:
I also worry about paralysis - we can't move forward and try things as they may go wrong which seems to be an argument that I am reading here. Sometimes we just need to try things to get change - change may not lead to a perfect result but doing nothing won't work.
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My worry isn’t that it isn’t going to work, but that it could get a worse result than nothing - like creating even more sluggish bureaucracy, or unintentionally providing lines of funding to the BPS lobby.
 
Jonathan Edwards said:
Actually we did find one. And it is working through. We will have a way forward when we have data that make the biological basis clear. It will come, I am confident.
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I wouldn't be at all confident. Its not about having data its about having people interested in taking the next steps and currently in the UK there are very few who are interested. Why would a researcher work on ME even with interesting data when they know they will struggle with grants and the supporting infrastructure around diagnosing patients, measuring changes, readily available samples simply isn't there.

Where as they can keep on doing the work they are doing with confidence of getting funding, publishing papers and progressing their career.
 
Utsikt said:
My worry isn’t that it isn’t going to work, but that it could get a worse result than nothing - like creating even more sluggish bureaucracy, or unintentionally providing lines of funding to the BPS lobby.
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That is exactly my point. We are being far too timid and worried - "but what if BPS stuff gets funded". If we always take that approach we won't push for more research money an nothing will change (in the UK - money is being spend elsewhere). In all the discussions I've had with the MRC, NIHR, others in government no one has been pushing, interested in or even receptive to the BPS lobby.

Its not creating bureaucracy its about creating platforms that enable research and getting researchers together to create critical mass. There are reasons why certain areas attract good researchers - often because they are well funded and they have access to good facilities that simplifies the task of doing the core research.
 
hotblack said:
  • But be ready to get behind good science when it comes
Because I agree with all that. But feel we need to work on the third bit given how long it takes to persuade politicians, funding bodies, medical organisations from GP practices through hospitals…
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But what will drive good science happening in this area. Without taking positive actions nothing will happen we need to be enabling systems where it will happen not waiting and hoping.
 
EndME said:
Dear @Kiristar , thank you for providing some background information. My reading of this discussion, besides some other important political topics, is that most people commenting here would find this plan rather agreeable if it included a plan for something like patient cohorts under clinical care. You by no means have to defend anything, but do you perhaps know why this wasn't included at the current time, whether it could still be included in the plan or which hurdles have to be overcome to make something of that form possible? If not, do you perhaps know who best to talk to about this?

Both the Netherlands and Germany, which seem to be a motivation for this plan, seem to have something of that sort at some select places.
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The hub proposal was modelled on one for mental health that the MRC has funded - they can't say but we don't have the structures that allow us to do something. The MRC is very very conservative as far as I can tell in the way it is organized it is basically a club for funding existing research groups who review each others proposals. They have no concept of strategy and identifying areas where research is needed and ensuring that this happens. If they were a company they would be bankrupt. Other research councils have different ways of working. Where the MRC have funded other things (such as the mental health funding or cancer funding) its due to external pushes from politicians who are in positions where they have to act. Otherwise they show no inclination to change and will fund legacy research areas (where breakthroughs have been made) rather than look to fund research in areas where it is needed.

Earlier proposals talk about patient cohorts and the importance of that (its part of having a research platform).
 
Adrian said:
That is exactly my point. We are being far too timid and worried - "but what if BPS stuff gets funded". If we always take that approach we won't push for more research money an nothing will change
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We can push for more research money through projects. Is this about trying to get earmarked funding?
Adrian said:
In all the discussions I've had with the MRC, NIHR, others in government no one has been pushing, interested in or even receptive to the BPS lobby.
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Norway got a BPS-led national competency service a few years after Fluge and Mella kickstarted the biomed angle and everyone were talking about how we need to take these patients seriously for once. They are still around and cause tremendous amounts of damage.

That’s why I’m cautious about asking for infrastructure that we frankly don’t have control over the staffing of.
 
Thank you Adrian for providing more information than most of us have about what is happening. I am pleased to hear you take a positive view of the aims of asking for a research platform. Do you have any idea of the likelihood of success? And if there is any chance of success, is there a more detailed description of how a research platform would work?

I think it's understandably hard for those of us on the outside to be confident anything good can come from this, as we've been so badly treated in the past. I don't lack confidence in the good efforts and intentions of you and others from the patient and carer side working on this, but I have little to no confidence there will be any push coming from the government or from inside the MRC.

DecodeME was the first really positive step the MRC has taken, and that took a lot of lobbying, I understand. Can something equally positive come in the near future?
 
Adrian said:
But what will drive good science happening in this area. Without taking positive actions nothing will happen we need to be enabling systems where it will happen not waiting and hoping.
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I disagree that nothing will happen. But I also agree we should take positive actions where appropriate.

Your point on career paths for researchers is I think really important. As is the wider question of what can we do to support and encourage science/research. I’ve been working on my MP. We all want to do what we can.

I do also think we need to be careful that we’re removing obstacles not putting new ones in place. And listen to people’s frustrations and concerns, from all the various angles/perspectives here. It’s a tricky balance.
 
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