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

[Adrian]

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.

The thing I would see is researchers feel entitled that the government would fund their research (they obviously think it is important). The government should have some notion of strategy - what are the major research problems going forward, do we have sufficient skills/resources in these future areas of importance and if not how is that changed. An organization like the MRC has been set up as a club which funds existing research groups assuming other existing research groups think that what they are doing is ok (or marking with mutual benefit)

We have a situation where post viral illness is affecting large amounts of people (count how you want) both in the UK and across the world. Within the UK there is an economic cost (care, healthcare, opportunity cost in loss of labour). For the UK as a country we miss out on the possibility of UK industry taking advantage of research etc. We also are more aware of pandemics and the need to plan.

So I would argue investing in ME and other post viral disease is necessary. And I would say doing so in an organized way to maximize resource reuse and skills development helps reduce cost. I'm not worried about the BPS lobby I don't think they are taken seriously by decision makers now -- there work has been shown to be poor quality. We also hopefully have signposting of areas from Decode.

 

[Adrian]

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

It had been mentioned to me as pulling in new researchers into the field

 

[rvallee]

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.

There is one way to make this work, but it would be politically difficult: not just no biopsychosocial, but a rejection of its terrible legacy, excluding anything with the stink of it. It excludes all the bad actors, and marks off all the failed areas as off-limits.

The legacy is indisputable, it has been a complete disaster. Not just professionally and humanely, but economically as well, which is all governments are interested in. The difficulty is that the NHS, and the medical profession, clearly prefers disaster with biopsychosocial, over achieving something good without. But this is the way. Perhaps the only way.

It would take convincing enough people to want to do good, instead of bad, and getting them to understand that no good will ever come out of the psychobehavioral ideology, that if they want to help, they need to choose science and patients over egos and failed interests.

 

[V.R.T.]

There is one way to make this work, but it would be politically difficult: not just no biopsychosocial, but a rejection of its terrible legacy, excluding anything with the stink of it. It excludes all the bad actors, and marks off all the failed areas as off-limits.

The legacy is indisputable, it has been a complete disaster. Not just professionally and humanely, but economically as well, which is all governments are interested in. The difficulty is that the NHS, and the medical profession, clearly prefers disaster with biopsychosocial, over achieving something good without. But this is the way. Perhaps the only way.

It would take convincing enough people to want to do good, instead of bad, and getting them to understand that no good will ever come out of the psychobehavioral ideology, that if they want to help, they need to choose science and patients over egos and failed interests.

This is where I think something like the kind of social media campaign I talked about before - short videos where the BPS people's recorded statements about pwME and LC that show their hypocrisy and contempt is juxtaposed with the lack of good evidence for their therapies, reports of harm caused, and if it emerges as predicted, scientific evidence of abnormal pathology in pwME - could come in.

If this mysterious evidence emerges this year or next, then perhaps a campaign like this could cut through to the public, the media and those in government bodies to hold the purse strings. Well timed, and separate from this campaign or #ThereforME or anything like that, it could lay bare the toxicity and harm of BPS at a crucial time.

Even without it it could be effective.

 

[Kitty]

I assume you get the usual stampede of a certain type chasing it with their hands out and making claims of entitlement.

A good funding panel would probably sort a lot of that out. Even if representatives of the usual suspects took part, they'd have to pull their socks up when confronted by serious researchers and informed patients.

If BPS-type research had been challenged as hard as biomedical research is, it'd never have cleared the first hurdle. Sick people with no science (or even academic) background can see how poor it is, how short it falls of what's expected. To a tough grants panel used to dissecting good bids it'd probably look like the kid who answers every exam question with drawings of ninja hamsters.

 

[Cinders66]

It is worth making the point that this is something that researchers and charities are pushing for, at the moment I can't see it happening without lots of pressure.

I was going to comment that we have seen money ringfenced before and it hasn't lead to more research - hence I would argue that something structural needs to be done.

Beyond the letter, what is to be the pressure? Does it have a chance, this late in the day, of influencing the DHSC delivery plan surely being finalised now?
the previous ring-fenced funding for m,e was a small one off, called a “small start” by sir Hugh parry. The MRC refused to sustain it, even though both charities requested it politely behind the scenes as Is their way& sir Peter Spencer called the previous £1,6m investment “tiny compared with need” . This is different to the Medical research council strategy for tax payer funding of HIV, where funding was afaiu dedicated & set aside for it until it was assessed that the field had built up enough momentum and interest to overcome stigma and flourish unaided. I think that @InitialConditions posted that ME/CFS ring-fenced funding did stimulate research interest https://www.s4me.info/threads/1-uk-2023-interim-delivery-plan-on-me-cfs-consultation-research.34688/

 

[Adrian]

Beyond the letter, what is to be the pressure? Does it have a chance, this late in the day, of influencing the DHSC delivery plan surely being finalised now?

Not sure a lot is still happening with the delivery plan and political pressure could lead to something. I think there is an issue in that the DHSC is more willing but the MRC is under a different ministry (Science and Tech) and hence different minister so I assume doesn't feel pressure.

the previous ring-fenced funding for m,e was a small one off, called a “small start” by sir Hugh parry. The MRC refused to sustain it, even though both charities requested it politely behind the scenes as Is their way& sir Peter Spencer called the previous £1,6m investment “tiny compared with need” .

It was small and it didn't lead to anything in terms of continuing research (for various reasons) hence the thought that ring fencing money is not enough but we need a structure that will grow research capacity in the area to lead to long term change.

I also think it would be a powerful signal from the MRC that ME research is being taken seriously and hence offers things like career paths for researchers (which is essential for young researchers). At the moment researchers with an interest are put off by things like bad reviewing.

 

[Utsikt]

At the moment researchers with an interest are put off by things like bad reviewing.

What do you mean by that?

 

[Adrian]

What do you mean by that?

I think one of the letters talked about bad reviewing, Once an area gets a reputation for being difficult people will get put off - why keep trying,

 

[Utsikt]

I think one of the letters talked about bad reviewing, Once an area gets a reputation for being difficult people will get put off - why keep trying,

Bad reviewing in terms of peer review?

 

[Adrian]

Bad reviewing in terms of peer review?

yes

 

[rvallee]

If BPS-type research had been challenged as hard as biomedical research is, it'd never have cleared the first hurdle. Sick people with no science (or even academic) background can see how poor it is, how short it falls of what's expected. To a tough grants panel used to dissecting good bids it'd probably look like the kid who answers every exam question with drawings of ninja hamsters.

Biopsychosocial research can never clear the hurdle of scientific standards, it's judged on completely different merits.

And while that's a huge weakness, so far it's been absurdly exploited to prop up the ideology. It's readily admitted that it can't meet those standards, so it should be subjected to no standards. Hence the arguments about how since ME/CFS is defined subjectively, then their own subjective opinions are just as good. There are no concerns over biases, open label trials, conflicts of interest, or any of the other standards that are upheld in scientific medicine. Pseudoscience for pseudo-illness is the exception most accept, though would never admit to it.

I don't know how we can get that through to health care professionals and research funding institutions. They seem oblivious to overruling a higher standard based on the lowest standards humanly possible.

Either it can meet scientific standards, and must be judged on those, or it just doesn't deserve a seat at the table. Oddly enough the consensus is that not only should it have a seat at the table, it should be boosted up and given veto powers to block the higher standards.

It's this odd mindset that blocks us more than anything. It's the same problem when science challenged religion, where one needs to be strongly proven, and the other needs to be strongly disproven, which is logically impossible, and oh so convenient. The exact same problem. Belief is still a dominant force in our civilization, even among professional classes.

 

[Kiristar]

The aim is for a vehicle that the government funders find palatable as they adamantly reject RFF. And a structure which has sufficient resources to build capacity, eg. through fellowships, international links, events etc. Isolated projects do not normally have bandwidth to do.
Its fundamentally about getting a sustained pipeline of prioritised biomedical research investment to attract new researchers into the field.
There would be a strong PPI role as with decode which mitigates concerns about bps infiltration and it's focused on the JLA patient priorities which are anyway all biomedical.

It's a consortium and the proposal emphasises interdisciplinary collaboration and data sharing so that is not a monopolistic approach.
Where something good already exists like the Biobank or genetics COfE of course you wouldn't reinvent the wheel to avoid wasting resources, you'd expand and build on it.
So this would provide the means to fund the Biobank rather than the MEA having to as it would build the infrastructure we need. It's that sort of issue this proposal aims to solve.

@bobbler asked about Germany.
I helped research the fact base for the Grand Challenge document, which this concept developed from. It analysed possible options based on what had been done internationally and in the UK in other fields.

Germany had never funded any ME research before approved a federal motion which led to a €15m "strategic investment" to encourage consortia based projects.
It recognised that there was insufficient capacity for adequate ME research as there were “only a few” institutions dealing with biomedical research .

The new funding opportunity was for joint interdisciplinary projects on 5 targeted research
questions :
● Disease triggers
● Disease prevention
● Subgroups and biomarkers
● Accelerating diagnosis
● Developing new, effective treatments and patient care
The requirements are:
● Projects should consist of four to six project participants / subprojects.
● Funding is available for universities and non-university research institutions as well
as private companies.
● At least one partner from a medical university must be involved.
● Ample experience in the relevant subject or disease areas.
● The participation of patients in the research process of the project.

I rather liked the Dutch "10 Year project" approach myself, but our research sector is just not set up to operate in that way so that was not a viable route.

 

[Jonathan Edwards]

Germany had never funded any ME research before approved a federal motion which led to a €15m "strategic investment" to encourage consortia based projects.

Isn't that a ring fenced funding call?
I don't see the advantage in restricting it to 'consortia' it just makes a huge admin headache for any independent creative researcher with a new idea.

It's a consortium and the proposal emphasises interdisciplinary collaboration and data sharing so that is not a monopolistic approach.

But who decides who gets the money and who is 'in the consortium'. What about the less good investigators who make a lot of noise? Do they get money and if so why?

 

[Utsikt]

There would be a strong PPI role as with decode which mitigates concerns about bps infiltration and it's focused on the JLA patient priorities which are anyway all biomedical.

How would it be ensured that the «right» people are put in positions of power? The BPS people will argue that a holistic approach is biomedical at its core, just that it also encompasses psychosocial factors.

Norway got a National Competency Service after years of lobbying, and they have been occupied by zealots of Wyller for 12 years and done tremendous amounts of harm.

 

[Kiristar]

How would it be ensured that the «right» people are put in positions of power? The BPS people will argue that a holistic approach is biomedical at its core, just that it also encompasses psychosocial factors.

Norway got a National Competency Service after years of lobbying, and they have been occupied by zealots of Wyller for 12 years and done tremendous amounts of harm.

The UK is not Norway.
Has decode been infiltrated by bps-ers?

 

[Jonathan Edwards]

The UK is not Norway.
Has decode been infiltrated by bps-ers?

I am not sure that the UK is so very different. Fluge and Mella have not been infiltrated either and they were doing very good work first. As far as can be judged the people who actually make decisions on medical research in the UK are not so different - hence the complaints about absurdly bad reviewing of projects. Nothing has been done to address that. If a project like this is going to work the system for refereeing at MRC and NIHR needs addressing.

I agree that there is momentum for a non-BPS package, following on from the NICE momentum, and that probably is different from Norway, but there is nothing very tangible to be sure of that.

 

[Utsikt]

The UK is not Norway.

What puts the UK in a position to avoid a BPS power grab?

 

[Kiristar]

What puts the UK in a position to avoid a BPS power grab?

-The NICE standard
- The supporting NICE evidence review shredded the quality of the BPS research and is a bulwhark.
-We have also had the tragic PFD proceedings for Maeve
- That has generated a high quantity of sympathetic media coverage from the Times in particular but also other main newspapers.
-We also have the ongoing government led Delivery Plan process which has acknowledged many of the injustices and problems.
- We have regular research output from Decode which reinforces the right underlying scientific messages

I genuinely do think we have reached a sea change in attitudes about what is acceptable here. I've experienced a noticeable change in my treatment from my formerly extremely cynical and unsupportive GP practice.

 

[Kitty]

What puts the UK in a position to avoid a BPS power grab?

No need, project completed and signed off. Embedded so thoroughly in every institution that it's captured most of the people who're likely to be shortlisted due to their "stature", "expertise", "ability to draw in talent" etc.