MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

[Kitty]

But as for the rest of us, is it time for some kind of protest campaign?

I honestly don't see how it would do anything to change their minds. It sounds like one of those situations where you'd have to change the people. and if you can't change the people all you can do is look for ways to work round them. Other avenues of potential support.

What might change political will (even if not that of the MRC) is the possibility a disease modifying treatment has been identified—if the daratumumab trial works out, for instance. Then people could start making the economic case to politicians. The prospect of getting people back to work is the one thing might make them think ME/CFS and long Covid should be prioritised.

 

[V.R.T.]

What might change political will (even if not that of the MRC) is the possibility a disease modifying treatment has been identified—if the daratumumab trial works out, for instance.

Okay we can all hope for that, but if dara doesnt work, and jak stat inhibitors don't, we need more research funding to find those treatments.

We need the funding because we need treatments.

 

[duncan]

In terms of the MRC we have been trying to talk to the right people and there is no movement. It feels like there won't be unless there is a political will to change. Its not helped by big cuts of the research council budgets (coupled with large increase in university overheads I think things are very limited). I don't think there is a will to fund ME from the MRC perspective either.

I'm not from the UK, and I apologize should this come off as naive, but could you move to legislate change? Through the vote?

How large of voters' block might pwME and LC and PTLD and MS and Parkinsons, etc,, command? If they were somehow mustered together, coordinated?

I often wonder about this in the US, but our diseases have little agency since they are deemed discrete even amongst themselves.

 

[Kitty]

We need the funding because we need treatments.

Sure, I'm just thinking what levers we could use. We have zero influence on bodies like the MRC, but we can work on politicians. One potentially effective way to do that is presenting a case that aligns with their current concerns and policy directions.

 

[Jonathan Edwards]

So hopefully DecodeME and other recent developments are compelling enough.

It seems like getting physicians interested who could be reviewers is one way around this. And obviously hugely beneficial whether the MRC wakes up or not.

I have been encouraged this week that other academic groups will be interested now. The MRC people just do not seem to have the nous to see they have funded a great project that is worth a real Showcase. The meeting yesterday seems to have been set up on the basis that it would just include the ME/CFS research community to see if there was interest there (when of course everyone knew all about it and had been waiting patiently for results for 5 years). It is as if the MRC people are half asleep as much as anything.

The NIHR representative there admitted he didn't even know how to contact the ME/CFS research community. I made a suggestion that we might get a formal contact list made up which hopefully NIHR took on board.

The real problem is that these organisations exist to serve the interests of those already being funded (MRC) and current political agendas (NIHR), not medical science per se. But, as was pointed out at the meeting ME/CFS research could easily fit both if only people would wake up.

 

[V.R.T.]

Sure, I'm just thinking what levers we could use. We have zero influence on bodies like the MRC, but we can work on politicians. One potentially effective way to do that is presenting a case that aligns with their current concerns and policy directions.

Yeah to be clear, I was talking about influencing politicians through a protest campaign, so they put pressure on the MRC.

I don't know how we appeal to the Labour right, they seem very in thrall to the BPS ideology and closely aligned with Wessely. I think getting Green politicians onside could be very smart right now. If I find the time during my s4me break I will write to Zack Polanski. But I strongly suggest others do too, or other politicians who campaign on social justice issues and anti austerity platforms. After all, PACE was about reducing the benefits bill.

Anyway I posted I was taking a break in the other thread and I am, just some final thoughts!

 

[Kitty]

could you move to legislate change? Through the vote?

How large of voters' block might pwME and LC and PTLD and MS and Parkinsons, etc,, command?

It's a good thought, but the trouble is that we're several years out from a general election, and the UK has serious social, environmental and economic problems that affect millions of people. In electoral terms I'm not sure we'd even manage to get near the pond, let alone make a splash in it.

 

[Kitty]

But, as was pointed out at the meeting ME/CFS research could easily fit both if only people would wake up.

Do you think the scheme to improve people's chances of making competitive bids is potentially an opportunity? It's easy to be dismissive about initiatives like that, but in a different context I've seen them make a difference. They never reach the people furthest away, but they can enable some to rearrange their features so their faces fit better.

 

[Utsikt]

What I find surprising is the MRC have no notion of strategy in terms of looking at where money should be invested (i.e. looking for the research gaps and exciting areas). They rely on the research community putting in proposals and reviewing them which will tend to favour the existing groups. So when Stephen asked them about why ME wasn't considered strategic they seemed confused at the notion that they should have a strategy. This wasn't a surprise as it reflects other conversations that we have had with the MRC.

That sounds about right from my experience with funding bodies in unrelated fields in a different country. I think it’s universal.

 

[Kitty]

That sounds about right from my experience with funding bodies in unrelated fields in a different country.

To be honest the opposite can happen, and that's not good either. UK arts funding became very tied up with strategic priorities, and it changes the nature of the work without necessarily achieving what began as good intentions.

If you set a priority for work made by disabled people or that reaches excluded communities, for instance, you don't necessarily end up funding people who represent those communities or know how to do that work. You fund people who know how to get funding to do the work they always do, just bent slightly out of shape to give a tokenistic nod to the priorities. So even the quality of that work can suffer.

 

[Jonathan Edwards]

Do you think the scheme to improve people's chances of making competitive bids is potentially an opportunity? It's easy to be dismissive about initiatives like that, but in a different context I've seen them make a difference. They never reach the people furthest away, but they can enable some to rearrange their features so their faces fit better.

As far as I can see that scheme is just there to provide jobs for NIHR employees and increase the amount spent on bureaucracy. If grants coming in do not fit the assessors' idea of what a grant should be like then the assessors should change their ideas. Increasing the work for applicants by training them how to jump through hoops is not the answer.

NIHR has always funded what is politically attractive to fund and always also had a lot of window dressing claiming that it judges on quality.

 

[Utsikt]

To be honest the opposite can happen, and that's not good either. UK arts funding became very tied up with strategic priorities, and it changes the nature of the work without necessarily achieving what began as good intentions.

If you set a priority for work made by disabled people or that reaches excluded communities, for instance, you don't necessarily end up funding people who represent those communities or know how to do that work. You fund people who know how to get funding to do the work they always do, just bent slightly out of shape to give a tokenistic nod to the priorities. So even the quality of that work can suffer.

I can see how that would be a issue for fields like art.

Although the problem in medicine is that e.g. Wyller gets funding for quasi-immunological studies that are meant to disguise their trials of «behavioural experiments» on acute ENV patients. In this instance, funding bodies can say they fund biomed ME/CFS research even though it’s clearly terrible.

The biggest problem I observed was that the funding bodies never checked what the money was used for. There was a recent situation in Norway where Wyller got 19M NOK (£1.4M) for ME/CFS research that was only used for LC(PVF)-research. That kind of thing seems to be very common, I’ve seen some scathing internal reports from public funders..

 

[duncan]

It's a good thought, but the trouble is that we're several years out from a general election, and the UK has serious social, environmental and economic problems that affect millions of people. In electoral terms I'm not sure we'd even manage to get near the pond, let alone make a splash in it

Individual politicians are vilifying the sick regardless. At the very least, a coordinated entity from disparate communities of the sick could generate an effective response.

But perhaps even better, since as you've pointed out there's years before a general election, there's time for distinct groups of sick to congeal into potentially a meaningful and singular voting force. I think the idea's merit - should there be any - might prove cross-elastic across national borders.

However, I have no idea how many people we are talking about. It would not be limited to just the disabled, though - it would possibly include family and friends and maybe some disinterested individuals who simply have some empathy and decency in them. I don't know, but it could be significant.

Hard to initiate and work it into a reality when the constituency is so sick.

 

[rvallee]

I honestly don't see how it would do anything to change their minds. It sounds like one of those situations where you'd have to change the people. and if you can't change the people all you can do is look for ways to work round them. Other avenues of potential support.

What might change political will (even if not that of the MRC) is the possibility a disease modifying treatment has been identified—if the daratumumab trial works out, for instance. Then people could start making the economic case to politicians. The prospect of getting people back to work is the one thing might make them think ME/CFS and long Covid should be prioritised.

I think it's pretty clear that we have to stop waiting for governments to act. They won't, not until they can lazily reach out and take credit for it. Medical research for specific diseases is mostly funded by private donations, with government research being mostly reserved for basic research. This is what they keep telling us about ring-fenced funding being unusual. Which they absolutely should do because it's an unusual situation where we have to fight medicine and its decades of miserable failures as much as the illness.

Not that we have had much success with this so far, but if LC is not raising any interest for governments or the medical profession, it can at least serve as a vehicle for fund-raising. The LC community has to understand that they are on their own, stuck with us, and that no help is coming if they don't make it happen. We can't do this for ourselves, despite a bunch of bullshit over the last 5 years, the profile of ME/CFS has a legitimate illness has not changed one bit.

I can't see any other way out. Almost all funding from governments gets either wasted, cancelled or misused on pseudoscience anyway. Not all of it, but a solid 90%, and it all works extra slowly because almost no one in those institutions care. We have to work around both governments and medical institutions, because they aren't just useless here, they just act as blockers and will continue until we give them the answers they require just to start doing something.

 

[rvallee]

I'm not from the UK, and I apologize should this come off as naive, but could you move to legislate change? Through the vote?

How large of voters' block might pwME and LC and PTLD and MS and Parkinsons, etc,, command? If they were somehow mustered together, coordinated?

I often wonder about this in the US, but our diseases have little agency since they are deemed discrete even amongst themselves.

Not a chance. We are randomly distributed throughout the population, and so have zero political influence. Disability support and medical research are basically political poison, almost no one cares and it will never sway any election. It's seen as a cost, a loss, not an investment.

Not even elections where the rising cost of disability is made a major issue, it just gets distorted into the usual punching down bigotry that remake the issue into something else entirely. Humanity barely has the maturity of a bunch of 12 years old left alone, and our institutions aren't any better at it.

 

[rvallee]

That sounds about right from my experience with funding bodies in unrelated fields in a different country. I think it’s universal.

About the only exception to this, the only one I can see it worth lobbying governments for, is ARPA-H, the medical research program from the US department of defence. It's mirrored on DARPA, their equivalent for, well, un-healthing people, and it's built precisely to pursue the kinds of research that the traditional sclerotic institutions don't have the backbone for.

Not that I have any idea how to do that, but it's about the only government-funded program that could see an interest in it, with the NIH having made it ostentatiously clear they don't even want to solve or even think about problems like this.

Although when it comes to this kind of risk, this is usually left to the private charity sector. Governments just don't think long-term. Not even the administrative parts of it where it's part of the mission. The bastards clearly don't want us to get better.

 

[BrightCandle]

About the only exception to this, the only one I can see it worth lobbying governments for, is ARPA-H, the medical research program from the US department of defence. It's mirrored on DARPA, their equivalent for, well, un-healthing people, and it's built precisely to pursue the kinds of research that the traditional sclerotic institutions don't have the backbone for.

And so far ARPA-H hasn't done anything useful. It was in the meeting with the various researchers on Long Covid and it hadn't acted up to that point and still hasn't since. Its all potential at the moment its got not track record, I wouldn't bet on it doing anything useful at this point it seems to be a political tool like the others.

 

[duncan]

Not a chance. We are randomly distributed throughout the population, and so have zero political influence. Disability support and medical research are basically political poison, almost no one cares and it will never sway any election. It's seen as a cost, a loss, not an investment.

Sure, but it's not as if there isn't precedent. AIDS activists did it at a time their illness was taboo because of its own stigma. Of course, death was the ultimate advocate and helped immensely since it was politically garish to see so many dying. But that stigma was huge at the time, and only seems smaller in the rearview mirror.

There's something to be said to be part of a movement vs just another victim of a vicious, transactional establishment, even if the odds are that the movement will fail.

Perhaps the idea is better suited to the US. There the numbers of a coalition of disenfranchised sick alone could be in the millions. With Midterms a year away, that might matter even with the combined friction of insurance concerns and embedded cultural hostility toward the chronically ill.

 

[Robert 1973]

She is from the quadram inst. (Simon Carding) and I think they are trying to do some trial (can't remember what on)

I’ve not kept up with developments but weren’t they doing FMT trials?

I suspect it’s better to look for other sources of funding (philanthropy, industry (VCs)).

I would be surprised if crowdfunding and combined charities couldn’t raise most of funds, or at least enough to get it started if it were broken down into modules.

Again, I’ve not managed to keep up with developments but does the MEA still have a large fund waiting to be spent?

 

[Kitty]

does the MEA still have a large fund waiting to be spent?

I think so. And it's hard to see why SequenceME isn't the best UK candidate we've seen in probably two decades.