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

[Sasha]

Finding effective therapies may turn out to be hard

but to some extent I see the central goal as having the disease recognised socially for what it is. I think that will happen quite quickly.

I wonder what that process would look like and whether there's anything we might do to help it along. For years, our charities have been pushing the 'It's real, it's biological' angle with whatever the latest weak finding has been, and the media has picked it up, and repeated it in an endless cycle. It's been, 'Wolf! Wolf! Wolf!' for decades. If we finally get a solid finding, how will we cut through?

There might be two different answers to that, depending on whether we're talking about cutting through to society, who won't understand the significance of the finding because it will be too technical, or whether we're talking about the medical establishment, who might understand the significance (depending on the nature and strength of the finding) but mostly might not pay attention, or might try to find ways to save their behavioural empires.

Has there been a comparable situation in recent years that we can learn from? Is there anything we need to do to prepare?

 

[Utsikt]

or might try to find ways to save their behavioural empires.

I suspect they will move on to all of the other FNDs or whatever, and essentially doublethink away their involvement in the ME/CFS-atrocities.

They are not stupid. So they won’t keep fighting a war they’ve lost.

The problem for them is that when ME/CFS patients are cured, they will put forward the receipts and not let them live it down. It’s going to be worse than the HIV/AIDS protests.

At least that’s what I dream of..

 

[Jonathan Edwards]

If we finally get a solid finding, how will we cut through?

It just will.

Has there been a comparable situation in recent years that we can learn from?

Maybe AIDS? It turned out to be a real disease despite scepticism. And once that was known there was no turning back. I see no need to prepare anything, other than the shock of being believed.

 

[Sasha]

It just will.

It will be weird not to have to fight for it.

the shock of being believed.

I wonder if there'll also be a shock of believing...

 

[Kitty]

I wonder if there'll also be a shock of believing

There might be a shock of how routine it becomes, and how quickly.

Almost as if it had always been like that.

 

[jnmaciuch]

There might be a shock of how routine it becomes, and how quickly.

Almost as if it had always been like that.

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.

 

[Kitty]

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.

Oh totally. But luckily they left an enormous paper trail, so when we reach the future moment where the whole paradigm look so ridiculous people think it must be an urban myth, they can read it for themselves.

at least we’ll have more people on our side

I wonder if those "sides" might dissolve away quite quickly.

As unhelpful as the medical establishment has been, it probably can't be accused of not taking on useful developments. If a good trial shows a new treatment helps a substantial proportion of people with a disabling condition, it will tend to get adopted unless the risk/benefit calculation is unacceptable. It might not reach clinics nearly fast enough for patients' liking, but that's a different issue.

 

[Sean]

Or they’ll start new trajectories pushing CBT as a cost effective therapy for even “biological” illnesses.

That boat has long since sailed. They have been trying to drag diseases of all kinds into their bailiwick, portraying all medical conditions as having at least a secondary psychosomatic component/overlay. IIRC, that has been Chalder's focus in recent years.

All roads lead to psychosomatosis with this crowd. Especially when it doesn't. They simply cannot comprehend that they could be so wrong, and the horrendous consequences for patients.

 

[hotblack]

Maybe AIDS? It turned out to be a real disease despite scepticism. And once that was known there was no turning back. I see no need to prepare anything, other than the shock of being believed.

I’d say HIV/AIDS is a great example of what I’ve been trying to say. It took great discoveries to change things but also great amounts of lobbying and pressure by a vocal community. People worked together, learned from each other. Treatments and different drug combinations took time and effort. People moved to areas where support was better and specialists took things more seriously. Even now decades on there are still issues around attitudes, inequalities in what is available, people having to lobby for prep, etc. And people still die. The work still goes on. Thankfully progress has been made and I’d welcome a similar breakthrough. But it is far from a ‘one clever person turned up and then everyone lived happily ever after’ situation is it?

 

[Jonathan Edwards]

But it is far from a ‘one clever person turned up and then everyone lived happily ever after’ situation is it?

I don't think it is ever one clever person but once a biological basis is identified - for AIDS a virus - then things fall into place. I have often wondered about AIDS. There was a lot of lobbying and pressure in the USA but we didn't see much in the UK. Things changed pretty quickly once we knew there was a virus. Drugs took time to develop, but not that long.

I guess my main point in all this is that I do not see that much to be achieved trying to lobby for services or administrative structures until we have some data that turn around attitudes. I would like to know why the MRC is being so unhelpful but there is nothing very new about that. The MRC peer review system has always been very blinkered and inefficient in all fields. People are dumb, especially those who work their way to political prominence. With luck somebody new at the top will be a bit more enlightened.

 

[hotblack]

I do take the point, but the funding bodies are already set up and already funded, so we've no influence there.

But we do. Our politicians still decide on and change the funding and remits. Even on what happens in education which feeds into research. We have big spending reviews and long term plans for the NHS and ME/CFS coming up. I see every reason to be pushing for our cause.

There will be, but maybe we'd get the most benefit from our efforts by looking to that.

If a group made a breakthrough convincing enough that people started designing experiments or thinking about drug candidates, perhaps we should be thinking about the larger trials that would follow if it panned out.

We can help researchers make sure they're recruiting well defined cohorts, creating access for as broad a range of severities as possible, and identifying and measuring outcomes that would give them the evidence they need to convince doctors and healthcare systems.

That's probably where most of our power to effect change lies

Yes, it could well be.
I think I may have been misunderstanding people or been talking past each other a bit. Perhaps because of the context of this thread and the proposal made. Perhaps because like so many here changing medical thinking has proved impossible, I see science as the route to change, so want to do whatever I can to support it.

I guess my main point in all this is that I do not see that much to be achieved trying to lobby for services or administrative structures until we have some data that turn around attitudes. I would like to know why the MRC is being so unhelpful but there is nothing very new about that. The MRC peer review system has always been very blinkered and inefficient in all fields. People are dumb, especially those who work their way to political prominence. With luck somebody new at the top will be a bit more enlightened.

Yes I understand and appreciate your thoughts on this. It’s been really useful even if I’ve been a bit confused at times. I certainly don’t want the community to be pushing for things which make the situation worse. I will continue trying to encourage my MP to understand the needs of people with ME and the importance of research and need for changes in the NHS. And hope that there’s some fertile ground there when the science comes through with a seed to plant.

 

[V.R.T.]

I wonder if there'll also be a shock of believing...

I wonder if there will be some doctors who feel very upset at the thought they have been causing harm. Doctors like my GP, who talked me out of my certainty that what I was experiencing was not psychological. He did this in what he believed was my best interest, but in doing so he destroyed my life. How will doctors like him cope? Not the ones who go into denial or only following orders mindset but the ones who really see the harm.

There might be a shock of how routine it becomes, and how quickly.

Almost as if it had always been like that.

When I think about being believed, on a personal note, when I think about being treated well, I become quite angry. I was functional and mild before my gaslighting induced deterioration, and the idea of doctors being all nice and considerate when they have taken so much already by not believing me and getting me to disbelieve myself makes me furious. Even though it would be welcome progress for the community and very much needed, I can see myself struggling to reign in my anger, personally, when greeted with sympathetic and believing clinicians half a decade too late to save my functioning and the life I still had.

Of course an effective treatment would change that but I think I will still feel hard pressed to be too grateful to a medical system that robbed me of so many years.

 

[Sasha]

I wonder if there will be some doctors who feel very upset at the thought they have been causing harm. Doctors like my GP, who talked me out of my certainty that what I was experiencing was not psychological. He did this in what he believed was my best interest, but in doing so he destroyed my life. How will doctors like him cope? Not the ones who go into denial or only following orders mindset but the ones who really see the harm.

When I think about being believed, on a personal note, when I think about being treated well, I become quite angry.

I think there's going to be a lot of anger and distress flying about when the time comes, and I hope it can be harnessed into exposing the ongoing damage caused by the plague-like spread of the BPS approach to all sorts of other conditions.

Funnily enough, when I talked about the 'shock of believing', I meant the people leading the 'it's all in your heads' movement but it's interesting how other groups are being considered here. Anyone with a stake in the matter is going to feel a seismic shift.

 

[Utsikt]

I hope we’ll get a lot of «how the f*** have these people been able to dictate how we treat the patients?!» from society in general towards the BPS supporters.

Some kind of recognition of how the system is completely broken.

 

[V.R.T.]

Finding effective therapies may turn out to be hard but to some extent I see the central goal as having the disease recognised socially for what it is. I think that will happen quite quickly.

What factors might make it hard to find effective therapies as opposed to fairly simple as far as science goes?

Is it just a case of teasing out the exact mechanism proving tricky, or could it be that the disease doesn't respond as expected/hoped to drugs targeting what we believe are the crucial signals?

How likely do you think it is that the more positive outcome you have posited elsewhere will occur vs a long slog to find an effective therapy? Or is it impossible to say right now?

I think in this moment, when we as patients are being told by you and other researchers in the field that evidence will soon appear which will change everything and things could be very different very quickly, it is very hard to get a handle on what expectations we should be having.

To the second part of what you say, are you saying that the main challenge is getting evidence that creates belief and everything else should follow? I hope you are not saying that social recognition will be enough for us to rest on our laurels. Of course we cannot control science or what the cause of ME/CFS turns out to be, but surely the central goal is finding a treatment that will significantly improve symptoms. As Chris Ponting has said, this is one of life's worst diseases. Social recognition is surely a milestone on the way to effective treatment, not the end with effective treatment being a nice added bonus.

 

[V.R.T.]

might not reach clinics nearly fast enough for patients' liking, but that's a different issue.

This is something that concerns me. Both in terms of bureaucracy not recognising the need for nimble and accelerated trials/approval (of course within the parameters of safety and sanity), and more so, the creation for a few years of a two tiered treatment system, where people whose families or personal wealth make them able to afford treatment can return to some degree of life while everyone else is stuck waiting for the NHS bureaucracy to accept it has to pay for the damn drug...

In the latter scenario those of us lucky enough to go priviate would hopefully spend their efforts lobbying for universal access, but we have seen how people who recover from long covid often simply return to life and forget about the non recovered.

 

[Kitty]

I have often wondered about AIDS. There was a lot of lobbying and pressure in the USA but we didn't see much in the UK.

I think a lot of the early activism in the UK (and elsewhere, of course) was on the societal side. With a new, devastating, and difficult to understand disease, there was only so much ordinary people could achieve. One of those was educating people at risk about how to keep safe, and another was working against the prejudice and fear that sprang up.

Our politicians still decide on and change the funding and remits.

Not directly. Bodies like the MRC are funded by government, but their decision making is independent (and I imagine jealously guarded). Of course there are still political influences, but grants for things like ME/CFS are small details.

Governments don't always have as much power to effect change as we might think. For instance, a secretary of state could threaten to pull the MRC's funding altogether if they didn't like the choices being made, but the MRC knows that would leave a hole in the ground that they'd probably end up having to fill, at significant cost, with the same people anyway. It only makes sense to bring the bulldozers in if there's already been an earthquake.

I do think we might have an effect on the proposed PIP changes, as there's a weight of numbers behind that and some MPs are already convinced. But this—not so much.

 

[Kitty]

Funnily enough, when I talked about the 'shock of believing', I meant the people leading the 'it's all in your heads' movement but it's interesting how other groups are being considered here.

Yeah, I thought you meant people with ME/CFS because we're so used to doubting ourselves!

I doubt there'll be much shock anywhere else. The people with a direct interest have always known it was coming and started preparing years ago, and the majority of those working in the NHS and other healthcare systems will just switch to the new channel. It'll be yet another one of the new treatments and protocols that come down the line every so often, and they'll move the furniture round to accommodate it.

That's what I meant by "almost as if it had always been like that". It's not long before you start to forget the finance office used to be on a different floor.

 

[hotblack]

Governments don't always have as much power to effect change as we might think.

Sure, I understand this. I see it all as part of the environment though. And I’ve seen both the lack of ability to effect change that MPs have but also the significant change if you get the right person at the right time.

Let’s see. IMHO it’s worth a try. That’s all we can do.

 

[hotblack]

I doubt there'll be much shock anywhere else. The people with a direct interest have always known it was coming and started preparing years ago, and the majority of those working in the NHS and other healthcare systems will just switch to the new channel. It'll be yet another one of the new treatments and protocols that come down the line every so often, and they'll move the furniture round to accommodate it.

Agree. To me there is a relatively small group of people who have actively caused harm and been a barrier for years. Most have been indifferent and lacking in knowledge or awareness. And while it would be lovely to see recognition and some justice around the actions of the former group I don’t think it is worth putting the effort in. It’s the latter group that matter and who will be more easily changed and caught up in any tide of changes in prevailing attitudes.