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

[hotblack]

I think Kitty makes a really good point.

But equally we do need to find ways of supporting good researchers. And how we best do that remains a question to me.

Relying upon obstinate sods is not enough, it limits the pool of available talent because not everyone with a sharp and creative mind is that way inclined. We’ve had to do it because there has been no choice, that doesn’t mean we can’t have better options in the future.

And part of this we should not forget is how we can support patients being involved. Because up until now it’s been a lucky few of us to live in the right place or be well enough. That’s not good enough.

We need more opportunities for researchers and more opportunities for patients. How do we best support those aims? Maybe I’ll start a new thread with that question.

 

[Kiristar]

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.

To answer your question, yes cohorts were included in the longer document that this proposal summarised..That's the sort of thing that is referred to for brevity as "research infrastructure"

It also took pains to emphasise that PPI must be integral and mentioned the decode and the Dutch project as positive exemplars. It did made very clear that research funded must be biomedical and emphasised that a robust approval process involving PPI must be developed.

This proposal is only a summary and also is not meant to be a plan written in stone but intended to be the stimulus which would start a process of discussions and co-development of more detailed level plans and eventual application. Decode took years in the making. This is only just at the start block and it's totally accepted wider stakeholder engagement would be needed.

It's not possible to directly force change to the government peer review process. But this proposal could over time indirectly start to address the reviewer issue by creating more biomedical researchers funded by government. They could then get added to their list of expert peer reviewers. In order to get onto the peer reviewing list you have to have previously been funded by them, so as it stands it's catch 22.

But the funder feedback when it gets challenged on peer review is always that they just aren't getting the applications in in the first place.

 

[Cinders66]

This proposal is only a summary and also is not meant to be a plan written in stone but intended to be the stimulus which would start a process of discussions and co-development of more detailed level plans and eventual application. Decode took years in the making. This is only just at the start block and it's totally accepted wider stakeholder engagement would be needed.

It's

But the funder feedback when it gets challenged on peer review is always that they just aren't getting the applications in in the first place.

However, we simply don’t have time for another slow burner and this plan was called the delivery plan so, expectations from a patient group stagmatised , harmed and left on the shelf decades, then waiting on three years of talks isn't for.....yet more talks.. This is presented as something that could take years to set up , which I’m sure the MRC would absolutely love but patients who’ve been terribly sick will not.

The benefit of ring-fenced funding is that it is an easy and quick rapid intervention. Sajid Javid said , when he gave evidence at the Covid inquiry, that he intervened and got long Covid research funding doubled, presumably he was referring to the two funding calls that LC had, which ended up being £40 million. This is something the health secretary can just do at the snap of the fingers And this is partly why this has been rallied around by activists because it could deliver quick results. For long Covid, within nine months one funding call , within another year , they put another funding call.
Now the government is saying to everyone who writes to them about long Covid, do not fear we take this very seriously, we’ve put in dedicated funding which set up a portfolio of £57 million and clinical trials!

There could still be stipulations for m.e that these had to be research applications that fell within the PSP priorities, preferably beyond the top 10 because that doesn’t include cognitive dysfunction, which is crippling for severe me, so there’s no reason why It should go to biopsychosocial studies. There’s nothing to stop them doing exactly this type of stimulus for m.e, except I think that they know that if they do, they’re open to questions of why didn’t they do it before so they prefer we suffer vs them doing the decent thing .

 

[Kiristar]

For clarity...

I said that Decode took years to set up (ie was a process with stages of consultation). Not that I believe this proposal would take anywhere near that long. I was merely reassuring people that it's a process and that wider patient engagement would be part of that, which was flagged as a concern in earlier replies. Apologies for any misunderstanding.

This proposal is not part of the Delivery plan but is an attempt to get the government to address it's lack of actions in the research chapter.

The government funders have already categorically ruled out Ring fenced funding as unacceptable so it is simply not on the table, no matter how popular it is with us patients.

Their position is that it has been tried before (albeit a long time ago) and did not result any uplift in applications afterwards. So quick and easy (with political will) yes, but short term and not exactly effective. I was surprised when I first heard this.

It comes back to the same point that there aren't the researchers to start with as the sector is basically nascent, so a proposal also needs to incorporate capacity building and a sustained not a one off funding stream.

Eta-
This is also modeled on a vehicle they recently funded so in theory at least harder for them to turn down. Getting the top tier political will is of course a big challenge

 

[hotblack]

Thanks for the additional detail @Kiristar it and the rest of your work on this are very much appreciated

 

[Cinders66]

For clarity...

I said that Decode took years to set up (ie was a process with stages of consultation). Not that I believe this proposal would take anywhere near that long. I was merely reassuring people that it's a process and that wider patient engagement would be part of that, which was flagged as a concern in earlier replies. Apologies for any misunderstanding.

This proposal is not part of the Delivery plan but is an attempt to get the government to address it's lack of actions in the research chapter.

The government funders have already categorically ruled out Ring fenced funding as unacceptable so it is simply not on the table, no matter how popular it is with us patients.

Their position is that it has been tried before (albeit a long time ago) and did not result any uplift in applications afterwards. So quick and easy (with political will) yes, but short term and not exactly effective. I was surprised when I first heard this.

It comes back to the same point that there aren't the researchers to start with as the sector is basically nascent, so a proposal also needs to incorporate capacity building and a sustained not a one off funding stream.

Eta-
This is also modeled on a vehicle they recently funded so in theory at least harder for them to turn down. Getting the top tier political will is of course a big challenge

Thanks for your reply, the delivery plan has to deliver something on reSearch more than vague waffle about guiding research on how to do better applications.
my response is partly to you & then part just a broader statement, so don't take my frustration tone personally.

I'm pretty sure someone did a FOi and it showed that ME ring-fence funding, which was only a year, did uplift applications and trying something for a year and then declaring failure is lame. It's not a reasonable position as we're now in a very different time, the previous dabbing the toes in water was in 2012, we are now in a time where post v illness is now on the map, it now has belief/ sexiness (and it should've of course at that time as well but it clearly didn't) and therefore it might be more successful, particularly if combined with long Covid . There has been no co ordinated campaigns for ring fence funding, except the #Thereforme campaign, so it hasn't been well tried for, bar a simple "we asked and they said no" which is what the m.e association have accepted for years. Presumably the MRC said no to dementia funds rising which is why their organisations led a campaign / petition to get their funding doubled.. I have found that the ALS campaign for £50m that now fuels their research effort was initially refused, overturned a few weeks later https://alsnewstoday.com/news/united-to-end-mnd-disappointed-no-uk-government-funding-plea/

Campaigning has to be a central part of driving change, it's used by all other illnesses. I saw a tweet from Parkinson's UK for a conference for people who want to get involved in campaigning for better Parkinson services. We have nothing similar led by ME charities? It is particularly required in situations of stubborn beliefs, ego protection, status quo defending. The charities will come out of this saying as normal we really tried behind-the-scenes but it didn’t work, but perhaps just trying to negotiate doesn’t work ? Especially with bad faith actors….. If just asking & negotiating was enough to bring change then why would anyone ever campaign?

If there was genuine, sincere desire to serve this illness & languishing invalids in dark rooms, the ME platform on the table wouldn’t just be lapped up but would've been developed already. However , it seems the funders have wanted us to fill empty time with a three-year farce of talks where they propose to change *nothing* in any meaningful way as it's conclusion, at the same time as dedicated funding calls and clinical trials programs for long Covid , with in many ways the same Symptoms, an intolerable position.

I don't agree there aren't any researchers. Danny Altman, Carl Morton, j Newton before she retired, have been keen to do bigger projects... + the centre that invest in m.e funds. Karl Morton was talking on Twitter about something in the blood, which is considered by many to be a major target for a research, and was saying he would love to do more on this but he's restricted by his funding from patients only being something like £50,000 a year, whereas to do the research he needs, I can't remember around £300,000 or £500,000 , so people who really want to do important research are there but know they won't get the money from the MRC. I also think that ring-fence funding would attract people & interest into the field. That's surely the purpose of it? and why the MRC used it to Drive interest in HIV and build up a field when it was a stigmatised illness that doctors didn't want to touch.

In terms of top- tier political support, you would think the charities would have driving support for this proposal as the primary goal over this awareness week or at least trying to ensure that some funding was put behind the DHSC "delivery" plan but the charities seem to have told MP's the members of the APPG , that their main duty was to help with myth busting - - so I question how committed our charities are to driving anything soon for research either. I find it ironic that the MEA chose to post a tiny clip of bob geldolf supporting the m.e cause, when I’ve always thought, God if only we had a celebrity or a bob figure calling out the suffering, punching the table and demanding funding for m.e instead of what we had.
I think most on the inside lane, have settled into waiting on decode m.e,.

edited to acknowledge the #Thereforme campaign

 

[Jonathan Edwards]

Genetic studies, unlike muscle studies or brain studies won't show damage either, which is a topic Everyone seem to want to avoid in the UK for obvious reasons, when a harmful treatment has been central to the NHS approach.

I sympathise with your point of view, @Cinders66,but I disagree on this.

I think the genetics may tells precisely where the 'damage' is, together with an indication that it may not so much be damage as something reversible, which must surely be good news. It may also tell us why we have not been able to find it up until now.

 

[Kitty]

I think most on the inside lane, have settled into waiting on decode m.e,.

I think the genetics may tells precisely where the 'damage' is

This being in the wind is almost certainly the reason the charities are holding back.

They know we could have important insights within months, so they're unlikely to commit scant resources to campaigns that could rapidly be overtaken by events.

It's possible nothing will be found in the genetics, but what if it is? What if it brings in a field of research that hasn't so far been involved, who could do groundwork that doesn't even need external funding? Or it does need funding, but applications would carry more weight with the MRC simply by having their names on them?

People with ME/CFS would then face a long and frustrating wait for more news, but that's probably a better time to make plans. We'll at least have some idea which direction that wind's coming from.

 

[Kiristar]

Thanks for your reply, the delivery plan has to deliver something on reSearch more than vague waffle about guiding research on how to do better applications.
my response is partly to you & then part just a broader statement, so don't take my frustration tone personally.

I'm pretty sure someone did a FOi and it showed that ME ring-fence funding, which was only a year, did uplift applications and trying something for a year and then declaring failure is lame. It's not a reasonable position as we're now in a very different time, the previous dabbing the toes in water was in 2012, we are now in a time where post v illness is now on the map, it now has belief/ sexiness (and it should've of course at that time as well but it clearly didn't) and therefore it might be more successful, particularly if combined with long Covid . There has been no co ordinated campaigns for ring fence funding, except the #Thereforme campaign, so it hasn't been well tried for, bar a simple "we asked and they said no" which is what the m.e association have accepted for years. Presumably the MRC said no to dementia funds rising which is why their organisations led a campaign / petition to get their funding doubled.. I have found that the ALS campaign for £50m that now fuels their research effort was initially refused, overturned a few weeks later https://alsnewstoday.com/news/united-to-end-mnd-disappointed-no-uk-government-funding-plea/

Campaigning has to be a central part of driving change, it's used by all other illnesses. I saw a tweet from Parkinson's UK for a conference for people who want to get involved in campaigning for better Parkinson services. We have nothing similar led by ME charities? It is particularly required in situations of stubborn beliefs, ego protection, status quo defending. The charities will come out of this saying as normal we really tried behind-the-scenes but it didn’t work, but perhaps just trying to negotiate doesn’t work ? Especially with bad faith actors….. If just asking & negotiating was enough to bring change then why would anyone ever campaign?

If there was genuine, sincere desire to serve this illness & languishing invalids in dark rooms, the ME platform on the table wouldn’t just be lapped up but would've been developed already. However , it seems the funders have wanted us to fill empty time with a three-year farce of talks where they propose to change *nothing* in any meaningful way as it's conclusion, at the same time as dedicated funding calls and clinical trials programs for long Covid , with in many ways the same Symptoms, an intolerable position.

I don't agree there aren't any researchers. Danny Altman, Carl Morton, j Newton before she retired, have been keen to do bigger projects... + the centre that invest in m.e funds. Karl Morton was talking on Twitter about something in the blood, which is considered by many to be a major target for a research, and was saying he would love to do more on this but he's restricted by his funding from patients only being something like £50,000 a year, whereas to do the research he needs, I can't remember around £300,000 or £500,000 , so people who really want to do important research are there but know they won't get the money from the MRC. I also think that ring-fence funding would attract people & interest into the field. That's surely the purpose of it? and why the MRC used it to Drive interest in HIV and build up a field when it was a stigmatised illness that doctors didn't want to touch.

In terms of top- tier political support, you would think the charities would have driving support for this proposal as the primary goal over this awareness week or at least trying to ensure that some funding was put behind the DHSC "delivery" plan but the charities seem to have told MP's the members of the APPG , that their main duty was to help with myth busting - - so I question how committed our charities are to driving anything soon for research either. I find it ironic that the MEA chose to post a tiny clip of bob geldolf supporting the m.e cause, when I’ve always thought, God if only we had a celebrity or a bob figure calling out the suffering, punching the table and demanding funding for m.e instead of what we had.
I think most on the inside lane, have settled into waiting on decode m.e,.

edited to acknowledge the #Thereforme campaign

I totally get and share your frustration.

But tbh, I personally would be very flexible on what form the funding takes and definitely wouldn't be objecting to RFF or a sustained pipeline. Just the latter would be bigger and more strategic in approach so for me that's so much the better as it would also fund research infrastructure like the ME Biobank and cohort development and the things researchers say they need to be effective. I feel a sustained call would help the sector get properly on the map and establish itself - and help break barriers like the review process by adding more MRC funder biomedical reviewers.

I'd be very interested to see the calls foi evidence if it's still here maybe someone could tag me? I was told that it did fund six papers during the call but importantly no longer term uplift in application or researchers after the closure of the call, which is how I would define effectiveness - did the sector grow? Happy to be corrected if I've been misinformed.

I didn't claim we don't have any researchers at all. To clarify, my meaning was that, in the context of a healthy research sector we should have, these numbers (of papers and researchers) are relatively very small, ie. we don't have the (volume of) researchers we need.

How many papers are published each year on comparable non stigmatised diseases I wonder, how many research teams do they have? Certainly in terms of government funds disbursed over that time frame we're at a fraction of where we should be.

The ME sector isn't growing, when it should be after the pandemic. Then when I hear first hand those very few researchers actively telling their juniors NOT to enter the ME field it makes me realise how precarious and on a cliffedge the sector is in the UK.

I would just highlight that the people you mention Karl and Danny are both signatories on both this proposal and the accompanying letter protesting at the review issue and lack of funding.

I think you are right about the fact that awaiting Decode results is causing a hiatus. But one way or another, we have to crack this.

Let's hope Decode helps break that deadlock, but I worry it's ended up landing too late in the political process. I don't think the Delivery Plan publication date will slip further so the political endgame is happening right now as the different government departments all negotiate it out internally.

Edit - removed accidental text duplication.

 

[hotblack]

I don't think the Delivery Plan publication date will slip further so the political endgame is happening right now as the different government departments all negotiate it out internally.

Exactly this. The political context and timing should not be underestimated.

 

[Kitty]

I don't think the Delivery Plan publication date will slip further so the political endgame is happening right now as the different government departments all negotiate it out internally.

It's possible sections of the delivery plan could end up being irrelevant. That might have been influencing events to some extent.

I could be wrong, but once medicine is presented with potential ways to treat ME/CFS it may just take ownership of it.

If it slipped into the ranks of "proper diseases", all that would be needed (ha!) is a functioning health service where clinicians can work out the best way to look after people.

Government delivery plans tend to get in the way of that kind of thing, because you don't want prefabricated models. You want regional teams with different approaches to see what works best.

 

[Jonathan Edwards]

I was told that it did fund six papers during the call but importantly no longer term uplift in application or researchers after the closure of the call, which is how I would define effectiveness - did the sector grow? Happy to be corrected if I've been misinformed.

I think the problem with the original ring-fenced ME/CFS call in 2012 was that it was handed out to embedded MRC researchers who saw it as a useful pot-boiler to add to their research programme but who had no real commitment to ME/CFS. The MRC used its usual inward-looking policy to stifle its own venture. I am not particularly in favour of ring fencing but I think the limiting factor here is the inability of the MRC to look beyond the tunnel vision of its own favoured researchers.

 

[Jonathan Edwards]

Then when I hear first hand those very few researchers actively telling their juniors NOT to enter the ME field it makes me realise how precarious and on a cliffedge the sector is in the UK.

I am wondering who on earth would say that?
Commitment to medical research worth having goes beyond that sort of talk.

 

[Adrian]

I am wondering who on earth would say that?
Commitment to medical research worth having goes beyond that sort of talk.

This is from the letter that various researchers wrote Microsoft Word - Letter from ME Researchers to Funders

Because of its historically low funding, we cannot, in good conscience, today recommend to early career researchers (ECRs) that they pursue a career in ME/CFS research. There are currently only 15 UK research groups undertaking ME/CFS research (link). The talent pool has dried up: there are only two ECR fellows researching ME/CFS in the UK. Reluctantly, without funding, researchers and their groups will need to refocus on other diseases.

There are of course many different areas worth medical research so recommending those areas where research funding can be found and hence a career build seems like the right thing to do. Researchers need job security and a decent wage etc - How could anyone recommend working in an area where it seems unlikely that they can get research funding and hence progress their careers?

 

[Jonathan Edwards]

How could anyone recommend working in an area where it seems unlikely that they can get research funding and hence progress their careers?

Anyone with a true sense of purpose would do that, Adrian.
That quote from the letter seems to me to just be posturing for the sake of raising an argument.
Chris Ponting got involved because he was motivated, despite the lack of funding, as have all the other good people - Luis and Eliana, Maureen Hanson, Ron Davis. If you treat this problem as just a job to do you will get nowhere.

I struggled throughout my career to solve unfashionable problems. It is hard, but if you don't do that, what is the point? You might as well market toothpaste. You get a company car then.

 

[Sasha]

Anyone with a true sense of purpose would do that, Adrian.
That quote from the letter seems to me to just be posturing for the sake of raising an argument.
Chris Ponting got involved because he was motivated, despite the lack of funding, as have all the other good people - Luis and Eliana, Maureen Hanson, Ron Davis. If you treat this problem as just a job to do you will get nowhere.

I struggled throughout my career to solve unfashionable problems. It is hard, but if you don't do that, what is the point? You might as well market toothpaste. You get a company car then.

But we're talking about early-career researchers, who live from one short-term research contract to contract, some as short as six months. They can lose their scientific careers while waiting for a funding decision. They have to pay rent, buy food. All the people you mention, including yourself, are/were staff, on long-term or permanent contracts.

 

[V.R.T.]

Anyone with a true sense of purpose would do that, Adrian.
That quote from the letter seems to me to just be posturing for the sake of raising an argument.
Chris Ponting got involved because he was motivated, despite the lack of funding, as have all the other good people - Luis and Eliana, Maureen Hanson, Ron Davis. If you treat this problem as just a job to do you will get nowhere.

I struggled throughout my career to solve unfashionable problems. It is hard, but if you don't do that, what is the point? You might as well market toothpaste. You get a company car then.

I'm certain I saw Chris Ponting say in an interview last year (I thought with Jennie Jaques or David Tuller but I've scanned the transcripts for both and can't find it) that he can't currently recommend that young researchers under his tutelage come into the field of ME research for precicely the reasons stated in this thread, and also speak about how he it wasn't until he was relatively far along and secure in his career that he saw he had the chance to do something about ME/CFS.

Edit: Having watched in the link below, his point is a little more nuanced. He says he has to warn people who are interested that it will not pay the bills and you can't make a career out of ME research at present.

 

[oldtimer]

I'm certain I saw Chris Ponting say in an interview last year (I thought with Jennie Jaques or David Tuller but I've scanned the transcripts for both and can't find it) that he can't currently recommend that young researchers under his tutelage come into the field of ME research for precicely the reasons stated in this thread, and also speak about how he it wasn't until he was relatively far along and secure in his career that he saw he had the chance to do something about ME/CFS.

I remember this too. I think it was with David Tuller.
Edit: Found it - from about 4.40 to 5.52.

 

[Jonathan Edwards]

The comment I was originally referring to was this:
"Then when I hear first hand those very few researchers actively telling their juniors NOT to enter the ME field it makes me realise how precarious and on a cliffedge the sector is in the UK."

Edit: Having watched in the link below, his point is a little more nuanced. He says he has to warn people who are interested that it will not pay the bills and you can't make a career out of ME research at present.

I haven't watched it but what Chris says in public as part of trying to persuade funders is a very different thing from what he says to his juniors in private. I don't believe he has ever told a junior NOT to enter the ME field. Presumably they are already in it if they are his juniors!

We all make these political/philosophical points about how hard it is to make a living out of worthwhile research. But we are looking for people who are not put off by things like that.

 

[Kitty]

But we're talking about early-career researchers, who live from one short-term research contract to contract, some as short as six months. They can lose their scientific careers while waiting for a funding decision. They have to pay rent, buy food.

That's just the way the world is, surely. In my field there are early career actors, musicians, dancers, producers, designers, directors...all in the same position. The hours are long, the work's hard, the annual pay often doesn't even add up to minimum wage, and the training is among the longest of any career.

Do people advise youngsters against it? Definitely. Is there a shortage of entrants? Nope.

They have ambitions, they know they've the potential to be good at it and would be frustrated doing something else. The fact that it's such a hard choice is a really effective way of weeding out the not-very-committed and the not-very-good.