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

I haven't. My GP office is as dismissive as ever, spoke to them a couple of weeks ago and its still the same old psychobabble nonsense out of them. Not NICE compliant, doesn't care and will never read the guidance. All my complaints dismissed, all my escalations of those complaints to the ICB dismissed. NHS England was ended before they looked into my complaints about this so I guess I have to send them to the department of health now, but lets be honest they aren't going to do anything either. No consequences for the abusive of patients and my GP wont change from an optional training that they wouldn't even consider, they wont be changed by a mandatory training. I wish I could just have a different GP but alas nothing else in my area, stuck with the abusers.

 

It has been nearly four years since the NICE guidelines, and recent surveys shows that barely any have implemented them. ME/CFS patients still die of malnutrition in the UK. There is currently a patient that is being denied the necessary help with feeding to be able to stay at home.

In 2015, the then prime minister of Norway, Erna Solberg, said the following:

Norwegian scientists have been at the vanguard of biomedical research into ME/CFS for more than a decade. The Norwegian ME Association has more than 7000 members with a population of 5.5 millions.

I understand that things are moving in the right direction in the UK. But the key question is: have they moved far enough for proposals to be reasonably safe from interference from the BPS-lobby?

I think not.

 

Yes I don’t think we have even with the good/better people moved out of the bps default at all yet. And as soon as anyone tries to help then it becomes clear how deep the roots are in that any service they might offer to ill people comes up with a big gap specifically for pwme and inaccessible hoops blocking to even services that are still fully assuming it’s ‘fatigue’

most who aren’t themselves ‘the bps’ don’t even know/realise they are being in that paradigm because it has been so built in as the default for everything. And people are doing it thinking they are being kind and this is the new etc.

In fact it feels it has gone backwards over the last three years.

Some of which I put down to bacme, and then there is also that it must be the default for all the support stuff and how everyone who is allied or isn’t health to offer support stuff (particularly where it isn’t one of a specific named illness like eg cancer, but I think the issue is other illnesses have their own offerings for these and the generic offerings filling the gap for ‘the rest’ of the illnesses are bps probably because of the MUS type model drifting through in its ideology). In fact the clinic local to me has gone more bacme and brought in the old literature when it didn’t use it before.

it would be really worrying if people weren’t aware of this and how most laypersons aren’t aware it is what it is at all so if they are on a committee and there old colleague seems a nice sort suggesting this holistic thing they won’t recognise it as the ‘get’ and ‘bps’

I’m interested and hopeful if those closer to eg the research funding end are saying that people have wised up there and see through stuff because that is reassuring if so, and sounds not like an assumption.

 

I think we will get the change needed. It is in the pipeline. But as to who decides who gets funded just at present looks to me to still be up in the air.

I appreciate the hard work of those trying to push for research funding. I just want to make sure people are aware of how unpleasant medical politics can be and how stupid people in government can be.

I am also to some extent deliberately up front about negatives because the charities still have this idea that patients are too negative. If I am even more negative I can point out that it isn't just the patients who can see the flaws in proposals.

 

The German model was a hybrid. A call yes but for a consortium-based capacity building approach similar to the design of this proposal, so recognising the immaturity of the field in the same way this proposal does.

Prof. Chris Ponting was the lead signatory on the letter along with Prof. Danny Altmann. The Decode set up would have an integral role in this.

I cannot imagine he would accept or help design a structure or disbursement process that would fund BPS.

ME Research UK, which has experience of operating robust established processes for reviewing biomedical proposals, also signed.

I totally agree nhs medical services have not actioned NICE, but that's a different issue than research we are discussing here.

As far as research is concerned the NICE evidence stands as public record and can be and is still cited as reasons to reject poor quality bps research that uses subjective measures and funders are well aware of that issue now. Pace is a national embarrassment and that is well understood.

 

Understood by whom?

 

To clarify, that may or may not be the case but as an, arguably, integral part of the current DecodeME setup - one of the three members of the management team and a member of the Patient and Public Involvement Steering Group - I was not aware of this initiative prior to the announcement of it being made. I'm therefore unclear on how the DecodeME setup would be integral to this initiative.

 

I really appreciate this comment.

I do think we are all mostly in the same page

But I think it’s important to recognise some of us also have experience of the NHS systems, politics and medical politics. Of course not from your perspective but from others.

It’s absolutely right to call out risks and problems and concerns. But we do also need to be able to articulate what good looks like and push for it and convince others to support that. And I think that’s what a lot of us are trying to do.

 

I haven't yet been able to read through all of the documents, but a few initial thoughts:

As with other proposals, the support of pwME is requested and expected but there has been no opportunity for pwME to make representations about this proposal. The charities are all asking for signatories, but (as usual) not for patient input.

Some of the referenced documents do not appear to have been made public. In the "A Proposal..." document there is this:

I can't find this anywhere.

There are a number of unsupported statements. Two random examples:

I don't think we know enough about ME/CFS following vector-borne disease to make the first statement; secondly, it's entirely possible that ME/CFS occurs at different rates in different population groups, as many illnesses do, so the second is unsupported as well. These are minor although there are others.

Not sure how this figure has been derived. "ME-like symptoms"?

This kind of thing flows throughout the documents and strikes me as another iteration of the concept of IACCs, which I objected to before (link). The broader concept of "post-viral disease" is probably a red herring.

As to the researcher signatories: some have done excellent work; others have done things that are counterproductive. There are two signatories whose current research focus I would not support being funded further. And there are no NHS clinics worth a damn to provide clinical expertise; the usual cycle of clinical observation informing research informing clinical practice is broken. Until such fundamentals have been fixed progress will be glacial.

The plan assumes that enough teams exist to populate 5 separate hubs but the letters describe a minuscule number of researchers involved. There is no suggestion of long-term sustainability: after 5 years would it just end?

If a ringfenced pot of money was made available it would be difficult to stop it from being diverted to centres like IoPPN. We saw what happened in the Netherlands with set-aside funding for biomedical research: the medical establishment there ensured a huge chunk of it went to Rosmalen. The involvement of a number of knowledgeable and sensible patients in funding decisions would mitigate this but medical politics may preclude that from happening. PPI can be useful but is no panacea. Many clinicians and researchers will choose their favourite patients where they can. BACME has PPI; the AfME/Gladwell doc had a PPI group involved, and it was as much use as a chocolate teapot. What does seem to make a difference is having particularly well-informed patients who are confident in their advocacy and knowledgeable enough to face down the nonsense; it clearly made all the difference to the NICE process.

There has clearly been a lot of hard work going in to producing this; it is interesting and timely. I wish there had been some wider consultation beforehand.

 

All really good points.

I suppose I see this as being one of many stepping stones on a path.

Perhaps we could put together something? Not a complete wish-list or response, but perhaps something to build on what has been proposed? Do others think we could agree on a few sentences? I don’t want to put work on the committee though and there’s clearly lots of different views. Do others think it would be worth trying, would it add anything meaningful? If we could keep the scope narrow?

 

The proposal was only ever meant to be a start point of further discussions not a final end point. Further PPI and patient would be held.

I agree it is a shame the longer factbase and discussion document was not published to show the groundwork and evolution of thinking.

The work came from the Delivery Plan RWG, which was by necessity sized as a working group but there was good patient representation present.

It's of course impossible to cater for every single individual patient's perspectives and the government is not straightforward to deal with so IMO this was a very strong effort to try to build consensus and move things forward constructively.

I'm very disappointed at the degree of negativity about it here which is not constructive . Particularly at such a sensitive time in the Delivery Plan finalisation. And at the tone of voice used at times.

I am not going to engage further as viewpoints are clearly very entrenched and I would be wasting energy I don't have.

 

Your frustration is reasonable and understandable. You should obviously not use more energy than you have.

I believe the characterisation of criticism as «negativity» and «entrenched» is counter productive..

 

I'm afraid of the answer to this question, but: isn't that a solved problem? Is there really no coherent... anything? Or is this only a problem on problems that have been made controversial? This all seems completely basic stuff.

To be honest, there really doesn't seem to be, and it seems like every single attempt at anything just starts over from scratch, but that's just plain silly. Although it would explain a whole lot.

 

The problem is, @Trish, as I am sure you understand, that however much I could not agree more with this suggestion, it is not us who gets to decide. Moreover it cannot be up to Chris and one or two others to decide. The recipient cannot decide on the funding. There has to be an 'independent' judgment on who is funded, arranged by the people giving out the money. And it is far from clear who the people giving out the money are, if not the MRC. And all the MRC say is that they are very happy for people to make applications - and they get turned down.

 

what is the argument used by them to justify thempacifying long covid sufferers By pointing to the £40m dedicated funding &2 funding calls, including clinical trials and then turning to the ME/CFS community and claiming they could not possibly do anything similar please? Surely any excuses about capacity apply equally to long covid which hasn’t been restricted by that factor in its UK or global funding. Imagine if the global response to long covid had Been “oh it’s so new and mysterious and we have no dedicated facilities for this type of thing,how about ten years on a genetic lead first?”

The German funding possibly also reflects a situation whereby afaiu pre covid, ME/CFS was barely recognised as a physical illness at all, this should be seen as very different to the UK, that was given government/CMO recognition in 2002, has NHS services of sort and patients have been assured by the charity intermediaries that there was great willing to treat this as a priority area over years, but there was reluctance todo anything proactive even though measures like the highlight notices clearly failed. In my view, there has to be a justice element to the funding response now. The German “small start” is more understandable than another one in this country, this will be start number “3” & where there’s been complete failure over 25 years to deliver for m.e ,( *despite* it having government documented & acknowledged devasting effects and so on) the research progress we, the harmed and unnecessarily disabled , deserve.

edited to add “this should be seen as very different to the UK, that was given government/CMO recognition in 2002, has NHS services of sorts and “start number “3”

 

This type of endeavor would in my opinion be about twenty years too late. They called this a delivery plan , 23 years after the 2002 chief medical officers report was ignored and patient interpretation of that, quite reasonably was a gear change , and delivery of essentially justice with atleast ths same type of thing set up for ME/CFS (only better because it’s an established illness with clear definition etc) as was for long covid

 

Stephen Holgate has been trying to do that for twenty years. Minds will change when there are data. Which is why for me the strength of the Zhang genetic data is crucial to establish. If there is reliable evidence for certain immune or neural genes playing a causal role then we should have turned the corner. But that seems unclear.