UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

FMMM1 said:
OK I've contacted individuals in Government, APPGs, --- pointing out that NICE found all of the publicly funded research was "low or very low quality". Typically studies lacked objective outcome criteria; this was highlighted by the authors [Jonathan & others] of the letter to BMJ*&**.
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This could lead to funding of CBT/GET-like research that is presented as being of higher quality. In the NICE guidance, the low quality rating was in part the result of using outdated case definitions. What if the CBT/GET proponents use some newer case definition? Then their research might be considered moderate quality according to the (flawed) grading system.

I believe the reason they achieved some positive results is probably more because they aren't properly controlling for nonspecific effects, rather than the use of a bad case definition that allowed patients in that don't have PEM.

It might be hard to persuade funders to reject studies that lack blinding and use self-reported outcomes because it would imply that many other studies are also bad. A paradigm change that is much larger than ME/CFS would be required. Maybe some way can be found to prevent funding of more bad CBT/GET research that is less likely to encounter resistance?

Maybe a clear statement that patients do not want any research that has characteristics of the typical CBT/GET studies?
I am coming back to the idea of Norwegian model where patients have veto rights to prevent research they don't like.
 
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Brief read over today: There is a lot to like here. Having been the BPS representative in the Attitudes and Education group it is good to see this in print.

I have submitted my own personal feedback about a few areas I would like to see stronger, for example,

- the e-learning needs to be mandatory for health and social care professionals. As per the recent Oliver McGowan autism and learning disability training.

- I am not keen on the wording or framing of the historical context and strong opinions. I think this needs to be better.

- peer review for research funding is opaque. Inclusion of patients within this process and making it more transparent will encourage more serious researchers.

- work and limitations needs a bit of work/nuance. PwME are incredibly sick and often disabled. Gains here will be best realised but investment in biomedical research and effective treatments with real world positive impact on functioning and symptom reduction.

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It would be helpful if the BPS made an appropriate statement / contribution in the report too along with those already from social and medical institutions. I have asked BPS colleagues to work on this with me. I plan to work with my psychologist colleagues to respond too via the BPS.
 
Binkie4 said:
It would be hugely disappointing if there are relatively few responses and could be taken as a signifier of lack of patient interest.
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I don't see that as being problem. There is already very substantial patient involvement. Asking for wider comment is part of the consultation protocol but nobody is going to go away with the impression of lack of interest.
 
I'm in quite a bad crash at the moment, and I'm going to have to reduce screentime and stop most of my advocacy work for a while. I might not be able submit my own comments unless this crash subsides.

I just want to add two points for now (that others may have already made):
(i) EDUCATION AND TRAINING: the medical education course/training is supposedly being produced by NHS England. Remember Wessely is on the board now, and also remember the awful stuff from individuals at NHS England before and during the NICE guideline debacle (as shown in my FOI request and a previous FOI request, from someone I can't now remember).
(ii) RESEARCH: I recently got hold of some information from the MRC on statistics for rejected ME/CFS research proposals for 2003–present. These aren't publicly available, but they can tell us a lot. I am trying to get hold of similar figures from NIHR, but they are a pain to deal with. NO ONE IS SUBMITTING PROPOSALS, despite the Highlight Notice! The numbers are way worse than you can imagine—around 2 applications per year on average over past decade (and some of these aren't even actual ME/CFS projects). I hoped to write this up but I've been very ill recently. I might be able to share some figures/stats and the data over the next few weeks.

I will add more in relevant threads when I can.
 
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Hoopoe said:
This could lead to funding of CBT/GET-like research that is presented as being of higher quality. In the NICE guidance, the low quality rating was in part the result of using outdated case definitions. What if the CBT/GET proponents use some newer case definition? Then their research might be considered moderate quality according to the (flawed) grading system.
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I don't object to research which assesses an intervention and asks the question "does it work?" The problem (to me) is when "researchers" rely solely on subjective outcome criteria in unblinded studies --- and then claim that the intervention works. I've had a consultant/professor of neurology tell me that exercise is effective --- the guys a friend of my daughter [who has disabling fatigue]/mine --- I'd rather these "interventions" were objectively assessed then (hopefully) it's acknowledged that the evidence indicates they don't work --- move on --- try something else.
Objective outcome indicators/evidence indicate they don't work.
Personally I'm not too concerned re definitions e.g. GET [oops typo - should have been "PEM" not "GET"] is based on the response to a questionnaire - OK there is some research using actimetry [FitBit type devices] in fatigue, so that may provide better defined cohorts in the future.
 
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Hutan said:
And 241,000? Is the method of estimation really so accurate that it warrants the precision of that extra 1000?
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Pretty ill, but commenting on this as I was tagged, and there seems to be some discussion about it.

I completely agree that our blog is not a good source for a prevalence estimate in an official report

I can’t even remember if this blog was published by Chris or myself, and I’m far too ill to look. But I can also assure you such precision was a typo/error, not any confidence in the estimate!

240,000 figure has been widely used by charities, and works out at around 0.4%. Personally, I think that is (or was) at the higher end of credible estimates. Though long Covid is likely to be changing that.
 
InitialConditions said:
(ii) RESEARCH: I recently got hold of some information from the MRC on statistics for rejected ME/CFS research proposals for 2003–present. These aren't publicly available, but they can tell us a lot. I am trying to get hold of similar figures from NIHR, but they are a pain to deal with. NO ONE IS SUBMITTING PROPOSALS, despite the Highlight Notice! The numbers are way worse than you can imagine—around 2 applications per year on average over past decade (and some of these aren't even actual ME/CFS projects). I hoped to write this up but I've been very ill recently. I might be able to share some figures/stats and the data over the next few weeks.
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This is the problem in that we need to build a community of researchers based on those who have skills and interests that could overlap with ME. That is a really hard tasks and would require funding to develop materials have people go round universities and talk, get interest etc. But something that I think should be done (and it is possible to ask the MRC for grants for this type of activity). Unless we can do that, even with money, I don't have confidence that ME research will expand (in a meaningful way). I have seen some of this done in my own research area cyber security (to a certain extent but from a good base) because government thought it important enough to boost research.
 
Adrian said:
This is the problem in that we need to build a community of researchers based on those who have skills and interests that could overlap with ME. That is a really hard tasks and would require funding to develop materials have people go round universities and talk, get interest etc. But something that I think should be done (and it is possible to ask the MRC for grants for this type of activity). Unless we can do that, even with money, I don't have confidence that ME research will expand (in a meaningful way). I have seen some of this done in my own research area cyber security (to a certain extent but from a good base) because government thought it important enough to boost research.
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Precisely this. We need to build a whole network of researchers / give them some sort of incentives/support to switch to this line of research. Perhaps an MRC centre of excellence for infection-associated chronic illness? That's the scale of what is needed.
 
Binkie4 said:
At the moment I'm feeling quite overwhelmed by the magnitude of the task of responding to the plan. I realise this isn't helpful when at last someone is listening but I am concerned over how many of us are in this position.

I have been active in the past in contacting various bodies as has Mr B, but at this moment, I don't feel for various reasons ( a particularly bad bout of PEM and other health conditions to manage, advancing age) we have the resources to do it. It would be hugely disappointing if there are relatively few responses and could be taken as a signifier of lack of patient interest.

I hope I am being unnecessarily gloomy, that there are sufficient people able to step up and respond with sufficient time and vigour now that someone is finally listening?
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Snap. I’m in no fit state right now to read it all, let alone respond. But, am hoping to try to break it down into chunks and read/digest . Best of luck to you finding a way too.

Edit to sort my post out, signs of where my head is at!
 
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Fainbrog said:
Unsurprisingly, there are some comments on there already demonstrating why GPs need training..
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Lou B Lou said:
The Pulse GPs who Commented don't want training. They appear to want to continue dismissing us and exercising their prejudices about ME patients.
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one of the comments says

CFS/ME
Diagnostic criteria – no international consensus. UK criteria published by NICE.
Cause unknown
Pathology unknown
Prognosis unknown
Treatment unknown

It’s a bit hard to see quite what we are to be educated about, really.
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perhaps you (plural) need to be educated that non of the above is license to treat us like sh*t!

And perhaps that the unknown part does actually mean what it says, and that without all that being known, you have no license nor is it morally acceptable, to decide for yourself that 'unknown' actually means ....

cause = trauma/over-reacting to symptoms/laziness/femaleness/stupidity/being an unreliable witness to our own experience /<insert whatever prejudiced insulting idiotic idea appeals to you as a medic> / secondary gain

prognosis = you be better in a few months if you just keep going for a walk/swimming/think more positively /<insert whatever prejudiced insulting idiotic idea appeals to you as a medic> / allow me to remove what you see as secondary gain by convincing patients family not to help them because that would be to enable their unhelpful belief that they are ill.

treatment = CBT/GET / being a heartless ______
cuz that's what we're used to, innit

But rather just admit you dont know and compassionately help your patient with symptom control where you can
 
Listened to most of it - agree with what people have said here. I think when it comes to e-training materials more than anything it needs to be made clear to doctors that exercise is dangerous - I don't think that point has been made firmly enough. That and any sort of superstition than you can manifest the disease just by talking about it needs to be gotten rid of.

Agree with sentiments about removing possible loopholes that could allow bad actors to compromise parts of project. Someone said a patient 'veto' on any produced materials/plans which I think is an interesting idea. Patient selection also potentially important - such as community elected or chosen by trusted charities etc so as to remove the possibility of specially selected patient representatives chosen by bad actors.

The document honestly is pretty great overall in my opinion thanks to those who worked on it. The future success and counterweight to BPS related agendas in the NHS and beyond appears to hang on the PSP and PPI. Even with the explicitly biomedical framing of the PSP we've seen that even that kind of thing can be subverted (ZonMW) so imo it hangs on the PPI arrangements being rock solid.
 
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Hoopoe said:
Would it be useful to ask researchers to include a group of ME patients in their studies of other illnesses when these studies are potentially relevant to ME?

A ME comparison group could be added to for example a study of neuromuscular function in patients with myasthenis gravis. This expands knowledge of ME and how it compares to another illness, get research done by someone with experience, and maybe the researchers see something they find interesting to look at in a subsequent study.
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From the research perspective I think there's a distinction to be made between clinical research and basic research in the lab. One of the biggest difficulties from the wetlab perspective is that getting hold of samples is insanely hard. In terms of biobank there's really only CureME and that's already limited in size. Ultimately we'll want to be looking at least hundreds of patient samples at a time to have good power that can deliver real answers. There's not really enough in the way of clinical collaborations to get hold of samples.

I don't know about how the logistics of clinical research work. This is obviously necessary for getting hold of patients to carry out for example these natural history and pacing trials that have been discussed before, and to do brain imaging and so on. The fatigue clinics don't follow patients for longer than a few months early on in their illness from my experience before they are let go and never talked to again.
 
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from MERUK
Delivery Plan Published – Consultation Opens
10 August 2023


ME Research UK welcomes the release by the UK Department of Health and Social Care (DHSC) of ‘My full reality: the interim delivery plan on ME/CFS‘.

This document has the potential to deliver concrete benefits to the lives of those affected by ME. In the foreword to the plan, the Minister writes:

This interim plan sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. With the right advice, care and adaptations provided by the NHS, social care, education, the welfare system and employers, I am confident that people with ME/CFS can be supported to manage their symptoms as effectively as possible, contribute more to our society and maximise their quality of life. The interim plan is a significant step forward in delivering that vision.

Unlike previous initiatives (such as the Report to the Chief Medical Officer in 2002 or the Gibson Report in 2007), the interim Delivery Plan has the distinct advantage of its remit spanning numerous government departments including the Department of Works and Pension; the DHSC; and, crucially, central funders of research – the NIHR and MRC – whose constructive involvement will be needed if aspiration is transformed to reality. In addition, the involvement, especially in the research process, of patients as co-chairs of committees has added greatly to deliberations and brough fresh perspectives and impetus.

ME Research UK wishes to thank all those who have contributed to the process thus far, especially the patient community, as the demand upon their time and energy has been great as the scope of the endeavour became apparent. It ought also be remembered that it was made clear that practical support such as secretarial services by the NIHR, MRC and DHSC would be limited in the extreme.

Focus now turns to public consultation and ME Research UK urges all interested parties – especially people with ME, their carers and researchers – to join ME Research UK in submitting their responses to the consultation which closes on 4 October 2023. This is an opportunity to comment, suggest and press for improvements in what is a long document.

The DHSC state that they “will use the information submitted through responses to the survey to develop the Final ME/CFS Delivery Plan for England, which we aim to publish before the end of the year”.

We have summarised some of the research aspects of the interim delivery plan here
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https://www.meresearch.org.uk/delivery-plan-published-consultation-opens/

nothing from IiMER(?)
 
Sean said:
The government ultimately controls the purse strings. They can starve the BPS cult into submission, or at least irrelevance, if required.
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There is a very strong case to make that they have been running around in circles for years, and that there is simply nothing left to do. For them or anyone else. Everything they do is just more of the same that they've been doing from the start. It's clearly a complete waste of funding.

But it runs into the general model of the biopsychosocial juggernaut, IAPT and a whole lot of other things beyond us. Big money, a big private industry, academic careers, lots of continuing commitments from the government and the reality of having wasted all the money invested in the past.

Still, a complete and total waste where nothing they've done in the last 2 decades wasn't already done. They don't do any real research, they just "pragmatically" try the same junk over and over again, or ask the same questions to a different small group of people. However much organizations in the government have convinced themselves that they're getting good ROI out of it, they're absolutely not. It's pure waste.
 
Lou B Lou said:
The Pulse GPs who Commented don't want training. They appear to want to continue dismissing us and to carry on exercising their prejudices about ME and the patients.
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Fainbrog said:
Unsurprisingly, there are some comments on there already demonstrating why GPs need training..
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Yes, a lot of sarcastic comments that show frustration, but also show how they need for training. The frustration with ME patients should improve once they better understand ME. Also I'm getting the feeling they underestimate that a correct and rapid diagnosis of ME is useful for patients.
 
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