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UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
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Evergreen
Senior Member (Voting Rights)
I had the same impression, that there has been an uptick in the use of the term "rehabilitation" to refer to GET/CBT for ME/CFS, but it's always been there.
Wessely et al start their 1989 paper with:
The FINE trial protocol from 2006 also describes their GET-CBT-"education" combo intervention as pragmatic rehabilitation. Powell's case studies in 1999 that led to the FINE trial also called it pragmatic rehabilitation.
The PACE protocol paper from 2007 (https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6) is littered with references to rehabilitation:
Has there been a good response on mastodon, I'm not a member.
Both S4ME and the MEA FB sites have numerous posts of people who are very concerned about the pointlessness (not sure that's a word!)
Someone on MEA FB linked to the S4ME FB site.
EzzieD
Senior Member (Voting Rights)
This 100%. Everything they write is littered with 'it is assumed', 'it is thought', 'may be', and other vague belief-powered, not scientific evidence-powered, piffle. And the medical establishment laps it up uncritically, and calls US anti-science. Bizarro World!
If 'simple rehabilitative strategies' worked, we'd all be cured now. So that was written in 1989 and they still don't get it? Ahem, “The definition of insanity is doing the same thing over and over again and expecting different results”...
Andy
Retired committee member
Three likes, four re-posts.
rvallee
Senior Member (Voting Rights)
But they don't have to. It's selling like hotcakes anyway. It's just a scam/belief, no one involved cares whether it's any true. They just care that they can sell it over and over again and not bother to do anything about us. They're never asked to put any evidence. Even the vast majority of MDs don't care, they just assume it must be validated and never think twice about it. Or once. They're overworked twice over anyway, they don't have time for this.
This is the difference with corporate scams. Theranos fell apart because at some point they were demanded to deliver something that worked, by investors who have rights and could use legal maneuvers to force the company's hands. Madoff's Ponzi scheme fell apart because the 2008 financial crisis meant he could not longer pay the cycle, people demanded cash in their hands. It's when the cash couldn't be paid that it fell, otherwise it would have gone on for many more years.
In psychosomatic ideology no one cares about outcomes, that nothing ever gets delivered. The scam has been going on for over a century without delivering a damn thing and still no one ever demands that anything be delivered, checked and validated. No one but us, and we're mocked for it.
So they're not dumb enough to break the scam by invalidating their own assumptions, they don't even have to bother. Assumptions is all they need. We're the only ones in all of society who care about outcomes, and we don't count. The whole ideology is about invalidating us so that we give up and die sooner, easily replaced by a natural cycle of births. Or whatever. As long as we don't bother them too much.
Which actually may be the undoing. It's actually a race between declining birth rates, which will make workers a scarcity, and AI making most labour redundant. Many countries are facing severe declines in available labour, made worse by COVID wrecking people's health, and the solution to increase immigration is always political dynamite. Either is going to happen soon, so the scam will face a situation a bit like Madoff's scam in that it will be overcome by events. Events that go against one another in a very chaotic storm that could still end up not giving a damn about us. Or not. Depends on what sells best.
Posts discussing possible terms like 'green-washing' have been moved to a separate thread:
What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?
What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?
Does anyone know the trustees of the MEA? Surely some of them must see the problems with this research?
Are the trustees appointed, or elected by the members?
Jonathan Edwards
Senior Member (Voting Rights)
I think in practice most of the decision making goes through Charles Shepherd.
As far as I can see this project was seen as a valid response to the NICE call for better assessment tools for trials.
Peer review is a fragile process at best. Charles has to follow the rules.
Whether other trustees would see the weaknesses of the study I don't know. I don't think most of them are biomedical people.
Kitty
Senior Member (Voting Rights)
One of my worries is that it's actually going to end up being used for trials, when at the outset it was presented as not for use in trials.
So decisions about allocation of research funds in the MEA are mostly made by Charles? I would have thought that Charles understood the problems with subjective outcomes for rehabilitation treatments?
I don't think you have to be a scientist to understand the problems with subjective outcomes for rehabilitation treatments that encourage a downplaying of symptoms. Surely all MEA trustees would be aware of that? It is after all the core problem with the so-called CFS treatments based on the psychobehavioural hypothesis.
If the MEA does not have an informed panel evaluating research fund allocations, then maybe calling for one is a good place for advocates to start? Those research funds are precious, and absolutely must not be wasted on counterproductive nonsense. If the MEA can't assure its members that it has good processes for distributing research funds, then it has no business asking for donations.
@Russell Fleming, I think we need a response from the MEA that addresses the issues we are raising, rather than focussing on telling us we are being unreasonable.
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MrMagoo
Senior Member (Voting Rights)
It’s the Ramsay Research Fund isn’t it?
https://meassociation.org.uk/research/
I hope there’s a panel- seems to be the Trustees
Attachments
The MEA trustees are elected by members.
https://meassociation.org.uk/about-the-mea/who-we-are/
The current trustees are:
Neil Riley - Chairman
Charles Shepherd
Martine Ainsworth-Wells
Ewan Dale
David Allen - Deputy chairman
There are also some associate trustees:
Nicki Strong
George Evans
Mike Mitchell
It looks like they have a range of professional skills useful to the MEA (law, IT, media, finance) and almost all either have ME/CFS themselves or are carers. Charles Shepherd is the only clinician on the board and there are no biomedical scientists.
The MEA also has advisors some of whom are clinicians.
https://meassociation.org.uk/about-the-mea/who-we-are/
The current trustees are:
Neil Riley - Chairman
Charles Shepherd
Martine Ainsworth-Wells
Ewan Dale
David Allen - Deputy chairman
There are also some associate trustees:
Nicki Strong
George Evans
Mike Mitchell
It looks like they have a range of professional skills useful to the MEA (law, IT, media, finance) and almost all either have ME/CFS themselves or are carers. Charles Shepherd is the only clinician on the board and there are no biomedical scientists.
The MEA also has advisors some of whom are clinicians.
Thank you both.
The funding of this PROMs project suggests that the MEA's evaluation system does need improving. There seems to be a relatively easy fix then - creating a small panel of people with expertise in evaluating research proposals who are responsible for recommending disbursement from the Ramsey Research Fund.
The poor response of the Trustees when people have pointed out that, for a range of reasons, this project was not an appropriate use of donated funds suggests that the Trustees either need to be different people or they need to educate themselves about ME/CFS politics and the subjective outcomes problem. It seems that the ultimate response lies with MEA members:
- members can put themselves forward to be a Trustee in the next election
- members can write to individual Trustees to recommend changes
- members can choose to donate to other charities that have stronger systems to ensure maximum benefit and minimum harm arises from funded research projects
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Jonathan Edwards
Senior Member (Voting Rights)
Life isn't necessarily that simple.
You can have a charity where decisions on funding are made by trustees or otherwise people who run the charity and there are some ME charities that work rather like that. But judging quality of applications is not something most people are equipped to do. The level of discussion here is way higher than even on most grant boards.
The alternative, which I think Charles largely follows, is to ask for peer review of applications. You are then in the hands of the reviewers. And if they are people doing research into ME/CFS they may not be that critical either.
Large research councils, and very big charities like Versus Arthritis, have committees of experts to review the reviewers comments. Which might sound good but I can assure you that it often leads to huge sums being spent on hopelessly bad projects - one comes to mind.
It is hugely frustrating but I am quite sure that Charles does the best he can in the situation.
Of that I have no doubt. The trustees have a responsibility for putting in place a process that does not fail if one person is distracted or has a particular blind spot or is friendly with a particular researcher. It's reasonable to expect that there is a small panel of qualified people recommending funding decisions. If a charity can't manage that, then perhaps it has no business operating a research fund.
If Charles was the person who made the decision to fund the project, what was he thinking? He understands the issues with PROMs, and with the NHS clinics, he knows BACME. Surely he could see that creating MEA-endorsed PROMS allows ineffective psycho-behavioural treatments to appear to be effective? I feel that there is something we are/I am missing, as, on the face of it, it seems to make no sense.
I don't think that you can always foresee everything - hence the control mechanism bit being the issue (and I don't know what is available there).
I'm not in disagreement with you at all regarding the question of how can we help or improve assessing applications - and I suspect there is probably some sort of charter that might be useful for 'allies' in looking at ME research and how things like 'consultation' might need to work. THere are a lot of complex landmines with that (entryism, different patients at different stages)
At this point this project has turned out to be a concern. Stuff comes out the woodwork vs what people sell things as, or what you apparently will be called names for predicting, until it turns out that is exactly what they do etc.
And BACME seem to be very happy indeed to have the 'MEA stamp' on it, along with claims of patient consultation. I don't know whether on top of that being a funder provides opportunity to raise concerns.
This seems to be quite a lynchpin if it is going to be used as the 'outcomes database' or 'what gets measured at all'.
We now know a heck of a lot more context in recent weeks about what those who assume they will still eg be in charge of clinics, also plan to do. SO measuring 'delivery' of that, is a problem when the 'what' is the issue.
I think that discussion needs to be raised with the MEA as a very significant concern indeed. That we end up with a distraction of a debate each time we try and say it is the same treatments that harm, and we have patients coming through who have been harmed and huge amounts more being harmed by having no access to treatment because what is available is harmful and is even undermining basic support including from family and friends. ANd then they point to 'the official figures' which according to some of what I've been trawling through from the past are going to be all about focusing on 'delivery'.
ANd we don't have PEM being measured. Or even properly kept as an entity that is the 'crux' of the condition
These are all not just worthy of discussion but a massive undermining of patients. My gut also says there is no need for all the huge numbers of questions and it just shows a lack of acknowledgement of the spectrum of patients that it should be capable of measuring. In essence we have a new barrier being added to the 'you have to complete the treatment and still be standing to count' barrier: can you now fill this in?
I think we need to make sure we don't let people mulch debates and then someone gets to say they haven't the energy/time/resources to deal 'with it all'. And that how research is assessed is a big and complex one, where is this is pretty specific and very time-contingent.
Kitty
Senior Member (Voting Rights)
He may not have been entirely responsible. If someone makes an application to the fund, presumably there is a process they have to follow; if it's okayed, he has to sign off on it.
You're right that there should be better quality control, but what really seems to be missing is meaningful patient consultation. It's fine to say that Trustees have lived experience of ME etc, but to get good results you need more pairs of eyes on it than that. New pairs of eyes, too; ones that are less likely to just go along with others, or look particularly sympathetically at some applications because they know the researcher.
and with sufficient time and process that perhaps those patients who are respected as having more experience in certain areas are able to read and provide their thoughts to those who would like it.
It would be good to get an answer to this one - what for example happens if someone is particularly charismatic and it is the trustees who actually get the vote but perhaps Charles or a few others have concerns.
Agree that given the environment in which ME has ended up there is good reason to say that additional help is needed in assessing things along these lines in general because of the deception - intended or unintended (self-delusion) - that has happened historically but also naivity (we often have people who seem to 'get it' with ME and then fall at the next hurdle). But just simply add in the blinking weird situation where you have a condition where many 'services' only treat the very mildest and maybe those who don't even have it. Where doing research involving the most severe is at risk of harm just from exertion. But it is the vital part that needs to be included. And the PEM issues and deterioration really happenning over longer time periods meaning that its about patterns and timings many other conditions don't need to be so precise in their design with.
And normal type peer review isn't going to cut it for this.