United Kingdom: News from Forward-ME Group

Well, the starting point is my post on here in August requesting that interested parties expressed concern about unwarranted statements being made. I am not privy to the discussions at Forward ME beyond that.

 

they could do what #MEAction australia did as posted above:

eta:
I don't know how these things work but shame they couldn't take over The ME Patient foundation (incidentally the fundraising page still seems to be operational).

https://www.s4me.info/threads/the-me-patient-foundation.10118/page-3

 

I feel very sorry for their very many UK activists, who are good people brought in on the Unrest wave.

They should still be personally "welcome" to avoid damage becoming gangrenous.

Sadly Jen Brea's entire persona is too inextricably linked to be possible enough in their current climate. Sad.

 

I was thinking this too. There was a similar problem in the autism community with Autistica originally being affiliated with the damaging USA organisation Autism Speaks when it was first being set up. However the UK organisation has distanced itself and has shown it has completely different values, which is why I feel I can support them. I think the UK desperately needs a proactive advocacy organisation like MEActionUK, so really hope they consider this option.

 

I agree fully @Trish i.e. ME Action are a very effective lobbying organisation.

 

I don't know anything about any commitment for the groups to release this statement themselves. If they said they'd do this then they should have. It's difficult for me to judge without knowing what they said about delaying/refusing to do this.

One good/bad thing about ME Action is that they do seem to try to be a genuinely user led organisation. I expect that would make it more difficult for them to disassociate from Brea and some of the things she is doing, but it also means that Brea has less power within the organisation than the 'leaders' of other groups, and so disassociating from her non-ME Action behaviour would seem to be less important to me.

Having said that, I don't have a good understanding of the internal workings of ME Action, or what role Brea currently plays within it.

Also, while there are a lot of things about the way Brea has been promoting CCI that are a problem (and the fact this is for such a serious surgery makes those problems particularly dangerous), I'm not sure how many of them would be viewed as clearly unacceptable by most patients. A lot of patients still value random anecdotes for things like homeopathy, especially when they're newly ill and haven't been burned by this stuff. It wasn't long ago that the ME Association published some long feature on the recovery of someone who was selling some mind-body "recovery memoir" ('Finding Freedom: Escaping from the Prison of Chronic Fatigue Syndrome' presented as providing a "simple yet rigorous healing plan" in ME Essential winter 2020).

I'd prefer to have the problems with Brea's promotion of surgery be a reason to have more discussion about the problems of peoples' promotion of anecdotes and poorly supported medical claims than as something that led to ME Action being kicked out of organisations that should be able to help patient groups work together, particularly in the context of all the groups having signed up to a statement like the Forward ME's one on surgery.

I could be missing some dog whistling but I'm also sympathetic to the people at ME Action who seem to be in a difficult position.

 

Perhaps ME Action UK could be persuaded by the argument that it's a double standard to criticize CBT/GET while being lenient with spinal surgery claims.

It's important that patient organizations are not seen as criticizing one quack treatment while tolerating or promoting their own quack treatments (or theory on the cause of the illness).

 

I really don't think there is any comparison @Esther12. The surgery for ME story has largely been invented by Jeff and Jen. It sounds as if Jeff is making a living out of selling it. Everyone who has the surgery will be seriously disabled in terms of neck movement as a result and the serious complication rate long term will be high, including deaths.

I am not why I have spent so much energy over the last five years trying to help PWME fend off the dangers of GET if the dangers of unnecessary spinal surgery are just passed off as harmless patient anecdotes.

Edit: Strategist said it first.

 

I'm not passing off unnecessary spinal surgery as harmless patient anecdotes - and I don't think that the way patient anecdotes are used to sell homeopathy/books/anything else is harmless either. I'm pointing out that a patient led organisation is going to be led by the instincts of patients, and I'm not sure where those instincts will lie with attitudes towards these sorts of anecdotes.

To me, there's also an important difference between patients promoting something as useful online because they think it helped them even though it could well be useless/harmful (which I think should be criticised), and authority figures promoting something as a useful form of 'evidence based medicine' even though it could well be useless/harmful (which I think is an abuse of power).

This example is complicated by the fact that some people could view Brea as a form of authority figure, and also because the surgery she is encouraging people to pursue is such a serious and risky intervention. I'm not sure how to balance all of those things up, but unless Brea has done something worse than what I've seen (I've not been following what she has been saying recently), then by the standards of patients promoting their recovery anecdotes she has often been more cautious than most and I suspect it would be difficult to get a patient led organisation to condemn her rather than just raise concerns about surgery as an intervention. Even with that being the case I still think it would be good to work with a patient led organisation like ME Action.

 

I think this is a key issue. Brea talks as if she has authority to give opinions on medical matters. She has made it clear she wanted MEAction to provide authoritative medical information for patients yet sidestepped the opportunity to bring in people with expertise to advise. She gives the impression that her essays on spinal issues are based on anatomy and physiology when in fact they are a jumble of out of context ideas. If there had not been push back from various quarters I suspect the whole of the MEAction information site would be awash with pseudoscience.

Moreover, Brea has been told time and time again that her outpourings are from a medical point of view unwarranted and irresponsible yet she refuses to accept any criticism. And there has been not a peep from MEAction about concerns over the material.

I don't buy the idea that only professionals have responsibilities to get things right. If patient led organisations set themselves to inform they have exactly the same moral obligations.Empowerment brings with it responsibility.

 

I don't know how others feel but I feel that the MEAction charity is being a lot more proactive on actually fighting for real change in our daily lives. I have no idea if this sort of patient led advocacy is being suppressed in the more 'top down' ME charities. I didn't gain anything from being a member of the ME Association, I felt it was top down as is the Action for ME charity. That's a complete turn off for me. I also felt both these charities are not doing enough to (for example) prevent the ongoing medical harm of especially moderate and severe PWME in the NHS system, or to highlight how PWME are basically abandoned by their GPs in this country. Neither do I like that the ME Association charges for its advice leaflets (even members have to pay for them), rather than making them free to download. I'd rather pay a decent membership fee (like how the UK Benefits and Work site works) that allows me to access all an organisation's resources.

 

Totally agree.

 

I agree that MEAction is making a lot of noise about change but have they actually done anything that is likely to bring about change? Other charities have raised funds for research and provided useful information. They provide people who sit on things like the NICE committee, which may actually change things. MEAction could have made use of medical expertise but decided not to. Agree that there are stick in the mud aspects of other charities but if an advocacy organisation indicates that it does not really care if some of the stuff it is associated with does harm I think that rapidly makes it impotent to tackle the establishment. It is open to ridicule. And of course ridicule has been the trump card for those who would dismiss PWME.

 

Something that MEAction did which helped us a lot, was the survey about GET/CBT accompanied by a really good report, which was then forwarded to the NICE guidelines committee. I think the countess of mar asked them to do it. I was hoping they would do another for hospital experiences & other things like social care too, as I think they are really powerful. (I did write to Forward ME about that but didn’t hear back).

 

Is it this one you are thinking of? ME Association: Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS

If so, that was commissioned by Forward-ME and "The patient survey, analysis by Oxford Brookes University and final report were paid for by the ME Association and ME Research UK."