United Kingdom: News from Forward-ME Group

It seems to me that the members of MEActionUK and MEActionScotland have a fundamental choice to make - whether to stay as part of the US run group with Jen Brea in charge, and all the associations with some of her other actions that brings, or whether the time has come to split off into an independent organisation.

I hope they do the latter, as I think the UK volunteers in MEAction have done lots of good work in the UK, and it would be a great pity if their grass roots activism and collaboration with other UK ME organisations were hampered by this ongoing problem. I am heartened by the plan for the UK branch to register as a UK charity. I hope that will bring with it the independence from the US organisation I think they need.

I refer to MEActionUK and MEAction Scotland as 'they' rather than 'we', but I think there are some of our forum members who are also active in these groups. I considered volunteering with them at some stage, but simply don't have the energy. I wish all the people involved in them well with their future decisions and actions and commend them for much of the work they have done. We are all in this together, I don't see it as 'them and us'.

I would ideally like to see the UK branches, as independent organisations, represented on Forward ME and able to speak for themselves, without any input from the US organisation. I have no idea whether US representatives were involved in the wording of the Forward ME statement. It would seem wrong to me if they had any influence in watering it down.

It feels sad, because #MEAction in the US have done lots of good things, and continue to do so, but there are things some of their leaders do that I fundamentally disagree with and fear are harming individuals and the wider ME community.
 
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Jonathan Edwards said:
The problem stemmed from a high profile member of MEAction
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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.

Jonathan Edwards said:
MEAction has not dissociated itself.
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Sadly Jen Brea's entire persona is too inextricably linked to be possible enough in their current climate. Sad.
 
Trish said:
It seems to me that the members of MEActionUK and MEActionScotland have a fundamental choice to make - whether to stay as part of the US run group with Jen Brea in charge, and all the associations with some of her other actions that brings, or whether the time has come to split off into an independent organisation.

I hope they do the latter, as I think the UK volunteers in MEAction have done lots of good work in the UK, and it would be a great pity if their grass roots activism and collaboration with other UK ME organisations were hampered by this ongoing problem. I am heartened by the plan for the UK branch to register as a UK charity. I hope that will bring with it the independence from the US organisation I think they need.

I refer to MEActionUK and MEAction Scotland as 'they' rather than 'we', but I think there are some of our forum members who are also active in these groups. I considered volunteering with them at some stage, but simply don't have the energy. I wish all the people involved in them well with their future decisions and actions and commend them for much of the work they have done. We are all in this together, I don't see it as 'them and us'.

I would ideally like to see the UK branches, as independent organisations, represented on Forward ME and able to speak for themselves, without any input from the US organisation. I have no idea whether US representatives were involved in the wording of the Forward ME statement. It would seem wrong to me if they had any influence in watering it down.

It feels sad, because #MEAction in the US have done lots of good things, and continue to do so, but there are things some of their leaders do that I fundamentally disagree with and fear are harming individuals and the wider ME community.
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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.
 
Trish said:
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It feels sad, because #MEAction in the US have done lots of good things, and continue to do so, but there are things some of their leaders do that I fundamentally disagree with and fear are harming individuals and the wider ME community.
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I agree fully @Trish i.e. ME Action are a very effective lobbying organisation.
 
Jonathan Edwards said:
I won't go in to details but the negotiations over this were considerably more complex. My understanding is that organisations agreed to all put this statement out themselves and as far as I know MEAction has failed to do so despite the statement being significantly watered down from what it might have been. The problem stemmed from a high profile member of MEAction. MEAction has not dissociated itself.

You are someone used to listening for political dog whistling, @Esther12, so I am a bit surprised that you do not see what has been going on here.

From my perspective the action of those still within Forward ME has been just the sort of unity from patient groups on a difficult issue that is needed to see their commitment to balanced information on ME. This shouldn't be seen in terms of politics, just agreeing that the only things that matter are the health interests of the patient community.
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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).
 
Esther12 said:
Also, while there are a lot of things about the way Brea has been promoting CCI that are a problem, 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.
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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.
 
Simbindi said:
I think the UK desperately needs a proactive advocacy organisation like MEActionUK, so really hope they consider this option.
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From outside the UK, it looks as though there are a lot of organisations. Is that the case for other diseases e.g. multiple sclerosis, Parkinsons in the UK, or do they tend to have one strong, consolidated national organisation? I wonder if the ME Action group could find a place within one of the existing larger ME/CFS advocacy organisations, bringing their enthusiasm and skills in community engagement and mobilisation to make the larger organisation more effective and energised?

When there is so much to be fighting for to make the lives of people with ME/CFS better, it's such a shame if energy is wasted on internal ME/CFS community disputes (or even just duplication of efforts).
 
Jonathan Edwards said:
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.
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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.
 
Esther12 said:
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.
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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.
 
Hutan said:
From outside the UK, it looks as though there are a lot of organisations. Is that the case for other diseases e.g. multiple sclerosis, Parkinsons in the UK, or do they tend to have one strong, consolidated national organisation? I wonder if the ME Action group could find a place within one of the existing larger ME/CFS advocacy organisations, bringing their enthusiasm and skills in community engagement and mobilisation to make the larger organisation more effective and energised?

When there is so much to be fighting for to make the lives of people with ME/CFS better, it's such a shame if energy is wasted on internal ME/CFS community disputes (or even just duplication of efforts).
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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.
 
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Simbindi said:
I don't know how others feel but I felt that the MEAction charity is being 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.
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Totally agree.
 
I think in the UK the largest 2 charities, Action for ME and the ME Association, are much more focused on educating and supporting patients, rather than advocacy. Their staff and leaders do some advocacy, but they don't have the same sort of grass roots advocacy set up as MEAction UK and MEAction Scotland. Local groups of the MEA are largely social support groups, not advocacy groups, from my limited experience.

There is certainly an important place for grass roots advocacy, I hope that energy will continue.
 
Simbindi said:
I don't know how others feel but I felt that the MEAction charity is being lot more proactive on actually fighting for real change in our daily lives.
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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).
 
lunarainbows said:
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).
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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."
 
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