United Kingdom: Action for ME (AfME) news

Mixed feelings.

AfME are now heading in the right direction. Constructive criticism and engagement with them seems more a more productive path than this approach.

But they do have a way to travel yet, and they really do need to publicly acknowledge their role in PACE and apologise for it. The cover they gave PACE was a critical failure on their part.

Agree that if any charity should be sued over their role in PACE it is the SMC.
 
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adambeyoncelowe said:
The other downside is that it fuels the 'vexatious activists' narrative, if we also complain about the charities who are ostensibly on our side (past behaviour aside).
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And if this complaint doesn't get used in attempt to put people off from participating in DecodeME then I'll be surprised, there will be certain BPS supporters on social media who must have been delighted to see this news. I doubt that the complainant, assuming they are well intentioned, factored any sort of knock-on effect into their calculation of how worthwhile it actually was.
 
It is, I suppose, possible that the nature of the complaint has been inadequately or mis-reported in the newspaper. If, for the sake of argument, we accept the report at face value it is interesting to consider what a finding in favour of the complainant would imply. AfME was encouraging participation in a trial relating to the condition. The trial was supported and funded by the MRC and other public sources. It apparently had approval of an ethics committee. Research was undertaken by supposedly leading research institutes. Is AfME to be held to a higher duty of care than any of them?

The Charity Commission is not noted for "courageous" decision making.
 
At the time the PACE and FINE trials were set up, and their setting up was supported by AfME, there had already been several smaller trials that were being used to support the BPS/GET/CBT approach. And soon after, in 2007, NICE used those smaller trials as the basis for recommending that approach. So a reasonable argument could be made that larger, definitive trials were justified to establish beyond reasonable doubt, whether the treatments actually do work. So far so good.

It was not just AfME supporting the principle of running such trials that was the problem, it was the unscientific and dishonest way they were carried out and the results reported, and the fact that AfME went along with all the missteps in the process that made the organisation a party to the problem.

Then the question is, what does a Charity consist of? Who in a Charity is to he held responsible if it mis steps to the detriment of the people it was set up to serve? I assume the buck stops with the Trustees at the time it acted wrongly. I don't see how Trustees (or staff) appointed after that time can be held responsible.

And what was the crime of the trustees at the time? Was it unwittingly putting their trust in whoever they appointed to represent AfME in the PACE structure? Or was it ignorance among lay Trustees of research methodology? Or was it deliberate support of bad science that would ill serve the people the charity was set up to serve? Does culpability depend on intention?

If the lay Trustees acted with good will and trusted the 'experts' they had appointed to advise them, then they are no more, and probably less, to blame than the funders, ethics committees, journals that published the misleading versions of the results, and most of all the research team who knew exactly what they were doing and chose to do everything possible to skew and misrepresent the outcomes.

So why pick on AfME to blame? Perhaps because it is easier to tackle a charity than a government organisation that funds research or one that gives ethical approvals, or journals that publish shoddy science presented misleadingly?

Or perhaps because AfME has still only made what looks like a half hearted attempt to distance itself completely from the actions of its predecessor Trustees and staff. And to make crystal clear the fact that both PACE and FINE, contrary to the claims of the researchers, demonstrate once and for all that CBT and GET don't work.

The most positive outcome, I think, of this action would be a thorough and swift cleanup of all AfME's publications, and distancing itself completely from the people from the Bristol clinic who, as I understand it, have continued to play a large part in their production of materials.

I trust Sonya to be doing her best to move the organisation forward in a good way, and commend her involvement in DecodeME and the PSP, and some of the other actions AfME does to support pwME. I hope a higher priority will be given to sorting out all their materials.
 
Trish said:
Then the question is, what does a Charity consist of? Who in a Charity is to he held responsible if it mis steps to the detriment of the people it was set up to serve? I assume the buck stops with the Trustees at the time it acted wrongly. I don't see how Trustees (or staff) appointed after that time can be held responsible.

And what was the crime of the trustees at the time? Was it unwittingly putting their trust in whoever they appointed to represent AfME in the PACE structure? Or was it ignorance among lay Trustees of research methodology? Or was it deliberate support of bad science that would ill serve the people the charity was set up to serve? Does culpability depend on intention?
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The Charity is a legal entity and the Trustees in place at any one time are legally the face of that entity and are responsible in Law for all current and past actions of the Charity, there are various ways that Trustees can be protected as individuals but they have to act according to their legal obligations.

The complaint as reported sounds absurd and certainly doesn't seem to reflect Charity Law, the guidance the Commission gives on complaints or the way the Commission is set up to operate, which is to assist Charities to be effective, not to be some court dishing out punishments. The Commission might take this complaint as a case to explore because it sees a lack of precedent and wants to give future clarity, but just because a complaint has been made doesn't mean it will amount to anything.

Someone in the relevant section at the Commission will review the complaint and it may go no further than some correspondence with the Charity concerned and the complainant then being given an explanation of the Law and the basis of the Commission's decision to go no further.
 
Trish said:
I assume the buck stops with the Trustees at the time it acted wrongly. I don't see how Trustees (or staff) appointed after that time can be held responsible.
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What happened with AfME and the PACE trial happened. If they had been more proactive in clearing up the mess they contributed to I think most would be prepared to forgive and move on.

However, as we know some of their information leaflets are still very problematic and are probably causing harm today. That isn't really forgivable. We are far beyond the stage when all of AfME's documents and statements should give a consistent and clear message about GET, CBT and the likes.

Until that happens then it is understandable that someone might feel driven to try to tackle them in some way.

Sean said:
Yes, let's not make AfME the scapegoat for all the other more serious failures across the board.
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Agreed. The "but everyone else was doing" line shouldn't be a defence either & AfME have let this situation drift on for far too long. They have made moves in the right direction but at a glacial pace.

Andy said:
And if this complaint doesn't get used in attempt to put people off from participating in DecodeME then I'll be surprised, there will be certain BPS supporters on social media who must have been delighted to see this news. I doubt that the complainant, assuming they are well intentioned, factored any sort of knock-on effect into their calculation of how worthwhile it actually was.
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I'm not sure it will have that effect. I hope not. DecodeME is an altogether different beast from PACE and isn't looking to "sell" a treatment. The BPS crowd will find a way to take potshots given an excuse or not and if they do it might backfire & just be free advertising? :emoji_fingers_crossed:

Copied to:
UK Action for ME - policies, actions and publications - discussion thread
 
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CRG said:
Someone in the relevant section at the Commission will review the complaint and it may go no further than some correspondence with the Charity concerned and the complainant then being given an explanation of the Law and the basis of the Commission's decision to go no further.
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That seems to be exactly what happened when someone had a go at this in 2018, resulting in a "no further action" letter from the Commission:

https://memanchester.wordpress.com/afmecomplaint/
 
TiredSam said:
That seems to be exactly what happened when someone had a go at this in 2018, resulting in a "no further action" letter from the Commission:

https://memanchester.wordpress.com/afmecomplaint/
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That makes the recent complaint even more dubious, and probably pointless, unless the intention was simply to get some bad press coverage for AfME.

Perhaps a quick explainer might help non UKers understand some of the background - being a Registered Charity is the only legal condition for having a tax exempt status in the UK, the Charity Commission is responsible for registering Charities and maintaining, albeit usually very hands off, oversight in England & Wales, while different agencies do the same job in Scotland and Northern Ireland.

The tax exemption system is generous and involves the Government matching (within a certain limit) every charitable gift with a 22% addition, this Gift Aid scheme is administered by the tax authority. Charity Law is extensive and can be arcane. So between the Commission, the Inland Revenue, local taxation and public services, and potential legal complexities, a Registered Charity can have a high bureaucratic burden to carry; adding an ill founded complaint to that burden can cause serious difficulty to an organisation that is actually operating perfectly legally. A full Commission investigation can destroy a Charity even when it has operated legally, which is in part why the Commission has a stepped approach to investigations and why a complaint has to meet a very high test to have any impact.

The Registered Charity system is by no means perfect but in a global context it is one of the most transparent and well monitored.
 
https://www.actionforme.org.uk/news/action-for-me-and-me-trust-exploring-a-merger/


August 04, 2021

On 3 August 2021, the Action for M.E. board approved a decision to explore a merger with The ME Trust after a process of due diligence started in June.

The M.E. Trust is a UK charity that offers individually tailored whole person care to people with M.E., including access to doctors, nurses, physios, nurses, counsellors and chaplains. As well as listening and caring for the needs of the whole person, the charity offers encouragement and support to families and immediate community of carers.

Both Action for M.E. and The ME Trust are frustrated by the considerable lack of provision for people with M.E. with a postcode lottery in access to specialist services and huge variability between them. There is simply not enough support for children and adults with M.E. now, let alone with an increase in diagnoses following Covid-19.

In response to this public health crisis and gaps in existing service provision for people with post-viral syndromes like M.E., we are in the process of exploring a potential merger with the M.E. Trust. This merger would allow us to combine the power of our organisations and strengthen the services we offer to people with M.E.

We will scale up the current clinician-led, holistic health and wellbeing support currently delivered by the ME Trust to fill the gaps more quickly.

Please see our FAQ document for further information.

We will continue to provide updates on our website and through our communications with members, partners and stakeholders.
 
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InitialConditions said:
Both Action for M.E. and The ME Trust are frustrated by the considerable lack of provision for people with M.E. with a postcode lottery in access to specialist services and huge variability between them. There is simply not enough support for children and adults with M.E. now, let alone with an increase in diagnoses following Covid-19.
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A scaled-up charity-led clincial care and support service cannot be a substitute for the NHS specialist services, even if it is of better quality. It would only ever reach order 1% of patients at a guess. I would much prefer the charities to campaign strongly for adequate reforms and funding of services provided by the state / NHS. In the long term, that approach will have a much wider impact on the ME/CFS community in the UK.
 
I agree @InitialConditions. I've expressed a similar concern about Emerge in Australia getting into the business of providing clinical care. Indeed I expressed a similar view when my very under-resourced regional patient support group wanted to try to do that too. It seems to be a very tempting thing for charities to do. It is much better to use scarce funds and the time of paid staff and volunteers to lift the standard of care everywhere through guidance and education.

I've skimmed the M.E. Trust website. It's pretty good - and it is certainly hard for anything about ME/CFS to be pretty good. I mean, it's all very 'holistic' but I'm sure lots of people would enjoy or at least tolerate it in order to get empathetic care. A couple of issues that suggest that the trust is still struggling with moving on from old ways of doing things though:

M.E. Trust website said:
There is, as yet, no treatment that will effect an immediate cure.
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So there are treatments that will effect a non-immediate cure then?

It is important to maintain a balance between rest and activity and pacing is important. Exercise should not be strenuous and should be taken only after medical advice. Every ME/CFS patient is an individual and will benefit from individual, tailored advice from doctors, nurses, physiotherapists and other therapists.
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It's all very 'the doctors etc know best, dear.'
 
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the FAQ document said:
A final decision to merge will be taken by both Boards of Trustees on 16 September 2021. If we proceed to merger we anticipate merging both charities and launching our combined service offer on 19 October 2021.
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As there has not yet been a formal decision to merger the charities there has not been specific consultation with supporting members of Action for M.E., as discussions were necessarily confidential. Both Boards of Trustees followed a due diligence process before deciding to proceed with exploring a merger.

Following the announcement, we will engage with stakeholders and respond to questions and/or concerns. This will inform the final decision.
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Umm "as there has not yet been a formal decision to merger the charities there has not been specific consultation with ... members". But surely once there has been a formal decision to merge(r), it's too late to consult with members in any meaningful way?

It's not my country of course, but that's only a month for AfME to consult with its members (the month when anyone actively engaged with advocacy will be trying to make the most of the new NICE Guideline). As we've pointed out, there are substantial issues with the material on the AfME website - and yet it seems to be pursuing the very complex initiative of running and expanding a parallel health care service. And, not just any service, but an 'holistic' one. If it doesn't have enough staff with enough time to even fix the advice it gives on the AfME website, how is it going to manage and expand a clinical service as well?

I fail to see how this will fix the post code lottery for provision of care in a way that improving its online materials and working with services around the regions that AfME serves would not.

The AfME venture into international advocacy that was IAFME seems to have faded away into nothing. That too emerged with enormous ambition and very little consultation. Maybe there is a lesson to be learned from that?
 
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I strongly suspect that ME trust approached AfME for help, as AYME did, when it was about to collapse.

I think that charities and other ME organisations joining forces on matters that they can agree on is positive, but I do have concerns about AfME trying to take on too much.

People are desperate to see someone who understands the reality of ME and impacts on their lives. Validation, understanding and letters supporting work adjustments or benefits are very important.

A longstanding friend with ME found that the counselling provided at Burrswood, was very helpful in coming to terms with a life-changing illness. (Burrswood hospital, now closed, is the place where ME trust "evolved" from.
 
InitialConditions said:
https://www.actionforme.org.uk/news/action-for-me-and-me-trust-exploring-a-merger/


August 04, 2021

On 3 August 2021, the Action for M.E. board approved a decision to explore a merger with The ME Trust after a process of due diligence started in June.

The M.E. Trust is a UK charity that offers individually tailored whole person care to people with M.E., including access to doctors, nurses, physios, nurses, counsellors and chaplains. As well as listening and caring for the needs of the whole person, the charity offers encouragement and support to families and immediate community of carers.

Both Action for M.E. and The ME Trust are frustrated by the considerable lack of provision for people with M.E. with a postcode lottery in access to specialist services and huge variability between them. There is simply not enough support for children and adults with M.E. now, let alone with an increase in diagnoses following Covid-19.

In response to this public health crisis and gaps in existing service provision for people with post-viral syndromes like M.E., we are in the process of exploring a potential merger with the M.E. Trust. This merger would allow us to combine the power of our organisations and strengthen the services we offer to people with M.E.

We will scale up the current clinician-led, holistic health and wellbeing support currently delivered by the ME Trust to fill the gaps more quickly.

Please see our FAQ document for further information.

We will continue to provide updates on our website and through our communications with members, partners and stakeholders.
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History repeating itself?

https://me-pedia.org/wiki/Westcare_UK
 
Art Vandelay said:
View attachment 14493

AfME's response can be found here.


(I couldn't find a version of the article online that I could link to, so I hope posting a screenshot of it is ok. Please let me know if it should be removed/edited.)
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Regulator finds no concerns at ME charity involved in discredited clinical trial
23 August 2021 by Stephen Delahunty

Action for ME was reported to the Charity Commission over its involvement in the discredited trial, but no issues of concern were identified

The Charity Commission has confirmed it did not identify any issues of concern regarding the actions of an ME charity, after investigating a complaint that the organisation endorsed a clinical trial described as a “scandal”.
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https://www.thirdsector.co.uk/regul...ted-clinical-trial/governance/article/1725339
 
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