United Kingdom: Action for ME (AfME) news

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).

 

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.

 

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.

 

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.

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.

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?

Copied to:
UK Action for ME - policies, actions and publications - discussion thread

 

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/

 

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.

 

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.

 

https://twitter.com/user/status/1422912707611832325


Copied to create a new thread in the petitions forum here

 

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.

 

History repeating itself?

https://me-pedia.org/wiki/Westcare_UK

 

Regulator finds no concerns at ME charity involved in discredited clinical trial

https://www.thirdsector.co.uk/regul...ted-clinical-trial/governance/article/1725339