United Kingdom: ME Association news

Sasha said:
What does this mean in practice, regarding the issues that have been discussed on this thread and the efforts of people here to understand them and get them resolved?
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I guess it means they know they have made a mess of their governance and Articles, and are putting a positive spin on needing to get an expert in to help sort out the mess.
 
Capital reserves
The ME Association has substantial capital reserves. This has been obtained, first, by the generosity and commitment of our members and supporters. Secondly, the commitment of our staff and trustees over the last 20 years. Thirdly, through the prudence of the board of trustees over that time.

However, the purpose of a charity is to use its money for the furtherance of its aims and not to leave it in a bank account. The trustees are well aware of this and some time ago we set out a 5-year strategy to use that capital reserve to further the charity's objectives. To this end we looked at new projects that would benefit the lives of people with ME/CFS. We spoke about these at the recent AGM.

As the chosen projects come on stream, they will need financing, and we will use our reserves to do that. That will result in a substantial reduction of the reserves to the level that is appropriate for our charity and which level is guided by the Charity Commission’s recommendations on reserves. It sounds easy to spend money and it is. But to spend money wisely and bring about an improvement to the ME Community is hard. Potential projects need detailed planning and project management. Pilot schemes must be tried, staff recruited To make this happen we have established a special projects team, led by a full-time Special Projects Manager, and they are reviewing a selection of projects which require substantial funding. A feasibility study relating to the benefit and cost effectiveness of these projects is underway.

One study that is underway covers health and social care. We have launched a project whose aim is to engage with healthcare clinicians and decision-makers to implement the NICE Guideline in their services. We started this by talking to the Integrated Care Board (ICB) of Buckinghamshire, Oxfordshire, and West Berkshire. This ICB is now working on a review of existing ME/CFS and LC specialist services with a view to providing integrated services in each of the 3 counties. We are also engaging with 5 other ICBs in England and the 7 Health Boards in Wales that are developing similar services.

At the end of October 2025, we will assess what we have achieved and look at how the project could be extended into other areas of the country, by expanding the healthcare team, and providing a bridge between patients and healthcare services. This would essentially embed healthcare into the ME Association and will require significant additional funding for at least a further 5 years. That’s why we need the capital reserves that we hold so that projects like this can be funded and bring real benefit to us all.
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It looks to me like they are saying they intend to spend the bulk of their reserves on projects with local health boards on developing their ME/CFS services to be NICE compliant. I think they should be open about what they are actually doing. If it means working with BACME, and aiming to get existing therapists based services to to their version of NICE (pacing up etc), and/or working with Sarah Tyson and Pete Gladwell on their version of a toolkit and PROMs, heaven help us. I notice the Tyson project doesn't even get a mention anywhere, yet it was being funded in 2023 and 2024.

if they really are persuading local health boards to provide a full range of doctor led services including for severe and very severe ME/CFS, I'd be happier, though it shouldn't be up to charities to make the NHS behave itself, and the MEA should be more open about what they are advising and who is doing the advising.

I note from another section the MEA is planning to set up a forum.
 
Trish said:
It looks to me like they are saying they intend to spend the bulk of their reserves on projects with local health boards on developing their ME/CFS services to be NICE compliant. I think they should be open about what they are actually doing. If it means working with BACME, and aiming to get existing therapists based services to to their version of NICE (pacing up etc), and/or working with Sarah Tyson and Pete Gladwell on their version of a toolkit and PROMs, heaven help us. I notice the Tyson project doesn't even get a mention anywhere, yet it was being funded in 2023 and 2024.

if they really are persuading local health boards to provide a full range of doctor led services including for severe and very severe ME/CFS, I'd be happier, though it shouldn't be up to charities to make the NHS behave itself, and the MEA should be more open about what they are advising and who is doing the advising.

I note from another section the MEA is planning to set up a forum.
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This is very dispiriting.

I am entirely unclear on what aims exactly MEA has. So I wouldn’t like to call the above project a failure in terms of MEA attempting something and failing to achieve it. It keeps the charity in the room which may be priority. May be counted as a successful outcome by MEA.

But in terms of advancement of our cause I am certain MEA will fail via this endeavour.

To attempt to influence the NHS rehabilitation services to provide better or less harmful care by working with them, from MEAs comparatively low status position is futile. It’s an impossibility. A waste of resources.

Fatigue clinics as with all the NHS and all the government bodies have had plenty of time to adapt the offer in
line with official updated evidence evaluation from NICE guideline 2021. So ignorance and amateurism are not the impediment here. If it were I am not sure MEA would be best placed to deal with that. It’s clear the obstacle is intransigence. Across the board.

Besides which the rehab industry is for rehab. Not for managing untreated illness.

I feel if MEA go ahead with this they will be failing to make the best use of their funds on behalf of people with ME gaining better treatment.
Looking at ME advocacy history both recent and long this type of collaboration is more likely to stall progress towards better care than to push this forward.
 
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Governance
We are committed to undertaking a comprehensive review of our current Articles. That review will look at the Code, the Charity Commission’s Model Articles and any other source of good practice. To this end we shall consult widely and transparently including recruiting an independent charity governance professional to advise the charity. We have the same aspiration of all our members, namely, to ensure that the ME Association is run to the highest standards and continues in its charitable mission.
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"To this end we shall consult widely and transparently..."

How about starting with transparency right now by providing those who have requested copies of documents relating to the 2014 General Meeting and Special Resolution(s) with the documents they have asked for, instead of telling them they are "not entitled to inspect them" because they are over ten years old.
 
Trish said:
...I note from another section the MEA is planning to set up a forum.
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Well I do hope it's a good deal better run that the forum they had in 2002-2003.

As I've mentioned before, anything considered "ME political", that is, critical of the Association, got deleted. They subsequently introduced pre-moderation of messages, which meant you'd write a new post or a reply to an existing post and it would sit in a queue until Tony Britton or the late Christine Llewellyn (who went on to become a member of the board of Trustees and served as Chair for a while) decided whether or not to let it through to the forum. This resulted in disruption to the continuity of discussions and there was rarely any rationale given as to why a message had been rejected.

Also, I've not mentioned this before, but moderation at times was very lax. At one point, Christine was sole moderator. A user of the forum posted unfounded and libellous claims about me and the nature of my relationship with a younger man. Her posts stood on the forum, unaddressed, for around a couple of weeks. In the end, I had to telephone Tony Britton and get him to take the posts down as Christine had not acted, despite my requests for these libellous allegations to be removed. Extraordinary that posts critical of the Association were not allowed, but defamatory allegations about another member had been allowed to stand for a couple of weeks.

If they do launch a forum, I shall not be joining it.
 
There is more than one “voice” in that statement. Hence you can tell there’s some “spin” in it.
“Your charity” stood out. It has never felt less like “my” charity that it does this year, starting with Tyson and ending with the AGM.
I also disliked the end asking for people to come forward to apply to be trustees, yet the text said you must have the ability to work daily alongside our teams. Pretty big “don’t bother applying if you have ME” there.
 
If they don't allow critical posts on the forum (at least within the usual bounds of moderation), there's no point in setting it up.

It'd have a place, I guess, for people who need to grumble about their situation and get support from others, but that's already available in ME/CFS-focused social media groups. And some of those have the advantage of being local, so people can swap knowledge about the accessibility of individual buildings, availability of parking in certain locations, etc. Stuff that's actually pretty useful.

[Edited to tidy up]
 
Kitty said:
If they don't allow critical posts on the forum (at least within the usual bounds of moderation), there's no point in setting it up.

It'd have a place, I guess, for people who need to grumble about their situation and get support from others, but that's already available in ME/CFS-focused social media groups. And some of those have the advantage of being local, so people can swap knowledge about the accessibility of individual buildings, availability of parking in certain locations, etc. Stuff that's actually pretty useful.

[Edited to tidy up]
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Yes, I really don't see what an MEA run forum would have to offer that can't already be found elsewhere. It was different 22 years ago, when there were few UK forums available and little in the way of social media.
 
It's also a significant financial investment. The infrastructure might not cost much, specially if you have a trustee with the skills to do it, but the amount of staff time it could soak up is considerable.
 
Kitty said:
It's also a significant financial investment. The infrastructure might not cost much, specially if you have a trustee with the skills to do it, but the amount of staff time it could soak up is considerable.
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Did they consult their members, first, to establish whether members think a forum would be useful and moreover, a good use of the org's funds and staff? And if not, why not?
 
If they genuinely do consult widely about, and get high-quality professional advice on governance that would be welcome, as they have got themselves into a real mess of late.

On the NHS services project: I don't see any acknowledgement of the extraordinary deficiencies of the "specialist services", which are not specialist and often are not even services. Being NICE-compliant is their responsibility; the MEA should be pushing for them to become genuinely useful and supportive, which would mean a complete overhaul of everything they do. Perhaps the MEA could consult on what pwME actually want to see from such a service before proceeding? (I don't know what their intentions are here but focussing on care plans or holistic, personalised therapping or some of the other things technically compatible with the NICE guideline would be a serious error.)

And what puzzles me about the forum announcement is what niche the MEA hopes to fill. There are significant patient communities on Xitter and Bluesky. S4ME always has quality discussions around science and advocacy. There are subreddits of all kinds. AfME apparently runs an "ME Friends Online" forum for uncritical peer support. There are volunteer or local organisation-run groups and Facebook pages where people can talk about things available in their areas or the nicest spots for a wheelchair-accessible outing: as a national charity, MEA couldn't really become a repository of that kind of local knowledge.

So, where's the "gap in the market" for a new forum? If they wanted to spool up additional online outreach efforts the obvious place to do so would be on the newer social media platforms used principally by younger people (e.g. Tiktok).
 
Nightsong said:
On the NHS services project: I don't see any acknowledgement of the extraordinary deficiencies of the "specialist services", which are not specialist and often are not even services. Being NICE-compliant is their responsibility; the MEA should be pushing for them to become genuinely useful and supportive, which would mean a complete overhaul of everything they do.
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Totally agree, hugely important, and an ongoing weird absence of activism on the part of the MEA.
 
Nightsong said:
If they genuinely do consult widely about, and get high-quality professional advice on governance that would be welcome, as they have got themselves into a real mess of late.

On the NHS services project: I don't see any acknowledgement of the extraordinary deficiencies of the "specialist services", which are not specialist and often are not even services. Being NICE-compliant is their responsibility; the MEA should be pushing for them to become genuinely useful and supportive, which would mean a complete overhaul of everything they do. Perhaps the MEA could consult on what pwME actually want to see from such a service before proceeding? (I don't know what their intentions are here but focussing on care plans or holistic, personalised therapping or some of the other things technically compatible with the NICE guideline would be a serious error.)

And what puzzles me about the forum announcement is what niche the MEA hopes to fill. There are significant patient communities on Xitter and Bluesky. S4ME always has quality discussions around science and advocacy. There are subreddits of all kinds. AfME apparently runs an "ME Friends Online" forum for uncritical peer support. There are volunteer or local organisation-run groups and Facebook pages where people can talk about things available in their areas or the nicest spots for a wheelchair-accessible outing: as a national charity, MEA couldn't really become a repository of that kind of local knowledge.

So, where's the "gap in the market" for a new forum? If they wanted to spool up additional online outreach efforts the obvious place to do so would be on the newer social media platforms used principally by younger people (e.g. Tiktok).
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Yes you’re absolutely right on the NHS every word. I hope you copy and paste this into a letter for them that you publish here too.

I think there is a gap in the market for people who aren’t and don’t want to be on facebook, or instagram or anything else meta, maybe a sign posting to all the other platforms that you mention here would be something someone could do. But with MEA’s history around engagement with people with ME they’re not the ones to be going anywhere near this kind of thing.

The most cynical explanation for MEA deciding to set this forum up is that it’s for exactly that reason that it appealed to them, so as to manage the opposition. Control the narrative.

Or perhaps it’s more random than that, some in the office or online suggested a forum and they thought great! That’ll get people off our backs about not doing enough stuff. But even then why was that the most appealing idea?
 
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Ash said:
in terms of advancement of our cause I am certain MEA will fail via this endeavour.

To attempt to influence the NHS rehabilitation services to provide better or less harmful care by working with them, from MEAs comparatively low status position is futile. It’s an impossibility. A waste of resources.
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I agree with what @Trish said about transparency, and I think we should wait to hear what they have achieved before passing judgement.

I live in Wales where there is next to nothing in the way of services. ADDED that might Make things a lot easier for getting something appropriate set.

From what I have heard, there have been positive developments, and I look forward to finding out what the end result will be. Certainly, I think it’s worth trying, given how bad things have been in Wales, and I’m glad someone is trying to improve the situation.
 
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Simon M said:
I agree with what @Trish said about transparency, and I think we should wait to hear what they have achieved before passing judgement.

I live in Wales where there is next to nothing in the way of services. From what I have heard, there have been positive developments, and I look forward to finding out what the end result will be. Certainly, I think it’s worth trying, given how bad things have been in Wales, and I’m glad someone is trying to improve the situation.
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You might be right. I hope that you are.

But I am post judging rather than prejudging. I am afraid going by this last year’s performance that MEA don’t actually understand what’s needed or the extent of what’s harmful about the current (non) services.

Additionally I am afraid that a collaboration of any nature (if that’s what they mean which like you say hasn’t been made fully clear) between MEA and NHS especially BPS services has potential to give cover to the NHS and tick engagement boxes or lead to MEA deciding for us what is okay and what is not.
 
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Ash said:
You might be right. I hope that you are.

But I am post judging rather than prejudging. I am afraid going by this last year’s performance that MEA don’t actually understand what’s needed or the extent of what’s harmful about the current (non) services.

Additionally I am afraid that a collaboration of any nature (if that’s what they mean which like you say hasn’t been made fully clear) between MEA and NHS especially BPS services has potential to give cover to the NHS and tick engagement boxes or lead to MEA deciding for us what is okay and what is not.
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Mind you, people including myself have expressed disappointment that MEA didn’t write to all the NHS trusts as part of an organised public campaign to bring them into line post 2021 NICE and expose the ‘specialist services’ reluctance/refusal to update their offer.

So it maybe that this project is in response to that. But I do not think one can work together with the NHS from below and get results. I think publicly chastising the leadership who won’t get in line is needed, post the inquest into Maeve’s death seems like the time to strike if ever there was one.


[Edit:for missed out words]
 
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Ash said:
Mind you, people including myself have expressed disappointment that MEA didn’t write to all the NHS trusts as part of an organised public campaign to bring them into line post 2021 NICE and the ‘specialist services’ reluctance/refusal to update their offer.

So it maybe that this project is in response to that. But I do not think one can work together with the NHS from below and get results. I think publicly chastising the leadership who won’t get in line, post the inquest into Maeve’s death seems like the time to strike if ever there was one.
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Agreed
The talk about services implies they are everywhere which they certainly aren’t and this point is never highlighted. In my view they should have focused on the areas with no services and tried to influence a new model as @Suffolkres and folks in that area have been trying for years rather than shoring up BACME which with the Tyson work they seem to be getting more and more entrenched with.
 
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