United Kingdom: ME Association news

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]

 

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.

 

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).

 

Exactly.

 

Totally agree, hugely important, and an ongoing weird absence of activism on the part of the MEA.

 

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?

 

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.

 

personally, I think a charity the size of the ME Association should be working through its staff primarily, with trustees providing oversight. At the moment, the trustees appear to be micromanaging the charity and making all significant decisions. I’m sure that was necessary when the organisation nearly went bust 20 years or so ago and they kept it going, but surely they should not be providing governance rather than micromanagement?

 

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.

 

Given the MEAssociations very heavy moderation of its facebook page comments I imagine the forum is a place where any criticism would be equally removed. A forum doesn't fix any of the existing communication issues which all originate from an organisation that refuses to acknowledge and properly address criticism and lacks transparency in its actions, decisions and seems to too often be working against patient interests.

 

Yes, when I worked in charities, even if there were very involved trustees (passion project type) they weren’t involved daily. And nor should they be. That’s not the role.

 

They have made it their role because they won't employ "an expensive" CEO or similar executive/management roles:


https://meassociation.org.uk/about-the-mea/policies-and-documents/

Question:

Why doesn’t the charity have a CEO?

Answer:

We believe that trustees offer a better way of running the ME Association. The trustees provide the leadership of the charity, giving it strategic direction and ensuring compliance.

CEO’s can be a mixed blessing and certainly not the only way to run a charity or any other institution. Beloved by Executive Recruitment Agencies and Management Consultants, CEO’s have not always proved to be the right answer. In both the charity and commercial fields, there have been numerous examples of failure. Many years ago, The ME Association employed a CEO. The result was that the charity almost folded but thanks to trustees and the membership it was saved and has grown ever since. The charity will always look at the option of using a CEO and we have amongst our staff several people who could do that job exceptionally well. But for the moment, the present way the charity works with ‘hands on’ trustees has proved successful. Change for change's sake is foolhardy, incremental adaptation is, we believe, the route to take.

Our Articles provide for a maximum of 8 trustees. Any larger and decision making becomes more diffuse and lengthier. Our trustees work alongside operational staff, which is unusual for a charity, but the system works well. Trustees do not just turn up every two months for a meeting and go away.

We advertise for new trustees within our membership (note , it is a requirement that trustees are members) and widen that search where there are no suitable applicants.

We are always welcoming new talents and innovation, and we hope that the wider ME Community will come forward with their ideas.

The makeup of our trustees vary from time to time and the ratio of male to female will change accordingly. If you have talent and the passion to help people with ME/CFS then whatever protected characteristic you have will not matter. Equality within the ME Association is paramount.

The reasons why trustees resign are many and various. Disclosing those reasons in certain cases would involve the disclosure of personal data and we would be in breach of the Data Protection Act if we did so. We rarely end a trustee’s membership of the Board but the Articles of Association prescribe reasons for doing so. Most trustees resign because they have new work, family responsibilities or find that their own health requires them to rest and recuperate.

 

But three male trustees have been re-standing for election since 2003 and 2004.

 

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]

 

Very lengthy periods of service by elected trustees has not always proved to be the right answer, either.