United Kingdom: ME Association governance issues

Trish said:
I suggest you write to the MEA and ask for the survey to be opened up to previous members and anyone with ME/CFS in the UK since they purport to speak for and serve us all, not just their members.
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I agree with previous members - surely one of the most important constituencies for such a review to be contacting? just like for a commercial company it would be the loyal customers that should need their product who they'd lost in the last x years.

I can sort of understand the issue with 'anyone with me/cfs in the UK' and how that could be checked on and the potential (although maybe unlikely!) of large numbers of not ill people overwhelming it. Even though I agree very much with the sentiment that lots of those ill and who it should serve haven't quite joined because of this. But how that is done? I'm interested to hear more from anyone who has experience of these reviews, like @Utsikt , to hear what tools or ways of covering this sort of things might be open to them?
 
Cinders66 said:
Which they are now going to be doing. New for this org, MEA, & very overdue, too late for me, from a charity that's seemed incapable of understanding needs and acting with due urgency
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  • produce a survey (open to all who have severe ME) a few months before the panel to ensure we cover the top topics
Cinders66 said:
More here: https://twitter.com/user/status/1899142222022344721
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Has anyone seen this survey “for all who have severe ME. supposed To take place before the meeting panel on severe ME in August please?
 
The ME Association – Governance Review: Stage 1 Announcement Autumn 2025
October 6, 2025

Some quotes. More at link.


In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed so that the organisation could plan for the future with clarity and confidence.

The review process involved conversations with staff members, existing and past trustees, a board meeting observation and document review, and a member consultation exercise to which over 500 people responded.



Areas for Development​

While the organisation has achieved a great deal, the review also identified areas where governance and leadership arrangements need to evolve to support long-term sustainability. These include:

  • Leadership and role clarity: At the time of the review, the organisation operated without a Chief Executive. Trustees were heavily involved in day-to-day operational matters, which blurred the lines between governance and management.
  • Governance structures: The charity’s systems and processes for decision-making, performance management, risk oversight, and strategic planning require development to reflect the scale and complexity of the organisation today.
  • Member engagement: While members value the organisation highly, there could be enhanced mechanisms to gather their views or involve them more systematically in shaping the MEA’s direction.



Recommendations for change​

Central to these recommendations is the need to:

  • To clarify leadership and strategic responsibilities.
  • Develop and implement a clear strategic plan with defined objectives.
  • Strengthen governance systems and policies.
  • Invest in staff support, training, and performance management.
  • Improve communication, transparency, and inclusion both internally and externally.
 
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Trish said:
The ME Association – Governance Review: Stage 1 Announcement Autumn 2025[/
October 6, 2025

Some quotes. More at link.
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If I wrote that in a report at my old job, it would mean something like: they are completely clueless at running their organisation, there’s no systematic approach to anything and people seem to in general not understand the basic requirements for their jobs. I’m not sure the leaders are suited for this task.

I’m not sure if they are even aware of how much of an admittance of failure this statement is.

Edit: this section explains the most basic tasks in managing and organisation. These are the kinds of things you would get fired for in the private sector.
  • Governance structures: The charity’s systems and processes for decision-making, performance management, risk oversight, and strategic planning require development to reflect the scale and complexity of the organisation today.
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Fainbrog said:
Had they allowed non-members to respond to the survey, it would likely have told them a lot more, such as why many of us are no longer members.
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Certainly would. A big own-goal not to allow this and to include a question on whether or not the respondent was a current member.

(I still think you have the best name on the forum, Fainbrog! Makes me smile every time I see it. :thumbup:)
 
Fainbrog said:
Had they allowed non-members to respond to the survey, it would likely have told them a lot more, such as why many of us are no longer members.
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The MEA in generally seems to exclude sufferers a lot. Most of its questionaries ask if you have been diagnosed with ME (most patients as know have not) and then if its no you get unceremoniously dumped out. They don't even want to hear from those with bad local NHS services. They certainly don't want to hear from those that aren't subscribed to them due to the myriad of issues and harm they are causing. I really don't understand why so many ME patients are still giving them money.
 
Trish said:
The ME Association – Governance Review: Stage 1 Announcement Autumn 2025
October 6, 2025

Some quotes. More at link.
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Well, that sounds very sensible, and an enormous step forward.

Trish – thanks for highlighting this critical information.

for those of us using smaller phones, it's very hard to read a lot of pro text, which appears very small. So it would be good either to flag it in someway other than the "quote device, so the text doesn't get shrunk – or not to use a smaller font in the auote system (replying to you as the author, and also as a moderator).
 
Wow, formal language and management speak but brutal.

My interpretation:
Leadership and role clarity - There is no leadership and there are conflicts of interest
Governance structures - The processes in place to do the basics any governance structure should are not present
Member engagement - Membership are not being listened to

I like this because it is focused on the structures. This isn't about individual failure, although there obviously has been, it is organisational failure. They really need to get someone professional in who has a proven track record and can sort this all out. How this is done and who decides who is capable is going to be the challenge I think.
 
Sasha said:
Does the MEA need a CEO?
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Well, it needs clear leadership. In an organisation of that size, a CEO-type role is the obvious way forward.

Utsikt said:
If I wrote that in a report at my old job, it would mean something like: they are completely clueless at running their organisation, there’s no systematic approach to anything and people seem to in general not understand the basic requirements for their jobs. I’m not sure the leaders are suited for this task.
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Yep, that's pretty much what I read from it. Hopefully MEA did too; it's not difficult to grasp that it's a distinctly unflattering picture.
 
Simon M said:
for those of us using smaller phones, it's very hard to read a lot of pro text, which appears very small. So it would be good either to flag it in someway other than the "quote device, so the text doesn't get shrunk – or not to use a smaller font in the auote system (replying to you as the author, and also as a moderator).
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Good point. I've removed the quote boxes from my post.
 
Sasha said:
Does the MEA need a CEO?
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I feel it had been clear to pretty much everyone applying a vaguely sensible eye to the MEA org structure and many of the decisions made (bar the MEA themselves obviously) that they needed a CEO or at the very least an employed senior leadership role (not recruited from within) separate from the board. But, they persisted with the thinly veiled criticism of a.n. other charity for employing an 'expensive' CEO. Worked out really well for the MEA in the long run.
 
Fainbrog said:
I feel it had been clear to pretty much everyone applying a vaguely sensible eye to the MEA org structure and many of the decisions made (bar the MEA themselves obviously) that they needed a CEO or at the very least an employed senior leadership role (not recruited from within) separate from the board. But, they persisted with the thinly veiled criticism of a.n. other charity for employing an 'expensive' CEO. Worked out really well for the MEA in the long run.
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I think they are haunted by a time many years ago when they had a CEO and things ended badly? was it Val Hockey? I'm no expert and have just picked up on things over time but I remember that following this there was perhaps care taken to make sure they couldn't be 'taken over' easily or there was some backstop type thing - maybe someone can fill in more on this?

ah here is one link I have found: https://pmc.ncbi.nlm.nih.gov/articles/PMC1150994/

I don't know whether things like eg people's beliefs etc were part of the consideration and mix there (and of course are valid, going forward that is always a difficult consideration of how to make sure that inadvertently a charity doesn't for example get controlled by someone with bps views?)
 
In my opinion, they need to fill two positions.

The CEO should be someone with medical and scientific expertise that has demonstrated a commitment to scientific rigour.

The COO (chief operating officer) would be responsible for running the day to day and doesn’t require formal competence in the area (although healthy scepticism would be welcome).

We need the CEO to have medical and scientific competence to be able to overrule all of the more or less sound ideas from everyone else. And to speak with authority publicly.
 
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