United Kingdom: ME Association governance issues

TiredSam said:
It's going to take someone at the MEA with the time and inclination to check what Riley's been telling them and how he's been dealing with this. That's a big ask, especially if their personnel resources are as stretched as they are at S4ME. We can talk about trustees resigning from various positions, but there may not be anyone else to replace them. How many candidates did S4ME find for our recent committee election?
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Given I have pushed them to share Neil Riley’s emails to me and insisted that someone else reply, hopefully someone will actually read our email chain, where it is obvious he is continuously shifting his legal arguments and ultimately trying to insist upon the letter of the law without any thought about how the MEA comes across.

Given both @Trish and myself have directed the MEA to this site, hopefully someone will also take the trouble to read this thread.

I have no idea what action they will take, and given the amount of work Neil does and has done over sometime for the association they quite rightly should not jump to unconsidered responses. However they can no longer pretend that the association is unaware that there is something to address.
 
I've been meaning to note what happened with New Zealand's national charity, ANZMES, as a cautionary tale.

ANZMES, that is the governing committee and most members, were very much tied to their Medical Advisor, essentially the only GP active in treating CFS in the country. They did not allow anyone to criticise the Medical Advisor and did not allow anyone onto the governing committee who did not agree that everything the Medical Advisor said was right. Membership numbers dwindled and they struggled to get people along to AGMs.

ANZMES was left a significant bequest, possibly more than one, and so now has significant funds. They have recently changed the structure of the organisation away from one that allows members to have a vote on the governing committee. The governing committee now have complete control of the organisation and can choose if and when new members of the committee are appointed and who they are. Members are now essentially 'supporters' - they are told what has been decided.

The process of changing the structure of the organisation was signalled, along with misinformation suggesting that recent legislation changes had made remaining an organisation with members voting for the committee impossibly onerous. The only pushback against this I saw was on this forum. There appeared to be almost no interest in stopping the committee making the change. The result is an organisation, claiming to be New Zealand's national ME/CFS organisation, that has little accountability to the people it represents.

Apathy about charity governance can lead to bad outcomes.
 
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Hutan said:
I've been meaning to note what happened with New Zealand's national charity, ANZMES, as a cautionary tale.

ANZMES, that is the governing committee and most members, were very much tied to their Medical Advisor, essentially the only GP active in treating CFS in the country. They did not allow anyone to criticise the Medical Advisor and did not allow anyone onto the governing committee who did not agree that everything the Medical Advisor said was right. Membership numbers dwindled and they struggled to get people along to AGMs.

ANZMES was left a significant bequest, possibly more than one, and so now has significant funds. They have recently changed the structure of the organisation away from one that allows members to have a vote on the governing committee. The governing committee now have complete control of the organisation and can choose if and when new members of the committee are appointed and who they are. Members are now essentially 'supporters' - they are told what has been decided.

The process of changing the structure of the organisation was signalled, along with misinformation suggesting that recent legislation changes had made remaining an organisation with members voting for the committee impossibly onerous. The only pushback against this I saw was on this forum. There appeared to be almost no interest in stopping the committee making the change. The result is an organisation, claiming to be New Zealand's national ME/CFS organisation, that has little accountability to the people it represents.

Apathy about charity governance can lead to bad outcomes.
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What a tragedy.

The people leaving their money to the charity maybe weren’t even aware of its failings.
 
Yes. And I don't think it's a case of the people on the committee being terrible people, or not wanting what is best for people with ME/CFS. I think it's just that they valued harmony and ease of operating over openness to accommodating differing views; the comfort of group think.
 
Hutan said:
I've been meaning to note what happened with New Zealand's national charity, ANZMES, as a cautionary tale.

ANZMES, that is the governing committee and most members, were very much tied to their Medical Advisor, essentially the only GP active in treating CFS in the country. They did not allow anyone to criticise the Medical Advisor and did not allow anyone onto the governing committee who did not agree that everything the Medical Advisor said was right. Membership numbers dwindled and they struggled to get people along to AGMs.

ANZMES was left a significant bequest, possibly more than one, and so now has significant funds. They have recently changed the structure of the organisation away from one that allows members to have a vote on the governing committee. The governing committee now have complete control of the organisation and can choose if and when new members of the committee are appointed and who they are. Members are now essentially 'supporters' - they are told what has been decided.

The process of changing the structure of the organisation was signalled, along with misinformation suggesting that recent legislation changes had made remaining an organisation with members voting for the committee impossibly onerous. The only pushback against this I saw was on this forum. There appeared to be almost no interest in stopping the committee making the change. The result is an organisation, claiming to be New Zealand's national ME/CFS organisation, that has little accountability to the people it represents.

Apathy about charity governance can lead to bad outcomes.
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Thanks for the good summary, it does indeed sound spookily pertinent.

It takes me a while sometimes but the penny is now dropping on bits that have been on this thread coming together regarding the 'names' that have been registered potentially, and I think on another thread a while ago about how charities are encouraged to 'work together' because there is an aim to not have lots of different charities all doing the same thing.

I don't know how to put it in the context of the charity stuff, but from the non-charity business background you start to think about 'barriers to entry' for competitors

I assume the theoretical 'additional regs' on charities is due to if you are going to have the protection/insulation from competitive forces this entails then you theoretically also need to be pretty strong-handed on making sure that there is some inside the processes for those who are the 'chosen ones' having to not be 'supply-led' but actually genuinely catering to that 'constituency' the regulator has designated there shouldn't be lots of different entities 'competing over' by offering different things (and people vote with their feet in which they choose) but are 'voting with their vote and voice' within the organisation.

Yet does it actually work that way? ie is it a 'regulated market' where mainly the regs mainly being held up are those on the entry points (it isn't a monopoly because I guess we have a few charities), and not on the rest? I'd be interested to hear more (whichever thread) as I say I'm just putting snippets together and might be 2 + 2 = 5
 
TiredSam said:
...If you're the only lawyer in the room and your colleagues are just happy that they've got you to deal with all that legal stuff, you can get away with bluff and bluster for years. Even now, his MEA colleagues may be thinking "I don't have time to get my head round all this, it's Riley's department, and why are those militant activists at S4ME still giving him such a hard time?"
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The Board does include another lawyer: Mike Mitchell, although his area of practice was maritime law specialising in "disputes arising from ship casualties – collisions, groundings, oil pollution, and salvage". But he is presumably capable of interpreting Articles of Association and Company and Charity Law. They certainly need someone with expertise in salvage.

We can talk about trustees resigning from various positions, but there may not be anyone else to replace them. How many candidates did S4ME find for our recent committee election?
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Better one man down than continue with Riley. Their governing document permits the Board to operate with "not less than four" trustees. Riley's standing down would leave them with five full Board members - so they could still operate with five.

(They are permitted a maximum of eight elected trustees and three co-optees - twelve trustees in total. They could look for co-optees immediately and advertise for nominees through the election process.)
 
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Hutan said:
I've been meaning to note what happened with New Zealand's national charity, ANZMES, as a cautionary tale...They have recently changed the structure of the organisation away from one that allows members to have a vote on the governing committee. The governing committee now have complete control of the organisation and can choose if and when new members of the committee are appointed and who they are. Members are now essentially 'supporters' - they are told what has been decided.

The process of changing the structure of the organisation was signalled, along with misinformation suggesting that recent legislation changes had made remaining an organisation with members voting for the committee impossibly onerous. The only pushback against this I saw was on this forum. There appeared to be almost no interest in stopping the committee making the change. The result is an organisation, claiming to be New Zealand's national ME/CFS organisation, that has little accountability to the people it represents.

Apathy about charity governance can lead to bad outcomes.
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Indeed.

The UK's Action for ME (AfME) used be constituted so that only trustees had a vote; the rest of the membership were "subscribers".

Edited to add: AfME's current Articles of Association is the version adopted on 8 February 2018 (Page 2 of the Filing History):

https://find-and-update.company-information.service.gov.uk/company/02906840/filing-history?page=2


All of the changes to the ME Association's governance since 2003 has seen the vast majority of members who have participated in the voting process approve whatever recommendations the Board has been presenting to them - even approving changes to the Articles which were designed to give the Board tighter control over who can be nominated or nominate themselves to stand in trustee elections.

Back in 2004, the then Chair of the Board, the late Christine Llewellyn, told an associate of mine at the time, that being a charity trustee would be great if it weren't for the members.

Should this current MEA Board decide that having members is a source of continual annoyance and more trouble than they are worth and were to call a General Meeting recommending that the membership vote to approve a Special Resolution to change the constitution to one that has a board of trustees who are the only voting members and the current voting membership changed to "subscribers" it would not surprise me if the majority of the membership (it would require 75% in favour) were to blithely vote in favour of relinquishing their membership status.

Anyway, thanks for telling us about the change for ANZMES, Hutan, interesting and disheartening that the members voted to approve such a retrograde decision.
 
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Sasha said:
Can someone remind me how many members the MEA has, please? I know it's been mentioned upstream but I can't find it.

Do we know how many members or supporters AfME has (does it have members, or just donors?)?

Thanks! :)
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A few years back I obtained a figure for the number of members AfME had. (I'll see if I can find the emails or posts.) I had cause at the time to mention this number to Charles Shepherd, who responded in a manner that suggested that (at that point) the MEA had a comparable number or possibly slightly more members than AfME.

You might expect given the MEA now presents itself as a support org for people with Long Covid that the number of members might have increased over the last four years. On the other hand, apart from the magazine and the ability to vote in trustee elections, special resolutions etc quite a lot of MEA publications and other materials are available without charge and available to non members and membership of a patient org may not appear to offer much.

Since under Company Law, the Members' Register has to be made available to anyone who requests to view it, I think it should also be law that a charity organisation has to declare its past year's membership in its annual report and accounts.
 
Dx Revision Watch said:
Since under Company Law, the Members' Register has to be made available to anyone who requests to view it, I think it should also be law that a charity organisation has to declare its past year's membership in its annual report and accounts.
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I was surprised not to be able to find this info on the Charity Commission website when I looked just now.
 
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Nightsong said:
The 5,000 figure comes from the annual accounts / reports:

https://find-and-update.company-information.service.gov.uk/company/02361986/filing-history

"We have around 5,000 paid-up members who receive our quarterly magazine ME Essential" is the phrase used in the 2023, 2022, 2021 and 2020 reports.
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For historical comparison:

In 2013-14, AfME had 5,129 members in total, with 109 members having had the membership fee waived.
In 2014-15, AfME had 4729 members with 71 members having had the fee waived.


In December 2016, I was told by a member of the MEA's board that the MEA were keeping membership at a level in excess of 4,000 over the previous few years; that there is a constant turnover with around 250 new members joining in a year but then members who do not renew their membership leaving, so figures fluctuate.
 
For comparison, in May 2008, Third Sector journalist, Paul Jump, reported that AfME had 7,630 members [1].

(A figure which was understood at the time to have been falling for several years.)

1 http://www.thirdsector.co.uk/action-membership-row/governance/article/807171

Action for ME in membership row
07 May 2008 by Paul Jump

Action for ME has defended itself after a public protest from a group of disgruntled members who believe they are being denied full membership rights.

[Image caption] Protest: some members want more rights

The charity, which supports people with ME - also known as chronic fatigue syndrome - said that its 7,673 fee-paying members were not entitled to vote at AGMs because they were not members in a legal sense.

A Charity Commission spokeswoman said it had dismissed a number of complaints on the issue between 2003 and 2005. "We were satisfied that there had been a misunderstanding," she said.

The dissident members claim that the charitable company, which broke away from the ME Association in 1994, is acting unconstitutionally because it does not hold AGMs or represent members' views.

A group of about 16 demonstrated last week outside a conference at the Royal Society of Medicine, where the charity's chief executive, Sir Peter Spencer, was due to give a speech. They claimed the board of AfME had become dominated by people who believed ME was a psychological condition. Most ME sufferers, they said, believed it was physical.

"Only by re-establishing the democratic link between AfME and its membership will AfME gain a mandate to speak and act on behalf of us," said Ciaran Farrell, a member of AfME. "Filling in a questionnaire is not the same as being able to vote on policy or elect trustees who see things your way."

Richard Evans, trustee and company secretary of AfME, said the charity's website made it clear that "being a member of AfME, the organisation, is not the same as being a member of Action for ME, the company limited by guarantee, as a company law matter".

He said the charity's latest AGM had been held in February and that trustees, who are the only legal members, had been invited.

A spokeswoman added that AfME required the majority of its trustees to have had ME, and that all but two of the current 10 board members were either sufferers or carers. She said the disgruntled group had been campaigning against AfME for many years.

Governance expert Judith Rich said charities should hold regular meetings with their memberships regardless of whether it was legally required. "That is the only way charities can be sure they are truly representing the views of their members," she said.
 
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