United Kingdom: ME Association news

It may have been posted here but in case not the MEA are advertising for a part time Communications Office

see https://meassociation.org.uk/2025/01/situations-vacant-communications-officer/?

 

What a tragedy.

The people leaving their money to the charity maybe weren’t even aware of its failings.

 

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

 

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.

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.)

 

The current Communications Officer, Kelly,

https://meassociation.org.uk/mea-team/

"joined the MEA Communications team in 2024, working on social media and the MEA website."

"has a background in Digital Marketing and has worked with both businesses and social enterprises to develop and maintain their websites and social media."

"Having lived with ME for many years, Kelly has a huge amount of empathy for others living with chronic illness and is excited to be working with the ME Association to support them in the essential work they do to help people living with ME/CFS and Long Covid."
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It's unclear whether this vacancy is being advertised because the current Communications Officer is leaving or whether an additional Communications Officer is being sought. The pro rata salary isn't great but you can work from home.

 

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!

 

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.

 

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.

 

I was surprised not to be able to find this info on the Charity Commission website when I looked just now.

 

I thought the MEA had 5,000 members but I can’t find the figure again on the MEA website.

 

They don't publish the figure.

 

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.

 

Thanks, @Peter Trewhitt and @Nightsong!

I had a look at AfME's latest annual report and couldn't find how many members/subscribers/supporters they had.

 

Here's why I was asking about membership!

 

The best they can say of the benefits that members get is a quarterly magazine..really selling it chaps.

 

Ah, sorry. I'd forgotten they had started including a rough figure in their Annual Report and Accounts.