United Kingdom: ME Association news

I would think the most fair board would consist of a representation of the patient community.

So at least a few women and also a few patients/carers.

 

This is importabt because whilst this interacts with the idea of a ‘refresh’ ie removing ‘old’

someone needs to be working on the result of that being better and if you end up rushing recruitment into a role that hasn’t been changed (if that’s one of the issues with recruiting and it working)

well another thing with ME is how easy it would be to end up with someone who has problematic views but not realise -

and if you are changing lots if people in a short space of time that risk multiplies and makes it a very vulnerable ‘target’

as people will know the pressure is on and those checking will be getting exhausted etc compared to if you have years to check out one replacement

 

And the role needs to be accessible for enough of those to be able to feel they could apply and actually do it well

 

And using creative ways to enable that representation, such as each trustee having their own small panel of patient advisors who have valuable knowledge and experience to contribute, but aren't able to serve themselves.

There are numerous models that could be tested if the will to do it was there. Inclusive approaches like this have the potential to earn a charity a lot of kudos with patients, service providers, and potential collaborators/co-funders.

 

This is the tiny notice tucked away on p71 of the Autumn issue of ME Essential magazine.

Full AGM details planned to be published in the Winter issue - which doesn't appear to have been received yet by the Association's members. Even if the magazine arrives in tomorrow's post they will have missed the "21 days' clear notice" of full AGM details.

So not known yet whether there are any trustee elections this time or how the motion that has been called around including a clause in the governing document about length of trustee service is going to be handled, ie, will there be a postal vote for that, or any other business tabled for discussion; or whether it will be possible to join the meeting via Zoom or similar platform. Hopefully someone who is a member can fill us non members in when the magazine does arrive.

Back in 2005, they printed the AGM ballot slip on the reverse side of the carrier sheet with the recipient's address on that was sent out with the magazine. How we laughed to hear that some people had thrown that in the bin after unwrapping their copy...

 

Am I the only paying MEA member remaining within this community?

So is it “last one out turns off the lights”?

Will be sure to update when the Winter magazine arrives.

 

Thank you, Steve.

 

Quick question - animals need to move. Do the animals who have ME/CFS need to move?
Are we speaking about animals (including humans) but disregarding the fact that there’s no evidence that other species of animal gets ME?
So is it saying that everyone and everything which doesn’t have ME needs to move? Or is it saying that everyone and everything, regardless of ME status, needs to move, even though that’s contraindicated for pwME?
The thing which differentiates pwME from other humans and other animals is that…they’ve got ME.

 

A letter written by a carer of a person with severe ME on behalf of a group of carers of people with severe ME to the ME Association

"Trustees have a legal duty to act in the charity’s best interests and to avoid exposing the charity to undue risk. The reckless content of this editorial reads almost as a resignation from a disgruntled chair and this is reflected in the insensitive tone. That this has escaped editorial oversight generates wider questions regarding due diligence.

"In view of the above, we would hope that the chair will now step down. Failing this, we would envisage that the trustees will terminate his appointment as per article 15.3 of the charity’s Articles of Association and issue a statement clearly distancing the MEA from the views expressed in the editorial."

https://twitter.com/user/status/1859316631635210435


Alexis
@alexis___me
I wanted to share this excellent letter sent to the @MEAssociation by a group of carers for those with ME. The author has said they are happy for people to use it as a template and share it/send their own to the MEA.
7:23 PM · Nov 20, 2024

 

Note in the above template letter, my reading of the governing document is that 26 (b) is for removal of a director. I think 15.3 is for removal of a director from appointment as chairman, not from directorship, per se.


Page 10:

Removal of a director by the Board of directors
26.
(...)
(b) If two of the Board of directors propose a vote of no confidence in another director, he or she can be removed provided a simple majority of the Board agrees.


ARTICLES OF ASSOCIATION OF THE MYALGIC ENCEPHALOPATHY ASSOCIATION LTD
https://meassociation.org.uk/wp-con...-Association-of-ME-Association-11.03.2014.pdf

 

I’d like it if there were a letter/petition to sign

 

Template in Google docs
https://docs.google.com/document/d/1yCNxI79BicF9Md7QkWzIX8vEcEu6IJ-vwy0OXz3nf3I/edit?tab=t.0

 

It could still be them but without Riley (who in any case is approaching 80 and may be considering retiring within the next few years).

As long as they have a minimum of 4 elected directors the board would remain quorate.

My guess is they won't stand him down over this editorial issue which would require a majority vote of no confidence from the other board members or ask him to stand down, voluntarily, but he'll stand down voluntarily next year when the anger has died down.


There is also this clause in their Articles of Association but I do not know whether that could be used to remove a director. In order to give notice of a special resolution to the membership, an EGM may need to be called:

Members’ reserve power
7.
7.1. The members may, by special resolution, direct the directors to take, or refrain from taking, specified action.

​

Clause 27 (a) through (i) lists various situations that would warrant termination of a director's appointment but I doubt any of those would apply.



I am not a lawyer but I think it might be difficult to apply "(h) he or she brings the company into disrepute" in relation to concerns over the content of this editorial.

Mr Riley is a former lawyer.

 

I don't think they're in control of the timing at this point - not if they don't want to be haemorrhaging members. In politics (in what used to be normal politics, anyway), a leading politician who deeply offended their own party's voters would have been gone by now.

Delay sends a powerful message of its own, and patients who are willing to vote with their feet can send one right back.

 

Would they care, though, if even a few hundred members were to give notice to the MEA that they want their £18 a year subscriptions cancelled?

Years ago, when the charity's finances were so precarious there was talk of possibly having to wind up the organisation, member subs were an important source of income. They will presumably have garnered more members over the last 4 years due to extending the org's purpose to include people with Long Covid. They are currently sitting on several million pounds. Losing some members may not have such a great impact on their finances as it might have done when they were limping along on.

I'm not saying members shouldn't cancel their subscriptions or not renew their subscriptions (and they will lose their vote if they do). I would do it myself, if I were a member, but it may not bother the board that much. There will still be many members oblivious to this issue and who weren't concerned enough to complain directly or publicly when the Autumn issue first came out several months ago.

 

That's a good point, but I was thinking of their reputational damage as an organisation that purports to represent PwME but would have had PwME cancelling their membership in droves.

 

I agree it's not a good look for any charity and whilst we feel at the centre of it, it's niche and nuanced and may not seem such a big issue to those not heavily involved in ME/CFS social media.

It does bother me that those cancelling their subscriptions this week will lose their AGM vote and that might be important for the 9 December AGM motion that Elizabeth Klaar has proposed. If I were a member, I think I'd want to hang on and see how that motion is being handled for the AGM and whether there is going to be a postal ballot on that motion. There may also be trustee nominations to vote for or against, and we don't know yet whether any of the trustees are due to retire by rotation but are choosing to re-stand for election this time; or if a trustee had been co-opted, are now standing for election by the membership. So I'd probably cancel after the AGM. But people must do what they feel is right for them.

The AGMs understandably do not attract a high attendance so postal votes are important and they have to be sent in early, to be received by at least 7 clear days before the meeting takes place (so you cast your vote before the meeting and ahead of whatever is discussed on the agenda or raised from the floor at the meeting).

 

Just to be clear: I do consider that following his "editorial" and his response to the many complaints about that "editorial" he should stand down voluntarily. If he won't stand down, the board should exercise its right to remove him from both his appointment as chairman, and from directorship. If the board won't remove him, I think the members should take whatever action open to them, as members, to have him removed.

I also think the rest of the board culpable for permitting that "editorial" to be published in the first place and for considering his "apology" statement and their responses adequate.