United Kingdom: ME Association news

I don't know how many of us are on Twitter these days but thought I'd add this to the discussion because it's relevant.

A couple of people from within the ME community have tabled a motion to MEA to be discussed at their AGM. My jaw was on the floor reading it.

It's a lot to take in but long and short of it is MEA isn't doing what they're meant to and there's a lot (millions) of funds unspent.

My dissatisfaction with MEA has been expressed here and other places. With their AGM coming up and taking into consideration this motion, previous behaviours (Professor Tyson) and what I read from their magazine (ME Essentials) where Neil Riley suggests movement like a walk in the garden might be a risk but he thinks it's fine, I'm going to support this motion. If others want to get involved please do.

I'm angry about how this Professor Tyson mess was handled and ignored!

(I respect Charles Shepherd so much. I don't want to see him go. I'd like him to take a different position at MEA so his knowledge and experience can stay)

More info:

Here's the link to the twitter post: https://twitter.com/user/status/1857348450834157677

 

https://find-and-update.company-information.service.gov.uk/company/02361986/officers?page=1

Dr Charles Shepherd has been a Trustee since 2003.
Neil Riley (now 79) since 2004.
Ewan Dale since 2004.

Richard (Rick) Osman served as a Trustee from September 2002 to 2023.

 

I suspect that both Elisabeth Klaar (Proposer) and Nicky Proctor (Seconder) are likely to find their membership of the organisation terminated.

 

Do you think it would prompt a crisis for the MEA if they do?

If all they do is put forward a legitimate motion in a manner conforming with procedure, it certainly ought to.

 

https://meassociation.org.uk/wp-con...-Association-of-ME-Association-11.03.2014.pdf

ARTICLES OF ASSOCIATION OF THE MYALGIC ENCEPHALOPATHY ASSOCIATION LTD

 

A legitimate request in 2004 for a copy of the Members' Register (which would have hypothetically enabled the requestor to trigger an EGM) resulted in the Board refusing to release the Members' Register to the requestor.

 

Do not underestimate the resolve of CS to maintain the status quo.

 

It wasn't so much the leadership.

An organisation expelling people for asking reasonable questions should surely have the membership questioning what's going on and whether they're happy with it. A few well-targeted social media posts could potentially cause significant damage and division. Would they risk that?

I don't know the answer, but if I were a trustee or a senior officer, I'd see it as a flashing red signal.

 

https://twitter.com/user/status/1857386735736430672


NickyProctor @NickyProctor
And that’s exactly the point isn’t it Nic! All we know is 9 Dec. No timing given, no idea if it will be on zoom or similar? We have been told details are in the printed @MEAssociation
member mag going out in the post from 21 Nov. Will share on here when we see details.
11:34 AM · Nov 15, 2024


According the MEA's Mem & Arts:

Notice of General Meetings

33. An annual general meeting must be called by giving at least 21 clear days’ notice in writing. Other meetings of the company must be called by giving at least 14 days clear notice. These notices must specify the place, date and time of the meeting and the business to be discussed. Notice of the meeting must be given to all those members entitled to receive it and to the reporting accountants or auditor of the company. Notice of the right of a member to appoint a proxy must be given in the notice

​

Posting out notice of the AGM in the MEA's mag on 21 November is cutting it tight for "21 clear days' notice" before "9 December".

 

From the Mem & Arts:

38. A resolution put to the vote of a general meeting must be decided by a simple majority on completion of voting cards.. Postal votes are allowed provided they are received by the company at least five working days before the holding of a general meeting takes place. Any votes received after will be null and void.​

I've asked whether it has been confirmed that the motion has been added to the agenda for discussion at the AGM meeting. Elizabeth confirms that it has been added (via an email from the Chair of Trustees).

 

So if the AGM is scheduled for 9 December, and if there is to be a postal vote, that will not leave much time for members to return their vote.

Edited to add: I've asked Elizabeth if the Chair of Trustees has confirmed whether there is going to be a members' postal vote for motions discussed at this forthcoming AGM. That is, are voting slips being sent out with ME Essential or whether the outcome of a motion to make changes to the Mem & Arts will depend on the votes of those attending the AGM in person.

The 2005 EGM proposing a number of constitutional changes to the Mem & Arts proposed by the BoT, themselves, did go out as a postal vote [1][2].

1 Notice of 2005 EGM and postal vote: https://dxrevisionwatch.com/egm-notice-june-2005comp/
2 Notice of revised date for 2005 EGM: https://dxrevisionwatch.com/wp-content/uploads/2024/11/mea-egm-letter.pdf

 

Elizabeth is unable to confirm whether there is going to be a postal vote for this forthcoming AGM.

 

As some of you know, I was barred from membership of the MEA in 2004, so I don't have a vote and I don't see copies of ME Essential. When the December issue of ME Essential has been sent out, could someone please post a copy of the AGM notice - thanks.

 

A few MEA members may disagree with the MEA, perhaps.

But from previous contentious actions or statements by the MEA it is clear the MEA (and AFME) have Member-Fans, who never disagree with the charity, but only ever support them, whatever the MEA charity does (and doesn't do), and never hold the charity to account, and probably never will.

.

 

I'm curious to know what it is that he's protecting?

He complained that MEA didn't fund research enough when he was booted out but has much improved since he returned? Asking honestly.

 

Did he say that? The period he was “booted out” was quite short (6 months? 1 year?). Action for ME under Chris Clark were a disaster then (sample: wrote letter supporting Peter White’s application for funding for PACE Trial). The ME Association under Val Hockey looked like it was going to go a similar direction e.g. the medical advisor who replaced Charles said something like she wouldn’t disagree with the statement ME was all in your head (or something similar like she wouldn’t say ME was mainly a physical condition). I and I think most patients around at the time were happy the trustees took control from her.

Paying Val Hockey’s salary did take a lot of their resources at the time.

 

And Hockey's redundancy package soaked up much of what little was left.

He's protecting the power he has enjoyed as a longstanding trustee of an initially very small and static board within an organisation that since Hockey's departure, has operated without a CEO or similar senior management. He's been in a position to steer policy for two decades.

For years, the line was that the MEA's finances would not run to employing a CEO. That is not the case anymore. Irrespective of whether the MEA can afford a senior management position, having shepherded the charity for many years he could have stepped down from the board and reprised his position as medical adviser - paid or unpaid. (He was on a circa £30K pa contract back in 2003, when his contract was terminated.)

But no, he has preferred to stay on the Board of Trustees - for 21 years. I suspect that if the MEA were to take on a CEO, he would resign from the board and leave the organisation, altogether.

 

Oh, and the changes made to the MEA's Mem & Arts since 2005 have ensured that the existing board controls very tightly who can and who cannot become trustees.

 

But he does not need to be a trustee in order to produce materials or give interviews - he could be retained as a paid for or unpaid medical advisor.

And he is part of a BoT that is now sitting on several million for which the org appears to have announced no plans.