United Kingdom: ME Association news

Even if one wanted to give the MEA as an organisation the benefit of the doubt in relation to the initial editorial the ‘non apology’ and the apparent failure of the organisation to address fallout meaningfully are deeply worrying.

 

I know a lot of younger people with full time jobs who are trustees somewhere or another. I didn't realise it until spotting it on their CV. Many are women, some had kids as well.

But the obligation/size of committment for those positions sounds very different to the MEA (and there are other reasons why you'd get a staff member to write strategy with trustees for scrutiny). Basically you want the biggest field so are picking people who definitely are the right people (in ME knowledge and in some knowledge about a business area they are overseeing) and in a position workload wise to do good scrutiny?

Aside from the ME side of things, which is the most important aspect/qualification to me, it seems like from the bits I've heard there is potential the way these positions are designed then it precludes so many demographics that it is a vanishingly small demographic existing today. You don't even really have many who retire 'early' these days like decades ago. Most jobs are full time. Most people can't afford to put too many hours into something that isn't paid whether they are working, part time or full time. Then there is the illness thing on top where it becomes inaccessible to most there unless the needs of the different severities are properly understood in putting together ways of working.

 

I’m not sure there is an answer to this - which is a valid question and right for you to ask.

The current board, by their responses, have so far not demonstrated, outwardly at least, that they understand the problem; why many of us were so upset by what was written and the response.

That’s a big problem, one that has to start with imo Riley stepping down to demonstrate that he gets it and the board has to accept his resignation to show that they understand.

Beyond that, I guess the board needs to then have a period of reflection and reform with, one would assume, a temporary chair handing over to a permanent leader in due course.

Without that change, being open with the ME community, the damage will be hard to overcome as least with many.

All that said, maybe they think they can just ride this out, suck up losing a few members’ fees and carry on as they have..but, there will be immense scrutiny from people with ME of their actions and those comments on Twitter and FB posts can’t stay off forever.

But, as others have been focused on, they do need to follow process for the AGM, which could be a further issue that could land them all in hot water as trustees. I’m not sure where things are with this, but would be amazed if they didn’t conveniently postpone the meeting.

ETA: and, frankly, who would want to step in and take on being chair and leading change - it's a bit of a basket case of a charity after all with a sizeable PR issue with many of its patient community. Maybe the fat lady is starting to sing..

 

I'm told the magazine did not arrive today. If it were to arrive tomorrow, that leaves only 16 clear days' before 9 December (supposed to be 21).

Yes, if Riley stepped down or was removed they would need an Acting Chair.

Trustee David Allen became an Associate Trustee in 2012 and was appointed a Full Trustee and Deputy Chairman in 2023.

But Charles Shepherd or Ewan Dale could also take on the role of Acting Chair. Martine Ainsworth-Wells has been a trustee since February 2013. Michael Mitchell since May 2024.

Unclear who the Company Secretary is at the moment. I don't think it is obligatory to have a Company Secretary or that the CS is a member of the board. Gill Briody, a former HO office manager, was the Company Secretary at one point.

 

These roles within the board are quite fluid:

Chairing of directors’ meetings
15.
15.1. The directors may appoint a director to chair their meetings.
15.2. The person so appointed for the time being is known as the chairman.
15.3. The directors may terminate the chairman’s appointment at any time*.
15.4. If the chairman is not participating in a directors’ meeting within ten minutes of the time at which it was to start, the participating directors must appoint one of themselves to chair it.

​

*My reading of 15.3 is that the directors may terminate the director's appointment as chairman at any time, not terminate the chairman's appointment as a director at anytime. (See Clause 27 for reasons for removing a director.)

 

Been doing some idle wondering about what it would take to persuade me to rejoin.

It's probably quite an ask...


1) Current chair steps down or is stepped down.

2) Board announces something along the lines of:

• a year-long consultation with members about the MEA's key priorities going forward, and funds for a temporary contract for someone with experience of managing third sector change to lead it;
  
  
• at the end of that, the intention to appoint a CEO on at least a part time basis to deliver that change;
  
  
• in the meantime, a project to trial a group of people with ME/CFS to act as advisors to the board, which meets online; a member of staff has responsibility to moderate that and compile reports.

...so I'm not expecting to be filling in the forms anytime soon.

 

This would be a good way to start rebuilding confidence.

 

Indeed. In which case, their concerns have been vindicated.

The alarm bells went off for me as soon as I saw the article, never mind the non-apology that followed. Even if it takes a long time to play out, this is a key moment for the charity. When you reach one of those, the best thing to do is see it as an opportunity and grab it with both hands.

 

They may have, but, given the organisation put out the statement it did, they don’t appear to have enough sway or have a critical mass to affect change yet, else they would surely have been at least more conciliatory to the concerns being raised.

 

Holding email seems to have been received by Alexis re the open letter;

https://twitter.com/user/status/1859928274425827505

 

Agree, it does seem odd.
Maybe it’s a sign of some much bigger inner turmoil where none of the other trustees wants be associated with this mess so get a staff member to send a polite holding message (but of course that’s not how being a trustee is supposed to work).

Or, by sending from a generic email, the board don’t then have to engage further/directly with those pesky sick people.

So much of this just stinks.

 

This.

 

https://twitter.com/user/status/1859986833322725851


Dx Revision Watch @dxrevisionwatch

MEA's AGM is scheduled for 9 December. According to your governing document, "21 clear days' notice" is required. You've already missed that deadline. Is AGM notice and full details still being sent out in Winter issue ME Essential? When will members receive? Are you postponing?

 

They can. They can remove him as chair at any time, and remove him from appointment as director via a vote of no confidence.

Chairing of directors’ meetings

15.
15.1. The directors may appoint a director to chair their meetings.
15.2. The person so appointed for the time being is known as the chairman.
15.3. The directors may terminate the chairman’s appointment at any time.
​

Removal of a director by a General Meeting

25.
(a) A general meeting of the company may remove any director before the end of his or her period of office whatever the rest of these articles or any agreement between the company and the director may say.

(b) Removal can take place only by the company passing an ordinary resolution saying so. At least 28 days' notice must be given to the company and at least 21 days' notice to the membership. Once the company receives such notice it must immediately send a copy to the director concerned. He or she has a right to be heard at the general meeting. He or she also has the right to make a written statement of reasonable length. If the statement is received in time it must be circulated with the notice of the meeting. If it is not sent out, the member may require it to be read to the meeting.​

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.

​

Unclear whether: "The members may, by special resolution, direct the directors to take. . .specified action" would cover removal from office.

Members’ reserve power

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

 

https://twitter.com/user/status/1860079808916652372


Dx Revision Watch @dxrevisionwatch
Additionally, what arrangements are being put in place to make the AGM accessible to as many #pwme and carers as possible? Will there be a quiet space where people who need to take a break or lie down can rest? Will the meeting be accessible via Zoom or similar platform?
9:55 PM · Nov 22, 2024