United Kingdom: ME Association governance issues

Peter W's @mediumwhite updates from the meeting:

The are signs of change being discussed about the @MEAssociation AGM, but we are nearly 1 hour in and are still doing introductions. I remember the adage - change either happens very fast or never.

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Charles Shepherd, Martine Aisnworth and now Mike Mitchell now diggin in to support Neil Riley.

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The response to the call for Neil Riley's resignation was, in much view, two fingers.

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katski
@katkatski
·
14m
Thank you very much for asking these questions on behalf of pwME. It's much appreciated and I look forward to hearing the answers, as I'm sure many others do. Thank you

Peter W
@mediumwhite
I don' t really feel that that commitment was upheld.

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under_transformation
@_trans4m8tion
·
1m
I think it is the first time they actually have to listen to feedback and respond! Clearly not used to running a meeting with external stakeholders and the transparency it needs.
 
I've asked: Has the board said whether it intends to post a recording for membership and non members?

Peter says: No

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under_transformation
@_trans4m8tion
·
9s
Replying to
@dxrevisionwatch
and
@mediumwhite
No word on that. But finally an acknowledgement by the chairman that he wished he never published that editorial. I truly wish the
@MEAssociation
all the best and hope they succeed, but it really needs to embrace change and be super careful about comms

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it really needs to embrace change and be super careful about comms
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It wouldn't need to be super careful about comms if it actually understood the issues.

Homeless charities don't have to take care not to publish disparaging, patronising and tone deaf editorials about unhoused people, because it would never occur to them to write them in the first place.
 
Dx Revision Watch said:
I've asked: Has the board said whether it intends to post a recording for membership and non members?

Peter says: No

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under_transformation
@_trans4m8tion
·
9s
Replying to
@dxrevisionwatch
and
@mediumwhite
No word on that. But finally an acknowledgement by the chairman that he wished he never published that editorial. I truly wish the
@MEAssociation
all the best and hope they succeed, but it really needs to embrace change and be super careful about comms

------------------------------------------------
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He did publish a very similar one that got terrible reception previously and was well aware, by the sentences written, that this would sometimes too.
 
Peter Trewhitt said:
So presumably the MEA are treating today’s meeting as a constitutional AGM?
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Evidently.

As a non member, I wasn't permitted to observe via Zoom and I don't know yet whether anyone raised the unconstitutional status of this meeting from the floor.

Edited to add: In retrospect, it would have been worth investing £18 for the privilege. I could have gone as my husband's or son's proxy, had they been members.
 
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https://twitter.com/user/status/1866160258868977681


Elisabeth Klaar | Oak Tree Studio @lammas_leaves

Nicky
@NickyProctor
and I have just attended and spoken about our motion/plan at the AGM. We will be issuing a proper response on our website (http://motionmea.wordpress.com) in the coming days. For now we are very disappointed at lack of clear plan from the
@MEAssociation

The Chair, with support from other trustees, successfully played the victim / misunderstood editorial writer card. The meeting ended with with platitudes. We want a clear plan, with deadlines, to professionalise the organisation. A plan that doesn't rely on exhausted sick people forcing the MEA to do the sensible thing. We appreciate and thank everyone for taking part in an exhausting meeting, unnecessarily long in our view. In particular
@rachelleese84
and
@fionangreg
and
@mediumwhite
who spoke about other areas of controversy at the MEA.

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Peter W @mediumwhite
·
11m
The tone from Neil Riley was sacharine sweet. It felt like a deliberate strategy to disarm their critics. Personally, I dislike having smoke blown up my arse. Regarding the substance: good that the MEA have committed to spending their money, but the trustees want to cling on.

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Long thread of posts here by Nic @LilNic000 reporting on the meeting so will just post the first one. Worth reading all Nic's posts.

https://twitter.com/user/status/1866124328271765644


Nic @LilNic000
They have disabled the chat function and have asked people to raise hands to ask questions. Which is totally inaccessible to people like me who are severe and struggle with speech and need to type. #MEAGM
 
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Copied post
https://twitter.com/user/status/1866172381620003123


ME Association
@MEAssociation

ME Association Post AGM Statement Thank you to all our members who joined the ME Association’s AGM on Monday 9th December 2024 at 2pm, we value your contribution. Read in full here: https://meassociation.org.uk/agms #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #Research #AGM2024

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For ease of access, I've put the statement into a PDF and also attached a copy:

https://dxrevisionwatch.com/wp-content/uploads/2024/12/me-association-post-agm-statement.pdf
 

Attachments

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MrMagoo said:
...Not enough applications from members to be a trustee(except you don’t need to be a member to be a trustee)they love a straw man.
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You do need to be a member in order to stand for election to the Board.

Prior to the changes to the Articles in 2005 individuals nominated for trustee elections did not need to have been admitted to membership but were expected to become members following successful election to the Board.

Following the changes in 2005, they did need to be members.

From the current (2014) Articles:

The Make-up of the Board of Directors

21. The Board of directors of the company shall consist of:-

(a) not less than four, nor more than eight persons, elected by individual members; all such persons being current members of the company and whose subscriptions are up to date.​
 
From all I have read of the AGM, it just reinforces my view that the MEA is a basket case, a lost cause.

Blame everyone else but themselves and the fact that the other trustees have (as suspected) rowed in behind Riley (one apparently saying his wife didn’t see anything wrong with the article) just says it all really. So far out of touch with reality. Am glad my money is going nowhere near them and if I do go to my local support group in future I will be withholding the donation to the MEA that they ask for attending.

Glad I took a break from all the online stuff over the last week, was not good for my sanity and wastes energy I can ill afford to use.

I take issue with the suggestion of abusive comments online (that old chestnut). Nothing I saw in the various discourse on Twitter at least, was abusive (to take a twist on NR own words, you’d know if it was abusive and, many would likely call it out if it was). Those of us asking for his resignation were dogged, but polite in doing so from what I saw.

But, am eternally grateful to those who have been keeping the pressure on and attended today.
 
MrMagoo said:
Nobody minded Neil’s article, until it went on social media. Apparently.

They are just dinosaurs, and Action For ME are modernising.
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Agreed, I’ve not been a huge fan of AfME at points, but they are light years head of the MEA right now and appear to be continuing to accelerate away from them. Their AGM was open to all and tackled some of the difficult stuff head on. That said, I hope they have looked on and learned something from this debacle too.
 
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