United Kingdom: ME Association governance issues

With just 11 clear days before 9 December, surely the MEA will issue a statement postponing the AGM, today?

I've posted again on MEA Twitter/X with little expectation of any response.

While CS has been busily replying to non AGM and non Neil Riley issue comments on FB, no-one seems to be replying on their Twitter/X account about anything and many of the posts have been set so you can't reply to them.
 
So we have a pattern of BPS supporting articles from Neil Riley disguised as personal anecodotes, going back decades, and now a pattern of disrespectful and insulting responses to criticism. What's not to like!

Seriously, how has the MEA kept him on as Chair of Trustees, and from the description of how the MEA works, CEO in all but name.
 
"4 Maintain a respectful tone."
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I hope this gets quoted back at whoever described people signing a measured, cogently argued letter as "baying for blood".

"Instead we have an [sic] terrific group of trustees ... Trustees are supported by an experienced team of full and part time staff who are committed to supporting the M.E. community."
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It's genuinely puzzling that none of them seem to know how to communicate in a professional manner. People who deal with the public by insulting or patronising them don't usually survive their first week in a job.
 
I have for a while intended to rejoin the MEA as my membership lapsed some years ago simply because I did not have enough energy to renew, back in the days of posting cheques.

More recently I was debating whether or not this was an organisation I wished to support, though I did wonder if being a member might make it easier to promote change. If their AGM is postponed until next year, I am wondering if UK folk joining now could influence what happens then.
 

"Your governing document should also tell you when to hold the AGM and how much notice you need to give. If it does not, you should give reasonable notice, such as a minimum of 3 weeks."​



"Other types of general meeting
"Membership charities may also hold extraordinary general meetings or special general meetings if you need to...
Your governing document should tell you how to call these types of meetings, for example the amount of notice you must give."​


The 2005 Articles of Association did include clauses about calling for EGMs and gave the notice period as 14 clear days' notice (as opposed to 21 clear days' notice for calling of an AGM).

From the 2005 Articles of Association:

10. Calling of Extraordinary General Meetings
10.1 The Board of Trustees may call an extraordinary general meeting whenever they wish. Such a meeting must also be called if three members of the Board of Trustees or 5% of the members of the Charity request it.
​

The 2014 Articles of Association (which is the current governing document) includes no clauses on the calling of EGMs, who can call them, or how much notice is required to be given to the membership of an EGM.
 
Nightsong said:
While looking to see if MEA had issued any further response to this I came across this Bluesky post containing an image of another curious Riley article, apparently from their newsletter way back in 1989, that I had never seen before:

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There is no complete archive on the MEA's website for AGM trustee election results so I don't know how many times Neil Riley has come up for retirement/rotation and has re-stood for election.

But it's disturbing that the membership had continued to vote him in again.
 
Nightsong said:
While looking to see if MEA had issued any further response to this I came across this Bluesky post containing an image of another curious Riley article, apparently from their newsletter way back in 1989, that I had never seen before:

View attachment 24326
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This is very interesting nugget that has been uncovered. So many people try this strategy of a different surrounding might positively effect their ME and it rarely does anything. Barry Sheene did this moving to Queensland and it did nothing for his physical state. You have to wonder if people have a full blown post infective state and at some point in the first 18 months it clicks off and then people didn’t have ME/CFS at all in reality.
 
Holinger said:
This is very interesting nugget that has been uncovered. So many people try this strategy of a different surrounding might positively effect their ME and it rarely does anything. Barry Sheene did this moving to Queensland and it did nothing for his physical state. You have to wonder if people have a full blown post infective state and at some point in the first 18 months it clicks off and then people didn’t have ME/CFS at all in reality.
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Sheene then cured himself with cold baths. Apparently.
 
Holinger said:
This is very interesting nugget that has been uncovered. So many people try this strategy of a different surrounding might positively effect their ME and it rarely does anything. Barry Sheene did this moving to Queensland and it did nothing for his physical state. You have to wonder if people have a full blown post infective state and at some point in the first 18 months it clicks off and then people didn’t have ME/CFS at all in reality.
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In the earlier stages of my ME at a time when I was mild I did find an improvement when I was on holiday, though it was hard to say if this was just doing less in a relaxing environment with meals being provided rather than any actual change in my ME. Always any subjective sense of improvement did not long survive returning to every day life.

I do know of one more dramatic example of a friend who had a holiday on a Greek island and felt so well that after the holiday she left her job and her home and sold up everything to raise enough money to return to the island for six months. Like me this was in the first few years of her ME. It seemed an amazing success and at the end of the six months she believed her self recovered. However on returning home and getting a locum job within two weeks the ME symptoms returned with a vengeance leaving her unable to work and with no assets and no access to employment rights or possible ill health retirement, with what money that was in her pension pot trapped for thirty years till she reach pension age.

Such anecdotes are interesting but unhelpful in planning how to deal with a real life illness, indeed as in the case of my friend they could result in individuals being significantly disadvantaged.
 
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