United Kingdom: ME Association governance issues

Hutan said:
That's such a good point bobbler. Presumably Neil Riley has someone on hand to make sure that he and the rest of his family have a meal to eat in the evening, regardless of whether he has used up all his energy on his daily shower.
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I noticed that too. If I get dressed and go for a walk in my garden in the morning then go back to bed for the rest of the day, there's no one to get my and my daughters' meals, or do the other things that need doing in a household of two sick people.

Oh, and by the way, Mr Riley, a large proportion of people with ME/CFS live alone, have no help, and don't have the privelege of owning a garden.

He hasn't a clue.

I think I recall he says in his non apology that he talks to lots of people with ME/CFS. Perhaps he should listen to them instead.
 
I've been reflecting on the impact of the publication of this editorial on my view of the MEA and I've realised that it has completely destroyed my trust in it as an organisation.

This means that I can't trust any of their choices of what research to fund, or any of the information resources that they put out. It means I daren't donate to them in case they use that money to push this narrative.

To convince me otherwise, they're going to have to do better than a forced public apology.
 
From the "Patrons, Trustees, Advisers, Staff" page: https://meassociation.org.uk/mea-team/

Emma Jefferies is Communications and Social Media Lead

"...Emma joined the ME Association in March 2021 as Social Media Specialist and has taken on the role of overseeing all communications and social media content."​

There are two "Communications Officers": Rachel and Kelly.


I wonder whose decision it was to turn off comments for the Twitter/X and Facebook posts for Neil Riley's statement - the board's decision, Emma Jeffries' or whoever is managing and moderating the Twitter/X and Facebook accounts this week?

I raised a query on the Twitter/X account on 17 December regarding a significant error in an MEA article concerning Nomenclature and SNOMED CT and have received no response my post, so I don't know who is managing the Twitter/X account at the moment.


Caroline Cavey is Magazine Editor and Literature Designer. She works freelance.


Not directly related to this most recent Neil Riley article issue, but I do question what value to the organisation and to the membership the concept of patrons brings. What have HRH The Duke of Kent and Etain, Lady Hagart-Alexander achieved for the organisation over the years they have been "patrons"?

There are currently six trustees - all of them bar one are men. There is additionally one female "Associate Trustee". I would like to see more women on the board.

They could have up to 8 elected trustees plus 3 co-opted trustees.
 
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There are some comments on Facebook regarding the Riley statement posted under a different post flagging the "MEA guide to activity and energy management and pacing"

https://www.facebook.com/meassociat...3gt5ZA4cRXedHqaY2bazqwT6tEJpMtGl?locale=en_GB

See several constructive critical comments from

Sam Shine
Claire Lorraine
Kirsty Sivapalan
Tracy Meggitt
Ruth Braham

One of the posters is screenshotting these posts as comments are known to have been deleted from MEA Facebook threads in the past.
 
I was curious to compare the MEA's trustee demographic with that of Action for ME:

The current board of the MEA consists of 6 trustees (5 men, 1 woman). I am not including the female "Associate Trustee" as my understanding is that this is a probationary role and this lady's name is not listed on Companies House as a Director.

Of the 5 men, 3 have been trustees for over 20 years. Their ages, according to Companies House, are 61, 69, 70, 73 and 79. Their average age is 70.4. With the female trustee, the average age is 67.3.

MEA is hurtling towards governance by old, white men.

The MEA's governing document allows for not less than 4, and up to 8 trustees, elected by the membership. The board is permitted an additional 3 co-opted trustees = 11 trustees in total.

In contrast: Action for ME has 12 trustees - 7 men and 5 women; age range 39-66. Average age just over 56. MEA cannot claim that younger people and women do not want to take on the role of trustee within ME orgs.
 
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Dx Revision Watch said:
There are currently 6 trustees and one "associate trustee". (I think this is a trustee doing a probationary period, a role which the BoT introduced some years ago.)

Their current Mem & Arts permits:

The Make-up of the Board of Directors
21. The Board of directors of the company shall consist of:-
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Dx Revision Watch said:
I maintain that Charles (21 years a trustee), Neil (20 years a trustee) and Ewan (20 years a trustee) prefer to keep the board small. It means that currently, half of the current 6 trustees have held these positions for over 20 years.
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Thanks for both replies which are interesting and helpful.

Dx Revision Watch said:
Don't think it would prudent, anyway. Who knows who AfME might take on as CEO in the future. Chris Clark (to 2006) and Sir Peter Spencer (2006-2012) didn't exactly distinguish themselves, did they?
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I know patients are divided over a merger, and I know many share your concerns and are against it because of them.

My own view is that it would be better, certainly in the medium term, but it's not a deal-breaker for me. If patients generally don't want it then fair enough.

I keep repeating it (and this is for general consideration and not directed at DxRW) but the only solution to this is to try to replace the trustees or at least elect enough trustees to form a majority. And for me that would be a deal-breaker of any proposed merger down the track. Trustees are needed at both organizations who have experience of the illness and who are trusted by patients (both, not either/or).

The obvious problem is that most patients are just not well enough and/or have not been well enough to get the necessary training and experience to run a charity. It seems to me that both charities should address this problem by either having a PAG with explicit powers of veto over eg a new CEO/medical adviser or by having trustees split, with patients in the majority and others doing the work, or something similar.

As for the MEA, perhaps it is time to write to Neil, Ewan and Charles and say that, first, they need to plan a succession anyway and, second, they are at serious risk of destroying their legacy and the credibility, trust and respect they, in particular Charles, have built up over the last 20 years.
 
The reply is clearly written by a staff member not by Neil Riley. It focuses entirely on sympathy for an individual's distress and suggesting use of their helpline, while not apologising at all for Riley's awful article. Not good enough.
 
JohnTheJack said:
Thanks for both replies which are interesting and helpful.



I know patients are divided over a merger, and I know many share your concerns and are against it because of them.

My own view is that it would be better, certainly in the medium term, but it's not a deal-breaker for me. If patients generally don't want it then fair enough.

I keep repeating it (and this is for general consideration and not directed at DxRW) but the only solution to this is to try to replace the trustees or at least elect enough trustees to form a majority. And for me that would be a deal-breaker of any proposed merger down the track. Trustees are needed at both organizations who have experience of the illness and who are trusted by patients (both, not either/or).

The obvious problem is that most patients are just not well enough and/or have not been well enough to get the necessary training and experience to run a charity. It seems to me that both charities should address this problem by either having a PAG with explicit powers of veto over eg a new CEO/medical adviser or by having trustees split, with patients in the majority and others doing the work, or something similar.

As for the MEA, perhaps it is time to write to Neil, Ewan and Charles and say that, first, they need to plan a succession anyway and, second, they are at serious risk of destroying their legacy and the credibility, trust and respect they, in particular Charles, have built up over the last 20 years.
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To me, this feels potentially existential for MEA now given the tacit approval by the other trustees for what has been published is the original article, the non-apology and the non-apologies that seem to be going out today.

There is such catastrophic damage being done to the reputation that it being quietly subsumed by AfME or simply wound up and its funds being distributed to other charities may be the only way out.

Of course there will be those who haven’t heard about this, maybe it’s a storm in Twitter cup, but, with 800+ people signing an open letter etc. this thing has grown legs and is walking on its own now.

This is something a relatively small charity would struggle to survive from and people are sharing that they will stop their membership.
 
Dx Revision Watch said:
I was curious to compare the MEA's trustee demographic with that of Action for ME:

The current board of the MEA consists of 6 trustees (5 men, 1 woman). I am not including the female "Associate Trustee" as my understanding is that this is a probationary role and this lady's name is not listed on Companies House as a Director.

Of the 5 men, 3 have been trustees for over 20 years. Their ages, according to Companies House, are 61, 69, 70, 73 and 79. Their average age is 70.4. With the female trustee, the average age is 67.3.

MEA is hurtling towards governance by old, white men.

The MEA's governing document allows for not less than 4, and up to 8 trustees, elected by the membership. The board is permitted an additional 3 co-opted trustees = 11 trustees in total.

In contrast: Action for ME has 12 trustees - 7 men and 5 women; age range 39-66. Average age just over 56. MEA cannot claim that younger people and women do not want to take on the role of trustee within ME orgs.
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It flags something about the way the job is designed vs what is needed to be a trustee / they are looking for that is making it difficult to get women ?

and of course maybe age and other diversity aspects (which could include living situation/ financial background etc being relevant for me/cfs too)

then there is the vicious circle of if someone if outnumbered then getting heard can be hard etc
 
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Nightsong said:
MEA have funded some dubious things of late. If I were on a funding board I would probably have said no to both the "dysautonomia protocol" and the ear-clip "vagus nerve stimulator" projects as well as the PROMs project.
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Ear clip Vagus nerve is Physios For ME’s project isn’t it?

If the MEA aren’t giving a large amount of funding to Chris Ponting next, then they can go and implode as far as I’m concerned.
 
Dx Revision Watch said:
I was curious to compare the MEA's trustee demographic with that of Action for ME:

The current board of the MEA consists of 6 trustees (5 men, 1 woman). I am not including the female "Associate Trustee" as my understanding is that this is a probationary role and this lady's name is not listed on Companies House as a Director.

Of the 5 men, 3 have been trustees for over 20 years. Their ages, according to Companies House, are 61, 69, 70, 73 and 79. Their average age is 70.4. With the female trustee, the average age is 67.3.

MEA is hurtling towards governance by old, white men.

The MEA's governing document allows for not less than 4, and up to 8 trustees, elected by the membership. The board is permitted an additional 3 co-opted trustees = 11 trustees in total.

In contrast: Action for ME has 12 trustees - 7 men and 5 women; age range 39-66. Average age just over 56. MEA cannot claim that younger people and women do not want to take on the role of trustee within ME orgs.
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It’s giving pale, male and stale.
 
bobbler said:
It flags something about the way the job is designed vs what is needed to be a trustee / they are looking for that is making it difficult to get women ?

and of course maybe age and other diversity aspects (which could include living situation/ financial background etc being relevant for me/cfs too)

then there is the vicious circle of if someone if outnumbered then getting heard can be hard etc
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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
 
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