United Kingdom: ME Association governance issues

[bobbler]

Though I am not optimistic, let’s hope the Trustees do not use promised future action as a way of ignoring current concerns.

They need to think of that motion as binding and if they want to save the reputation of the charity then allow it to happen but take this months grace period to get themselves ahead and ready for it ie say it’s happening and there are plans to have new people in place and be updating the role to not be discriminatory by hours etc

in order to save us being at risk of it being rushed and opportunists ending up taking on those trusted positions because it has to be done in a rush later in the coming 18months rather than planned starting now

of course within that month then we do need something tgat is binding coming in - there’s no more trust I’m afraid and only something that signs over that fait a compli otherwise any little things that take time will result in rightly people having to sssyme it might be game plsying without something cemented that all are on that same page and agreed endpoint

was it on here or elsewhere where someone talked about their experience of having had the ‘help team in’ from somewhere like the CC to sort their governance issues and it having been actually a really good experience?

 

[MrMagoo]

What happened back in 2003, anyway? I don't wish to re-open old wounds, but genuinely curious: I've read the story in the BMJ (BMJ 2003;326:1232) as well as the online rapid responses - it seemed there were both financial problems and a major dispute about the direction of the charity? Was the BMJ's story accurate - did the CEO take it in a psychosomatic direction? Don't think I've ever seen an account of what actually happened & why they are so highly averse to the idea of employing a CEO or having trustees in their traditional role of oversight rather than actively involved in all manner of operational matters.

One other problem with the idea of such very active, operationally-involved trustees, expected to work most days, is that it severely narrows the potential pool of recruits, especially when that potential pool of recruits should include pwME. The level of work they expect trustees to provide will be beyond the capabilities of most moderately & all severely affected, and despite the significant duties there is no remuneration, so far more likely to be someone retired or in a very financially stable position. By contrast trustees in a traditional oversight role with no operational duties can be drawn from a much broader pool of talent, could include more severely affected pwME, and so could be far more representative.

It’s ok we have Charles and Neil to represent. I’m being sarcastic.

 

[Dx Revision Watch]

https://www.facebook.com/meassociat...ZR4J9PG3WbQtUKZKe12WT7dbQ28y3p1Nq549a3WrZFJJl

The ME Association Chairman’s Statement for 2024 - The ME Association

There are a couple of comments to this post but we'll see how long they stay up:

Vanessa Clark
"On social media we continue to inform and encourage dialogue", until people start asking too many questions then we threaten to sue them.

Colin Barton
Some say that the MEA should have a CEO in post.


Last time Mr Barton posted that comment on a post all the comments to that post were hidden.

There are now 11 comments. Catch them quick, before they get taken down. (You'll need to select "All comments.")

https://www.facebook.com/meassociat...ZR4J9PG3WbQtUKZKe12WT7dbQ28y3p1Nq549a3WrZFJJl

Edited to add: Colin Barton had, himself, been a trustee of the ME Association (1997 - April 2000).

 

[Jonathan Edwards]

I don't think any of us should be using Facebook with recent developments.

 

[Dx Revision Watch]

There are now 11 comments. Catch them quick, before they get taken down. (You'll need to select "All comments.")

https://www.facebook.com/meassociat...ZR4J9PG3WbQtUKZKe12WT7dbQ28y3p1Nq549a3WrZFJJl

Edited to add: Colin Barton had, himself, been a trustee of the ME Association (1997 - April 2000).

All 12 comments now hidden. Jeez!

Edited to add: 6 more comments have now gone up. I've copied them. I expect they'll be removed, too, after lunch.

And so it goes on...

 

[Kitty]

I don't think any of us should be using Facebook with recent developments.

Agree with the sentiment, but four of my voluntary groups use it as their sole method of contacting members. The others make heavy use of WhatsApp, also owned by Meta.

It's a years-long habit, so it's going to take time and discussion (on Facebook) to transition away from it.


ETA: they also use Facebook to store a lot of their group resources, whether that's local ME/CFS advice, session tunebooks, or survey sites, species ID, and risk assessments. That's another problem, especially if the best alternative is a Twitter-type model.

 

[Kitty]

All 12 comments now hidden. Jeez!

So anyone who wants to get a sense of people's real responses now has to spend hours a day screenshotting stuff?

Next thing we know, the ME/CFS community will be developing its own argot to get round the suppression of their 'unsuitable' communications.

 

[Fainbrog]

All 12 comments now hidden. Jeez!

But, more comments are appearing and calling out the hiding of the previous posts. Am screen grabbing when I remember to.

 

[Fainbrog]

But, more comments are appearing and calling out the hiding of the previous posts. Am screen grabbing when I remember to.

And someone has just posted that they will not be raising any funds for them from now on. Assume that will be swiftly hidden when they next come to clear things down.

 

[Peter T]

Have added a comment on the Facebook post (aprox 12.20), so thought I would copy it here in case it also disappears:

The Chairman says “We are constantly looking at new ways in which to connect with people with ME/CFS and those who influence how you, the patient, are treated and understood.”

However deleting responses here seems to be part of a pattern where the MEA seems to be selective in what they want to hear.

The Association does much important work and in some ways very effectively supports some people with ME, but only on their own terms.

 

[Dx Revision Watch]

The irony of this is that Dr Charles Shepherd only stood for election to the board of trustees because he was sacked from his contract as Medical Advisor in mid 2003 for whistleblowing.

And yet here we are, 21 years later, watching Facebook moderators instructed to hide anything critical out of public view, presumably with his blessing. Apart from Ewan Dale occasionally adding a comment to an MEA post, the only other trustee who responds to comments or questions on FB is Charles, himself. I imagine he is fully aware of the comments being received and the level of censorship being carried out and he may also be responsible for hiding posts.

Every member of that board is responsible for how the board conducts itself, the decisions it makes and the actions it takes and I am sick to the back teeth of all of them.

 

[Nightsong]

Hope these may be of interest.

Thanks for those - just finished reading through, & they were very illuminating. I had no idea of all this history.

I think I have a far better understanding of why MEA is so highly averse to the idea of people proposing to professionalise their management and appoint a CEO: the last time that happened, Charles Shepherd was ousted, turned whistleblower on the Internet & having to write complaints to the Charity Commission, health psychologists were being interviewed about how wonderful the biopsychosocial model is and Sharpe was writing articles for their magazine on the potential benefits of sertraline (an SSRI antidepressant). The intention was very clearly to turn MEA into a fully establishment-psychosomatic organisation. It's also clear that MEA then very nearly folded, and was brought back from the brink (perhaps explaining the recent references to "expensive CEOs" - the last one had to be removed and paid off).

I wonder why Barton is so interested in MEA having a CEO? He has his own group, and used to be a member of the BACME Executive and is still involved with them. Perhaps because he understands very well what happened last time, and wants it to happen again?

 

[Lou B Lou]

@Nightsong wrote:

"I wonder why Barton is so interested in MEA having a CEO? He has his own group, and used to be a member of the BACME Executive and is still involved with them. Perhaps because he understands very well what happened last time, and wants it to happen again?"


Colin Barton's Charity 'The Sussex and Kent ME/CFS Society' has had the same 3 Trustees (including Colin Barton) since it was first registered with the Charity Commission in the year 2,000. That's 25 years.

I don't know if the Sussex Society has elections for the Trustees, or AGMs.

The charity has reported low income since the beginning, rarely having their accounts published on the Charity Commission site for reasons of low income. The CC have raised the limit of income under which charities don't have to produce their annual accounts from £10,000 pa to £25,000 pa. So we won't be any more informed of the Sussex Society activities any time soon.


https://register-of-charities.chari...y-search/-/charity-details/3973095/full-print


.

 

[bobbler]

Thanks for those - just finished reading through, & they were very illuminating. I had no idea of all this history.

I think I have a far better understanding of why MEA is so highly averse to the idea of people proposing to professionalise their management and appoint a CEO: the last time that happened, Charles Shepherd was ousted, turned whistleblower on the Internet & having to write complaints to the Charity Commission, health psychologists were being interviewed about how wonderful the biopsychosocial model is and Sharpe was writing articles for their magazine on the potential benefits of sertraline (an SSRI antidepressant). The intention was very clearly to turn MEA into a fully establishment-psychosomatic organisation. It's also clear that MEA then very nearly folded, and was brought back from the brink (perhaps explaining the recent references to "expensive CEOs" - the last one had to be removed and paid off).

I wonder why Barton is so interested in MEA having a CEO? He has his own group, and used to be a member of the BACME Executive and is still involved with them. Perhaps because he understands very well what happened last time, and wants it to happen again?

On your last para I’ve been noticing he’s commented a few times

reminder on how changes need more planning than us just saying who ‘goes’

 

[Dolphin]

Thanks for those - just finished reading through, & they were very illuminating. I had no idea of all this history.

I think I have a far better understanding of why MEA is so highly averse to the idea of people proposing to professionalise their management and appoint a CEO: the last time that happened, Charles Shepherd was ousted, turned whistleblower on the Internet & having to write complaints to the Charity Commission, health psychologists were being interviewed about how wonderful the biopsychosocial model is and Sharpe was writing articles for their magazine on the potential benefits of sertraline (an SSRI antidepressant). The intention was very clearly to turn MEA into a fully establishment-psychosomatic organisation. It's also clear that MEA then very nearly folded, and was brought back from the brink (perhaps explaining the recent references to "expensive CEOs" - the last one had to be removed and paid off).

I wonder why Barton is so interested in MEA having a CEO? He has his own group, and used to be a member of the BACME Executive and is still involved with them. Perhaps because he understands very well what happened last time, and wants it to happen again?

If I recall correctly (I heard this indirectly from the late Derek Peters who was a trustee in the 1990s), Colin Barton had a paid position in the MEA in the 1990s (office manager?).

 

[Dx Revision Watch]

Thanks for those - just finished reading through, & they were very illuminating. I had no idea of all this history.

I think I have a far better understanding of why MEA is so highly averse to the idea of people proposing to professionalise their management and appoint a CEO: the last time that happened, Charles Shepherd was ousted, turned whistleblower on the Internet & having to write complaints to the Charity Commission, health psychologists were being interviewed about how wonderful the biopsychosocial model is and Sharpe was writing articles for their magazine on the potential benefits of sertraline (an SSRI antidepressant). The intention was very clearly to turn MEA into a fully establishment-psychosomatic organisation. It's also clear that MEA then very nearly folded, and was brought back from the brink (perhaps explaining the recent references to "expensive CEOs" - the last one had to be removed and paid off).

Val Hockey's redundancy package pretty much gobbled up what little funds the MEA had left. By the time she quit, a number of trustees had left the sinking ship, senior managers had resigned and the new board was struggling to keep the MEA afloat. They had a much smaller office staff back then but HO admin staff were cut to the bone. There was talk of a merger with AfME or closing the organisation. During this period it was very difficult to get any information out of the board.

In 2004, Jane Bryant of the ONE CLICK CAMPAIGN, requested the Members' Register. Here's a copy of the notice the board published in ME Essential:

https://dxrevisionwatch.com/wp-content/uploads/2025/01/mea-essentials-acess-to-members-reg.pdf

Although the board understood that they had a legal obligation to provide the register to anyone who requested to view it, my understanding is that they did not provide the register to her. A member can be given a copy but non members can view it.

I don't know whether you have seen this (I have posted it on the forum before.)

Chris Ellis's resignation statement, February 2004. Chris had been Chairman until early 2004 but stood down as he was unable to work effectively with the board:

https://dxrevisionwatch.com/wp-content/uploads/2025/01/chris-ellis-resignation-statement-.pdf

I wonder why Barton is so interested in MEA having a CEO? He has his own group, and used to be a member of the BACME Executive and is still involved with them. Perhaps because he understands very well what happened last time, and wants it to happen again?

I don't know, but he had been a trustee of the MEA, himself, from October 1997 to April 2000.


There is more background here from the ONE CLICK CAMPAIGN, May 2004:

https://dxrevisionwatch.com/wp-content/uploads/2025/01/the-me-association-where-is-it-now.pdf

 

[Dx Revision Watch]

If I recall correctly (I heard this indirectly from the late Derek Peters who was a trustee in the 1990s), Colin Barton had a paid position in the MEA in the 1990s (office manager?).

I don't know about the early '90s but he was a trustee between October 1997 to April 2000.

 

[Sasha]

I think I have a far better understanding of why MEA is so highly averse to the idea of people proposing to professionalise their management and appoint a CEO [...] The intention was very clearly to turn MEA into a fully establishment-psychosomatic organisation.

I wonder if there is any way a charity can legally prevent its aims being subverted in this way - for example in how its purpose is described in documents that would have legal standing (sorry, I don't know what any of this stuff is called!)?

 

[Peter T]

I wonder if there is any way a charity can legally prevent its aims being subverted in this way - for example in how its purpose is described in documents that would have legal standing (sorry, I don't know what any of this stuff is called!)?

The trustees are bound to act in accordance with the articles of association, which is why it is so important getting them right. Also to alter the articles of association requires a specified majority (I forget the percentage) of members attending or voting via postal ballot at a duly arranged general meeting of the Association. So as long as there is an active membership a radical change in direction is hard to achieve, though up till the most recent AGM, the numbers of members being active in relation to MEA general meetings or annual general meetings had got quite low.

 

[Dx Revision Watch]

The trustees are bound to act in accordance with the articles of association, which is why it is so important getting them right. Also to alter the articles of association requires a specified majority (I forget the percentage) of members attending or voting via postal ballot at a duly arranged general meeting of the Association. So as long as there is an active membership a radical change in direction is hard to achieve, though up till the most recent AGM, the numbers of members being active in relation to MEA general meetings or annual general meetings had got quite low.

In order to pass a Special Resolution, 75% of the members who participate in voting are required to vote in favour of adoption of the Resolution. (That would be the total of in person votes and postal ballot votes.)*

*Alteration of the articles

47.

a) The company may alter these articles only by a special resolution. A special resolution must be passed at a meeting of members of which 21 clear days notice has been given of the intention to pass a special resolution and at which 75% of those voting must be in favour of. Such a resolution may be passed on shorter notice if 95% of members having the right to vote agree.

(b) No alteration may be made to an article, which directs or restricts the way monies or property of the company may be used without the Charity Commission's prior written approval.​