United Kingdom: ME Association governance issues

Dx Revision Watch said:
For comparison, in May 2008, Third Sector journalist, Paul Jump, reported that AfME had 7,630 members [1].

(A figure which was understood at the time to have been falling for several years.)

1 http://www.thirdsector.co.uk/action-membership-row/governance/article/807171

Action for ME in membership row
07 May 2008 by Paul Jump

Action for ME has defended itself after a public protest from a group of disgruntled members who believe they are being denied full membership rights.

[Image caption] Protest: some members want more rights

The charity, which supports people with ME - also known as chronic fatigue syndrome - said that its 7,673 fee-paying members were not entitled to vote at AGMs because they were not members in a legal sense.

A Charity Commission spokeswoman said it had dismissed a number of complaints on the issue between 2003 and 2005. "We were satisfied that there had been a misunderstanding," she said.

The dissident members claim that the charitable company, which broke away from the ME Association in 1994, is acting unconstitutionally because it does not hold AGMs or represent members' views.

A group of about 16 demonstrated last week outside a conference at the Royal Society of Medicine, where the charity's chief executive, Sir Peter Spencer, was due to give a speech. They claimed the board of AfME had become dominated by people who believed ME was a psychological condition. Most ME sufferers, they said, believed it was physical.

"Only by re-establishing the democratic link between AfME and its membership will AfME gain a mandate to speak and act on behalf of us," said Ciaran Farrell, a member of AfME. "Filling in a questionnaire is not the same as being able to vote on policy or elect trustees who see things your way."

Richard Evans, trustee and company secretary of AfME, said the charity's website made it clear that "being a member of AfME, the organisation, is not the same as being a member of Action for ME, the company limited by guarantee, as a company law matter".

He said the charity's latest AGM had been held in February and that trustees, who are the only legal members, had been invited.

A spokeswoman added that AfME required the majority of its trustees to have had ME, and that all but two of the current 10 board members were either sufferers or carers. She said the disgruntled group had been campaigning against AfME for many years.

Governance expert Judith Rich said charities should hold regular meetings with their memberships regardless of whether it was legally required. "That is the only way charities can be sure they are truly representing the views of their members," she said.
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Thank goodness for that last para. The ones before it … well… I’d hope most who read it at the time saw right through that statement to see that ‘if there s confusion that being a member isn’t really a member then it’s because they’ve been misled … and the attitude that it’s just confused people rather than a con being flagged they need to explain themselves for stinks’
 
MrMagoo said:
I also disliked the end asking for people to come forward to apply to be trustees, yet the text said you must have the ability to work daily alongside our teams. Pretty big “don’t bother applying if you have ME” there.
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personally, I think a charity the size of the ME Association should be working through its staff primarily, with trustees providing oversight. At the moment, the trustees appear to be micromanaging the charity and making all significant decisions. I’m sure that was necessary when the organisation nearly went bust 20 years or so ago and they kept it going, but surely they should not be providing governance rather than micromanagement?
 
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Given the MEAssociations very heavy moderation of its facebook page comments I imagine the forum is a place where any criticism would be equally removed. A forum doesn't fix any of the existing communication issues which all originate from an organisation that refuses to acknowledge and properly address criticism and lacks transparency in its actions, decisions and seems to too often be working against patient interests.
 
Simon M said:
personally, I think a charity the size of the ME Association should be working through its staff primarily, with trustees providing oversight. At the moment, the trustees appear to be micromanaging the charity and making all significant decisions. I’m sure that was necessary when the organisation nearly went bust 20 years or so ago and they kept it, but surely they should not be providing governance rather than micromanagement?
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Yes, when I worked in charities, even if there were very involved trustees (passion project type) they weren’t involved daily. And nor should they be. That’s not the role.
 
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MrMagoo said:
Yes, when I worked in charities, even if there were very involved trustees (passion project type) they weren’t involved daily. And nor should they be. That’s not the role.
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They have made it their role because they won't employ "an expensive" CEO or similar executive/management roles:


https://meassociation.org.uk/about-the-mea/policies-and-documents/

Question:

Why doesn’t the charity have a CEO?

Answer:

We believe that trustees offer a better way of running the ME Association. The trustees provide the leadership of the charity, giving it strategic direction and ensuring compliance.

CEO’s can be a mixed blessing and certainly not the only way to run a charity or any other institution. Beloved by Executive Recruitment Agencies and Management Consultants, CEO’s have not always proved to be the right answer. In both the charity and commercial fields, there have been numerous examples of failure. Many years ago, The ME Association employed a CEO. The result was that the charity almost folded but thanks to trustees and the membership it was saved and has grown ever since. The charity will always look at the option of using a CEO and we have amongst our staff several people who could do that job exceptionally well. But for the moment, the present way the charity works with ‘hands on’ trustees has proved successful. Change for change's sake is foolhardy, incremental adaptation is, we believe, the route to take.

Our Articles provide for a maximum of 8 trustees. Any larger and decision making becomes more diffuse and lengthier. Our trustees work alongside operational staff, which is unusual for a charity, but the system works well. Trustees do not just turn up every two months for a meeting and go away.

We advertise for new trustees within our membership (note , it is a requirement that trustees are members) and widen that search where there are no suitable applicants.

We are always welcoming new talents and innovation, and we hope that the wider ME Community will come forward with their ideas.

The makeup of our trustees vary from time to time and the ratio of male to female will change accordingly. If you have talent and the passion to help people with ME/CFS then whatever protected characteristic you have will not matter. Equality within the ME Association is paramount.

The reasons why trustees resign are many and various. Disclosing those reasons in certain cases would involve the disclosure of personal data and we would be in breach of the Data Protection Act if we did so. We rarely end a trustee’s membership of the Board but the Articles of Association prescribe reasons for doing so. Most trustees resign because they have new work, family responsibilities or find that their own health requires them to rest and recuperate.
 
Dx Revision Watch said:
They have made it their role because they won't employ "an expensive" CEO or similar executive/management roles:


https://meassociation.org.uk/about-the-mea/policies-and-documents/

Question:

Why doesn’t the charity have a CEO?

Answer:

We believe that trustees offer a better way of running the ME Association. The trustees provide the leadership of the charity, giving it strategic direction and ensuring compliance.

CEO’s can be a mixed blessing and certainly not the only way to run a charity or any other institution. Beloved by Executive Recruitment Agencies and Management Consultants, CEO’s have not always proved to be the right answer. In both the charity and commercial fields, there have been numerous examples of failure. Many years ago, The ME Association employed a CEO. The result was that the charity almost folded but thanks to trustees and the membership it was saved and has grown ever since. The charity will always look at the option of using a CEO and we have amongst our staff several people who could do that job exceptionally well. But for the moment, the present way the charity works with ‘hands on’ trustees has proved successful. Change for change's sake is foolhardy, incremental adaptation is, we believe, the route to take.

Our Articles provide for a maximum of 8 trustees. Any larger and decision making becomes more diffuse and lengthier. Our trustees work alongside operational staff, which is unusual for a charity, but the system works well. Trustees do not just turn up every two months for a meeting and go away.

We advertise for new trustees within our membership (note , it is a requirement that trustees are members) and widen that search where there are no suitable applicants.

We are always welcoming new talents and innovation, and we hope that the wider ME Community will come forward with their ideas.

The makeup of our trustees vary from time to time and the ratio of male to female will change accordingly. If you have talent and the passion to help people with ME/CFS then whatever protected characteristic you have will not matter. Equality within the ME Association is paramount.

The reasons why trustees resign are many and various. Disclosing those reasons in certain cases would involve the disclosure of personal data and we would be in breach of the Data Protection Act if we did so. We rarely end a trustee’s membership of the Board but the Articles of Association prescribe reasons for doing so. Most trustees resign because they have new work, family responsibilities or find that their own health requires them to rest and recuperate.
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The story of the incremental adaptation and the foolhardy
…..
 
They clearly employed the wrong one. Recruited and signed off by the Board, I assume, as is usual?
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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.
 
Nightsong said:
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.
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Some magazine articles from the time in attachments:

See advertisement on Page 3 of MEA Bulletin November 2002 by Dr Margaret Macdonald, who quit as the MEA's Research Manager and Trustee to found a new international group to research ME (which was very soon defunct).

Also Pages 10-11, interview with Chartered health psychologist, STEPHEN JOSEPH, BSc(Hons), MSc, PhD, DipCouns, senior lecturer at the University of Warwick, talks about psychological therapy and chronic illness with VAL HOCKEY, chief executive of the ME Association.

Text of Dr Macdonald's MED Foundation advert in third attachment.

See also articles in the pulled issue of ME Essentials December 2003. Page 1, and Pages 3-7 by Ann Campbell: Why, following Saturday's AGM, I quit as Chairman and Trustee.

Some of these articles were edited and some did not appear in the issue which was subsequently sent out to members the following January.

Hope these may be of interest.

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.
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Good points.
 

Attachments

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Nightsong said:
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.
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It's discriminatory, there's no other way to look at it.

It's like companies that expect young graduates to do a year as an intern before they'll consider offering them a job, which excludes all candidates without a family or partner well off enough to fund their living expenses, travel, and the costs of working.


ETA: People wouldn't be eligible for out-of-work benefits whilst doing a trustee job that required them to work most days, any more than someone interning at a law or PR firm.
 
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Kitty said:
It's discriminatory, there's no other way to look at it.

It's like companies that expect young graduates to do a year as an intern before they'll consider offering them a job, which excludes all candidates without a family or partner well off enough to fund their living expenses, travel, and the costs of working.


ETA: People wouldn't be eligible for out-of-work benefits whilst doing a trustee job that required them to work most days, any more than someone interning at a law or PR firm.
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Yep it’s as old hat as that - which went out by about 2010
 
So, I guess this statement will be what they refer everyone to now alongside the FAQ.

I had hoped the apparent radio silence to the various queries raised from members here was them having a considered pause as a board, but, with a cursory glance, is looking like they are digging in or kicking the can down the road with vague statements.

The immediate queries such as what the heck happened with the articles remains unanswered and I doubt will go away with suggestions of a review of the articles.
 
Text of paper letter sent to Dr Margaret Macdonald, former MEA Research Manager and Trustee. Neither the email address nor the website URL given in the advert published in Issue 10, November 2002 Research and Scientific Bulletin (a supplement to ME Essential magazine) appeared to be valid despite her requesting £5 be sent in order to obtain a brochure for her (as yet unregistered) charity.


Dear Dr MacDonald,

Re: MED Foundation

I have tried to email the MED Foundation for further information using the email address given in your advertisement in the MEA’s November Bulletin.

Mail addressed to medf@ntlworld.com is being bounced by ntl as ‘invalid recipient’.

Could you please advise me of the correct email address?

I should also be pleased if you could confirm the URL for the M.E.D Foundation website.

The URL given in the MEA November Bulletin www.medf.org brings up only the site of an Appalachian Mountain Economic Development agency.

As I cannot obtain further information about your new charity from a website I should be pleased if you will confirm both the email address and the charity URL.

I should like a list of the trustees.

I do not feel I can apply for the brochure until these queries have been addressed.

Sincerely,

Suzy Chapman
etc.

--------------------------------------------------

In 2004, the issue of this charity and the collection of funds was taken up by me and a colleague with the Charity Commission and the MEA Board of Trustees after having spoken to Dr Macdonald on the phone who claimed at the time that in the region of 3,500 people had responded to her advert and that the sheer volume was the reason why cheques were taking a long time to be returned to those who had sent them.

A notice was subsequently placed on the MEA's website to assure members that Dr Macdonald would now be returning all cheques.

The MED Foundation, she said, stood for the "ME Discovery Foundation". Plans for registering this charity in this name had floundered, she told me, due to unspecified 'obstructions'.

She also told me that an alternative charity was in the process of being set up and an application for registration being made – though she did not confirm whether the application had already been submitted.

I have no idea just how many cheques were sent to her and how many were returned. It was a bizarre business altogether.
 
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Fainbrog said:
So, I guess this statement will be what they refer everyone to now alongside the FAQ.

I had hoped the apparent radio silence to the various queries raised from members here was them having a considered pause as a board, but, with a cursory glance, is looking like they are digging in or kicking the can down the road with vague statements.

The immediate queries such as what the heck happened with the articles remains unanswered and I doubt will go away with suggestions of a review of the articles.
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Though I am not optimistic, let’s hope the Trustees do not use promised future action as a way of ignoring current concerns.
 
Peter Trewhitt said:
Though I am not optimistic, let’s hope the Trustees do not use promised future action as a way of ignoring current concerns.
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If I've heard nothing from Neil Riley or Dr Shepherd by another week, I'll send a follow up email. I shall also be regularly checking the Filing History on Companies House for any developments with the "true Articles".
 
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.
 
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