United Kingdom: ME Association governance issues

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’

 

Copied post
The ME Association Chairman’s Statement for 2024 has been shared;

https://meassociation.org.uk/2025/0...e-me-association-chairmans-statement-for-2024

 

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?

 

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.

 

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.

 

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.

 

But three male trustees have been re-standing for election since 2003 and 2004.

 

Very lengthy periods of service by elected trustees has not always proved to be the right answer, either.

 

The story of the incremental adaptation and the foolhardy
…..

 

I know! Been a blinding success.

Always happens, that. Ought to be called Chief Incompetence Officers. Makes you wonder why anyone takes the risk.

 

They clearly employed the wrong one. Recruited and signed off by the Board, I assume, as is usual?

 

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.

 

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.

Good points.

 

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.

 

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.

 

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

 

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.