United Kingdom: ME Association governance issues

Do you mean its Objects of Company as set out in the Articles?

Objects of company

3. The objects of the company are:-

(a) to offer relief to persons of all ages with Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS) through the provision of information and

(b) to further education in all aspects of the illness and

(c) to support research into the illness including the making of grants and to publish the useful results of that research​

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

"Changing your charity's purposes

"You must obtain Charity Commission authority to change your charity's purposes. The Charities Act 2022 has changed the legal test we apply when considering requests for authority."

 

So it would maybe be possible to specify that the charity must not promote a BPS view (though this would have to be worded very carefully to avoid the shifting language and weasel words), but that could be overturned on a later occasion?

I don't know! Do you think the articles could include a clause that would rule out BPS hijack?

 

I'm glad I've never had to work with anyone willing to use lines like those in a point about a Jewish man, however much they disagreed with him.

I feel as if I need to go and wash my hands after reading that.

 

It does not sound the kind of clause that would be written into Objects of Company.

 

It would not be appropriate. However, issuing guidance in accordance with Nice 2021 could be. But Neil would fall foul of that.

 

Action for ME's Objects of Company ("Charitable Objects" on the CC's site) are:

THE RELIEF OF PERSONS SUFFERING FROM THE DISEASE MYALGIC ENCEPHALOMYELITIS (M.E. WHICH EXPRESSION WHERE USED IN THE ARTICLES SHALL INCLUDE CHRONIC FATIGUE SYNDROMES AND OTHER ASSOCIATED SYNDROMES) AND TO PROVIDE INFORMATION, ADVICE AND SUPPORT AND TO PROMOTE PUBLIC EDUCATION AND RESEARCH INTO THE DISEASE (PROVIDED THAT THE USEFUL RESULTS OF ANY SUCH RESEARCH ARE FULLY DISSEMINATED TO THE GENERAL PUBLIC)


I am not a [Company] lawyer but my gut feeling is that it would not be considered advisable for a charity/company to go through the process of changing its Objects to include for example, reference to a piece of legislation, a clinical criteria, or a diagnosis and management guideline which itself might be subject to change, in the future. If the current NICE guideline [NG206] is reviewed in the future and subsequently changed, its recommendations may no longer be supported by ME charities, their members and the wider ME patient constituency. The charity would then need to go through the process of voting to change its Objects in order to remove the clause.

I think they are usually less specific.

 

Yes, deliberately so.

The brother of one of my ancestors left a legacy in 1773, which was to exist as the Thomas Sawden Charity for the next 240 years. Its charitable purpose was: "The distribution of white bread to the poor and needy attending the Church of North Burton in the Parish of North Burton or otherwise Burton Fleming".

Even though problems like poverty will persist, being too specific about the way help or relief should be provided doesn't always stand up in the longer term.

In any case, charities are always vulnerable to being taken over by a group that wants to steer them in a certain direction. As long as that direction is still in line with the objects, or the objects are changed to accommodate it, it's down to a democratic vote. There isn't really a better option.

I guess there's some protection against trustees organising into factions if you make such changes contingent on approval by the majority of the wider membership, though, and keeping that membership onside by working with and involving them.

A diversion about ancestors has been moved here

 

So who were the two old board members who were not wanting the literature to be updated to ‘new direction since ceo departure’?

are we assuming this new direction was dropping what had been ‘psychologising heavy’ type stuff from that era?

 

it's interesting isn't it because it seems like a major flaw/missed issue in charity legislation. That as long as someone can claim good intentions then money collected for one approach can be used for the absolute opposite. And of course if you approach that by speeding up spending what comes in faster then you've issues in a lot of areas where making wise decisions depend on cuing things up or the right opportunity coming in (nevermind things like Biobanks). It becomes like political cycles.


The lack of being able to specify these issues seems old-fashioned to me, a harkback to the old days of paternalism. But I guess the other side of the coin is that, often somewhat more incrementally and evidenced, things can move on as discoveries are made etc.

 

Following the December 2003 AGM and board meeting, only two trustees remained from the previous board: Peter Stewart and Richard (Rick) Osman.


Following the trustee elections at the 6 December 2003 AGM:

New trustees elected to the board were:

Chris Ellis
Angela Flack (deceased)
Dr Charles Shepherd
Christine Llewelyn (deceased)

Existing trustees:

Peter Stewart [resigned April 2004]

Richard (Rick) Osman [resigned Jan 2023]

Niccola Simpson (deceased) was re-elected to the board but resigned at the board meeting intermediately following the AGM because Dr Shepherd had been elected.

Ann Campbell (former Chair) wasn't due for re-standing but also resigned at the board meeting intermediately following the AGM because Dr Shepherd had been elected.

Dr Margaret Macdonald had resigned from the board at the AGM.


The following appointments were made at the board meeting immediately following the AGM:

Chris Ellis was appointed caretaker chairman.
Rick Osman remained vice-chairman.
Dr Charles Shepherd was appointed caretaker company secretary.
No treasurer was appointed at the meeting as Peter Stewart had resigned this position, although he continued as a trustee.


Chris Ellis resigned from the board on 25 January 2004 citing inability to work with the board.

Peter Stewart resigned in April 2004.

Co-optees in 2004:

Ewan Dale was co-opted to the board in March 2004 and remains a trustee.

Neil Riley was co-opted in June 2004 and remains a trustee.



Source: ME Essential Issue 89, December 2003 pulled issue (attached) which was replaced with Issue 89, January 2004

 

Charitable purposes and public benefit and the drafting of charity Objects is a complex area regarding what can and what cannot be included:

https://www.wcava.org.uk/wp-content/uploads/resources/Resources/Help & Advice/Support To Organisations/1. Starting up/Writing your Charitable Objects.pdf


https://www.gov.uk/government/publications/charitable-purposes/charitable-purposes

 

Interesting

so these two ladies who left when Charles returned … had they been really bps/pushing for psych stuff (any detail there of interest as I’m trying to remember back t on that time and work out how extreme of unusual someone might seem)?

and why did they really have to leave (ie they said because he was returning but us it because they’d been part of what was whistleblown against/ been part if an alliance with hockey and now they decided the fight was over?)?

and what has Charles whistle blown about?

 

Thanks so it seems he’s referring to Peter Stewart snd Rick osman didn’t want to update the literature

it’s tricky because I’m assuming in trying to keep track that by virtue of them stating they might have been better than those who went out the door at that time? But is this inferring that they maybe were fans of whatever the old literature was of that era? What am I to assume it was vs the new update?

we are all assuming Charles shepherds had a biomedical idea and val hockey was pushing bps of something based on how this is being brought up - but us that the case?

 

Someone has posted some more positive feedback to the Chairman’s statement, albeit with a caution at the end (‘I know nothing of the controversy regarding the AGM or the Chairman. I am however unsettled by the negative comments. I'm hoping that this charity doesn't have an agenda in opposition to its mission’), to which CS has replied;

—

‘Thank you for these very kind comments about the content and presentation of the Chairman’s annual report

I will pass them on to Neil

Neil has put in a huge amount of time and effort over many years in a purely voluntary capacity

Thanks to his chairmanship we now have a charity that is financially very sound and a staffing structure that is enabling us to steadily expand what we do in relation to research funding, information and support, advocacy, social
media, press work and health and social care that links in to recommendations in the new NICE guideline (which I helped to produce)

I hope you will consider joining the MEA if you are not already a member

Dr Charles Shepherd
Hon Medical Adviser MEA’

—

So, the first commentary I think I have seen from someone other than NR and it’s a gushing supportive piece, which I suppose is to be expected.

The MEA, I fear, as I said way back in this thread, is a lost cause if the board’s most prominent member appears to see no issues with what has happened over recent months, or this is a bit of a deflection comment, remind everyone what NR has done over his tenure so we all forget what he has said and done more recently.

 

I agree. The fact that Riley has done sterling voluntary work is not the issue. He can continue to do that without being chairman of the Trustee body that is there to oversee such work.

The impression given is that if Riley were not chairman everything would fall apart. Perhaps all the problems twenty years ago left people at MEA paranoid about having the wrong people in charge.

 

I agree. The more the board defends the indefensible the worse the future of the MEA looks. We have a small number of individuals who have put an incredible amount of work into developing the MEA but now in their own minds are indistinguishable from the association and can not admit it when they get things wrong.

I agree that we have no reason to suspect any intentional wrong doing in relation to the confusion over the articles of association and access to historic minutes, but the board’s handling of this is symptomatic of this confusion between individuals and the organisation.

There is a desperate need for succession planning, but who would want to or would be allowed to step up as things are.

 

Ann Campbell's statement about why she quit is on Pages 3 and 4 of the pulled December 2003 issue of ME Essential and her Chairman's Report for the AGM 2003 is on Pages 5 to 7:

https://dxrevisionwatch.com/wp-content/uploads/2025/01/me-essentials-december-03-pulled-issue.pdf

Why, following Saturday's AGM, I quit as Chairman and Trustee

Extract:

"Five years ago. an experienced Board of Trustees looked at the future needs of the MEA and after full and careful discussion made the decision to employ a Chief Executive to identify a long-term strategic direction for the future. This included a change in the administration of the charity to the Board governance and professional management model found in major national charities. The development of a trained, professional volunteer team, a new research model and the replacement of a single medical adviser with a panel of medical and research advisors from diverse specialisms were to be part of this strategy. Dr Shepherd has now indicated that if elected he will work to reverse the current strategy and policies agreed and developed by the Board during these last four years. He has also, in his public election statement to members, said that he has no confidence in the administration..."

At the end of Ann Campbell's statement, it says:

"Niccola Simpson also resigned from the Board of Trustees after learning the results of the elections. In her resignation letter, she wrote: "...as Charles Shepherd has been elected as well, I find myself in the position that I cannot work with him. I do not wish to go in the direction that he wishes to take the organisation."
​

It's over 22 years, now, since all this blew up. After Niccola Simpson had resigned from the board, I was in touch with her by phone and email for several years. I expect we discussed at the time what issues she had had with Charles, to what extent she had loyalties to Val Hockey, Ann Campbell and Dr Margaret Macdonald and why she felt she could not continue as a board member now that Charles had joined the board but I'm afraid it's hazy now.


Charles' contract as paid medical advisor had been terminated in May 2003:

https://pmc.ncbi.nlm.nih.gov/articles/PMC1150994/

Head of ME association is sacked
Owen Dyer

2003 Jul 12;327(7406):88.

"Dr Shepherd's supporters accuse the association of drifting away from the purpose of founder members such as Dr Melvin Ramsay, who first proposed myalgic encephalomyelitis as a discrete physiological condition.

"Instead, they say, the association has come to accept a blurring of the distinction between ME and chronic fatigue syndrome and has adopted some of the arguments of that section of the medical establishment that believes the condition to be a somatisation disorder."

"...Denying a change in policy, Ms Hockey said that many of the charity's members have diagnoses of chronic fatigue syndrome, which may or may not be a medical condition distinct from ME. "The MEA provides evidence directed information—not opinion dressed as fact—from which people can make their own decisions.""

If you mean what had Charles whistle blown about back in 2003:

"...he claimed that the organisation has lost its direction and wasted its money."

"[Dr Shepherd] had his contract with the ME Association abruptly terminated for breach of confidence and making statements "likely to bring the MEA into disrepute.""

"Dr Shepherd said that the association was running out of money and expressed concern that funds earmarked for research in a special account might be used for other purposes. He also said that the resignation of three of its seven trustees had been kept secret and that the trustees had been replaced without input from ordinary members."

"Speaking to the BMJ, Dr Shepherd said, "I've basically been sacked for blowing the whistle on a financial crisis in which I felt the public interest overrode the terms of my contract.

"He said he has communicated his concerns to the Charity Commission, which has asked the association for assurances about the Ramsay research fund, an account devoted wholly to research funding.

"Dr Shepherd doubts if it could be protected from creditors if the charity were to become insolvent."


Sorry I can't be more specific about the views of Val Hockey, Ann Campbell and Dr Margaret Macdonald other than what they have said in magazine articles and statements.

Although my son became ill in early 1999, I wasn't involved in ME forums until mid 2002 and I wasn't a member of the MEA or seeing their magazines until late 2003. I wasn't aware of problems with the MEA until Charles Shepherd started publishing his concerns on various platforms in early 2003.

 

bobbler, I don't know. Part of the "new direction" may have been Charles' intentions to "reverse the current strategy and [administrative] policies agreed and developed by the Board during these last four years":

"Five years ago. an experienced Board of Trustees
looked at the future needs of the MEA and
after full and careful discussion made the decision
to employ a Chief Executive to identify a long-term
strategic direction for the future. This included a
change in the administration of the charity to the
Board governance and professional management
model found in major national charities. The development
of a trained, professional volunteer team,
a new research model and the replacement of a
single medical adviser with a panel of medical and
research advisors from diverse specialisms were to
be part of this strategy.

"Dr Shepherd has now indicated that if elected
he will work to reverse the current strategy and
policies agreed and developed by the Board during
these last four years. He has also, in his public
election statement to members, said that he has no
confidence in the administration. I know that the
standard of administration is now more professional
than it has been at any time in my eight
years service on the Board. So this statement
alone would make it impossible for me to work with
him without disagreement..."

Extract: https://dxrevisionwatch.com/wp-content/uploads/2025/01/me-essentials-december-03-pulled-issue.pdf

Why, following Saturday's AGM, I quit as Chairman and Trustee
Ann Campbell, Chairman, December 2003

 

Note that the version of Issue 89, ME Essential Magazine dated December 2003 was the version initially prepared for the printers.

This version was pulled and replaced with the version dated January 2004 which was sent out to the membership:
https://dxrevisionwatch.com/wp-content/uploads/2025/01/me-essential-jan-2004.pdf

The report on Page 1 of the initial version: "Surprise resignations by trustees after new Board is elected" was slightly edited.

Former trustee and chair, Ann Campbell's article "Why, following Saturday's AGM, I quit as Chairman and Trustee" was removed altogether.

The Chairman's report remained.

The article on Page 16: "Do antidepressants help with ME/CFS?" by Michael Sharpe MD appeared to have been removed for the version of Issue 89, as sent out to the membership.