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ME Association staffing and structure

Discussion in 'General Advocacy Discussions' started by ME/CFS Skeptic, Mar 20, 2019.

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  1. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    The following posts have been moved from the Reuters thread.

    Really? That's quite amazing. Doesn't CS get paid by the charity for all the work that he's doing?

    When the ME association was looking for a media officer, it was quite clear that the position was paid. I would be surprised if other staff members like CS members aren't.
     
    Last edited by a moderator: Mar 20, 2019
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  2. Trish

    Trish Moderator Staff Member

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    I don't think CS is a staff member. He's a medical adviser and possibly a board member.

    Edit:
    https://www.meassociation.org.uk/about-the-mea/patrons-trustees/
    Dr Charles Shepherd is listed as 'Hon. medical adviser', and a member of the board of trustees.
    Hon means honorary which means unpaid, as far as I know. Though I assume he gets things like travel expenses.
     
  3. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Well, kudos to him then
     
  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Prior to 2003, Dr Shepherd was paid a salary in the role of Medical Adviser to the MEA. This was in the Val Hockey era.

    He was sacked from this position, in 2003, for whistle blowing. A number of Trustees had resigned from the Board. Several key senior personnel resigned. Val Hockey, CEO, took a redundancy package, herself, not that long afterwards.

    The charity was left with very few staff, very little money in the bank and faced an uncertain future. There was talk, at one point, of the offer of a takeover by AfME, or of folding the organization due to the lack of funds.

    A new Board was formed from new blood plus the few remaining Trustees. Dr Shepherd, who had said he would not stand for election to the Board of Trustees, did put himself forward for election and has remained a Trustee ever since.

    Since Val Hockey left the organization, there has never been another CEO or similar senior management position created; the MEA is now run by a very small number of staff and the Board of Trustees.

    Trustees cannot also be paid a salary but they can claim expenses.

    If the MEA could afford to pay for a Medical Adviser position, which, looking at the Annual Report & Accounts, I doubt it can, Dr Shepherd could not remain a member of the Board and draw a salary or receive consultation fees.


    Edited to add:

    Trustees Report and Accounts December 2017


    http://apps.charitycommission.gov.uk/Accounts/Ends79/0000801279_AC_20171231_E_C.pdf

    This includes financial statements for Year End 2017 and information on staff positions and contract workers.


    From 2003:

    https://www.thirdsector.co.uk/bitter-row-engulfs-association/article/621203

    Bitter row engulfs ME Association
    25 June 2003 by ANNIE KELLY

    The ME Association, the UK's oldest charity for the chronic fatigue illness, could face closure as it struggles to cope with a bitter feud between its new chief executive and its former chief medical adviser.

    The board of trustees is meeting this week to debate the charity's future after a string of resignations, the threat of an employment tribunal, strong public criticism and accusations of serious financial mismanagement.

    "We are facing a shortfall in funding this year and unless the minimum required amount of £150,000 can be raised by 14 July, the organisation will face the real possibility of closure," said Val Hockey, chief executive at the ME Association.

    She said that the financial crisis had been made worse by Dr Charles Shepherd, the charity's ex-medical adviser, who was sacked after he refused to retract statements that he posted on ME internet message boards in May about the resignation of three trustees.

    "I think it's reasonable to say that if the organisation was unable to continue, it will never be clear how much Shepherd's internet postings and the subsequent fall-out was instrumental in this happening," said Hockey.

    Shepherd, one of the UK's most respected voices on ME, claims the trustees resigned over a serious "wastage of money" and the decision to move the charity's headquarters and hire new staff.

    The doctor has advised the organisation on medical matters for 15 years.

    He began posting his concerns about the charity's financial situation on the message board after the number of trustees slipped to four.

    "It was the public interest that over-ruled my contracted rules on confidentiality," said Shepherd. "My initial posts were accurate and relevant queries about the constitutional make-up of the charity board and were in the interests of the membership and the public at large.

    "I am speaking to my lawyers about whether to take this to an employment tribunal."

    After Shepherd was dismissed, he continued posting messages criticising management. He also challenged Hockey to disclose what would happen to £50,000 held in the Ramsay research fund, set up specifically to fund medical research, if the charity was to fold.

    Following the charity's failure to respond, Shepherd contacted the Charity Commission with his concerns. Louie Ramsay, the charity's patron, has since resigned and demanded that the charity remove her family name from the fund.

    However, Hockey is adamant that the charity is working in its members' best interests. She said that the unrest stems from a "painful but necessary" process of modernisation last year.

    "I'm dedicated to what has been started and want to see it finished," she said.

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

    https://www.bmj.com/content/326/7401/1232.4

    Head of ME association is sacked*

    The medical director of Britain's largest charity for people with chronic fatigue syndrome has been sacked after he claimed that the organisation has lost its direction and wasted its money.

    Dr Charles Shepherd, for years the leading medical spokesman for British people with the condition, which is also known as myalgic encephalomyelitis (ME), had his contract with the ME Association abruptly terminated for breach of confidence and making statements “likely to bring the MEA into disrepute.”

    In letters to several websites run by various ME groups and patients, 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 etc.

    *We added an incorrect title to this “news roundup” article by Owen Dyer (7 June, p 1232). As the first sentence of the article makes clear, it was the medical director (Dr Charles Shepherd) who was sacked from his position at the ME Association (a British charity for people with myalgic encephalomyelitis). Dr Shepherd was not the head of the association.
     
    Last edited: Mar 20, 2019
  5. wdb

    wdb Senior Member (Voting Rights)

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    There are a couple of responses to that article by Charles Shepherd


     
  6. chrisb

    chrisb Senior Member (Voting Rights)

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    Just looking at the objects of the company stated in the Trustees report linked to above, one might think that "furthering education in all aspects of the illness" would enable them to make some response to false or unbalanced information propagated by popular news media about the condition.

    But we probably should not adopt the motto "MEA culpa".
     
  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    This post and the following ones have been copied or moved from this thread.

    The ME Association has, in the past, put Resolutions for proposed changes to the wording of its Memorandum and Articles of Association (the Association's governing/constitutional document) which has given the Board of Trustees control over who can and who cannot be nominated for election to the Board out for postal vote by the membership.

    Some years ago, the case for and against changing the name of the Association from The Myalgic Encephalomyelitis Association to The Myalgic Encephalopathy Association was also presented to the membership via its magazine and a membership postal vote held.

    Rather than publish this document on the website - then ask for feedback when the document is already live - the MEA had the option of publishing a draft via its magazine and possibly also on the website, clearly stamped as a draft, inviting review and feedback from its members and its wider constituency.

    Responses to formal consultation processes, for example, drafts of revisions of NICE Guidelines, should also be put out for consultation, if this is not already being done.


    It should not be forgotten that the Board of Trustees (which has considerable influence over the organisation's direction and policies and complete control over who can and who cannot stand for election in its trustee election process) manages an organisation which is run without a CEO or policy manager.

    But is not their personal fiefdom.

    It exists for one purpose only - which is to represent the best interests of the organisation's members.

    Some of the trustees have sat on that board since 2003 - "going round again" each time their term has ended and been voted back onto the board. It is their right stand for re-election when their terms come to an end and the right of the membership to vote them back in again.

    Quite recently, one board member, Neil Riley, came under criticism on this forum for the content of an article he had published in the magazine.

    None of the board members are above constructive criticism around what it published in the name of the Association or by individual board members.

    Note: I am not a member of the ME Association and was twice denied membership in 2004, firstly by "Officer's Action" in between meetings of the Board of Trustees and secondly, via a vote following discussion of my application tabled on the Agenda at a meeting of the Board of Trustees and Minuted. I have not submitted further applications for membership since 2004.
     
    Last edited by a moderator: Feb 7, 2020
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  8. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    As an example of the MEA's troubled past and how the opinions and actions of trustees of any charity do need scrutiny, I am attaching a PDF copy of a 2003 report from the MEA's Research & Scientific Bulletin November 2003 by the Association's former trustee and Scientific Manager, Dr Margaret Macdonald:


    "Dr MARGARET
    MACDONALD who has quit as MEA Research Manager and Trustee to found a new international group to research ME."


    Dr MacDonald's nascent splinter research organisation did not get off the ground.

    Several other trustees also quit in 2003 and a new Board was formed. In 2004, CEO Val Hockey took a redundancy package leaving the organisation with no CEO.

    Report attached.




     

    Attached Files:

    Last edited: Feb 7, 2020
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  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    From 2004:

    A public statement by Chris Ellis: MEA Chairman Resignation Statement

    I have waited sometime before coming forward with my own statement on my
    resignation as Chairman of the MEA. The counter punch is always easier. The
    Board, however, nearly spiked my guns by deciding, very wisely, to cite
    "irreconcilable differences" as the reason for my departure, a most apposite
    phrase. Certainly, it was in complete contrast to an earlier draft statement
    which was unaccountably sent to me and which was loaded with " it was all
    agreed" all over the place - an obvious travesty of the truth.

    Unfortunately, the authors could not resist the luxury of a little put-down
    which gives me an excuse for replying in the same vein. After all, Sir Thomas
    More, later a saint no less, said that "let a (person) step on your toe in the
    morning and by evening (he) will be stepping on your face. Or, if you would
    "nemo me impune lacessit" - ah you can always tell the old Grammar School boys.

    It is this "acting" Chairman bit. A few weeks earlier, the final MEA
    proclamation of intent had been produced (and not by me) over a clear "Chairman"
    etc. authority. On resignation, I appear to have been demoted. Well now,
    "reluctant" yes but "acting" I will not have. I seem to remember single-handedly
    setting up and organizing the running of an open-ended E-mail Board Meeting from
    mid-December onwards to enable actions to be taken by an otherwise paralysed
    Board. At the Board Meeting on 20th Jan, I seem to have been the only trustee to
    have taken the trouble to arm himself with the relevant details of current bank
    accounts, expected income flow on a monthly basis and figures related to
    immediate liabilities.

    If one wanted to apply the word "acting" one might do so to the previous Board
    from whom the parlous state of the MEA was inherited and, in particular to the
    Treasurer for the past two years, who remains undaunted as Trustee. I hold no
    personal rancour since I have only met the man once and spoken to him on the
    telephone twice only but the record speaks for itself. At that meeting on 20th
    Jan, called essentially to discuss the financial viability of the MEA his sole
    suggestion was that we use an Auditor's report dating back nine or so moths i.e.
    before the Appeal made by the MEA and before the Val Hockey redundancy package
    all of which had some little bearing on the matter under discussion.

    (Incidentally, as it turned out, the Appeal Fund might well be named
    The Val Hockey Redundancy Fund). When the "acting " Treasurer for the past 2
    years was unable to tell the Board which monies in a particular account were
    available to cover immediate expenses and which part of same were reserved
    for research then all calculations became absurd.

    Before continuing, I wish to make one thing clear. Insofar as the new Board are
    having to tackle the horrendous problems left by the previous administration
    they deserve everybody's support. However, insofar as their initial steps or
    lack of them to solve the problems are concerned then herein lies my reasons for
    resigning. Why are the two remaining members of the old Board left to obstruct
    progress?

    Can you see a new Tory government continuing with Gorden Brown and
    John Prescott in the Cabinet? Starting in December, with their wrangling over
    certain proposed articles in the Magazine and then on to their opposition to the
    newly proposed policy for the MEA, the two members of the old regime are allowed
    to continue with a policy of resistence. As predicted by me in my previous
    E-mail they are fighting word by word and I know this because, yet again
    unaccountably, I was sent an E-mail outlining opposition to the need to update
    MEA literature in line with the new direction of the Association.

    One really upsetting factor for me was to find the prodigal spending of the
    Association in respect of premises. The business which I owned prior to
    retirement occupied one tenth the area and yet had six times the turnover, three
    times the staff and paid the equivalent of a fifth of the rent. Why Buckingham?

    Well it was near the home of the then Chief Executive and given the importance
    of this function, not an unjustifyable choice when stated alongside the reason
    that "rents in Milton Keynes are more expensive". However, for the new Board to
    contemplate staying because of "valued staff" and because "Buckingham is cheaper
    than Milton Keynes" yet again, seems to me absurd. Is this a national charity or
    what? Is Milton Keynes a national first alternative or what? Do not many
    members have to pay for all this out of meagre Benefits? I give up.

    So there it is and yet I would have stayed on if only I had had just one solid
    supporter. Dr Charles Shepherd? I am sorry to say I think not. As our good
    correspondent, Robert Napier has succinctly put it, the medical profession is
    run on an hierarchical basis and Dr Shepherd is compromised by his need to act
    accordingly if he is to make progress in his career. Notwithstanding this
    realisation, I had always kept Dr. Shepherd in good regards and just before 20th
    Jan when the Hooper Report came out, I had written to him offering him my
    support against his accusers in that document. Then came the Board Meeting, on
    the way home from which the penny dropped. Three separate remarks by Dr Shepherd
    came into fusion. Firstly, I remembered that Dr.Shepherd had floated the
    possibility of sharing premises with AfME when the question of the MEA lease
    was being discussed. (Unthinkable as the two lady comrades themselves expressed
    to their credit whilst the two old guard looked on amazed at the opposition.)

    Secondly, he advised that he had been speaking to Chris Clarke and
    reported that a meeting with him and his Chairman had been discussed. I was left
    to decide the venue. Finally, in an aside, he told me conversationally that he
    often talked with Simon Wessley and "if only he had half an hour to spare I
    could ...." and here we were back in the Board discussion. On the train home it
    came to me that he had been about to take on the position of apologist for Simon
    Wessley. You know, the sort you have all heared before. The sort that runs
    ...Hitler was not all bad. He built the Autobahns, you know. He rebuilt the
    German economy. Well, dear readers, make what you like of the above. I have
    formed my own opinion.

    I may well be back in true Arnie fashion. All that is needed is six good men/
    women. Good and true.

    CHRIS ELLIS ( FORMER CHAIRMAN OF THE ME ASSOCIATION)
     
    Last edited: Feb 7, 2020
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  10. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Why were you refused membership?!
     
  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    If CS were to be put on a contract for his services as medical adviser (he was on a contract until 2003, when the Board sacked him) he could no longer remain a member of the Board of Trustees.

    With no CEO or Policy Manager, the Board has considerable influence over the Association's direction and policies.
     
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  12. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Often true for charities with smaller employee bases, as I understand it
     
  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I was the first person in the history of the ME Association to be denied membership. There is a clause in the org's Mem & Arts:

    Membership

    Membership is open to the following:-

    4.1 Individual Members

    (a) The Subscribers;

    (b) Anyone aged 18 or over that the Board of Trustees decides to admit to membership;


    The Board decided twice not to admit me to membership.

    I asked to be provided with the reason(s) for their denial of my application. They would not provide a reason.

    I requested formally under the Data Act copies of all documents held by them upon which they had relied when deciding not to admit me to membership. They did not fulfil this request.

    So on both occasions, I received no formal written explanation for their decision not to admit me to membership.


    At the time (2004) I was list owner of a Yahoo Group called "FreeMEUK" where frank but constructive discussion of the political issues around UK charities was permitted.

    Discussion of political and charity issues had been banned from the MEA's own message board that they had inherited sole responsibility for when AfME and AYME pulled out of what had been a joint organisation message board initiative. The MEA message board was closed down suddenly in 2003 just before the new MEA Board was assembled. (From time to time, discussion of charity issues has also been banned on the MEA's Facebook group, as have members who have asked awkward questions or who have been critical of the MEA.)


    At the time of my first application (2004), the late Christine Llewellyn was Chair of the Board of Trustees and a member of my FreeMEUK Yahoo Group.

    I had mentioned on my group that I had for the first time applied for membership of the MEA. Christine Llewellyn intercepted my membership with Gill Briody, the office manager, and it was held back. (Applications would normally be processed by the office admins.)

    The second application, a couple of months later, was also held back and tabled for discussion at the next face to face meeting of the Board. I obtained a copy of the Minutes which refer only to a discussion having taken place and the outcome of that discussion, ie, no reasons for the decision were Minuted.

    I was told by another Board member, via an informal exchange, that all applications for membership were screened by the Board - this was not the case.

    So what had they got against me?

    Christine Llewellyn told a mutual acquaintance that she considered me the second most politically dangerous advocate/activist after Jane Bryant, of the no longer extant ONE CLICK GROUP, and that the first decision not to admit me to the membership had been made between meetings of the Board. They took weeks to send one of my cheques back.

    I suspect that Christine Llewellyn and Dr Shepherd were discomforted by the platform I had, via my Yahoo Group, for frank discussion of charity matters. I had also raised a number of awkward questions with the new Board and had called for greater transparency around the MEA's financial status, operation, and emerging policies. I had also, the previous year, written to the new Board setting out my concerns for the organisation that Dr Margaret MacDonald (the MEA's former research manager and trustee) had been in the process of launching and seeking donations for.

    I was considered a gadfly; but additionally, I suspect they were unhappy with the company I kept at the time, for several of my associates around that period were also ruffling the new Board's feathers and raising awkward questions.

    I suspect that in denying me membership, Christine Llewellyn, Dr Shepherd and some of the other Board members (but not I learned later, all members of the Board) sought to prevent the potential for my standing for election in the trustee election process, obtaining a seat on the Board and destabilising the status quo; or from being in a position to call for an EGM or for a vote of no confidence; or from requesting a copy of the members' register; or from attending AGMs and raising awkward questions from the floor.

    If that were the case, the irony is that I had no intention of standing for election to the Board.

    Since then, the Mem & Arts has been changed so that in order to stand for election, one first needs to be a member of the Association. Whereas prior to the change, a non member could stand for election, as long as they became a member following successful election.

    (Now, if the Board doesn't fancy you as a potential fellow Board member, it can refuse your application for membership if you are not already a member, or refuse to renew an existing membership, if you have one. So the trustee election process is no longer a democratic process open to all nominees.)

    I haven't bothered to apply since - although Dr Shepherd has softened a little towards me over recent years and Tony Britton and Neil Riley have always been cordial, despite the Board's decision back in 2004, and Neil Riley has on numerous occasions thanked me for my work on ICD-11, when I have forwarded updates on developments with ICD-11 to him for the Board's information.

    So that is all I can tell you.
     
    Last edited: Feb 7, 2020

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