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The future and funding of UK ME/CFS charities

Discussion in 'General Advocacy Discussions' started by Dx Revision Watch, Sep 12, 2019.

  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Well it’s the argument that we are all housed under one roof. So there’s the rspca organisation then there a youth wing of that. The main benefit would be from having a big group rather than lots of different ones with the potential for overlap of resources /materials and time so for eg at a forward ME meeting or the recent meeting at scotland where possibly all DR S, SC , An meruk rep all attended, it might be just one of them freeing up time and resources /travel expenses for others to do something else. Plus as you say TYMES is specifically about kids support, does it also inform about research of fundraise for research. If it was part of a larger group then families would be exposed to the wider ME world outside support & schooling ?

    I don’t see why meruk not being a member org impacts a merge. It’s focus is research , it seems to have near same beliefs as mea, mea has the Melvin Ramsey research fund & some of Its work is On building up research. Meruk drs and staff could bring that to mea or a post mea merger, where we need a segment focused on science and research.
     
    Last edited: Sep 12, 2019
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  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The closure of MEPF wasn't just about lack of health:

    Statement from two of the MEPF Trustees, Dr Claudia Gillberg and Geoffrey Jones

    GoogleDocs Link: http://bit.ly/statementMEPF

     
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  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    You're not going to get Jane Colby working alongside what remains of AYME staff.
     
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  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    You might think I'm being overly negative - but there is a great deal of politics between the membership orgs: AfME > MEA > AYME > TYMES Trust > 25% Group.
     
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  5. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    For a start, and leaving aside whether MERUK would want to merge with a patient membership org, perhaps MERUK might not wish to merge with an org like AfME, whose research committee has Stephen Holgate on it.
     
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  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    And rolling up a number of orgs into one would mean putting an awful lot of trust and faith in the direction and policies of one org. Let us not forget AfME in the era of Sir Peter Spence; or prior to that, Chris Clarke.

    In 2002/3 the words "and chronic fatigue" suddenly appeared on AfME's logo. CEO's come and go.
     
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Yes, some won’t have much to leave. A lot of people in my country do seem to live in property they own by the time they die; people can inherit money or property from parents and the like.

    Getting ill when younger may mean there are more childless people. A lot of people’s estates tend to go to children.
     
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  8. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    And AfME isn't constituted as a membership org in the same sense that the MEA is. Only the BoT of AfME has a vote - not the "members". There was a time when even its AGMs weren't open to the "members". Even now, I don't think AfME's "members" vote in the trustee election processes.
     
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  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    In theory, under Company law, the membership of the MEA has the right to request a copy of the Members Register, call an EGM and propose a vote of no confidence in the Board.

    AfME "members" can't do that.

    So if you were to envisage folding the MEA and several of the smaller orgs into AfME (or into a newly named org) the first hurdle would be the politics over how this merged org would be constituted going forward.

    Would the members have membership status that allows them to attend AGMs; vote at AGMs; vote on resolutions and matters of policy and position or on proposed changes to the Mem & Arts; participate in a democratic ballot process for trustee elections; nominate themselves or others in trustee elections; call EGMs etc.

    Or would the newly merged org retain the AfME "members" status, where the Board of Trustees, itself, votes for who joins its Board - not the members - who are basically powerless subscribers to an organization whose only true members are its Trustees/Directors?

    I know what I'd want.
     
    Last edited: Sep 12, 2019
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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes you’d want to take the positives forward and leave a lot of the way AFME currently works behind.
     
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  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    But how would you set about achieving that?

    Last year, AfME pulled in £1,268,718; no figure available for Year end 2018 for MEA, but for Year end 2017, £325,997.

    MEA operates with far fewer staff and no CEO or other senior management other than Gill Briody.

    One might assume that rather than close both orgs down and reconstitute as a new org, and in order to minimise administrative disruption, that the smaller org would be absorbed into the larger org, no doubt shedding some of the smaller org's staff who may not wish or be in a position to relocate to another part of the country. But there are several ways of merging and restructuring.

    And not all charities have the power to merge - one would need to review their governing documents.



    Guidance from the Charity Commission on different ways of merging:

    https://assets.publishing.service.g.../uploads/attachment_data/file/638161/CC34.pdf

    Charity Commission for England and Wales
    GUIDANCE Collaborative working and mergers: an introduction

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

    Worth skimming sections: Ways of merging and Issues to consider

    https://www.charityfinancials.com/c...should-more-charities-consider-them-1733.html

    Mergers: should more charities consider them?
    20 October 2017

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

    https://www.gov.uk/guidance/how-to-merge-charities

    Guidance
    How to merge or link charities
     
    Last edited: Sep 12, 2019
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    I don’t know - I’ve never considered this until today and don’t know anything about the legal and practical implications of Charity reorganisations.
     
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  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Anyhoo, I really shouldn't be here, having retired.

    Should I ever win the lottery (which isn't very likely since I've only ever bought one ticket the night the National Lottery launched), but if I did and won millions, after buying the leather biker jacket I've hankered after for years, I'll pledge a substantial amount to kick-start a new charity.
     
  14. Kitty

    Kitty Senior Member (Voting Rights)

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    This is why I've given up on membership organisations and just donate directly towards research when I've got a bit of spare cash. I know you can't escape politics in any organisation, especially those run by volunteers, but it just exhausts and depresses me.

    I want to see money going towards good science; I know here's a place for political lobbying, CPD for medical professionals, and support for patients, but given the scarcity of funding, unpicking disease mechanisms and defining a reliable diagnostic pathway seems as if it has to be the number one priority. It's extremely unlikely there'll be an easy fix for such a complex condition, but we'll never get serious money into management and treatments until it escapes the contested illness category.
     
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  15. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Moderator note:
    This post and the subsequent replies about the ME Association have been copied from this thread.
    https://www.s4me.info/threads/forward-me-group-minutes-10th-july-2019.11269/#post-202747



    There’s been no campaigning on this though. The Scottish FOI was 2017. Did forward ME just decide nothing could be done until 2020 and a NICE review, make that decision and we just wait? . Surely waiting for the establishment to evolve doesn’t have to be our charities course of action. It’s like when MRC refused charities request 2012 for continuing ring-fenced funds. Unless you read the minutes I doubt members of charities were even told or certainly not in a “they’ve refused what we asked so we are starting this campaign” way. Or when we need better services but we wait until the day research will prove our true medical home.

    For an illness as down trodden ,misrepresented, neglected, under resourced, the representational charities (excluding #MM) are so passive And acquiescent. Why haven’t they reformed an Appg. Why isn’t there a national call for an ME/CFS strategy instead of that just being something in the Scottish #MM manifesto, who by the way refer to the Tymes foi findings in their section on education. Their document is great but why don’t we see something similar from mea or AFME who just speak vaguely about a desire to inspire & inform as their own strategy.? I can only recall a campaign in 2017 regarding NICE ( after America had published some groundbreaking stuff regarding GET I think) and then there was the PACE petition 2005.

    I know some people argue that charities can do what they like but we are unfortunate to have the main two deciding that campaigning isn’t something they will do because many other major charities do. For example this BELOW is from Parkinson’s uk and it’s a charity leading a network of patients and volunteers in endlessly campaigning every month until they are satisfied with their lot.

    It’s positive, it’s inspiring and it both helps patients feel they can make a difference whilst proving leadership & mobilising them to make that difference. with the mea I think that it would be best if they got a CEO to bring it up to fulfilling its expected role and Dr Charles Shepherd had the medical advisor position .
     
    Last edited by a moderator: Sep 20, 2019
  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    But first, the MEA's Board of Trustees (or the membership) has got to want to engage a CEO.

    As things currently stand, the BoT has complete control over policy, direction and how funds are spent. And if Dr Shepherd were to become a salaried Medical Advisor, he could not remain a trustee. Also, looking at their most recent Year end accounts, could the MEA afford a salary of £50-70K plus employers' additional expenses to pay for a CEO?
     
    Last edited: Sep 18, 2019
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  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Unlike AfME, the MEA is constituted as a membership organization. Under company and charity law, the members have the right to request a copy of the Members Register and to call an EGM, at which for example (and theoretically) a vote of no confidence in the running of the organization might be proposed or at which a resolution might be proposed that the organization should employ a CEO.

    I say "theoretically" because in 2004, someone known to me did apply for a copy of the Members Register and this was initially refused. If another request were to be submitted, in theory, the MEA Board could delay providing a copy of the Register until the individual (or individuals) who had requested a copy were due to renew their annual membership; at that point, they could, theoretically, be denied renewal of their membership, which would bar them from voting at any EGM that might be called or in any resolutions that might be proposed at an AGM, just as my own application for membership of the MEA was denied, back in 2004.

    Up until 2003, Dr Shepherd had received a salary as Medical Advisor*; he subsequently stood in the trustee elections, was elected to what remained of the Board of Trustees and has remained a trustee ever since:

    BMJ Report
    Third Sector Report

    *Whilst trustees/directors can submit for reasonable expenses they are not permitted to draw a salary from the organization unless they stand down from the Board.
     
    Last edited: Sep 19, 2019
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  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I suppose current members are going to be supportive or newly ill ignorant whereas critics won’t be members,so that’s an issue regarding getting change.

    Why did Dr Charles Shepherd move from the paid medical advisor role to a non paid trustee medical advisor? Was there a CEO in the charity before the melt down years ago ? Does the not having even the basic leadership structure all other major Charities have reflect the poverty or a disinterest to be like other illness charities? Do you know much about the board, i don’t know what their role is , mea seems very much Dr Charles Shepherd led. Do they just meet occasionally, or are they all jointly deciding everything? Thanks.

    Edit I understand the cost of a CEO but obviously most charities have one and I think that theres broad leadership qualities a ceo should have beyond the medical expertise of a medical advisor. If mea became more dynamic, proactive, campaigning, inspiring , relevant with lots of connection with volunteers etc then I think that they would generate more income. Obviously AFMEs isn’t a good example, i’m not sure wheher SC is still off sick, but there’s no difference whether she is or isn’t that's the problem.
     
    Last edited: Sep 19, 2019
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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    He was dismissed as paid Medical Advisor in May 2003 and his contract terminated. See these links I provided in my previous post:

    BMJ Report
    Third Sector Report

    Yes, Val Hockey had been CEO. She took a redundancy package in late 2003-early 2004, after a number of trustees had left and a new Board had been assembled. The number of staff were cut to the bone to reduce running costs.

    I cannot speak for the MEA Board of Trustees, but I would think the staffing structure since 2003-2004 reflects the lack of funds and the Board's preference.

    There has never been any statement that I am aware of by the BoT that they would choose to employ a CEO, if and when funding permitted.

    The MEA's trustees are also directors of the charity for the purposes of the Companies Act. The MEA has a governing document - the Memorandum & Articles of Association which sets out how the org is constituted.

    The Board meets regularly and summaries of their meetings used to be posted on the MEA's website and possibly still are. The trustees are responsible for running the organization. Since there are no senior staff other than Gill Briody (who is currently Company Secretary), the BoT determines how the org operates. There is an annual AGM to which members can attend. The MEA's annual Year End Report and Accounts are available from the Charity Commission website.

    Dr Shepherd is just one of several trustees.

    DR CHARLES BERNARD SHEPHERD (appointed 6 December 2003)
    EWAN STUART DALE (appointed 2 March 2004)
    NEIL HARRISON RILEY (appointed 8 June 2004)
    RICK OSMAN
    NICKI STRONG
    MARTINE AINSWORTH-WELLS
    Nicola Anson (appointed 4 August 2017)

    (Rick Osman had been a trustee during the Val Hockey era.)


    The Board has regular meetings with agendas, minutes and summaries of minutes. Decisions may also be made in between meetings of the Board or made in between meetings and ratified at the next BoT meeting. One trustee will have the role of Chair of Trustees, another Treasurer. Sometimes the role of Company Secretary or Acting Company Secretary has been take by a trustee, but the office of Company Secretary is currently held by Gill Briody (MEA's Operations Manager).

    Edited to add:

    You can download the MEA's Annual TRUSTEES' REPORT AND FINANCIAL STATEMENTS from this page on the Charity Commission site:

    https://apps.charitycommission.gov....steredCharityNumber=801279&SubsidiaryNumber=0
     
    Last edited: Sep 19, 2019
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  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The ME Association's current office holders:

    https://www.meassociation.org.uk/about-the-mea/patrons-trustees/

    ME Association Board of Trustees
    Chairman:
    Neil Riley
    Vice-Chairman: Rick Osman
    Hon Treasurer: Ewan Dale
    Trustees: Martine Ainsworth-Wells, Dr Charles Shepherd, Nicki Strong
    Associate Trustee: David Allen
    Co-opted Trustee: Nicola Anson

    Company Secretary: Gill Briody

    ME Association Panel of Advisers
    Hon Medical Adviser: Dr Charles Shepherd
    Hon Paediatric Medical Adviser: Dr Nigel Speight
    Hon Dental Adviser: Dr Richard Cantillon
    Hon Dietetics Adviser: Sue Luscombe
    Hon Welfare Rights Adviser: Ann Innes


    Governance and Operational Policy

    I have attached the PDF of the MEA's Mem & Arts for ease of access.
     

    Attached Files:

    Last edited: Sep 19, 2019

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