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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. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    This thread has been split from
    https://www.s4me.info/threads/jk-rowling-donates-£15-3m-to-edinburgh-ms-research-centre.11260/

    And as I've said in another thread, since 2004, the MEA has been run by a small and relatively unchanging Board of Trustees who determine its policies and have considerable control over the organization's direction. There may be some key members of the BoT who might not welcome the type of staffing structure required to support a larger organization with a broader remit. I doubt it's solely a matter of lack of funds that has seen the MEA running without a CEO or equivalent senior position since Val Hockey took a redundancy package back in 2004.
     
    Last edited by a moderator: Sep 16, 2019
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  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Thanks for your comment and your replies elsewhere. I agree. As someone who is no longer a member or “supporter” as charities now call us, I’m not up to date with how democratic or transparent or aspirational they seem to members. The thing is, what does seem evident is that it is the charities as well as the illness community itself who are the ones who need to pull us into a better place of more reach, more community effort and fundraising etc and more campaigning.
     
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  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Well, as someone who was denied membership of the ME Association, twice, in 2004, firstly via "Chair's Action" in between meetings of the Board of Trustees, and for the second application, following discussion of a minuted agenda item regarding my application at a Board of Trustees meeting, in which it was decided I was not a fit person to be admitted into membership of the MEA, I'm perhaps not the best person to comment.
     
    Last edited: Sep 19, 2019
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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    This is an area where we could do a lot better, I believe, without all the challenging issues of running shops and the like.
     
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  5. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Why were you denied membership???
     
  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Out of interest I looked up Parkinson’s uk who have income of about £35m/ year.

    It is interesting to see how they spent £39m in 2018.


    Like MS society they spent millions on raising funds, but more £10m on research, and significant funds on support and services :


     
    Last edited: Sep 12, 2019
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    (Unofficially) because the then Chair of Trustees and at least one member of the Board of Trustees had considered at the time that I was a political threat to the stability of the organization and under their Mem & Arts, the MEA has the right to deny membership to anyone whom it deems unsuitable to admit to membership.

    I was however given no written reason(s) for their decision to twice reject my application and although I requested under the Data Act, copies of all information held about me by the Association on which they had relied when deciding whether to approve my application, this request was ignored. I was the first person to be denied membership of the Association.

    (Note that applications for membership would normally be dealt with by the MEA's office admin staff and not considered by the Board of Trustees either between meetings of the Board, or placed on the agenda for discussion at a Board meeting, or via a "Chair's action" decision.)

    The MEA subsequently made changes to its Memorandum & Articles of Association which govern how the charity conducts its business, via a membership postal vote and EGM, which included changes that would permit the Board to decide whose names would and would not go through to the ballot paper in its annual Trustee elections. They also changed the Mem & Arts so that in order to stand for election to the Board of Trustees, a nominee would need to be a member of the Association. (Whereas previously, non members could stand for election, but would be expected to become members if they were elected onto the Board.)

    So now, if you are denied membership of the Association, you cannot stand for election to the Board.

    [Edited to insert text: The MEA subsequently made changes to its Memorandum & Articles of Association which govern how the charity conducts its business, via a membership postal vote and EGM, which included changes that would permit the Board to decide whose names would and would not go through to the ballot paper in its annual Trustee elections.]
     
    Last edited: Sep 19, 2019
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  8. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I would add that the MEA Board of Trustees has been happy to receive updates on ICD-11 and other classification systems for some years now, for which I receive thanks.
     
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  9. NelliePledge

    NelliePledge Moderator Staff Member

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    I know from someone involved in a local Parkinson’s group that it’s not all rosy in those charities and there’s tension over the funding between local and the head office. However in my opinion the difference between level of support for ME national charities and MS/Parkinson’s is because MS and Parkinson’s do have a local presence and are involved in supporting patients. In ME the local situation is ok in some areas with effective groups like Sheffield having very good local charities that can bid for funding and get support to people in their areas. In other areas it appears to be a complete wasteland in terms of any M.E. support group presence. Facebook Groups are all well and good for sharing information and individual peer support. But ineffective in advocacy and leveraging support from local authorities and influencing CCGs.

    AFME are piloting individual advocacy service which I think is a positive move.
    MEA seem to be making some progress on at least getting meetings to lobby DWP, medical colleges
    Nina Muirhead May be at the start of some positive influence on medical education.
    NICE review was due to lobbying and publicity raised by Millions Missing and MEAssn petition.

    In order to get more people with ME involved they need to be engaged locally. I’m not saying usurp existing local charities but where there aren’t local charities get behind local informal groups to provide the organising support needed, where there aren’t local groups look to generate them. I can’t believe I’m saying this but if AFME could build on individual support/advocacy provision and get alongside local groups with ME Association focussing on lobbying government and medical professions and on funding research. I think there could be an argument for merger of AFME and MEA into a new more effective mainstream ME charity. Which could be a better focus for fundraising for support and research.

    There needs to be more effort put in to local activity because if there is any positive shift in NICE guidelines that’s only the beginning in getting any shift whatsoever in practice on the ground. That isn’t going to change unless there are people locally demanding it from their CCGs. It needs huge advocacy effort nationally and locally otherwise its going to be stonewalled.
     
    Last edited: Sep 12, 2019
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    A merger was mooted in the period following the MEA's funding crisis during the 2004 post Val Hockey era, when it was touch and go whether the MEA could be kept afloat or would need to fold.

    Not a cat's chance in hell, I would wager, of Dr Shepherd agreeing to a merger with AfME. The MEA is run by its Board of Trustees - they control its policies and direction and Dr Shepherd has been a Trustee/Director since 2003.
     
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  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Realise there are issues arising from history that might make it difficult to impossible. I still think it could be a practical option to improve the situation at some time in the future. If it could be seen as creating a new organisation taking forward positive elements and leaving behind negatives.
     
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  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Tbh when dr S leaves, retires, because they don’t have a ceo structure, the chance of mea finding someone else and to work for free (I think that dr S was able to make up an income elsewhere but few can do that & Also even want to, dr s has ME himself ) are small. There was another group (yes another 1) called CFS foundation or something that folded when it’s lead passed away, obviously AyME folded too (to be taken in by its sister who always clsomec they wre separate) I suspect there might be a merger then but we need professionalism and growth and volunteers but Also an inspiring field and a campaigning field, very quickly. I don’t want to just keep on plodding on.

    There are alternative possible mergers such as MEA & TYMES & meruk

    There’s currently lots of essentially single headed groups 25%, TYMES, MEA, MERUK, BRAME some which also have small number trustees, all advancing in age, that have been going on the same for years.
     
    Last edited: Sep 12, 2019
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  13. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    With regard to legacies I think that Parkinson’s And dementia especially are in a much more favourable position than us because they are more end of life illnesses, they are degenerative ie you are going to die in a potentially bad state and as you decline in your 70/80s you might think about where to leave that wealth & house you built up in your healthy youth.
    I’m an example of someone who’d got very severe by my twenties, have never worked seriously, live in a council house, won’t die possibly for years but will have nothing to leave anyway.
    Obviously there are other many scenarios for cases and It’s worth Encouraging people in our community but our potential is less afaic.

    AFMEs Facebook & Twitter seem to revolve around a hundred and one ways through any medium for the newly ill to explain that we are more than tired.
     
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    One would also have to consider that although there will be some overlap in membership between AfME and the MEA, there will be members of MEA who would not be prepared to join AfME.
     
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The CFS Research Foundation (UK) was a research only org - not a patient org.
     
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  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    BRAME is essentially Christine and her daughter and BRAME does not run consultation exercises with patients and as far as I can see, when Christine or Tanya are present as reps of BRAME at meetings, like Forward-ME, or local services they are representing themselves.

    The BRAME website doesn't appear to have been update since 2005.
     
    Last edited: Sep 12, 2019
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    Right I’m one. But if something for the future could replace them I would at least give it a chance.
     
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  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    But TYMES charitable objectives are specifically for children and young people and what exactly would they bring to a larger org?

    31 May 2018 Income: £11,761
     
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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    MERUK isn't constituted as a membership org.
     
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  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I think the best chance would be a completely new membership org, independent of the existing orgs - but that would take time and £££££.
     
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