The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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What should my "chosen charity" be?

Discussion in 'Advocacy Projects' started by Skippa, Feb 12, 2016.

  1. Skippa

    Skippa Anti-BS

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    You know how folks have chosen charities that they donate to monthly, or as and when etc...

    Which charity should I make my chosen charity?

    I know there are several ME/CFS charities out there, but which one is most fruitful, most progressive, most likely to advocate for and achieve workable treatments?
     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    The ME Association, Invest in ME and ME Research UK are all worthy causes.

    Action for ME is not.

    If you give money to AYME I will hunt you down.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    I think Invest in ME - they put on great conferences, have pioneered getting researchers together to talk round the table, and have been raising funds for UK Rituximab study, a Microbiome study and a centre of excellence in the UK.

    They are founded and run by carers and patients - some of them severely ill. They are truly on our side in a way that other ME charities don't appear to be.

    http://www.investinme.org/IIME-Newslet-1410-01 Possibly Most Important.htm
     
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  4. charles shepherd

    charles shepherd Senior Member

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    Skippa - I assume you are in the UK

    This is what the MEA does in relation to information, support and campaigning:

    http://www.meassociation.org.uk/2014/08/what-does-the-me-association-do-and-why-january-2016/
    (I know it needs an update - it's on my list!)

    This is what we do with donations for the MEA Ramsay Research Fund - which are ring fenced for biomedical research purposes aimed at the cause and treatment of ME/CFS:

    http://www.meassociation.org.uk/research2015/current-research2015/

    All the administrative costs relating to research we fund are paid for out of general funds

    And there are no salaries to pay out of the ring fenced research fund

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  5. BurnA

    BurnA Senior Member

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    Skippa,
    I am not UK based so won't advise on a specific charity but I think you need to ask more pertinent questions.
    These are for example the questions I would ask :

    Which charity supports research into biomarkers, biological causes etc.
    Which charities denounce the PACE trial and any further research into this model.
    How much, if any, do charities pay their staff.
    Which charities are fully transparent in what they do.

    Ask yourself what's important for you and then choose the charity based on those specifics.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    If you want to have a look at the type of quite detailed professional information and support that we provide through a range of (mainly honorary) advisers to both members and non members, have a look at the questions and discussions that are currently taking place on our Facebook page:

    https://www.facebook.com/ME-Association-171411469583186/
     
  7. Skippa

    Skippa Anti-BS

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    Thanks all, I would take a look at those charities.

    Thanks @charles shepherd for the direct links, very helpful :)

    Oh ps, yes I am UK based.
     
  8. Skippa

    Skippa Anti-BS

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    I can't see that 'cos I don't use Facebook.
     
  9. Sasha

    Sasha Fine, thank you

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    I think these are good questions.

    Although I'm UK-based, I often give to overseas charities if they're doing projects I find particularly impressive (to END ME/CFS, for example, and the Lipkin/Columbia work). Worth bearing in mind that if you pay tax, that's less tax-efficient, though, because UK taxpayers can get Gift Aid added to a UK donation.

    I donate on the first of every month and just look around to see what seems most worthwhile on the day, and give what I can afford for that month.

    I've also given to the Forgotten Plague and Canary in a Coalmine documentaries, because even though they're not biomedical research, they're outreach that will, in the long run, pull in more money for biomedical research. They have the potential to reach not just non-PWME, but PWME who aren't in the community network yet, which is very important. And I think #MEAction is very worthy of support. We've needed a mass-advocacy platform for years, and suddenly we can reach 10,000 patients and supporters (and potential biomedical research donors) at the flick of a switch.
     
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