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Action for ME - New sponsor - The Haywoods group

Discussion in 'General ME/CFS News' started by Sly Saint, Mar 10, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Haywoods Are Proud To Support Action for M.E.
    March 06/The Haywoods Group

    We are delighted and proud to announce that we are supporting Action for M.E., a charity founded to tackle the misconceptions of this misunderstood illness, and to support those who suffer from it.

    In the words of the charity itself, “Imagine having months off from work because you are so ill, so pole-axed by fatigue and pain, that you are no longer able to tell the time when you look at the face of a clock. Imagine you can no longer read even the shortest paragraph because your power of concentration is reduced to zero.

    That is the experience of many thousands of people with the chronic neurological condition myalgic encephalomyelitis (M.E.), sometimes diagnosed as chronic fatigue syndrome (CFS, or M.E./CFS), which affects around 250,000 people in the UK, and 17 million worldwide.”

    We were pleased to attend a recent event held by Action for M.E. at No. 10 Downing Street, and to learn more about this wonderful organisation which provides information and support to sufferers of M.E., works with policy makers and parliamentarians on decisions that may affect M.E. sufferers, and funds research to bring more money, people and solutions into the field."

    http://haywoodsgroup.com/sponsors-a...al&utm_source=twitter.com&utm_campaign=buffer

    @Action for M.E.
     
    Moosie, petrichor, fossil and 7 others like this.
  2. Awol

    Awol Senior Member (Voting Rights)

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    Good grief what a load of baloney!
     
  3. Valentijn

    Valentijn Guest

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    Has anyone suggested to AfME that they might want to stop using Oxford criteria to describe ME? :p
     
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    :rofl::rofl::rofl::rofl:

    That actually made me snort with laughter! (I know. I do have a weird sense of humour)
     
    Moosie, Esperanza, Daisymay and 17 others like this.
  5. Valentijn

    Valentijn Guest

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    Perhaps they've confused tackling with embracing? It certainly could get awkward in the wrong situations.
     
  6. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I live in a farce. This is the third time I've wanted to say that today reading on this forum, and now I'm saying it.

    eta - minus the swearing
     
    Last edited: Mar 10, 2018
    Moosie, Daisymay, Allele and 9 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Talk about trivialising what is usually a lifelong illness and means many of us have to give up work altogether.

    Anyone fancy contacting the funder and suggesting they picked the wrong ME charity and explaining why? (sorry I'm not really up to it atm).
     
    Moosie, Allele, Alison Orr and 18 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

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    What is this bit on about ...
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "a charity founded to tackle the misconceptions of this misunderstood illness, and to support those who suffer from it"

    To be fair to the original founder Sue Finlay it was set up with good intentions:

    Originally set up as the M.E. Action Campaign c 1987, then (ironically) just ME Action, registered as a charity in Scotland.
    see also Martin Lev
    http://me-pedia.org/wiki/Martin_Lev

    The charity relaunched itself as Action for ME and Chronic Fatigue in 1993 (dropping chronic fatigue after uproar from members).
    What happened afterwards.......well
     
    Awol, Esperanza, dangermouse and 7 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The Haywoods Group is a family-owned, residential development business. For over 20 years, we have delivered homes and investment opportunities for savvy residential property purchasers, forming the link between the developer and buyer.

    Hob-nobbing at No 10 as well

    It all seems pretty creepy

    I would have thought they funded research to try to help people with the illness but I suppose that does not come in this sort of radar.
     
  11. Daisymay

    Daisymay Senior Member (Voting Rights)

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    The original MEAction was very good.
     
  12. NelliePledge

    NelliePledge Moderator Staff Member

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    AFME tagged in on original post so I guess they will explain when back in the office on Monday....
     
  13. Barry

    Barry Senior Member (Voting Rights)

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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  15. Samuel

    Samuel Senior Member (Voting Rights)

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    newcomers might want to know that afme did things like support pace.

    newcomers might want to know that meaction.net is 100% unrelated.
     
    Moosie, Esperanza, Daisymay and 8 others like this.
  16. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    It's been a while now. He's a description by Prof Malcolm Hooper on a talk by Chris Clarke in 2001

    "
    Address by Chris Clark Chief Executive of Action for ME - Aug 15th 2001

    ...

    He was quite happy with the confusions surrounding the use of both ME and Chronic Fatigue Syndrome, CFS, and insisted that there was no value in debating the best term to describe ME. The use of ME, CFS, CFS-ME, ME/CFS seemed to him to be a matter of choice and of no great significance. The terms could be used interchangeably.

    "
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Whilst I think it's generally accepted that Oxford is obsolete , there is still a problem agreeing a criteria for research. Fukada isn't great either and there is a lot of research using this one too.
     
    Esperanza, ladycatlover and Trish like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Esperanza, Samuel, Daisymay and 3 others like this.
  19. Hutan

    Hutan Moderator Staff Member

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    This thread has been split to separate the discussion about AfME's membership of S4ME from the sponsorship of AfME by the Haywoods Group (which remains here).

    Please take care to choose the right thread to continue a discussion.
     
    Last edited: Mar 13, 2018
    TiredSam, Andy and JohnM like this.

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