August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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AFME and AYME Merger

Discussion in 'General ME/CFS News' started by Yogi, Mar 14, 2017.

  1. Yogi

    Yogi Senior Member

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    https://mobile.twitter.com/actionforme

    https://www.actionforme.org.uk/news/action-for-me-launches-new-childrens-services-team/

    Not really a surprise. Both these FAKE charities make good partners. Was hoping the corporate action notice would be liquidation or administration instead of merger.

    Both supported and continue to support the PACE trial and the BPS psychiatrists.
     
  2. slysaint

    slysaint Senior Member

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    Looks like Esther Crawley's not being 'transferred' though
    Qand A

    "15.Who will Action for M.E.’s Medical Advisors be from Monday 3 April?
    Action for M.E.’s current Medical Advisers are Prof Julia Newton and Dr Gregor Purdie.
    This will not change as a result of AYME closing or the launch of Action for M.E’s Children’s Services Team"
     
    Hutan, MEMum, Jan and 3 others like this.
  3. Yogi

    Yogi Senior Member

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    She will probably be in the background without being publicly named pulling the strings.
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Interesting .....hopefully this is a good sign
     
    MEMum likes this.
  5. A.B.

    A.B. Senior Member

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    Merging to make up for loss of members? I'm kidding, I don't know why they would merge. Might be MEGA related.
     
    Daisymay and Yogi like this.
  6. user9876

    user9876 Senior Member

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    I suspect it is quite hard to keep fund raising to get enough money to cover staff salaries. And I assume that they both have paid staff. So I assume merging will help cut costs a bit. Also as they have bad reputations I assume less people are willing to donate money.

    The Tymes trust runs entirely as a volunteer organization which is probably how it is viable without massive fundraising efforts.
     
  7. Esther12

    Esther12 Senior Member

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    We still won't be rid of Mary-Jane Willows!

    Presumably that will include the spin from Crawley?

    This sounds terrible. AYME's board decided they would not even support calls for the release of the PACE data Matthees was having to fight for.

    Yeah, they've been so great in information patients about the problems with the PACE trial. How empowering.
     
  8. user9876

    user9876 Senior Member

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    Worse than that they issued a misleading statement around Cochrane having published an independent individual data analysis.
     
  9. skipskip30

    skipskip30 Senior Member

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    All I have to say to this is urgh...
     
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  10. Cinders66

    Cinders66 Senior Member

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    I think it's more a giving AYME a place rather than a merger as I remember on AYMEs Facebook there were posts practically begging for money to continue their work , so I assume they were struggling. But you don't get financial donations when your advisor tells the world how treatable CF is, so I don't have sympathy. AFME likewise plays on what a small charity they are, yet Also they're the leading (biggest) support charity. If they can't recognise that a serious illness , affecting double MS , should be able to bring in both members (not "supporters") and money and the fact we can't suggests something seriously wrong with the name and branding then what use are they? I haven't seen any action to fight the" ignorance, neglect and injustice" from them this year, except a social care meeting maybe at the Appg And a forward ME meeting , how's that worth the CEOs £60,70 000 salary?

    Anyway, they're both support and info group based around helping people self manage, so it makes sense to cut down from the 6 charities around for ME in the UK. I'd like to see MEA & MERUK merge and pool resources too. Then perhsos instead of six representatives all attending the saMe meetings we could see staff devoting energy to campaigning and advocacy
     
    Last edited: Mar 14, 2017
  11. Jan

    Jan Senior Member

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    I always feel terribly sad for the poor uniformed fund raisers, running marathons etc, sadly duped into thinking they are helping pwme by supporting these organizations :(
     
  12. Binkie4

    Binkie4 Senior Member

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    @Jan - uninformed, or uniformed?
    Am afraid we were uniformed fund raisers many years ago. Wish we could get the money back to give to Ron Davis.☹️☹️
     
  13. MEMum

    MEMum Senior Member

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    I 'like' that EC is not being formally transferred - also like the new Avatar. Must get round to getting myself one.

    @Binkie4 don't feel too bad re being uninformed. Many of us were initially duped. It's natural to assume NICE guidelines should be accurate, or that GOSH or AYME are providing up-to-date science-based approach.
     
  14. slysaint

    slysaint Senior Member

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    maybe
    [​IMG]
    or
    [​IMG]

    one from the ME stock photos
    [​IMG]

    my favourite:
    [​IMG]
     
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  15. char47

    char47

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  16. Dolphin

    Dolphin Senior Member

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    I remember when Westcare merged with Action for ME. A few years down the line and the Westcare services no longer existed.
     
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  17. slysaint

    slysaint Senior Member

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    AYME have an online survey for 'false accusations against parents of children with ME/CFS, predominantly by professionals'
    https://docs.google.com/forms/d/1oi...B5Q4NbGoBkdnXeBw/viewform?edit_requested=true

    AfME are going to take it over:

    "Children’s Services Team to pick up AYME survey data
    March 23, 2017

    We’d like to reassure family members who’ve filled in a survey into false accusations against families of young people with M.E/CFS launched by The Association of Young People with M.E. (AYME ) that the data will not be abandoned when AYME closes on Monday 3 April.

    The data will be used by Action for M.E.’s Children’s Services Team to improve the services and support for young people and families affected by M.E. So if you’ve filled out the survey or are planning to do so, don’t worry, your input will not go to waste.

    If you are a parent or family member of a young person who has M.E. you can fill out the survey online until 3 April."

    Hope you are all suitably 'reassured' :rolleyes:
     
    Laelia, MEMum, Chrisb and 3 others like this.
  18. user9876

    user9876 Senior Member

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    I don't see how they will get anything useful from the questions in terms of offering services. The questions don't really say much apart from yes we had trouble.
     
    Laelia, Valentijn and Esther12 like this.
  19. Solstice

    Solstice Senior Member

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    Was just curious, did anyone follow up with afme regarding their signature on the open letter? I reckon the board meeting has passed by now?
     
    Valentijn, AndyPR, Esther12 and 4 others like this.
  20. Esther12

    Esther12 Senior Member

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    I was just thinking the same on seeing this bumped.

    @Action for M.E. - have you agreed to sign this letter yet? Or have you been able to come up for a reason not to that you think you can sell to people?
     
    ladycatlover, Jan, TiredSam and 2 others like this.

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