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The history of Action for M.E. (AfME) - a question

Discussion in 'General ME/CFS Discussion' started by Persimmon, Mar 22, 2017.

  1. Persimmon

    Persimmon Senior Member

    AfME's website used to contain a history of the organisation.

    This took the form of a detailed timeline, going back to Sue Finlay's original newspaper article, and documenting Martin Lev's roles... It was very good.

    AfME no longer make this document available. It hasn't been on their website for years.

    Does anyone have access to a copy of it?
    SamanthaJ and sue la-la like this.
  2. slysaint

    slysaint Senior Member

    there is this from 2010:

    "It is noteworthy that Action for ME, a charity that was set up by ME sufferer Sue Findley as a self help group for people with ME, has been so influential in supporting and working on a trial that assumes membership of a self help group to be a predictor of poor outcome of treatment ( Trial identifier, section 2.3)and with a trial whose investigators believe AfME's members to be mentally ill."

    "Action for ME: the other main UK patients' charity, Action for ME (AfME), has had a chequered history. In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission and the charity subsequently dropped "Chronic Fatigue". On 24th July 2003, in a statement approved by its Council of Management, the charity announced that it is funded by the Department of Health."

    "In March 2001 AfME produced an excellent report, Severely Neglected: M.E. in the UK. This report was the result of a membership survey of 2,338 respondents, making it the biggest survey ever done on ME in the UK. Its confidential Preliminary Report of 28th February 2001 stated: "graded exercise was reported to be the treatment that had made most people worse" but in the published version, this was changed to reporting that graded exercise made 50% of respondents worse. This makes it all the more surprising that AfME "is working closely with Wessely and his colleagues on research initiatives funded by the MRC and the NHS" when those "initiatives" are based on graded exercise."

    "The M.E. community are not the instigators of politicised conflict, the Wessely-School are. These people are not open to reason, they are the enemy of good science and they are the enemy of M.E. sufferers."
    Last edited: Mar 25, 2017
  3. Tyto alba

    Tyto alba

  4. Esther12

    Esther12 Senior Member

    Thanks. Interesting for someone who wasn't aware of a lot of the history. Anyone got any more details on these bits:

    2006: The Trustees also criticised NHS Plus guidance on Occupational aspects of the management of CFS which were published in October.

    1994: The M.E. charities filled the letters page of the Lancet, responding to a letter from Dr Simon Wessely. Dr Wessely had argued that M.E. was the same as CFS and that the World Health Organisation (WHO) Onternational Classification of Diseases ICD 10 should reverse its recent decision to include M.E. in the section on Diseases of the Nervous System and place it instead within Other Neurotic Disords, the section which includes CFS and depression.
  5. Persimmon

    Persimmon Senior Member

    Dear @slysaint,
    That's a colourful read. Thanks for posting.

    Dear Barn Owl (@Tyto_alba),
    You are BRILLIANT!
    That's exactly what I was trying to find. Great big 'thank you'.

    The early days of AfME were a tale of inspired volunteer efforts from an cast of interesting characters.
    Eg Sue Finlay
    Prior to founding the organisation that became AfME, she and her (famous poet) husband spent 20 years co-creating one of Britain's great 20th century gardens ("Little Sparta").
    Eg Martin Lev
    Martin was AfME's first organiser/administrative officer/ Director. Before coming down with ME, he had been an adolescent star of stage and screen, having co-starred with Jodie Foster and Scott Baio. I gather he was a heart-throb, too.
    He suicided after an ME relapse.
    Eg Clare Francis
    When Clare was appointed President, she was a very prominent & admired public figure in the UK, as a result of her solo yachting feats. Trained at both the Royal Ballet School and University College London (economics), she went on to write best sellers.

    These three had lots of contacts, and other prominent figures were drawn into the organisation, including (then very high profile) film-maker David Puttnam, Melvyn Bragg, Joanna Lumley et al.

    Does anyone have any personal experience of AfME's early years that they'd like to share?

    Any others?
    Esther12 likes this.

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