Little Help for ME sufferers

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 28, 2008.

  1. tansy

    tansy New Member

    by Linda Crowhurst
    Eastern Daily Press June 25th 2008 p. 18

    (may be reposted)

    All ME sufferers in Britain and around the world will draw hope from
    Kevin Short ‘s momentous victory in court (Norwich ME suffer wins
    court ruling EDP June 19th 2008). I am severely affected and my ME
    needs go completely unmet in Norfolk.

    Luckily, I have a very supportive GP, who knows that my condition is
    neurological, but his hands are tied when it comes to referring me to
    consultants, because there is not the interest nor the knowledge nor
    the understanding or the availability of biomedical clinicians to
    treat me. I am left with virtually nothing, no hope and worse, no
    biomedical understanding to ease the pain, the paralysis, the numbness,
    the digestive, the autonomic and endocrine issues : the fifty plus
    physical symptoms that I experience .

    The level of sickness in severe ME has been compared to that of an
    AIDS sufferer two months before death or a terminally ill cancer
    patient and I have been like this for almost fifteen years, while all
    that NICE is prepared to recommend is useless “activity management”;
    without dealing with the underlying disease.

    I need proper tests, treatment and advice on specific symptoms and
    issues. I want to be able to access services in Norfolk, as any other
    person with a chronic illness is able to do.

  2. quilp

    quilp New Member

    I remember that feeling of pain and suffering. I felt so bad that the offer of a pill to end it all would have been willingly taken. I never believed I could go through so much pain, yet be rejected with do much indifference.
    I had an appointment with a GP at my practice. She told me to make another appointment because she had to read up on the illness M.E because she knew nothing about it.
    She was a young GP with no knowledge of this illness.....This ladies and gentlemen was in the year of our lord 2007.
    I am slowly drowning in a sea of pain and suffering whilst those that can help, stand on the shoreline and watch with indifference. How can I ever forget, how can I ever forgive ?

    Love Mark
  3. Bluebottle

    Bluebottle New Member

    Linda Crowhearst is a remarkable woman. Despite being so ill she campaigns for proper treatment of M.E. patients with all she's got.
  4. tansy

    tansy New Member

    that cases like Linda's shock those who think of it in terms of chronic fatigue. The wesselyites need to be made accountable for their role in creating the situation Linda, and many others, now find themselves in.

    Who here has access to a NHS funded ME specialist? If you think the fatigue clinics are unsuitable for PWME then please tell the DoH and your MPs; keep telling them until it starts to sink in.

    Linda is a tremendously courageous woman. So much suffering and yet she continues to advocate. If she can do it............

    tc, Tansy
    [This Message was Edited on 06/30/2008]