International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Useful letter by Lady Mar to show doctors keen on promoting GET

Discussion in 'General ME/CFS News' started by Countrygirl, Mar 3, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    This is a letter that the Lady Mar sent to The Times a few days ago (and which they declined to publish) as it may be useful to show a doctor who is keen to push you into accepting GET.

    A misunderstood condition

    MAR, Countess

    letters@thetimes.co.uk

    Sir

    NICE is in the process of replacing their guideline for ME/CFS, but this will take time. Patients with ME/CFS in this country continue to receive damaging treatment.

    Despite incontrovertible evidence of disabling metabolic abnormalities in their muscles, they are advised to “exercise back to fitness”.

    They are not simply “deconditioned” as claimed by many psychiatrists. Forced exercise above very low levels characteristically incapacitates most patients.

    The “exercise will make you better doctrine” applied to ME/CFS is thus profoundly incorrect and has no scientific evidence base. The human cost is enormous, with many sufferers from ME/CFS rendered much worse by seriously inappropriate medical management. Even worse, such management is inflicted compulsorily on some patients, both adults and children, with their informed consent being bypassed via egregiously erroneous use of mental health and child protection legislation.

    Yours faithfully Mar Countess of Mar, Forward-ME
    Dr William Weir, Infectious Disease Consultant
    Dr Nigel Speight, Paediatrician
    Dr Charles Shepherd, ME Association
    Dr Vance Spence, ME Research UK
    Dr Gareth Tuckwell, ME Trust
    Dr Paul Worthley, ME Trust
    Jane Colby, TYMES Trust
    Helen Brownlie, 25% ME Group
    Tanya and Christine Harrison, BRAME
    William and Janice Kent, ReMEmber
    Hannah Clifton, ME Trust
    Clare Ogden, Action for ME

    Sent by the Countess of Mar, House of Lords, Westminster, London SW1A 0PW. Telephone 020 7219
     
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  2. Countrygirl

    Countrygirl Senior Member

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    Also from Forward ME is this document written by Jane Colby of Tymes Trust which outlines her suggestions for the new NICE guidelines:

    BEGINS * The separation (not under CFS, but parallel with it) of guidance for classic Ramsay/ICCdefined Myalgic Encephalomyelitis.
    NICE has already identified a subgroup of CFS fitting the ICC criteria for Myalgic Encephalomyelitis.

    The Guideline would then be named "Guidance for ME *and* CFS". For the ME section: * A separate Children's Panel (as with the CMO's Working Group) to produce a children and young people's section of the Guideline. * An emphasis on post exertional deterioration after even minimal effort.

    * The abandonment of recommendations for CBT and GET for this reason; * The recognition that under equality legislation ME patients have a protected characteristic; disability discrimination against these children is at present rife and needs to be addressed.

    * The recognition that education for these children should no longer involve a constant drive to attend school whilst too unwell as this a) is detrimental to their recovery and b) contravenes their legal right to a 'suitable education'. * The recognition that interactive virtual education is a suitable and economically viable alternative to school attendance as it assists both recovery and academic achievement. The child may remain on the school roll and attend eventually, as and when sufficient strength returns, if desired.

    * The recognition that there is widespread misinterpretation of the child's illness and disability leading to a repeating pattern of false allegations of child abuse and neglect against parents. Guidance to help avoid this. Note In addition to these points, we have observed recently a renewed attempt to push for another new name - Myalgic Encephalopathy. Tymes Trust does not consider that ForwardME would be wise to adopt this stance for the following reasons: 1. At a time when we are attempting to separate CFS from true ME it would complicate matters even more to include a third potential name. 2. The World Health Organization does not recognise this term. This would severely weaken, not strengthen, the status of ME as a discrete disease, which it undoubtedly is. 3. It has been tried before and it failed. It did not achieve the stated aim of "rehabilitating" the term ME with the medical establishment. To attempt the same thing all over again flies in the face of reality and experience. Therefore it is the Trust's view that any groups who do wish to pursue this course should do so separately from Forward ME.
     
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  3. jesse's mom

    jesse's mom Senior Member

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    amen haleluya!
     
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