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New ME / CFS clinic proposal for Ireland. A model which can be applied in other countries.

Discussion in 'Other Health News and Research' started by David Egan, Nov 26, 2012.

  1. David Egan

    David Egan Hermes33

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    Dear ME / CFS patient / carer,
    The problem of a lack of ME / CFS diagnosis and treatments based on biomedical and biological evidence continues to undermine ME / CFS patients in Ireland, Britain and other EU countries. The abscence of ME / CFS clinics which can do this has further adverse effects on patients.

    To address the concerns of ME / CFS patients about the lack of effective diagnostic methodologies and treatments, a grouping of ME / CFS patients has joined together to lobby the Irish government for a new ME / CFS clinic which will use biomedical and biological evidence and best international practises to diagnose and treat ME / CFS. The grouping has meticulously researched the best ME / CFS clinics in the world and identified 20 which have brought about thousands of recoveries from ME / CFS using advanced medical techniques. They are very different to the NICE clinics (in Britain) which have been useless and relied on ineffective psychiatric treatments. Also scientific and clinical research findings form around the world have been carefully categorised to provide overwhelming evidence of biomedical and biological dysfunctions and abnormalities in ME / CFS. Also a listing of leading edge medical drugs and the scientific and clinical reasons for legalising them and designating them for ME / CFS treatment are included on the web site.
    The web site is at http://www.cfs-ireland.com

    We invite patients and carers in Britain and other EU countries and the USA to use our web site to lobby for and push for a similar ME / CFS clinic in their own countries. And use the listing of the top 20 ME / CFS clinics in the world that we have on our web site. You are free to contact your politicians and civil servants and health authorities and push for this type of clinic which will properly diagnose and treat ME / CFS patients, bring about recoveries, and bring hope and relief to many in your respective countries.
    Best Regards,
    David Egan.
    Campaign for a National ME / CFS Clinic
     
  2. GracieJ

    GracieJ Senior Member

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    Utah
    Love the web site! Very comprehensive and informative, will be posting that link to people for a long time to come. Thanks for all the hard work from anybody involved. Impressive.

    I'm thinking our new ME/CFS name needs to be simple and not confusing. Promoting the use of ME is in our best interest overall, imo. Nobody outside of the doctor/patient needs to say it or spell it, just recognize it and use it. I meet people all the time who cannot say what AIDS stands for, but know exactly what it is.

    Part of this may be mental laziness for some... is it an American malady only to want things in sound bites for simplicity and rapid communicating?
     
  3. Firestormm

    Firestormm

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    Cornwall England

    I wish you all the very best David. Something needs to be done over there :)

    I agree Gracie. I use 'ME' rather than ME/CFS. If only because I think ME is more recognised. I try to help our local support group (soon to be charity hopefully), and designing our new web site, I had this similar conundrum to entertain.

    With an appropriate explanation of the different labels that can apply, I think 'ME' is the one to go for. Maybe this will change one day - but it hasn't yet and encephalopathy is as good a compromise pending anything definitive.

    The abridged label is not something that exactly slips of the tongue is it? And I think - from what our members say (some 200) 'ME' is the preferred identifier. It makes it so much easy when writing text too! :)
     
  4. GracieJ

    GracieJ Senior Member

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    This site is suggesting it be called "Chronic Endocrine, Neurological and Immune Dysfunction Syndrome" (CENIDS).
     

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