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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Severely affected being ignored

Discussion in 'General ME/CFS Discussion' started by Min, Feb 12, 2013.

  1. Min

    Min Senior Member

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    UK
    The severely affected in the UK, and estimated quarter of all 400,000 sufferers, receive no specialist treatment at all.

    They are ignored by what passes for 'research' in this country (they played no part in the £5 million PACE trial).

    Why ?

    How is this right?

    Is there any other physical illness this is true of?
     
  2. Seewell

    Seewell Senior Member

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    The name "chronic fatigue syndrome" dosnt help.Its such a cruel name.:(
     
    Min likes this.
  3. peggy-sue

    peggy-sue

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    I do not believe this stands for any other illness, Min.
    I don't ignore it, not that that helps you much.:hug:
     
    Min likes this.
  4. taniaaust1

    taniaaust1

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    Sth Australia
    Agreed. I do think we are the only patient group in which the sickest are ignored. This makes very little sense.

    I wish the media would realise this instead of having only focus on CFS patients who can "try" GET and CBT. This ignoral of the sickest or most disabled goes far beyond just lack of medical treatments... it covers things like lack of home support and many other things too.

    Its a worldwide issue thou with this group being ignored and not just UK issue..
     
    redrachel76 and Valentijn like this.

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