Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Severely affected being ignored

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

  1. Min

    Min Guest

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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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    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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