Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Private Members Debate: Myalgic encephalomyelitis - Ian Swales

Discussion in 'General ME/CFS News' started by Sherby, Feb 2, 2011.

  1. Sherby

    Sherby Sherby

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  2. Esther12

    Esther12

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    Thanks for the reminder. These things are often a bit depressing. It's a complicated topic and MP's don't have time to really to understand it... but it's such an inherently political subject that to leave it to the bureaucracy is to guarantee failings.

    Committee's are our only hope... anyone know what's going on with the new one?
     
  3. Sherby

    Sherby Sherby

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    It will be interesting to see how much misinformation we will hear today.
     
  4. Esther12

    Esther12

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    Sounds like it's not due to start til 4:25... (unless I've misunderstood, and now we'll all miss the good stuff).
     
  5. Sherby

    Sherby Sherby

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    This is the first time i have tried to watch it this way, but i noticed a replay button. That might work if we miss anything, apart from that its anyone's guess. The stated run time was 4 to 4.30pm.
     
  6. Esther12

    Esther12

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    Oops... it's is on now.
     
  7. Enid

    Enid Senior Member

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    Thanks Sherby, just watched - it will take a little while to digest. As an 11 yearer I felt important points included and how far UK ME has come (though slowly). But of course more speed and more action always wanted. The less zzzzzzz of us will be able to see more.
     
  8. Esther12

    Esther12

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    It made me kind of angry... how far the claims they made about the way CFS is treated are from my own experiences.

    The minister sounded okay, but it was like he was talking about a different country.
     
  9. Enid

    Enid Senior Member

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    Yes made quite angry too. The softly softly minister speak. It b.w. is neurological and any talk of existing specialist centres is a bad joke. All psychos ! But hope springs eternal once that lot is kept out.
     
  10. Sherby

    Sherby Sherby

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    So, We are all supposed to work together. Did i hear that correctly? No solid evidence as yet about XMRV and that they are working on it. How many MPs were there. The only new item which i haven't heard about before. was the Neurological alliance and just had a quick look at one of there web sites and i could not see anything mentioned about CFS/ME. If i have miss interpreted any of the above could someone correct me please.
     
  11. cigana

    cigana Senior Member

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    Hi,

    I too looked up the Neurological Alliance afterwards - can't really see how they're going to help us. We need specialist charities involved who understand the politics of ME. I think that's the problem - the MP's are treating like any other illness, they don't understand the deep, long-standing political aspects of the problem.

    The minister even mentioned the "excellent" specialist centres. Obviously he doesn't have a clue what is going on. If he gets cancer one day, I wonder if he would consider being sent to somewhere for CBT as being "excellent" treatment? He also seemed to think the MRC were doing biomedical research. Again, if he had cancer, would he welcome money being spent on studying how that affected his sleep or would he prefer perhaps a cure?

    It's a shame Ian Swales didn't mention that the problems with ME are all political. More money to the MRC won't change a thing.

    Mark
     
  12. LaurieM

    LaurieM

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    I'm I right when I heard the Health Minister say that the WHO definition for the illness is CFS/ME - and he repeated this a couple of times. As far as I know the term CFS/ME doesn't exist in the WHO vocabulary - please correct me if I'm wrong.

    This was important as Ian Swales was trying very hard to make the point that CFS is a derogatory term that should be got rid of, and surely the Health minister should not have misled the terminology of the WHO.
     
  13. cigana

    cigana Senior Member

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    Hi Laurie,

    He definitely said that the WHO name for the illness was CFS/ME...

    Mark
     
  14. LaurieM

    LaurieM

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    Thanks Mark

    I was just about to edit my post to confirm that JT has left a comment on the MEA website confirming this misleading re-defining of the WHO's definition of the name by the Minister.

    http://www.meassociation.org.uk/?p=4209

    The MEA page also implies the video will be available to watch again when the BBC has uploaded it. If so it will be interesting to watch again as I believe the Minister made a few more fundamental mistakes in terminology.

    Am I right to assume debates in Westminster Hall are recorded in Hansard? - as the transcript should be interesting. If it is, then the Minister will be recorded as confirming the illness is totally Neurological and in no way a Mental illness.

    Laurence
     
  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Tony Britton (the ME Association's Press & Publicity man) has commented here about Paul Burstow's misinterpretation of the ME/CFS WHO categories today:

    http://www.meassociation.org.uk/?p=4174

    Perhaps the MEA will write to the minister and correct him.
     
  16. Yogi

    Yogi Senior Member

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    Haven't watched it yet as link doesn't work, but Paul Burstow should be well acquainted with the issues about ME/CFS as:

    1. http://www.suttonmesupportgroup.co.uk/clinic.asp

    Following a successful campaign which was led by Paul Burstow MP, Dr A Bansal and our Support Group we now have a specialist M.E./C.F.S. Clinic based in Sutton.

    2. http://news.bbc.co.uk/1/hi/health/341917.stm

    Liberal Democrat MP Paul Burstow attacked the benefits system's approach to the disease.

    He said sufferers were often left feeling as if they were being treated as "malingerers".

    Paul Burstow criticised an uncaring benefits system
    "We need clarity over the definition of ME .
    .. and more sympathy in the health and benefit systems," he said.
     
  17. Yogi

    Yogi Senior Member

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    The BBC article is from 1999!!
     
  18. Bob

    Bob

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  19. Bob

    Bob

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  20. sleepy237

    sleepy237 Senior Member

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    What are these "subtle differences" that separate ME from CFS? I know that some like to establish that ME is entirely different from CFS but what makes it so when they symptoms are the same syndrome found in both descriptions. This goes on to muddy waters more for the future of understanding and the treatments of all sufferers.
     

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