1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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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'ME has turned my life upside down'

Discussion in 'General ME/CFS News' started by Min, May 5, 2014.

  1. Min

    Min Senior Member

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  2. maryb

    maryb iherb code TAK122

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    My heart breaks for these young people, I had a full life, children, a great career etc. before this illness got me.

    The stupid doctors - because they couldn't diagnose fall back on, 'don't want to do it', 'are choosing not to do it' Like she didn't want to go to school, even though she loved netball and all her friends, a pony - really?? Idiots

    Why can't they be honest and admit they haven't a clue what to do?

    I really hope she gets through this - being young there is a lot of hope.

    "Now, under the care of a service for ME patients in Bath, I’m on an activity management programme to cope with you. I am studying again, at a special medical tutor school, and I can usually manage 20 minutes before a break, then another 20 minutes. Sometimes even that is too much, but I try to go along anyway just to get out of the house and have the contact with other people. Afterwards, I do activities that are classed as yellow – less strenuous than tutoring – like watching repeat television shows or listening to music"

    bless her for trying so hard, because she desperately wants to get better like we all do. If she does recover and god willing she does, the people running this programme will take the credit and yet she's the one who will have fought it and won.
     
  3. Cheesus

    Cheesus Senior Member

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    The ignorance of doctors who think they know what they're doing is such a terribly harmful thing.
     
    maryb, Bob and peggy-sue like this.
  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    What baffles me is why doctors are so close minded? For me it is the opposite of what they should be doing which is "no harm". How does it hurt them to actually look into it? This is rhetorical.
     
    Wildcat, SilverbladeTE and Min like this.
  5. SOC

    SOC Senior Member

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    Threads merged.
     
  6. Snow Leopard

    Snow Leopard Senior Member

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    This is one of the best descriptions of the experience of ME as a child that I have ever read, probably the best I have read in the "news".

    I guess we can just hope that the tide will turn eventually.
     
    Bob, WillowJ, maryb and 3 others like this.
  7. Bob

    Bob

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    I totally agree with Snow Leopard...

    I think this is possibly the best article that I've ever read in a national media outlet about ME.

    It's really worth a read...


    (The Telegraph is a one of the UK's best selling broadsheet newspapers.)

    'ME has turned my life upside down'
    It was two years before Holly Buckley’s ME was taken seriously.
    Now 16, she writes a letter to the illness that is thwarting her dreams

    By Holly Buckley

    The Telegraph (UK)
    5th May 2014

    http://www.telegraph.co.uk/health/10801148/ME-has-turned-my-life-upside-down.html

     
  8. Firestormm

    Firestormm Guest

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    Stay tuned for this Saturday's Telegraph Supplement. Likely to be a follow-up of some kind.
     
    Snow Leopard likes this.

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