1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

'ME has turned my life upside down'

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

  1. Min

    Min Senior Member

    Messages:
    1,040
    Likes:
    739
    UK
  2. maryb

    maryb iherb code TAK122

    Messages:
    2,699
    Likes:
    1,673
    UK
    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

    Messages:
    175
    Likes:
    216
    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 Senior Member

    Messages:
    2,017
    Likes:
    1,265
    Left Coast
    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 Moderator and Senior Member

    Messages:
    4,991
    Likes:
    5,535
    USA
    Threads merged.
  6. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,203
    Likes:
    1,536
    Australia
    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

    Messages:
    7,451
    Likes:
    8,614
    England, UK
    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 Senior Member

    Messages:
    5,785
    Likes:
    5,869
    Cornwall England
    Stay tuned for this Saturday's Telegraph Supplement. Likely to be a follow-up of some kind.
    Snow Leopard likes this.

See more popular forum discussions.

Share This Page