Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Moving a Severe ME patient

Discussion in 'General ME/CFS News' started by Ember, May 30, 2013.

  1. Ember

    Ember Senior Member

    Messages:
    2,087
    Likes:
    2,340
    By the CFS Patient Advocate
    Thursday, May 30, 2013
    More: http://cfspatientadvocate.blogspot.ca/2013/05/moving-severe-me-patient.html
     
    alex3619 likes this.
  2. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    I saw this - I'm not as ill as this but I've got serious problems if I want to travel from one town to another, which I don't attempt more than once a year.

    Chris is right that the most severely ill among us are hidden, and that that's wrong.
     
  3. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,611
    I was too ill to attend the CFSAC but, I gave my testimony over the phone. I did emphasize the severely ill.


     
    Little Bluestem and Sasha like this.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK

    I liked it that you made the point that the previous year, you couldn't go.

    Chris, in his piece, made the point that govt committees should be forced to watch 'Voices from the Shadows' at the beginning of the meeting. Good idea.
     
    merylg and *GG* like this.
  5. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,220
    Likes:
    6,661
    USA
    It's so crazy. How can anyone turn their head to this? Do they really think individuals just want to hang out in a bed like this? Even psychiatrists say that no one wants to really be sick and anxious. No one wants to be even a hypochondriac. We are not that. No one wants to not thrive.

    People don't want to hang out in their room, or house for years.

    The only word I can think of that comes to my mind for this behavior is a major curse word. It starts with an F and ends with an ed on the end of it.
     
    *GG* and Valentijn like this.
  6. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    620
    England
    My GP asked me if I was afraid to die, when I mentioned the way people die of ME. "No," I told him, "I'm certainly not afraid to die, I'd be out of it then wouldn't I? No, what scares the hell out of me, is ending up bedbound with no help or hope. THAT really does scare me as I get worse and worse with this illness."

    Even my GP, who is one of the good ones, doesn't get it really.
     
    *GG*, Little Bluestem and Valentijn like this.
  7. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,665
    Likes:
    5,479
    Even the moderately ill need more than that or we will be joining the ranks of the bedbound.
     
    The Spitfire, Sasha and Blue like this.
  8. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,220
    Likes:
    6,661
    USA
    Shell, I wonder if he doesn't get it or if he is just scared. He's watching someone unravelling and feels powerless. IT's a sad situation. My doc had CFS and gets scared when I am really sick. He becomes silent. I know it's bothering him, not just as a doctor, but it's a fear that grows deeper than that. He knows that as much as he thinks he can help me, he really can't.
     
    Shell likes this.
  9. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    EXACTLY. My biggest fear is getting completely bed-bound and 'stuck'. Spending the next 20 years as ill as I have been is not acceptible.
     
    Shell and Tally like this.

See more popular forum discussions.

Share This Page