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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EXPLAINING ME/CFS BY A TEXT WITH KEY POINTS ABOUT THE DISEASE

Discussion in 'Lifestyle Management' started by lauluce, Nov 4, 2016.

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have any of your relatives ever agreed to read anything about ME/CFS?

  1. never

    8 vote(s)
    38.1%
  2. a little

    10 vote(s)
    47.6%
  3. a lot

    2 vote(s)
    9.5%
  4. some of them do more reasearch than myself

    0 vote(s)
    0.0%
  5. they consider my will to be informed about ME/CFS a manifestation of mental disease

    3 vote(s)
    14.3%
Multiple votes are allowed.
  1. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    Hi, like many of you, I'm having severy trouble making my family members understand what ME/CFS is, but recently I published some abridged description of Lyme disease including symptoms, the way its adquired, etc and I found my mother calling me worried on the phone asking me to protect my child from ticks, based on what she learned of that facebook post. First time I got a member of my fimily interested in learning ANYTHING about a disease that is at least in many ways similar to ME/CFS, including the lack of support by relatives, an the "is all in your head" stigma. In wondered if somebody could lead me to some introductory short text to ME/CFS to publish in my facebook as I did with the lyme disease one. I would create one myself, but I just don't have the energy and the cognitive power to do it right now :(. Thank you in advance!
     
    -Jessie-, erin, Comet and 2 others like this.
  2. AndyPR

    AndyPR Senior Member

    -Jessie-, erin, Comet and 3 others like this.
  3. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    thanks! now i just have to translate it to spanish and make it shorter... but its easier than do it from scratch!
     
    Jennifer J and AndyPR like this.
  4. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    this paragraph called my attention: "But it also has other symptoms, such as waking up feeling drained or like you have a hangover. Most of these patients take more time (up to two hours) to transition from sleeping to awake activity. " I never read that anywhere else... that's exactly what happens to me, I have to RECOVER FROM SLEEPING. It must sound crazy to a healthy person, right?
     
    purrsian, -Jessie-, Mel9 and 6 others like this.
  5. AndyPR

    AndyPR Senior Member

    Mel9, lauluce, Jennifer J and 2 others like this.
  6. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    Mel9 and AndyPR like this.

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