New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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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 Tired Sam ate all the cookies!

    -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

    Messages:
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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 Tired Sam ate all the cookies!

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

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

    Messages:
    377
    Likes:
    624
    argentina
    Mel9 and AndyPR like this.

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