• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

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

  • never

    Votes: 8 38.1%

  • a little

    Votes: 10 47.6%

  • a lot

    Votes: 2 9.5%

  • some of them do more reasearch than myself

    Votes: 0 0.0%

  • they consider my will to be informed about ME/CFS a manifestation of mental disease

    Votes: 3 14.3%
  • Total voters
    21
lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
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!
 
lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
AndyPR said:
There are lots of introductions to ME out there, how about this one to start with http://www.openmedicinefoundation.org/what-is-mecfs/
Click to expand...
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?
 
You must log in or register to reply here.