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

[lauluce]

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!

 

[AndyPR]

There are lots of introductions to ME out there, how about this one to start with http://www.openmedicinefoundation.org/what-is-mecfs/

 

[lauluce]

There are lots of introductions to ME out there, how about this one to start with http://www.openmedicinefoundation.org/what-is-mecfs/

thanks! now i just have to translate it to spanish and make it shorter... but its easier than do it from scratch!

 

[lauluce]

There are lots of introductions to ME out there, how about this one to start with http://www.openmedicinefoundation.org/what-is-mecfs/

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?

 

[AndyPR]

Just spotted that on that page it links to this 'key facts' document http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf could be worth focussing on translating this?

And yes, a lot of our experiences are hard for healthy people to understand.

 

[lauluce]

Just spotted that on that page it links to this 'key facts' document http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf could be worth focussing on translating this?

And yes, a lot of our experiences are hard for healthy people to understand.

I'll try, once its done I'll post it here