"Writing is perhaps the greatest of human inventions, binding together people, citizens of distant epochs, who never knew one another. Books break the shackles of time–proof that humans can work magic.”
Carl Sagan
This seems to be a good summary of ME/CFS. It might be a good source for those with friends or family who don't understand the condition. It even discusses the PACE trial, which introduced so much misinformation that still hurts patients to this day. www.youtube.com/watch?v=wxSw...
There are quite a few. I’m still new here, so I’m not sure how to give you the links, but if you search Me/cfs or variants of that, I think you’ll find them. Most of the people I’m following came from those starter packs. 😊
We don't have healthy members of our community to advocate for us like those with HIV did. The way into our community is to get MECFS.And, our friends and loved ones either don't believe us (based on what doctors say) or don't understand our illness and therefore don't know how to advocate for us.
Oh, yes, I saw the blow up on the other site. That doctor's behavior and treatment of people with #MECFS was awful. So condescending and un willing to listen to suffering patients. I'm sorry she wouldn't listen to you, which is really such a low bar.
Sad and true.
Great idea! Thank you!
It does seem to be one loss after another. And the grief is ongoing. Sending love out as well.
😆
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