M Paine
Senior Member
- Messages
- 341
- Location
- Auckland, New Zealand
I wish I had one ounce of her ability to articulate. Bravo. Very moving, and inspiring.
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.
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Links to presentations like this (there are quite a few I believe) should all be collated into a single web page; somewhere that the wider public and medical community would be inclined and motivated to visit. Powerful real human stories like this, that people can identify with. The more technical material would belong somewhere else - it is hearts and minds that need to be won.
Doesn't one of the other (not #MEAction) advocacy orgs have a Humans With ME thing going on? That would seem to be the logical place for such stories. Is that Solve?
How do you do that?
Reply with knowledge I guess. Dunno if trolls are really sensitive to that though.
depends on the one in question, have to try to ascertain their state of mind, personality etcHow do you do that?
I fear my Facebook friends do not want to engage with the ME posts because they do not believe it is a real disease.
Just want to highlight how some patients (I assume, they could be healthy allies of ours) dealt superbly with an ME-denying troll on Reddit. I think some of you might be here, just wanted to say great job.
All can be seen here https://www.reddit.com/r/videos/comments/5okuiz/what_happens_when_you_have_a_disease_doctors_cant/
The views on the TED site are up to 143,148! How could anyone not cry when watching Jen and the crowd silently applauding her.
Just want to highlight how some patients (I assume, they could be healthy allies of ours) dealt superbly with an ME-denying troll on Reddit. I think some of you might be here, just wanted to say great job.
All can be seen here https://www.reddit.com/r/videos/comments/5okuiz/what_happens_when_you_have_a_disease_doctors_cant/
Just want to highlight how some patients . . . dealt superbly with an ME-denying troll on Reddit.