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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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who is speaking now? (Lady with long curly hair).
I think that's Eileen Holderman
Thanks - she said some really good stuff (got my internet back!).
Yes, She did. I liked what she says about the pictures on the CDC website showing people wearing suits and fit. she said they should show people with varied severity of the illness; like in bed, to the couch to the car..etc
Who is that very good guy with the longish grey hair pushing the primer? I like his persistence!
Krafchick
This is what I am hearing: If we recommend it, they will accept it - NOT!
Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
Not actually sure what I'm hearing. Did Nancy Lee say that the Sec of Health had actually responded to the prior recommendations and that those responses were now on the CFSAC website? Couldn't really believe my ears - sure I must have got that wrong.
Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
http://www.hhs.gov/advcomcfs/recommendations/index.html
Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
http://www.hhs.gov/advcomcfs/recommendations/index.html
Yes, and I thought the rationale for having such pix - the intention to be upbeat - was interesting. They obviously hadn't thought through that if you have a disease that's dismissed as trivial, the last thing you want to communicate about it is a more upbeat message than is justified.