I am collecting any comments I see in this thread and a few other places and will post a summary - may take me a week or so
Thank you
@medfeb for this and for all your amazing work! Where would we be without you and other advocates extraordinnaires?
I'll add another comment:
Today I was asked by a person with ME if I could help her with her disability case. She needed links to trusted sources stating that ME is a serious and, in the vast majority of cases, chronic disease. So I checked the new CDC site with this in mind and found it lacking.
The text on the initial page doesn't convey the severity or chronicity of ME.
On the page "What is ME/CFS" they say, for example: "ME/CFS can last for years and sometimes leads to serious disability." I don't find this nearly strong enough. "Can" last for years? In the vast majority of cases, it's life-long. "Sometimes" leads to serious disability? I would say: in most cases it leads to serious disability.
So, sadly, I found I couldn't recommend this person to refer the disability agency to the CDC web pages. This is - still - a big problem.
Also very sadly, even the IACFS/ME Primer isn't clear enough about how disabling ME is or how it, for a very large percentage of sufferers, is chronic.
(Tagging
@mango FYI)