Pro tips: 1. Never get the surgery. 2. Doctor-prescribed therapy helps. 3. Improved ergonomics help. 4. Rest works best (and is essential), and it takes a long time b/c this is a nerve issue not a muscular issue. I was diagnosed and had it for years and now am completely cured.

The link to join: www.hilton.com/en/hilton-ho...

You don't have to reply. My views are based on lived experience and multiple successful campaigns on a number of topics. If we ever cross paths again, we can chat :)

Anyway, back to knitting my balaclava :)

In AIDS, because it was often a quick, young death, patients were eager to get the show on the road and unable to wait for generational change (that's why, for instance, there were few patient lawsuits, which might otherwise been a useful strategem--people didn't have years to wait).

For instance, my friend John launched AIDS Treatment News, a landmark, fairly technical treatment publication--*before* there was any effective AIDS treatment. What would research into AIDS need to be? What existing drugs might treat it? How to test them? The publication helped frame the research.

Yet activists can, and have, driven paradigm shifts in medical research and medical care much more quickly, notably in women's healthcare in the 1970s and in AIDS in the 1980s to present.