I love how they, who are backed by a professional PR team, keep painting us as a highly organised activist organization. While, yes, it is true, thanks to Tom and Jen and many others, the patient community *is* becoming more active and vocal, and actually being *heard* for the first time maybe ever.
However, they are paying a team of spin doctors, while patients are exhausting themselves analysing their crap science, pointing it out, and then being described as doing harm to our own by shining a light on their shenanigans.
This is very foolish and it is becoming clearer every day who is doing the harm.
I can't imagine how it must feel to put saving face before the well-being of millions of people. I understand they feel their careers and reputations are at stake; have they thought about how all of us lost such things and more, long ago, to this illness?