- Messages
- 11
Hello Esther12 - I finally get approved on here (!) - thanks; & yes, my talk wasn't perfect at all; but never mind (I *Was* very nervous). I was representing a patient advisory group primarily - though obviously some points (the quips) were my ideas.He's sharing some okay stuff too. I didn't think his talk at the CMRC was great, but it's worth being cautious [edit] in criticism of those who may not have had time to look into all the details (at least when they're not getting paid for claiming 'expertise').
Am absolutely not in the business of getting into slagging matches, but (dear Yogi) I refute absolutely that I am any sort of "AfME stooge" ; I am a volunteer, and therefore, impartial, and 100% make my own mind up about things. Additionally, I do know a hell of a lot about the controversy surrounding the illness (I myself was ill 1997 - 2007) , and follow very closely recent developments & research "findings" (including ones that disappoint me massively - ie. SMILE - one of my PWME friends died in 2014 after trying the LP as a last resort. She'd been severe for 20 years. One of the reasons i am back in the ME/CFS world is as a tribute and memory to her short life).
I'm here to do the right thing, and FWIW I have no support for the BPS model of the illness, or any further behavioral trials. I was hoping they'd died down by now (eg. PACE ended in 2011; SMILE was started in 2011... a while ago), but sadly one or two remain. Here's hoping more great biomedical findings can come out of research - it was a privilege to witness some inspiring talks at the CMRC conference last week.