by BeeNumber12 » Sat Sep 07, 2013 8:35 pm
Although the meeting was officially about ME / CFS patients, we know that many PAS members have received that very diagnosis. I have to admit, Andrea, that the following behaviors were surprising to me. On the other hand, I know we are often being manipulated, somehow.
"Some patient-created posts were edited to remove content, and others were deleted outright. " and
"Furthermore, questions and rebuttals containing any research were moved to a locked research & funding section, expressly reserved for inappropriate questions and complaints regarding research, funding, or the NHS itself. ...the research & funding section, by then known as the place where difficult questions and evidence go to die." and
"Shortly before noon on Sunday, August 18th, (2013) the entire clinic was locked down,..."
"Accordingly, a list of the 10 most erroneous, harmful, and shocking myths propagated by a minority of the clinic experts are discussed below, as well as the evidence which calls those myths into question." So, I would urge those wondering about ME/CFS to have a read of the MYTHS:
http://phoenixrising.me/archives/18487
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.