In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes of the P2P and IOM.
In yesterday’s piece, Clark Ellis critiqued and praised elements in the draft report. Given the controversial nature of the report, Phoenix Rising is presenting both views in the interests of balance and representing the whole community…
“We are not crumbs! We must not accept crumbs!” – Larry Kramer
When I first read the draft report created by the panel for the P2P for ME/CFS, my first reaction was: They are throwing us crumbs — this is dangerous.… Read More
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we’ve all been saddled with …
If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our disease.
The very fact that two names are attached to each other, janus-like, almost as if mocking one another seems emblematic of all the controversy surrounding the illness.
If only we could just sort out the name, perhaps everything else would fall into place.
For how can anyone trust a condition with such a slippery, inconclusive title?
Dr. Derek Enlander suggested that we could re-name the illness ‘Ramsay’s disease’ in the grand tradition of calling diseases after the people who first documented them.… Read More
“The Month Of ME’ – in response to a challenge and in recognition of the important role the term myalgic encephalomyelitis (ME) has played and continues to play in this disorder, August, 2011 will be the ‘Month of ME’ on Phoenix Rising. We examine ME’s role in this disorder throughout the month. All articles, blogs and posts produced by Phoenix Rising only used the term myalgic encephalomyelitis or ‘ME’ unless ME/CFS or CFS was absolutely required..
In reward for doing so, GregF, a Forum member, contributed $1,000 to the Whittemore Peterson Institute. Although it was not in the bargain he also generously contributed $320 to Phoenix Rising.… Read More