Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”
The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.… Read More
Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community …
The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community.
Questions were submitted on the Phoenix Rising forum and they can all be viewed here.
Questions have been arranged roughly by topic and will be published in two parts.
This part, the first, covers questions on the committee and IOM process, and the IOM’s diagnostic definition.… Read More
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
“The failure to agree on firm diagnostic criteria has distorted the data base for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis.” Dr. Melvin Ramsay
“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.… Read More