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
Sasha announces a new resource of appropriate photos for ME/CFS media stories …
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
No! Not this beautifully groomed woman with a mildly troublesome sore throat!
But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?
For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.… Read More
- Professor James Coyne
Sasha summarises Professor James Coyne’s recent no-holds-barred talk on the PACE trial and points you to the slides, video, audio and transcript.
Outspoken psychologist and professor of psychology James Coyne of the University of Pennsylvania blasted the PACE trial in a public talk in Edinburgh, Scotland, on 16 November, 2015.
The PACE trial was a £5 million UK trial of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for patients with chronic fatigue syndrome (CFS). Its authors claimed that the therapies were beneficial to patients, but its methods have been heavily criticised.
The slides from Professor Coyne’s talk have been viewed online over 8,000 times.… 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
Jody Smith remembers the early days of the Phoenix Rising forums – and explains why she’s glad to be back…
I don’t know exactly when I stumbled upon Phoenix Rising. It was during a period of years now shrouded in a CFS fog, when I was mostly awake in the middle of the night, sleeping through much of the day.
I spent time on the computer as my body and brain allowed, searching for any information that might help me find out what was so desperately wrong with me.
Many sites taunted me by being too difficult for my crippled brain to comprehend.
… Read More
Dr. Reeves produced the five year plan for the CDC’s CFS research team. He was in his element. He seemed sincere and open; patients think of him as something of an ogre but you’d never get sight of that in his presentations. Kim McCleary later noted that he’s a master at the art of presentation. But one suspects that he’s masterful in the way that many government officials are. They’re always very nice but it’s often difficult to get a straight answer to a question.
The standard MO for dealing with an issue seems to be to give a history lesson.… Read More