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Phoenix Rising supports the Millions Missing global day of protest

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

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The Real ME: A Stock Photography Resource for the Media

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. But do pictures that illustrate

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James Coyne “lays waste” to PACE trial in Edinburgh

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

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Dr. Bateman answers IOM questions from the community: Part 1

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

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The Call for Opposition: Challenging the P2P and IOM Processes

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

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A disease with two faces? Re-naming ME/CFS

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

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Phoenix Rising and Me

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

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Dr. Reeves at the CFSAC: Too Little Too Late?

Posted by Cort Johnson 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

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