Jennie Spotila looks forward to the next meeting of the CFS Advisory Committee – and explains how you can participate. The spring meeting of the CFS Advisory Committee is May 22-23, and we only have a few weeks to prepare. The agenda is not available yet, but we do know about a few new things happening at the meeting. New
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As the FDA Stakeholder Meeting approaches, we explore the various ways that patients can get involved – and offer some suggestions on how to make the most of this unprecedented opportunity. On April 25-26, 2013, the United States Food and Drug Administration (FDA) is holding a workshop in Bethesda, MD to discuss how best to facilitate and expedite the development
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Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate skepticism. Despite ME/CFS being an illness so severe that it has been found to cause a poorer quality of life than any major illness including cancer [1], its sufferers continue to be disbelieved, shamed and abandoned by doctors, friends and family. It is
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In the first of a series of articles by Phoenix Rising writers on the Institute for Neuro Immune Medicine’s Patient Conference at Nova Southeastern University, Vonnie Kennedy gives an overview of the morning session. I was lucky enough to attend the morning session of the 2013 Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Gulf War Illness (ME/CFS and GWI) Patient Conference at NSU
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by Sasha The FDA may have disapproved Ampligen but Bob Miller isn’t giving up his hunger strike. Visibly weaker in a video clip on his Facebook page, on Day 9 of his hunger strike, Bob moved on to the next, logical target: he wants Secretary of Health Kathleen Sebelius to have the National Institutes of Health conduct a clinical trial
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Phoenix Rising has the chance to apply for one of 3 non-voting liaison representative positions for ME/CFS organizations on the CFSAC committee – but we only have until Feb 22 to choose our representative and submit our application, so it’s all hands to the pump! The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of
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by Sasha If any of us was Bill Gates, we wouldn’t ask ourselves whether we should donate money to ME charities. We’d just do it. We’d reach into our gigantic bank account and drop our billions on the problem, secure in the knowledge that we were pouring such shedloads – no, planetloads – of cash onto it that the problem
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by Sasha “There comes a point in human suffering when acceptable risk is most appropriately determined for oneself, not by government.” So said Suzy, in an online comment about the failure of the FDA Advisory Committee on Ampligen to vote in a manner that would have got approval for the drug’s use for patients with ME/CFS. But it’s not too
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by Elaine Stammers As a new year begins, I sit in my house looking out at the falling rain and think about Gillian McCarthy sitting in her unheated and leaking hut, many miles away from me in Somerset, UK. She awaits the return of the group of people who, by starting to build her a warm shelter for winter, have
ContinueThe Phoenix Rising board members are all extremely sad to learn of Cort Johnson’s decision to leave Phoenix Rising. Cort’s writing, and his vision of a rich and reliable website as a resource for ME/CFS patients, are what attracted all of us to volunteer for Phoenix Rising, and the board is determined to maintain the aims and principles of the
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Sasha asks you (and your friends and family) to VOTE EVERY DAY until Wednesday – this could prove to be a crucial weekend in the Aviva voting contest… Imagine how long you’d have to stand out on a winter street, rattling a bucket at strangers, until you raised $150,000 for ME, Fibromyalgia and Lyme research. At a generous $50 a
Continueby Cort Johnson Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing URGENT: ME/CFS Patient “A C T I O N” A Call To Impact Our (me/cfs) Nation For All ME/CFS Patients, Families and Friends (U.S. & Non U.S.) Organizer: Robert Miller, Cort Johnson and TEAM Contact: 511bobmiller42@gmail.com For the first time, people with chronic fatigue
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