Advocacy issues in chronic fatigue syndrome (ME/CFS)
by Sasha Late on Friday, 8 February, Bob Miller announced the end of his hunger strike to get Ampligen approved for people with ME/CFS. Our community had never seen anything like this and I hope we never have to again. It hasn’t been easy watching Bob get weaker and weaker on his video diary and I’m sure there’s a collective
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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 Bob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same. Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to
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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
ContinueTry to leave your calendar open from 8am-5pm EST on the 20th for the FDA’s hearing in Ampligen! Information about the meeting is available at December 20, 2012 Meeting of the Arthritis Drugs Advisory Committee (not mistitled!). The webcast will take place at https://collaboration.fda.gov/aac122012/ and Phoenix Rising will attempt to embed the video locally to make it easier to simultaneously
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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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by Kati and the Phoenix Rising Team The Vancouver Chronic Diseases Clinic is set to open within the next few months. What better way to support this worthwhile project than to help it win some serious money from a charitable voting contest? With your help and support, we’re getting organized to do just that! Although the Aviva Community Fund is
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by Sasha I saw 10 pence on the pavement yesterday. It was lying in some mud so I didn’t pick it up. I wish I had now: I’d forgotten it was really worth four quid. How come? Because if the Simmaron Research Foundation can get $225,000 for a pilot study, it will bag them a guaranteed $800,000 from an Australian
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by Jody Smith The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending. There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about
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by Jody Smith The Food and Drug Administration has deemed ME/CFS to be one of 39 conditions that may receive their special consideration. But of these 39, only 20 conditions will be picked. If ME/CFS is one of those 20, patients’ comments will be heard through public meetings and through mailed and emailed messages. The FDA evaluates and approves drugs
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