The 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
ContinueMonth: December 2012
Facing Christmas With the ME/CFS Community at Phoenix Rising
by Jody Smith Christmas can prompt intense mixed feelings for those of us with ME/CFS. Those of us who were not stricken in our youth may have some wonderful memories of the holiday season. This can prompt anticipation and longing, accompanied by dread. Anticipation may be triggered as an automatic desire for a repeat performance of those early experiences. Longing
ContinueMake Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing
Try 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
ContinueBenzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results
by Cort Johnson The benzodiazepines may be the most commonly used class of drugs in chronic fatigue syndrome and it’s easy to see why. Their ability to enhance the effects of the ‘feel good’ neurotransmitter, GABA, makes them a nice foil for study findings indicating that the fight or flight response is turned on in ME/CFS. Look down the list
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Stigma of Sloth: The Elephant in Our Room
by Jody Smith We’ve all known people we’d prefer to avoid. People who make us want to run the other way when we see them coming, because they do nothing but complain. It galls me no end that there are people who react this way to me if I talk about what life with ME/CFS has done to me. Llewellyn
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$150,000 research money within our reach in the Aviva online voting contest!
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
ContinueURGENT: Dec 6 Deadline to email the FDA’s Ampligen Advisory Committee
by 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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Power to the patients! Vote Dec 3-12 for a new Biobank for the Vancouver Clinic
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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