Posted by Cort Johnson Medical research is an extremely expensive pursuit – seemingly too expensive for a not very wealthy patient community to make a difference in…..or is it? We actually have abundant evidence that even small amounts of money, put into the right hands, can reap major dividends. Working out of rented quarters, the WPI was able, working on
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Advocacy issues in chronic fatigue syndrome (ME/CFS)
M.A.D. in May: the May ME/CFS Advocacy Project #4: Lobby Day
Posted by Cort Johnson For years the CFIDS Association of America had annual Lobby Days where patient advocates met in DC to push for change on Capitol Hill. Citing costs they discontinued them a few years ago. Now PANDORA has picked up the mantle. As I fumbled my way to our meeting point at the Capitol a couple of
ContinueM.A.D in May: the Twelve Days Campaign III: the May Awareness Campaigns Day
Posted by Cort Johnson Phoenix Rising, of course, is not the only group proposing special May Advocacy actions. Both the WPI (ANIDA) and RESCIND are engaging in May Actions. ANIDA – The WPI is engaged in a Month of May Awareness Campaign in it’s beautiful ANIDA website and it’s Facebook page to build a network of advocates dedicated to finding
Continue12 Days in May Advocacy Project: Day II – the Children
Posted by Cort Johnson Children are the most unfortunate recipients of ME/CFS. For many years they were largely ignored subset but the last couple of years have seen a small spurt in studies exploring the costs and course of the illness in adolescents and children with CFS. While prevalence rates are still extremely sketchy a picture of the illness is
ContinueM.A.D in May: the 12 Days of May ME/CFS Advocacy Project: Day #1 – FACEBOOK DAY!
Posted by Cort Johnson Background – The month of May is and has been Making a Difference (M.A.D) month ever since RESCIND leader Tom Hennessey proclaimed May 12th (Florence Nightingales birthday) International CFS Day over 20 years ago. The 12 Days of May Phoenix Rising project honors Tom’s vision of a community working together to produce change by providing opportunities
ContinueThe Phoenix Rising Board Letter to CDC CFS Research Chief Dr. Unger
Posted by Cort Johnson As the Pandora/Dr. Unger meeting, which was prompted by a Pandora letter signed by several US organizations, is about to occur and as we move into our big advocacy month the Phoenix Rising Board is releasing its own letter to Dr. Unger (and is explaining why it did not participate in the first letter.) ——————————————————————- The Phoenix
ContinueWho is CDC CFS Research Chief Dr. Elizabeth Unger?
Posted by Cort Johnson Dr. Elizabeth Unger, the first new CDC CFS Research Chief in over ten years, has replaced Dr. William Reeves – a forceful and controversial figure who put his own initimable stamp on the CFS research program. The ME/CFS community certainly didn’t want someone from within the CDC to emerge as the research head but now that
ContinueThe Obama Promise on Chronic Fatigue Syndrome
Posted by Cort Johnson President Obama on CFS in Reno Robert Miller has been uncanny in his ability to get near prominent public figures and push them for more support with ME/CFS. Despite having a severe case of chronic fatigue syndrome that keeps him from being able to work and participate in many activities, Bob finds a way. Bob has
ContinuePhoenix Rising Joins Coalition of Non-profit ME/CFS Organizations to Produce Change
Posted by Cort Johnson Phoenix Rising is proud to join the Coalition 4 ME/CFS. Every member of the Phoenix Rising Board of Directors has had ME/CFS for over ten years and we are all personally aware of its costs. A recent letter one of our Board Members, Pat Sonnett, wrote to Amy Dockser Marcus of the Wall Street Journal, summed
Continue[Phoenix Rising Newsletter] Comedown for XMRV at CROI/Hope for Ampligen/CFS Hits the Big Time…
Posted by Cort Johnson Welcome to the first Phoenix Rising newsletter with our new newsletter using the new Amazon ‘Simple’ Mail Service! CROI! — XMRV showed up in spades in the first major Retrovirology conference of the year, CROI (Conference on Retroviruses and Opportunistic Infections), occurring in Boston. The big news came from a study which suggested XMRV may have
ContinueReport – CFS Will Be on CBS National News Jan 23rd with Katie Couric and Nancy Klimas
Posted by Cort Johnson CBS News was in Miami yesterday filming the Miami Coral Gables CFIDS Group meeting with Dr. Klimas. According to reports Dr. Klimas met with them after the meeting to do an interview about the PACE trial and Dr. Natelson’s new study validating a previous study finding abnormal proteins in the spinal fluid of ME/CFS patients indicating
ContinueChronic Fatigue Syndrome ME/CFS News From Phoenix Rising – Show em your mad, Fax the ad!
Posted by Cort Johnson The MWPCA’s Next Action! Check out this innovative and easy way to wake up the next flock of new congressman to the realities of the biggest and least recognized health threat in America – CFS! Show ’em you’re mad, Fax the ad! Let’s get them started right. (Never fear, it’s an easy online Fax) via Chronic
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