Posted by Cort Johnson Discuss this article on the forums The regular season is over – it’s playoff time for the Chase Community Giving Contest for large non-profits…..time to win some BIG MONEY for CFS research. This is a unique opportunity. Increasing govt funding for ME/CFS has been agonizingly difficult given the negative attitudes towards ME/CFS and it’s pretty darn
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XMRV Buzz: WPI Responds and Dr. Singh Talks (May 16th)
Posted by Cort Johnson WPI Response to the Singh Study The WPI’s first response to the negative XMRV CFS Singh paper didn’t take long to come out. (Apparently a longer response will appear in the Journal of Retrovirology). Hiding in Plain Sight? WPI Refutes Contamination Theory – Claims Distinct XMRV is Present – For over a year the WPI has
ContinuePeople With ME/CFS Protest in Front of Department of Health and Human Services Building
Posted by Cort Johnson Discuss this article on the forums ME/CFS Demo May 10, 2011 — Dept of Health and Human Services, Washington DC Contact: Rivka (at) ThatTakesOvaries (dot) org On May 10, 2011, 6 individuals with ME/CFS, each sick and disabled from 9 to 21 years, demonstrated in front of the U.S. Department of Health and Human Services (HHS),
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XMRV Buzz: Dr. Mikovits/Singh/Lipkin and Deckoff-Jones (!) on the Singh Study (Apr 9th)
Posted by Cort Johnson The Singh Study was a big and important and its not surprising that, even prior to the WPI’s official response – everyone on both sides of the aisle is talking about it. Dr. Mikovits on the Singh Study – Science Mag reported that Dr. Mikovits was astounded that Dr. Singh was unable to find XMRV. Calling
ContinueM.A.D in May #5: The ‘Support ME/CFS Research’ Day
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
ContinueM.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
ContinueThe Singh XMRV Study Strikes Out
Posted by Cort Johnson Dr. Singh’s study was one of the ‘biggies’ left. A murine retrovirologist at the University of Utah and the ARUP labs who had been studying (and finding) XMRV in prostate tissues, Dr. Singh started her CFS study about a year ago. Not only did it involve an expert in the field but Dr. Singh was working
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
ContinueM.A.D in May: the Twelve Days Campaign III: the May Awareness Campaigns Day
Posted by Cort Johnson Discuss this article on the forums 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 its beautiful website and Facebook page to build a network of
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 II – Children’s Day
Posted by Cort Johnson Discuss this article on the forums Children are the most unfortunate recipients of ME/CFS. For many years they were largely ignored 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
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
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