Posted by Cort Johnson The statistics the Campaign to End Chronic Pain in Women cites are startling…$50 million women in the US suffer from six chronic pain conditions (ME/CFS, FM, Interstitial Cystitus, TMD, Endometriosus, Vulvodynia), one of which is ME/CFS, which cost the US economy 80 billion dollars a year…..yet the NIH devotes only $1.36 per woman a year to
ContinuePosted by Cort Johnson NIH neglect is on the verge of producing a downturn in ME/CFS research that may take years to recover from. Some background information is necessary. The Effective Grant Program (and the Ineffective One) The NIH produces two types of grants; Program Announcements (PA’s) and Requests for Applications (RFAs). Program Announcements ‘announce’ what kind of research the
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Posted by Cort Johnson The funder of big, complex and expensive studies whose costs often run into the millions of dollars, the National Institutes of Health (NIH) presents a resource like no other. It’s never been easy to secure an NIH grant; for one thing, substantial data backing up one’s hypothesis is needed – which means researchers need to access
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Posted by Cort Johnson The NIH on ME/CFS Part I We just did an overview of what a governmental British medical agency is funding on ME/CFS. Now we turn to the biggest medical research funder in the world – the NIH. While NIH’s contribution to CFS research is paltry ($6 million/year) given their resources ($30 billion plus/yearly), their penchant for funding
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Posted by Cort Johnson The Medical Research Council is a government agency responsible for coordinating and funding medical research in the UK. No slouch in the medical world, MRC funded research has lead to numerous breakthroughs including, way back in 1918, the discovery that influenza is caused by a virus, the discovery of the structure of DNA in the 1953
ContinuePosted by Cort Johnson Our apologies for hitting you with two Support Phoenix Rising letters in one day but we discovered that a crucial link -the one time donation link – in the first letter did not work. This time it does. Thanks for your patience and understanding. Please invest in Phoenix Rising’s commitment to rigorous reporting and innovative web solutions
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Posted by Cort Johnson ME/CFS can be isolating but people with ME/CFS do not have to be isolated and Phoenix Rising is a big reason why. If John in Los Angeles wants to get the latest info on GcMAf; if Pat in Miami needs to get the latest research news, if Mary in the UK just wants to chat –
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Posted by Cort Johnson Dr. Judy Mikovits has had a difficult couple of months. First the BWG study indicated the tests she developed for XMRV were not valid, then evidence of contamination resulted in a partial retraction of the original Science paper, then she was accused of doctoring a photo at a conference and in the original Science paper prompting
ContinuePosted by Cort Johnson Phoenix Rising is committed to being a leader not only within the ME/CFS field but in how web technologies can be innovatively used to support people with health problems (in our case ME/CFS). We see many ways health support sites could be improved and we plan to make a Phoenix Rising a model of how people
ContinuePosted by Cort Johnson The Forums are a major part of Phoenix Rising. In recognition of this we have allotted a permanent space on the Phoenix Rising Board of Directors to be filled by a Forum member. Depending on how many nominations come in we will hold a vote; and the top three nominees will go to the Board and
ContinuePosted 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
ContinuePosted 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
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