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
ContinuePosted by Cort Johnson After looking at private/non-profit research efforts in 2012 we turn to what the Feds (CDC, NIH, DOD) will be doing…. Centers for Disease Control The CDC approach to ME/CFS under Dr. Unger is changing and for the better. Increased outreach and collaboration have become hallmarks of Dr. Unger’s CFS CDC program. Physician Education Three Continuing Medical
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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
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
ContinuePosted by Cort Johnson (There were some formatting and grammatical errors in the first post; this is a revised submission – my apologies) It wasn’t surprising at all to see things get heated with Dr. Coffin and Dr. Mikovits both up at bat at the State of Knowledge Workshop. The moderator, Dr. Alter, handled his job with humor and flair.
ContinuePosted by Cort Johnson We’re going to try something new, live coverage of the workshop. Since this is last minute, we need volunteers to help cover the event. Let us know if you’d like to help with a comment here or via reply in the forum article that I’m posting. You can watch the event here or in the forums.
ContinuePosted by Cort Johnson Here’s a slightly ‘kludged’ transcript of Day one of the NIH ME/CFS State of Knowledge Workshop. Some off-topic chat posts have been removed for clarity, but no remaining lines of the transcript have been altered. NIH SoK Workshop Coverage (Day 1, 7 Apr 2011)
ContinuePosted by Cort Johnson The State of the Knowledge Workshop is here and it’s a good one. A hearty congratulations to Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas, Dr. Vernon and Dennis Mangan for what they’ve produced. The last NIH Workshop/Conference of this sort was the Neuroimmune Conference of eight years ago and was filled with NIH
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