The NIH and ME/CFS (Chronic fatigue syndrome) – research funding
Mark Berry reports on Dr. Gibson’s introduction and Dr. Whittemore’s keynote speech, at the 11th Invest in ME International ME Conference in London. The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016. You can view the full conference programme (with photos
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Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS … Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days. The editorial highlights
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In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes of the P2P and IOM. In yesterday’s piece, Clark Ellis critiqued and praised elements in
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Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients … Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients
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 (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)
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