Posted by Cort Johnson ME/CFS Buzz: News of the Week – a New Feature From Phoenix Rising (weekly short takes on ME/CFS research, treatment and news) RESEARCH Fear and Loathing….An Exercise Study Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing in chronic fatigue syndrome: an experimental study.Nijs J, Meeus M, Heins M, Knoop H, Moorkens G, Bleijenberg G. Nijs
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Posted by Cort Johnson Virtually every ME/CFS research and non-profit is in the same fix – they’re big on ideas and short on money. The CAA, of course, has the same problem… even though, arguably, the needs in ME/CFS are larger than almost any other disorder, next to the big medical non-profits like the Susan G. Komen Foundation for breast cancer,
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Posted by Cort Johnson U.S. Senate Committee on Health, Education, Labor & Pensions Full Committee Hearing on Pain in America: Exploring Challenges to Relief February 14, 2012 TESTIMONY OF JENNIFER SPOTILA This testimony is submitted on behalf of the CFIDS Association of America, in loving memory of Christy Gaffey of Williamsburg, Iowa. Christy lost her battle with chronic fatigue syndrome
ContinuePosted by Cort Johnson Spread the word! It is time to YANK (not tug) the nation’s heartstrings again. Young People with ME/CFS – JOIN US in Speak Up About ME, to be Invisible No More! Washington DC this spring (2012) How do we yank people’s heartstrings? With the participation of young people and their families at the Chronic Fatigue
ContinuePosted by Cort Johnson Discuss this article on the forums Background The theme of this year is expansion, not contraction as one might expect after the biggest finding in CFS history (XMRV) didn’t pan out. With XMRV drawing more attention than ever to this disease the ME/CFS research community emerged in better shape with more new projects and more new
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Posted by Cort Johnson Background The biggest finding in CFS history (XMRV) didn’t work out and the most revered group in CFS history, the WPI, has troubles of its own, but ME/CFS research community emerged in better shape with more new projects and more new faces than ever before. Yes, ME/CFS is still a fringe topic receiving abysmal funding from
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Posted by Cort Johnson The Best of Times/The Worst of Times – 2011 will no doubt go down as the craziest year in ME/ CFS history. Nothing could replace the excitement of the XMRV discovery or erase the letdown at its downfall but as the new initiatives popped up it was as if the medical gods sought some balance for
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Posted by Cort Johnson (Corrine continues her blog recounting her visits to and charting her progress with, Dr. Peterson, one of our most experienced practitioners. As a bonus she includes her “Picking Dr. Peterson’s Brain” section where he answers her’s and others questions about CFS.) Summary to Date “Life can be likened to a grindstone. Whether it grinds you down
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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
ContinuePosted by Cort Johnson Discuss this article on the forums Written by alex3619 Thanks to Alex for allowing us to post a thought-provoking blog suggesting that focusing a bit less energy on righteous indignation and bit more energy on undertaking rigorous examinations of positions and studies might make ME/CFS advocacy a lot more effective. We spend of lot of energy
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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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