Posted by Cort Johnson Discuss this article on the forums Jennifer Spotila was Chairman of the Board of the CFIDS Association of America from 2008-2009 and is a Board member today. Companion Articles CFIDS Association: the Last Ten Years – An Overview CFIDS Association: a 2000-2010 Timeline Can you briefly tell us your story with chronic fatigue syndrome (ME/CFS)? Jennie’s
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Lannie at the Pacific Fatigue Lab: Part IV The Report is In – Implementing the Results
Discuss this article on the forums (Lannie goes over the report from the Pacific Fatigue Lab and creates a ‘a plan of attack’ to implement what she’s learned about her body. Thanks again to Lannie for providing us our first in depth look at the Pacific Fatigue Lab’s innovative technology. You can find her blog here) Check out Part I
ContinueNo Money For ME/CFS? Think Again
Posted by Cort Johnson Oct 13 Testimony to the CFSAC Whenever the CFS community asks for funding we always hear are that ‘money is tight’ – too tight to help out with CFS – as if doing so would somehow break the budget. The truth is there’s always money for the NIH to do what it wants to do. Every
ContinueCFSAC II: A MAPP for ME/CFS?, Koh Disappoints, Mangan Stands up for ME/CFS?
Posted by Cort Johnson Discuss this article on the forums CFSAC Oct 2010: Day III – The FEDS One could argue that Day Three was the most important of the meeting. After all what people with ME/CFS vitally need are treatment and research centers doing rigorous work on the disorder and only the feds will provide that kind of money.
ContinueThe Times They Are a Changing – CAA Nominates Distinguished Researchers To CFSAC…
Posted by Cort Johnson Discuss this article on the forums ‘Names’ Step Out – A key, key need for 25 years has been to get distinguished researchers, ‘names’, interested in ME/CFS. We’ve always had good, committed researchers but rarely have we had people who could be counted as ‘opinion-makers’ or leaders. That is changing – quickly. The WPI’s XMRV finding
ContinueHas the Americans with Disabilities Act Made a Difference? By Rebecca R. Hastings, SPHR
Discuss this article on the forums This article by Rebecca Hastings is from Society for Human Resource Management. It contain pertinent issues for people with ME/CFS including the hurdles to finding meaningful employment while on disability. Just because one is on disability does that mean one should not be allowed to work at all? That is one of the issues
ContinueA Chronic Fatigue Syndrome (ME/CFS) Patient Returns: An Interview with Martha Kilcoyne by Cort Johnson
Posted by Cort Johnson Discuss this article on the forums Quote: After a bout with the flu when she was pregnant in 1993 Martha Kilcoyne was stuck with flu-like symptoms that never went away. On disability after two years of fruitless battle with the disease, she and her husband started over from ground zero. Working by themselves they pioneered several
ContinueDr. Nancy Klimas on Her New Clinic and More
Posted by Cort Johnson Dr. Klimas has been one of the central figures in CFS. A prominent AIDS researcher in the mid-1980’s she became acquainted with CFS when patients with another strange kind of immune dysfunction showed up on her door. In Osler’s Web she recounts that she, like everyone else, ‘tried not to believe in it” (eg CFS) but
ContinueBorn to Run: NJCFSA Rocks New Jersey
Posted by Cort Johnson Discuss this article on the forums Most states don’t have a statewide CFS organization let alone one that puts on conferences, writes comprehensive CFS manuals, provides high school and college scholarships, advises school on pediatric issues and more. In short, the ME/CFS patients in New Jersey have somehow managed to create a viable, proactive organization that
ContinueThe ‘Optimize Dr. Bateman’s Research’ Fundraiser
Posted by Cort Johnson The first ‘Official’ Phoenix Fundraiser will provide essential information infrastructure elements to Dr. Bateman that will assist her in her studies on XMRV with Dr. Light/Singh, on XMRV with Glaxo-Smith Kline, on muscle and other receptors with Dr. Light, on Ampligen with Hemispherx and other studies. etc. – from CBS, Cort Why Should We Help? Reason
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‘The More You Know the More You’ll Want to Give’: the first Enteroviral Foundation Opens
Posted by Cort Johnson I first met Lisa Faust at the Symposium on Viruses in 2008. She was at a table with a group of women all of whom were battling a similar sounding illness. They were definitely the acute onset infectious disease subset. My mouth dropped as I listened to their stories; some were on complete disability, others had
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