Chronic fatigue syndrome (ME/CFS) takes people to many different places but its pushed few people as far from a normal life as it has Lisa. Lisa has a twofer; a severe case of both chronic fatigue syndrome and environmental illness. If chronic fatigue syndrome is often numbingly difficult environmental illness (EI) or multiple chemical sensitivity (MCS) is simply harsh. EI
ContinueMy Cooperative Diagnostics Test
Posted by Cort Johnson Discuss this article on the forums I received my test result back from Cooperative Diagnostics. I was, like everyone else who has taken the poll thus far, tested negative. I was able to get the test done because I was part of an XMRV study CD is doing. Given the results of the Imperial College tests
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2009 In Review
Posted by Cort Johnson EVENTS Biggest Event – what else? XMRV takes the spotlight as no research finding has before, retrovirologists across the world clamor for samples, worry mounts about a tainted blood supply, Hilary Johnson blows into the New York Times Op Ed section, and patients gasp and cross their fingers in hopes that it will all work out. See XMRV
ContinueA Dark Vision
Posted by Cort Johnson Hilary Johnson, beloved CDC headhunter is raking the CFIDS Association over the coals again. Once again she’s taking no prisoners. In her last blog on the CAA she called the organization the Bechtel of the CFS community and accused them of inciting a ‘pogrom’. In this blog she proclaims CAA is the CDC and vice versa .
ContinuePhoenix Rising Researcher of the Year Pt. 1
Posted by Cort Johnson The Researcher of the Year analysis doesn’t just take research into account; it also includes their outreach into the patient community and their impact on how the research field is functioning. This year the Researcher of the Year was an easy choice. Dr. Vernon excelled in all three categories in 2008. (As she did in 2009.
ContinueResearcher of the Year (08) Part II: A Bold Commitment Plus XMRV and the CAA
Posted by Cort Johnson A Bold Effort Collaboration – Dr. Vernon believes increased collaboration will be essential for our research community’s success. She knows the power collaboration can unleash. The Pharmacogenomics projects she lead at the CDC – which ended up thrusting ME/CFS into the research spotlight and helped triggered the National Press Conference – was the result of a
Continue“I Almost Stole Today”
Posted by Cort Johnson This blog from someone in the Phoenix Rising Forums illustrates some of the decisions that confront people who have the misfortune to be both unhealthy and poor. What does one do, for instance, when one only has a few dollars left at the end of the month for some stew and an onion costs 75 cents. Shouldn’t everyone be able
ContinueXMRV in the Spotlight
Posted by Cort Johnson XMRV was next up at the mike at the CFSAC meeting. First Dr. Peterson went over the published research one more time. Hearing it again simply reinforced what an extraordinary discovery XMRV may be. His presentation was, in some ways, though, really just a prelude to Dr. Coffin’s presentation. The co-author of the major text in
ContinueAtlanta Journalist Smacks the CDC
Posted by Cort Johnson The CDC Problem – The CDC attempted to explain away the patients explosion of frustration at their Chronic Fatigue Syndrome (ME/CFS) program as the result of a well organized plot by the CFID’s Association of America. They haven’t yet come up with a good explanation for the avalanche of criticism visited upon them by the professional community. Instead of responding to
ContinueCFSAC Pt I – The Art of Evasion
Posted by Cort Johnson It was as if someone had transported the CFSAC committee to a different planet. Down from their small perch on at top of the building into the main lobby with the banks of lights shining down and three cameramen following their every move one wondered if this might be what the future looks like. The people
ContinueTeflon Woman
Posted by Cort Johnson With her smile and her ingratiating matter Dr. Hanna is the NIH’s Teflon woman for ME/CFS. As Dr. Reeves punches up his next dazzling 20 minute PowerPoint presentation Dr. Hanna throws her few tidbits into the mix and shuts up. It’s remarkable how little interest there has been in what is arguably the most important federal
ContinueThe Alpha Dog
Posted by Cort Johnson Tantalized by the opportunity to make a difference the ME/CFS community let loose on the CDC over the past year. To its credit the CDC’s review process allowed for that. Missing the Forest for the Tree – The CDC, however, is not the main game in town – they’re not the alpha dog we vitally need
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