by Simon McGrath For me, the star attraction of Nancy Klimas’ recent CFS/GWI conference was always going to be Professor Mady Hornig and her talk. Hornig might not be well known by ME/CFS patients – yet – but her boss is: Ian Lipkin, who so skillfully handled the XMRV ‘dediscovery’ study (which she worked on too). Despite disproving a link
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by Sasha The first thing to say about this: you don’t need Facebook! The second thing: you don’t have to be in Canada to vote! The third thing… well, time to give you the details… Nature’s Bounty, a long-established manufacturer of vitamins and food supplements, is running an online voting contest for Canadian charities. The National ME/FM Action Network has
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by Joel (Snowathlete) Some dates you remember forever. Yesterday, on Wednesday 20th February 2013, a paper was published that may represent a major breakthrough in understanding the underlying mechanisms and cause of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The paper, from long-time ME/CFS researchers Dr Kenny De Meirleir, Vincent Lombardi and other colleagues in association with the Whittemore Peterson Institute, reports
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Jody Smith reports on how CFSAC’s “High Priority Recommendations” excluded most of our priorities and our input, in an apparent violation of the Federal Advisory Committee Act The CFS Advisory Committee has made many recommendations to the Secretary for Health and Human Services in the past. But in January 2013, the ME/CFS community got an unpleasant surprise. The CFSAC had
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Introduced and edited by Stukindawski Last year, prior to Peter White’s PACE Trial ‘recovery’ paper, Cort Johnson conducted an extensive interview with Tom Kindlon on the subject of CBT. The interview is in three parts and can be accessed by clicking the following links:- [Part One] – [Part Two] – [Part Three] On the topic of definition, Cort and Tom
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by Joel (Snowathlete) For millennia man has predicted the end of the world: an asteroid strike, a super-volcano, global warming… but in recent years, we’ve been told that our greatest threat is the microbe. In 2003 it was Bird flu, then in 2009 it was Swine flu, but as we’re still here, perhaps it’s a cock-and-bull story, rather than a
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by Jody Smith Post-exertional malaise. The first few times I heard this term I could not grasp what it meant. Chalk that up to a CFS-crippled brain. The first few dozen times I tried to say it, my cognitive fog prevented me from being able to do so. Many years later it rolls off the tongue, though not in a
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by Sasha Late on Friday, 8 February, Bob Miller announced the end of his hunger strike to get Ampligen approved for people with ME/CFS. Our community had never seen anything like this and I hope we never have to again. It hasn’t been easy watching Bob get weaker and weaker on his video diary and I’m sure there’s a collective
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In the first of a series of articles by Phoenix Rising writers on the Institute for Neuro Immune Medicine’s Patient Conference at Nova Southeastern University, Vonnie Kennedy gives an overview of the morning session. I was lucky enough to attend the morning session of the 2013 Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Gulf War Illness (ME/CFS and GWI) Patient Conference at NSU
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by Sasha The FDA may have disapproved Ampligen but Bob Miller isn’t giving up his hunger strike. Visibly weaker in a video clip on his Facebook page, on Day 9 of his hunger strike, Bob moved on to the next, logical target: he wants Secretary of Health Kathleen Sebelius to have the National Institutes of Health conduct a clinical trial
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Phoenix Rising has the chance to apply for one of 3 non-voting liaison representative positions for ME/CFS organizations on the CFSAC committee – but we only have until Feb 22 to choose our representative and submit our application, so it’s all hands to the pump! The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of
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by Sasha Bob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same. Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to
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