Mark Berry reports from London on the 8th Invest in ME International ME Conference. This was only my second year at the Invest in ME conference, but already I feel right at home! The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family (yes it really does feel like
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Mark Berry looks back on the first day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013
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Jennie Spotila looks forward to the next meeting of the CFS Advisory Committee – and explains how you can participate. The spring meeting of the CFS Advisory Committee is May 22-23, and we only have a few weeks to prepare. The agenda is not available yet, but we do know about a few new things happening at the meeting. New
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Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly. “No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013. This has to be one of
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by Jody Smith A Patient Conference for Dr. Nancy Klimas was hosted by Nova Southeastern University on January 26, 2013. I was delighted to see Vonnie Kennedy’s article A Celebration of Hope and Progress with her first-hand view of the morning sessions. Vonnie did not have the advantage I’ve had of being able to see the videos from the conference,
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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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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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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 Jody Smith Nova Southeastern University College of Osteopathic Medicine is hosting a Patient Conference for Dr. Nancy Klimas on January 26, 2013. Klimas is considered to be an expert in immune disorders and one of the world’s best researchers and clinicians for ME/CFS. The theme of the conference is CFS/ME and Gulf War Illness 2013 – A Celebration of Hope
ContinueTry to leave your calendar open from 8am-5pm EST on the 20th for the FDA’s hearing in Ampligen! Information about the meeting is available at December 20, 2012 Meeting of the Arthritis Drugs Advisory Committee (not mistitled!). The webcast will take place at https://collaboration.fda.gov/aac122012/ and Phoenix Rising will attempt to embed the video locally to make it easier to simultaneously
Continue The bi-annual federal advisory committee (CFSAC) meeting for chronic fatigue syndrome is upon us. It’s intriguing to note that ME/CFS is one of the few disorders to have a federal advisory panel all to itself. CFSAC contains ex-officio officials who represent a variety of federal agencies (CDC, NIH, FDA, Social Security Administration and others), and ME/CFS professionals who provide recommendations
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Posted by Cort Johnson Jorgen Jelstad is a Norwegian journalist with a family member who has a severe case of ME/CFS. He tweeted the Ottawa conference last year and he tweeted the Invest in ME conference yesterday. Suggesting a certain excitement and vigor is present, he reported that a brain-storming session occurred two days prior to the conference. From Dr.
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