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“The Bar Has Been Raised” – CFSAC Spring 2013, Day One

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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CFSAC Spring 2013 (May 22-23): How to Participate

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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Klimas Conference Video 3: Voices of Hope

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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Klimas Conference Videos 1 and 2: INIM’s Big Plan

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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A Celebration of Hope and Progress

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


Make Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing

Try 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 and Phoenix Rising will attempt to embed the video locally to make it easier to simultaneously

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Feds Under Review: CFSAC Live Webcast Oct 3rd and 4th

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