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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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
Continueby Cort Johnson The results of the Presidential election leave the ME/CFS Community with a chance and some hope, but no guarantees of major change… Research With President Obama in office, the National Institutes of Health (NIH) will remain as budget challenged as ever, and the chances of getting significantly more funding remain low at best, but as the country
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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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Cytokine expression profiles of immune imbalance in post-mononucleosis chronic fatigue. Broderick G, Katz BZ, Fernandes H, Fletcher MA, Klimas NG, Smith FA, O’Gorman MR, Vernon SD, Taylor R. J Transl Med. 2012 Sep 13;10(1):191. [Epub ahead of print] Broderick, Fletcher, Klimas, Vernon, Taylor… this big NIH funded study was loaded with top ME/CFS researchers. Similar to the Dubbo studies in Australia, the
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Posted by Cort Johnson PHANU is rising…. Lead by Dr.Sonya Marshall-Gradisnuk and Dr. Donald Staines, the PHANU ME/CFS Australian research team presented more studies at the 2011 Ottawa IACFS/ME conference than any other, scored a major grant from the Mason Foundation, established close ties with Dr. Peterson at the Simmaron Foundation and is moving to a larger laboratory at Griffith University.
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Posted by Cort Johnson Looking Up Down Under – the PHANU Story ME/CFS research around the world is pretty spotty. The US and the UK are long-time hubs, with Canada coming on in the last few years. Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe. South of the equator, the picture is bleak
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Posted by Cort Johnson A Health Service provider may want you (gasp)! Yes, it’s true. After all the cold shoulders and denials of coverage, etc. a health services system in the Southeastern United States (to remain unnamed) wants to determine whether it makes sense for them to open an neuroendocrineimmune center focusing on ME/CFS, fibromyalgia, lyme disease, etc. To
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Posted by Cort Johnson After a warm winter the Sierras were experiencing a cold and snowy March. I drove into cold blue skies but within a day it’d started snowing -hard. We got ‘over the hill’ OK the first day, slipping a bit now and then, but got stuck on the highway the second. I hiked back to get some
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Posted by Cort Johnson Klonopin (Clonazepam) may be the most commonly used drug in chronic fatigue syndrome (ME/CFS). Dr. Cheney hailed its use, putting the drug in the ‘neuroprotector’ column because its ability to reduce sensory nervous overload gave the brain, he thought, a chance to rest and rejuvenate itself. Dr. Bell agreed about its value, stating “For years I have
ContinueJoint Request from the ME/CFS Community for Action Date: June 5, 2012 To: Secretary Sebelius, Assistant Secretary Koh, Deputy Assistant Secretary Lee, and the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Dear Secretary Sebelius, Dr. Koh, Dr. Lee, and CFSAC We strongly believe there is an urgent need for the
(Guest blogger Simon McGrath focuses on an important topic and stumbling block for ME/CFS – replication studies (or the lack thereof). The XMRV story presents a somewhat unusual theme; a subject receiving enough study that a consensus (at least to date) has been reached and in relative rapid fashion but a recent blog found a significant number of research efforts are
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