Posted by Cort Johnson Thanks to Senator Robert Casey (PA) and his colleagues Senator Richard Blumenthal (CT) and Senator Kay Hagan (NC) At the end of June, Senators Casey, Blumenthal and Hagan sent a letter to Secretary of Health Kathleen Sebelius requesting the FDA hold a stakeholders meeting on chronic fatigue syndrome. All three Senators serve on the Committee on Health, Education, Labor
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Posted by Cort Johnson Impaired blood pressure variability in chronic fatigue syndrome–a potential biomarker. Frith J, Zalewski P, Klawe JJ, Pairman J, Bitner A, Tafil-Klawe M, Newton JL. QJM. 2012 Jun 4 “..We believe that our findings add further evidence to the case for CFS being a disorder of sympathetic overactivity” We know that heart rate variability (HRV) isn’t, well, very variable in chronic fatigue syndrome. The electric signals
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Posted by Cort Johnson ‘At the moment, we’re in a very optimistic place” Dr. Julia Newton One of our most active researchers, Dr Julia Newton of Newcastle University focuses mostly on autonomic nervous system and muscle issues. A recent talk she did with “the Naked Scientist” gave us some exciting news about her work. Dr. Newton came to chronic fatigue syndrome
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Never be afraid to laugh at yourself. After all, you could be missing out on the joke of the century ~Dame Edna Everage It’s March and time to return to the land of the clear blue lake and the doctor with the clear blue eyes…Incline Village, Nevada and Dr. P! J But first, allowme to recap the months following my
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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 Reversing a 2009 decision some commentators felt was potentially crippling to Hemispherx BioPharma, Ampligen’s producer, the FDA today stated they would not, after all, require a expensive 300 person study to assess Ampligen’s effectiveness in chronic fatigue syndrome (ME/CFS). (Safety concerns appear to have been taken care of.) Instead they would allow Hemispherx to use new
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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
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Posted by Cort Johnson For more than 25 years, the Department of Health and Human Services (DHHS) has known how debilitating chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS) can be. Studies have shown that ME/CFS is common, afflicting perhaps 1 million people in the U.S. and the CDC reports ME/CFS “can be as disabling as multiple sclerosis,
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Posted by Cort Johnson YOUR VOICES MADE THE DIFFERENCE We are very happy to announce that during a conference call, Dr. Janet Woodcock, Director of Center for Drug Evaluation and Research at the FDA, made a commitment to the ME/CFS community to hold a Stakeholder Meeting. We’ll let you know more as the meeting and agenda for the meeting develops. In
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(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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Posted by Cort Johnson In a surprise, Chief Justice John Roberts joined the four liberal members of the Supreme Court to uphold most provisions of the Affordable Health Care Act including the individual health care mandate. The implications of the Supreme Court’s decision are substantial for people with chronic illnesses, in general, and for people with chronic fatigue syndrome who
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Posted by Cort Johnson Norwegian journalist Jorgen Jelstad has been all over the Rituximab story. His Invest in ME Conference tweets updated us on recent events, in his “How Important is Rituximab?” blog he talked with researchers about Rituximab’s potential and in his recently blog, “The Drug”, he published a blow-by-blow account of how Rituximab grew to such prominence in the
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