Senators Stand Up for ME/CFS – Support Push For FDA Stakeholder Meeting

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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The ‘Wolf’ in ME/CFS: Newton on a System Stuck in Overdrive

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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Major Move From FDA Puts Ampligen Back on Track

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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The Best Drug for ME/CFS? The Other Side of Klonopin: A Patient’s Story and A Survey

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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Success! FDA Commits to Stakeholder Meeting…

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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Once Is Not Enough…..by Simon McGrath

(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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Supreme Court Lets Affordable Health Care Act Stand….Implications for ME/CFS

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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“The Drug” – The Rituximab Story…From the Beginning to the Present….

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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