Tag: MECFS

US: Family testifies about CDC's harmful recommendations at CFSAC

A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or

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US: Read Terri Wilder's CFSAC Testimony

  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-yearly, and recently met Jan. 12-13, 2017.  #MEAction activist, Terri Wilder, spoke during the comment period at

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Canada: Find CIHR qualified grant reviewers!

When a grant proposal is submitted, a panel of experts will examine it for merit before making a final decision.  But what happens when those ‘experts’ deny the very existence of the disease they purport to study? Memorably, a recent grant proposal was submitted to Canada’s CIHR (Canadian Institutes of Health Research) to study ME/CFS,

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Take Lenny Jason's survey on emotional impact of having ME

Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer.  Jason is well-known for his epidemiology work, with over 80 articles on ME; he was also involved in the creation

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Canada: Research Reviewers as Disease Denialists

Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME).  Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the

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Naviaux's metabolism paper is about as big as you think

Robert Naviaux, at researcher at University of California, San Diego, published a landmark paper yesterday on the metabolites of patients with ME/CFS. It made news around the world. Below, an in-depth analysis of the paper’s findings and its implications. Note: some of the information below is speculative, linking Naviaux’s findings to other research.  Findings not

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AHRQ Agrees: GET useless, CBT ineffective

By Mary Dimmock and Jennie Spotila This is a cross-post originally published in Jennie Spotila’s blog, Occupy ME. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness

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Tribunal orders release of PACE data

A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide. The David-vs-Goliath outcome represents the first successful attempt to begin to counter the

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