Fiscal Year 2016 Request for Applications Tally
October 12, 2016
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Despite advocates’ expectations, Fiscal Year 2016 ended with no RFAs issued for ME research.
Category: Science
Attend the IACFS/ME conference this month
October 10, 2016
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Where does rituximab fit in among the treatment options for ME/CFS? What is the US government’s research plan? How can I increase the chances my disability application will be or continue to be approved? What medications can I try for fibromyalgia now that morphine and related prescriptions are restricted? Come to our international scientific
The PACE Trial Fiasco
September 22, 2016
5 Comments
This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.
Patients’ reanalysis sinks PACE’s “recovery” claims
September 21, 2016
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Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy and graded exercise therapy did not help patients in the study to recover. Alem Matthees, an Australian patient who obtained the data after a two-year battle over his Freedom of Information request, applied the study authors’
Sign the UK and Global Petition: It's time to stop GET trials for ME/CFS
September 12, 2016
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After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS. If this petition reaches 10,000 signatures from UK citizens, its content will
QMUL releases the PACE data
September 9, 2016
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Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order. The move follows the publication three days previously of an open letter from
Canada: Research Reviewers as Disease Denialists
September 5, 2016
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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
Naviaux's metabolism paper is about as big as you think
August 30, 2016
79 Comments
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
Canada: officials turn down grant app because CFS "isn't real"
August 26, 2016
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For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to
AHRQ Agrees: GET useless, CBT ineffective
August 18, 2016
10 Comments
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