Tag: research

Patients’ reanalysis sinks PACE’s “recovery” claims

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’

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QMUL releases the PACE data

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

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Lancet rejects scientists’ PACE letter

The Lancet has rejected a letter criticising the PACE trial that it invited from a large group of scientists.  This decision was made after its editor discussed the matter with the study’s authors. Professor Vincent Racaniello, who led the letter, described the behaviour of Dr. Richard Horton, editor of The Lancet, as “unprofessional”. Racaniello, with

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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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Canada: officials turn down grant app because CFS "isn't real"

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

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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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#MEAction RFI Poll Report (Part 3 of 3)

This is the third article in our series on the #MEAction RFI polling data.  Click here for Part I and here for Part II. Clinical and Research Testing Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due

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#MEAction RFI Poll Report (Part 2 of 3)

This is the second part of the RFI Poll Report.  To see the Part 1, click here. The Need for an Inclusive Model of Research Severe patients The inclusion of severe patients in research emerged as a theme in stakeholder comments. Severe patients will likely present with gross biological abnormalities, and therefore present a significant

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