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Canada: officials turn down grant app because CFS “isn’t real”

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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 ...
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AHRQ Agrees: GET useless, CBT ineffective

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by Jennie Spotila and Mary Dimmock Mary Dimmock has led the way on this issue, and is co-author of this post, which was 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 ...

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QMUL “studying” PACE data-release ruling

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Queen Mary University of London (QMUL) have issued a statement in response to Tuesday’s tribunal ruling that they must release anonymised PACE trial data to a patient who requested it under the Freedom of Information Act. The data would allow the calculation of main outcome and recovery figures using analyses that ...
Tribunal

Tribunal orders release of PACE data

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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 ...
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#MEAction RFI Poll Report (Part 3 of 3)

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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 ...
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Empty shoes

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A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time ...
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#MEAction RFI Poll Report (Part 2 of 3)

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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 ...
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The UK ME/CFS biobank paves the way for bigger and better research

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On ME Awareness day this year, 12th May, the London School of Hygiene and Tropical Medicine (LSHTM) opened the UK ME/CFS Biobank for business, with blood samples available from 300 patients now, and there will soon be samples for over 200 controls. The ready availability of samples for large numbers ...

 

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