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 were specified in PACE’s
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
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
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
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 of well-characterised patients and controls
Columbia University – Center for Infection and Immunity has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.
Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in Chicago earlier this week. Her talk was titled, “Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE trial”. Rehmeyer explained to the 200-strong audience some of the problems with the trial, including
First of all, thank you so much to everyone who responded to the #MEAction survey to make our response to the NIH as comprehensive and representative as possible! On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The Blue Ribbon Foundation, the non-profit behind the documentary Forgotten Plague, has an educational and research agenda. In addition to getting the film in front of as many people in the medical and health profession as possible, one of the primary programs they have created is a student fellowship for medical students to assist in top ME research
On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.
