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
I have had M.E. for years now, unable to work. My 19 year old daughter is unemployed, pregnant and living at home looking for a job. My husband was just put in the hospital for 2 days and told he needed his colon removed, an ileostomy, and a second surgery in 4 to 6 months
The #MillionsMissing are using Thunderclap to amplify our message. Between now and September 27, sign up here and promote your participation on social media. If you have any social media account, including Facebook, Twitter, or Tumblr, you can sign up and add your voice to that of other #MillionsMissing and allies. How does a Thunderclap
#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives. Continued work from the Congressional team at #MEAction has yielded fruit. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren
The name of Australian patient Alem Matthees has become familiar in the last few days since a tribunal ruled that Queen Mary University of London (QMUL) must release to him the anonymised raw data from the PACE trial. Matthees requested in March 2014 under the Freedom of Information Act. The decision is widely regarded as
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
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
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.
