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
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).
As reported earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, Acting Assistant Secretary for Health on August 1. The purpose of the meeting was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been – that it is still
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
Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting with Dr. Karen DeSalvo, Assistant Secretary of Health on August 1. The purpose of that meeting, which happened yesterday, was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been and
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.
A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August. The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests. In May 2016, #MillionsMissing protests
It’s been a devastating summer for the ME community. We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and Linda Hayes Burke. Yesterday, we learned that we lost Tom Jarrett. Jodi Bassett, 41, was a passionate advocate for ME who helped thousands of people better understand their condition through her website The Hummingbirds’ Foundation for
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
