Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and wait.” Blogger Jennie Spotila describes the agency’s plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative Research Centers to lead
DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional malaise (PEM) in people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. The patient community aided in the development of this questionnaire to more accurately define and measure abnormal responses to physical and/or cognitive exertion. “We are
An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic Encephalomyelitis (ME) – making her the second person in the U.K to have ME listed on a death certificate. Merryn weighed less than six stone (84 pounds) at the time of her death, and had spent
Join the protest from your home. Here are several ways to take action.
Shoes have been a powerful, unifying symbol for #MillionsMissing since the first global protest in 2016. Demonstrations across the world have displayed rows of shoes to represent what people are missing from their lives due to myalgic encephalomyelitis. The haunting image of rows of shoes symbolizing the effect of this disease on people’s
What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of relaxing the criteria for “recovery” as the trial progressed? Researchers have just published a paper seeking to answer this question in a reanalysis of the PACE trial based on its original protocol. The authors concluded that
The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National Institute of Neurological Disorders and Stroke (NINDS). Read the first draft of the Common Data Elements for ME/CFS here. The purpose of the CDE Project is to standardize the collection of investigational data in order to facilitate
Members of Parliament heard about the flaws of the PACE Trial – and its devastating effects on people with Myalgic Encephalomyelitis (ME) – in a Westminster Hall debate today. Twenty-six MPs attended the debate.
Calling all people in the Bay Area – and beyond, You are invited to attend a screening of the Oscar-nominated documentary, Unrest, hosted by UC Berkeley’s School of Public Health on Feb. 20th. Register for the FREE event today. Please take this opportunity to invite your Congressional and State representatives to educate them about Myalgic Encephalomyelitis. You have extra
