The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field, passing a motion in the Senate to mark International ME and CFS Awareness Day.
The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29
The following arrangement of Blowin’ in the Wind, with alternative lyrics about the struggles faced by people with ME, is performed by patients and their carers from around the world: If you would like to play and/or sing this song at a #MillionsMissing protest on 12 May, or at any other event, please use
I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”
Photo from The Center’s 1994 Gay Pride March on the U.N. Recently, ME activists have been reaching out to the New York LGBTQ community to educate them about ME and build allies. Terri Wilder, Gabriel San Emeterio and Kristina Osobka went to The Center in NYC, where they met with the organization’s executive director
#MillionsMissing is fast approaching on May 12th, and we are thrilled to see cities across the world planning demonstrations with bullhorns and speeches. But, we want to emphasize that #MillionsMissing is a movement of “can-you-see-ME-now” at any level. We strongly encourage people who cannot leave their homes to join the fight from your
Looking for volunteers to launch our Neglected Chronic Illnesses Foundation – Pakistan’s Facebook page. This foundation will be the first to tackle MECFS in Pakistan and will serve as a charity and advocacy organisation – providing patients care; with a fully rounded approach.
The success of #MEAction – to achieve health equity for people with myalgic encephalomyelitis – is in the hands of hundreds of volunteers around the world who commit themselves to a vision, and give as much energy as their bodies allow to make it a reality. The work is ongoing, and often tedious,
The U.S. Chronic Fatigue Advisory Committee (CFSAC) is looking to fill six vacant positions as voting members: One position for patients or caregivers affected by ME/CFS One position for an individual with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with ME/CFS
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
