Featured news Archives

A Tribute to Mag Friel

April 7, 2018 4 Comments

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”

Activism Update from NY – Reaching Out to LGBTQ Community

April 6, 2018 4 Comments

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

Join the #MillionsMissing – from your bed, your home, a local park

April 6, 2018 8 Comments

#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

Chronic Illness Foundation Launches in Pakistan – Call for Support

April 5, 2018 1 Comment

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.

#MEAction Volunteer of the Month: Congressional Advocate

March 30, 2018 5 Comments

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,

CFS Advisory Committee Seeks Voting Members

March 26, 2018 5 Comments

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

Reanalysis of PACE Trial Shows GET and CBT are Ineffective

March 23, 2018 No Comments

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

Dutch Health Council Downgrades GET for ME/CFS

March 23, 2018 3 Comments

Author: Dutch Citizens’ Initiative “Recognize ME” (Group ME-TheHague). In the release of its much-anticipated report, the Dutch Health Council sees no reason to advise the use of Graded Exercise Therapy for people with Myalgic Encephalomyelitis / chronic fatigue syndrome. However, the report does not go as far as to provide a rebuttal of GET or

Ten Percent of U.S. House Representatives Show Support for ME

March 21, 2018 2 Comments

Yes, you read right! Thanks to the incredible community outreach over the course of just a few days, TEN percent of the House of Representatives signed a letter to the chairs of the House Appropriations Committee advocating for ME/CFS. Forty-four members from twenty states and the District of Columbia signed on – thirteen more than

A tribute to ‘Bob’ – Robert Courtney, ME activist, fundraiser, researcher, and friend

March 19, 2018 9 Comments

Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message that precedes it. We at #MEAction are pleased to reproduce both here. We, some of Bob’s many friends, have put together this tribute to him. We do not think it is appropriate to discuss the circumstances

Category: Featured news