Action Alert: Ask Francis Collins Anything this Friday at 2pm EST

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  The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit "Ask Me Anything" (AMA) Series on Friday, April 20 at 2pm EST. Genomics experts will answer questions at the Reddit Science community forum, "/r/Science". A Reddit AMA is an opportunity to ask interesting individuals questions about anything ...

Sharing UNREST through Library Donations

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  Activism doesn’t always have to take place in government offices or with signs and shouting; it can take place in quiet libraries. Library systems are the target of Cindy Downey’s efforts to make Jen Brea’s documentary Unrest accessible to all. Downey, of British Columbia’s Okanagan Valley, donated copies of Unrest to ...

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

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    #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

A Tribute to Mag Friel

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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

Activism Update from NY – Reaching Out to LGBTQ Community

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  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

Internship Opportunity: Medical Outreach and Science Communications

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#MEAction is a global, grassroots network for people with Myalgic Encephalomyelitis based in Los Angeles. We're seeking a summer intern passionate about medical education and science communications to support our efforts to bring new clinicians and researchers into this growing field. This internship is ideal for an undergraduate with an interest

Chronic Illness Foundation Launches in Pakistan – Call for Support

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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

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    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,

CFS Advisory Committee Seeks Voting Members

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    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

Reanalysis of PACE Trial Shows GET and CBT are Ineffective

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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

Dutch Health Council Downgrades GET for ME/CFS

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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

Join SMCI on Capitol Hill for ME/CFS Advocacy Day

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The Solve ME/CFS Initiative’s second annual ME/CFS Advocacy Day is May 15th in Washington, D.C. Registration is recommended by April 1st.

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

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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

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

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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