Tag: awareness

CA Senate will Vote on Resolution for ME/CFS Thursday – Call your Senator!

California – A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before the California Senate this Thursday. Now, is a great time to educate your California Senator about ME/CFS, and let them know that you are a constituent who cares about this cause. Even though the resolution (which

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#MillionsMissing Will Take to the Streets on May 12th – Join Them!

The #MillionsMissing are taking to the streets in 17 cities across the world on Friday, May 12th to once again demand change for people with Myalgic Encephalomyelitis (ME). Five cities in the UK are hosting #MillionsMissing rallies – with London taking a stance before the department of health for the third time. Norway will demonstrate

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Contact your local journalist about #BedFest

Invite a journalist to cover the story of #BedFest in which artists with Myalgic Encephalomyelitis from all over the world have come together – many of them bed or homebound – to express themselves and showcase their music, art and poetry. Share the #BedFest website with your journalist – a living gallery and concert hall of art by people with

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Netherlands: Artists to showcase their work to raise awareness for ME

Anil van der Zee, 38, is a former professional ballet dancer in Amsterdam. In 2007, he contracted a viral infection, Cytomegalovirus, and never fully recovered. A few years later he was diagnosed with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). He describes his transition from being a strong, vibrant dancer to a

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Eleven Years with Severe ME – a Young Woman Writes Her Story

Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her “forgotten years” of having severe Myalgic Encephalomyelitis (ME) for 11 years since the age of 15. Her book focuses on the four years she spent hospitalized during which she was unable to speak, eat or move for the first two years.

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Impact of proposed NIH and CDC cuts on ME Research

How would the proposed NIH and CDC Budget Cuts affect ME research? News organizations recently reported that President Donald Trump’s administration has asked the House and Senate to approve budget cuts for 2017 of $1.232 billion for the National Institutes of Health (NIH) and $314 million for the Centers for Disease Control and Prevention (CDC).

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Musician with ME produces EP from her bed

#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face of the ME community.   Send in a still photo or 5-second clip of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. We will include these clips of people with

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"Unrest" premieres in Copenhagen to major media coverage

There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to the RiverRun International Film Festival in Winston-Salem on March 31st. Unrest made its international and European premiere in Copenhagen, Denmark at CPH:DOX, one of the leading festivals for documentary film in the world, on March 17.

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Julie Rehmeyer: Hope and Despair in Through the Shadowlands

Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was going through, having ME.  It

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