Tag: Chronic Fatigue Syndrome

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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The ME/CFS Biomarker Rollercoaster

Biomarkers are a holy grail for ME/CFS because they have the potential to help diagnose disease, track disease progression or progress and help inform which treatments might help. The need for biomarkers is immense and researchers will identify many possible ones. It is encouraging that there have been more possible biomarker reports recently. It can be so hard

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Join the Teach-In on Non-Violent Direct Action

Join us for a presentation and discussion on non-violent direct action with Alexis Danzig* and Terri Wilder on Sunday, April 16th at 3 pm EST (U.S.) / 9 p.m. London time.  The call will run for 90 minutes and is geared towards a global audience.  New and seasoned activists are highly encouraged to attend; those just

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Global Call-to-Action: Help secure the World Health Organisation's Classification of ME & CFS

Urgent call to action! We need all hands on deck for a simple, but important task! The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition. It’s crucial that we take action now!

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#MEAction and Solve ME/CFS Gear Up for Major Congressional Push

#MEAction and Solve ME/CFS Initiative are gearing up for a major congressional action for ME/CFS in Washington, D.C. from May 16 to 18. If you would like to join us in Washington, D.C. for meetings, let us know by April 4th so that we can make the necessary meeting arrangements with your legislators. Sign up here.

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URGENT Congressional Action: Ask your House Rep. to sign letter for ME

  URGENT Congressional Action! Ask your House representative to sign a letter that inserts favorable language for ME into the House Appropriations Committee report on the FY18 budget.  Deadline to sign: Tues., April 4th. Contact your House rep. today! See instructions for calling and emailing below. ~ U.S. House Representatives Zoe Lofgren and Anna Eshoo have agreed to sponsor

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URGENT: Call your U.S. congressperson: Sign the letter to stop NIH cut

President Trump is proposing to cut the National Institutes of Health (NIH) budget by $6 billion – or about one-fifth of the total agency budget. A cut to the NIH budget will almost certainly impact funding for biomedical research into Myalgic Encephalomyelitis (ME). Bipartisan members of Congress are circulating a letter that opposes this cut, and, instead,

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