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Category Archives: Advocacy

Take Action Now! The UK debate on ME has been granted

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Listen to this article on #MEAction’s Soundcloud here We are delighted that Carol Monaghan MP has managed to secure a debate in Parliament on Thursday afternoon, 24th January. This debate has been confirmed by the Backbench Business Committee and will take place in the Main Chamber. Carol Monaghan has been pushing ...

A Year in Review: Celebrating the 2018 Achievements of Our Community

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2018 has been a big year at #MEAction!  Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end ...

#MEAction Responds to NIH

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As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of ...

Community Roundup – End-Of-Year, 2018

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As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austria Austrian broadcast station ...

Volunteer of the Month – A Source of Inspiration and Wisdom

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Jenny Horner is another stalwart advocate in the myalgic encephalomyelitis (ME) community who inspires us to dig deeper and reach higher. She first got involved with #MEAction UK in an effort to protect children from the effects of being pushed to exercise, which has shown to cause harm in people with ...

Celebrating the 2018 Successes of Our U.S. State and Local Advocacy Groups

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As the year comes to a close and we look over all that we have accomplished, we know that we could not have done this without the amazing work of our #MEAction U.S. state and local advocacy groups. These groups are the foundation of our work as they build support, ...

Holiday Win: 42 Members of Congress Sign on to Support People with ME/CFS

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  Thanks to another strong turnout from the ME/CFS community, 14 Senators and 28 Congressional Representatives joined together to sign this bipartisan letter to the U.S. Department of Health and Human Services (HHS) in support of people with ME/CFS. The bicameral letter was sponsored by Senator Ed Markey (MA) in the ...

Australian MP Introduces Petition for ME in Parliament

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Australian Greens MP, Adam Bandt, formally tabled a petition for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in Parliament on Dec. 4th. The Emerge Australia petition asks the National Disability Insurance Agency (NDIA) to collaborate with the ME/CFS community to develop appropriate guidelines for National Disability Insurance Scheme (NDIS) assessors, and for ME/CFS to be ...

All I want for Christmas is #ScienceNotStigma

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This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and ...

NIH’s Dismissive Response to Mary Gelpi’s 50K Petition

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Last month, Mary Gelpi sent a petition with more than 50,000 signatures to the director of the U.S. National Institutes of Health (NIH), Francis Collins, asking the NIH to increase funding for ME/CFS to 100 million annually. Mary's friend, Matt Tyler, who sent a letter accompanying the petition, received the response below ...