Author: #MEAction

Post-interferon fatigue study: a mixed bag

A study scheduled for our December research roundup entered the limelight yesterday due to an SMC campaign in the UK. The study that has everyone talking is a study at King’s College London called Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of Chronic Fatigue Syndrome and features some familiar faces, including Chalder.  The

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

  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 Senate and Congresswoman Anna

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Become a Social Media Ambassador for #MEAction!

We are so excited to announce a new volunteer program at #MEAction! We will now have social media ambassadors! A social media ambassador is a volunteer who is knowledgeable, an enthusiastic supporter of the ME community and #MEAction, and has a strong social media presence. Each ambassador will amplify #MEAction’s social media efforts and share

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#MEAction met with NIH Director – here's what happened

#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. In addition to NIH director, Francis Collins, M.D., Ph.D., other attendees from NIH included the Director

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#MEAction Seniors Release their Bill of Rights

Listen to the Article:  Written by Nancy K Wood / Edited by Eileen Rosenbloom and Marcie Atkinson December 10th will mark the 70th annual Human Rights Day, the anniversary of the adoption of the Universal Declaration. The theme for this decadal celebration is Promote, Engage and Reflect. We in the #MEAction Seniors Connect Facebook

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All I want for Christmas is #ScienceNotStigma

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 allies who emailed them. Staff

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Contact your CONGRESSIONAL REPRESENTATIVES now!

***UPDATE: THIS ACTION IS NOW OVER***   Please contact your MEMBERS OF CONGRESS IMMEDIATELY and urge them to sign a bicameral letter to the Department of Health and Human Services (HHS). The joint letter – from both the House and the Senate! – (1) states that more must be done by HHS to address ME/CFS

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Ruins: An ME Senior's Perspective

By Eileen Rosenbloom You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy. Our healthy peers would like us to think so.

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

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 from Walter J. Koroshetz,

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Values and Policies Process Announcement

Values and Policies Process Announcement A few months ago, #MEAction Executive Director Jennifer Brea released an open letter, outlining the importance of forming #MEAction’s values and policies as a community. #MEAction’s community-based model utilizes the strengths of our staff team to support, organize and amplify the voices of thousands of volunteers, activists, people with ME, and

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