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Journal Publishes Article about ME Biobank

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Frontiers in Neurology, an open-access journal, published an article about the UK ME/CFS Biobank this week. This narrative paper describes the journey of how people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) came together with a multidisciplinary team of researchers to conceptualize and establish the biobank, which provides a critical resource ...

#MEAction Seniors Release their Bill of Rights

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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 group ...

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

Contact your CONGRESSIONAL REPRESENTATIVES now!

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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 needs, (2)

Ruins: An ME Senior’s Perspective

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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

Study Shows Red Blood Cells Less Deformable in ME Patients – Possible Biomarker

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Written by Ronald W. Davis, PhD This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new devices that will make a clear distinction between patients and healthy controls. These devices will

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

Study Examines Link between Immune Dysfunction and Metabolism in ME

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This article was first published on ME Australia.  An international collaboration of scientists, including Fane Mensah, Jo Cambridge and Australia's Chris Armstrong, investigated the relationship between CD24 expression and B cell maturation and found CD24 expression on B cells is related to energy metabolism and that its role differs between B

Values and Policies Process Announcement

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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

A Poet Contextualizes Our Struggle

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Poet and artist, Christiana Baltais, writes about moving the mountains of stigma that harm people with myalgic encephalomyelitis (ME) in this poignant poem. She asked that we share her poem to encourage our community and beyond - people with ME, friends, family and allies - to donate to our cause on #GivingTuesday. Facebook

Community Roundup – Telling Our Story to the World

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Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you'll be inspired reading about the work and accomplishments of some of our community heroes. Support the #MEAction community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27  where
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Volunteer of the Month – the Woman Behind the Per Fink Protest

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We are thrilled to honor Terri Wilder as our fall Volunteer of the Month. Terri spearheaded the protest and petition against Per Fink last month where the community took a stand against the harmful treatments that Per Fink has forced upon people with ME. Terri Wilder has been a monumental
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Suomalaisen Äidin Kertomus

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Suomalaiset ME/CFS-potilaat tarvitsevat apuasi. Allekirjoitathan vetoomuksen! Editorilta: Klikkaa tätä lukeaksesi englanninkielinen versio artikkelista. Editor’s note:  Click here to read the English translation of this article. Kaksitoista vuotta sitten syntyi poika, nuorimmaiseni. Iloinen hymyhuuli nauratti aina muita vitseillään ja oli kaikessa innolla mukana. Koulu oli kivaa, samoin urheilu ja kavereiden kanssa leikkiminen. Elämä oli hauska seikkailu. Äkkiä kaikki