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Category: All News

Volunteer of the Month: A Builder of Community

August 6, 2018 5 Comments

We want to honor volunteer Holly L. this month for her dedication to building an engaged, informed community for people with myalgic encephalomyelitis through her work managing the #MEAction TN Facebook Group, and the Pregnancy and Parenting with ME Facebook Group. Holly also works behind-the-scenes to keep the #MEAction Facebook page up-to-date with the latest science, policy, commentary, actions

#MEAction UK Activist Speaks at the International Deaf & Disabled People's Solidarity Summit

August 2, 2018 3 Comments

Article written by Sian Leary and Nathalie Wright | Photo credit: Paula Peters On 22nd July, Deaf and Disabled people from around the world gathered in East London in solidarity to discuss countering oppression and coordinating resistance, especially in the light of austerity and the rise of the far right. Nathalie Wright from #MEAction Network

Learn how to Lobby Congress: Read our Toolkit

August 1, 2018 No Comments

Since its inception three years ago, the #MEAction Congressional team has worked hard to build relationships with members of Congress in order to gain their support for investing in biomedical research and clinical care for myalgic encephalomyelitis. Now, the Congress team has created a comprehensive manual for activists who want to gain more knowledge about

CDC Revises Its Information on ME

July 29, 2018 118 Comments

Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments below by clicking on the updated version of the article by clicking here: CDC website article text. Community-based changes to our recommendations are in red ink. In September 2016, I attended a meeting at the Centers for

NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope

July 27, 2018 3 Comments

The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic Encephalomyelitis by October 2020. #MEAction UK has issued a response to the second draft scope for the ME/CFS Guideline. The scope is a document which will provide the framework for the new guidelines; providing feedback about

Building Allies for M.E. at Women’s Rights Conference

July 27, 2018 4 Comments

The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in which sexism has played a role in the disbelief, misdiagnosing and mistreatment of patients. (ME affects men, women and children but 75 percent are women.) The National Organization for Women (NOW) held a panel discussion about

M.E. Takes Center Stage at the Women’s Health Empowerment Summit

July 24, 2018 No Comments

This past May, the Women’s Health Empowerment Summit chose three patients to share testimonies about their illness and Myalgic Encephalomyelitis was chosen as one of the three! PwME Kat Fox discusses her experience participating at the summit. How did you get the opportunity to speak at the Women’s Health Empowerment Summit? Well, for that we have to

Learning about ME at the Dysautonomia Conference

July 22, 2018 2 Comments

#MEAction sent two representatives, Beth Mazur and Jaime Seltzer, to attend the 2018 Dysautonomia International Conference in Nashville last month. This was an opportunity for our community to join forces and gain insight regarding the commonalities in triggers, symptoms, diagnoses, and methods of treatment between ME and dysautonomia. Dysautonomia refers to diseases that affect the

Open Letter: 75 International Experts Urge Netherlands to Invest in Biomedical Research for ME

July 20, 2018 5 Comments

75 clinicians, scientists and other professionals explain to the Dutch Minister of Health what this diseas is, but also is NOT (not a pychological or psychosomatic disease), that there is no robust evidence for CBT/GET nor for the underlying hypothesis and that the only way to achieve much needed progress for patients is biomedical research

The NIH responds to #MEAction, Next Steps

July 18, 2018 14 Comments

Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting with #MEAction. We also asked