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Category Archives: Advocacy

Calling all Family, Friends and Allies – Join the Movement to Support People with ME

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You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or how you can help. #MEAction is supporting a new project called FFAME - Family, Friends and Allies for ME - to build a network of support for family, friends, caregivers and ...

Watch Jen Brea’s Powerful Award Speech from the 2018 NOW Conference

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At the National Organization for Women (NOW) conference held this past July, #MEAction's co-founder and voluntary executive director, Jennifer Brea, was awarded the Victoria J. Mastrobuono Award for Women's Health for her work championing the cause of people with myalgic encephalomyelitis through #MEAction, and her documentary film, Unrest. The award is given annually to ...

CDC Revises Its Information on ME

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In September 2016, I attended a meeting at the Centers for Disease Control as #MEAction’s representative.  Also present were Dr. Ken Friedman, Dr. Mark VanNess, Mary Dimmock, Dr. Lucinda Bateman, Dr. Lily Chu, Wilhelmina Jenkins, Dr. Anthony Komaroff, Dr. Charles Lapp, Dr. Susan Levine, Dr. Dan Peterson, and many other ...

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

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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 ...

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

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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 ...

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

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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 ...

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

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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 ...

Pastor Testifies About Wife’s ME

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Lutheran pastor, Stephen Friedrich, spoke about his wife's struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) hearing on June 20th.  CFSAC met for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and ...

What next for the NICE guidelines?

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Parliament Plays NICE #MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st June, after working so hard alongside so many others to make it happen. The three hour debate in Westminster Hall about treatment and research reflected a seismic shift in political understanding of ME ...

Volunteer of the Month: a Scottish Trio

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This month we want to honor the work of three women with #MEAction Scotland - Emma Shorter, Kim Gurav and Janet Sylvester -  who have done an incredible job advocating for people with myalgic encephalomyelitis. The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which ...