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Category Archives: Awareness

Netflix Docuseries “Afflicted” is Terrible

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We anxiously awaited the release of Netflix's docuseries, "Afflicted," on Aug. 10 and are appalled by the dismissive, psychosomatic lens through which the patients are ultimately portrayed. The casting director had said that the “intention is to look at these experiences through a compassionate lens and give voice to those struggling ...

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 ...

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

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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 ...

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 ...

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 ...

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 ...

Next steps: a letter to our community

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Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward. We ...

NIH Director: Our Judge and Jury, Prison Guard and Executioner

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An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week 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 chronic fatigue syndrome.  *Note, an anonymous person gave this testimony. #MEAction has published ...

Mother Shares Heartbreaking Testimony about Sons with Severe ME

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This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and ...