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Category Archives: Actions

Take Action Now! The UK debate on ME has been granted

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Listen to this article on #MEAction’s Soundcloud here We are delighted that Carol Monaghan MP has managed to secure a debate in Parliament on Thursday afternoon, 24th January. This debate has been confirmed by the Backbench Business Committee and will take place in the Main Chamber. Carol Monaghan has been pushing ...

Apply for Stanford Medicine X Conference as ePatient or Presenter – deadline Jan. 31st

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Stanford University hosts an annual academic conference, Medicine X, every September to bring together community stakeholders, innovators and leaders in health care to empower collaborative change. This year's Medicine X | Change conference will be held at Stanford University in Palo Alto, California on Sept. 20 - 22, 2019. Stanford describes ...

Dec. 2018 FFAME Minutes: Advocating for ME while Maintaining Privacy

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MINUTES: Friends, Family and Allies for ME (FFAME) meeting: Saturday, December 1 Primary Discussion Topic: Advocating for ME while maintaining privacy for ourselves or loved ones For some of us, privacy isn’t an issue, as the pwME (person with myalgic encephalomyelitis) may be happy with any advocacy we can do. Some ...

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) ...

Research: supporting advocacy orgs yields huge payoffs

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This Giving Tuesday, I've got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: "This article explores their effects on federal ...

Stop the FDA from Banning Compounded Medications that Help People with ME – Take Action!

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For the past 35 years the FDA has neglected to bring meaningful treatments to market for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). The lack of FDA-approved drugs means many patients rely on compounded medications to help improve symptoms and quality of life. The FDA is considering banning ...

NICE Appoints Committee Rife with Bias – Take Action!

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What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines ...

Join the fight against stigma and pseudoscience in New York

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This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center -- and they invited Per Fink to speak.  If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young ...

Mobilize your Medical Providers to Watch Unrest for Credit

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We are so thrilled to announce that US healthcare providers – including doctors, nurses, physician assistants, therapists and social workers – can now watch Unrest and receive continuing medical education credits through the American Medical Women’s Association and Indiana University School of Medicine, in partnership with #MEAction. Healthcare providers can attend a live, ...