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Actions you can take now to advance the fight for health equality:

Stop the U.S. FDA from banning compounded medications that help people with ME – email the committee.
boy in bed with arms folded and head lowered

Tell the Finnish Ministers of Health that ME/CFS is not a functional disorder, and to provide appropriate treatment. Sign the petition

 

Tell NICE to appoint ME experts and independent professionals to the guidelines development committee that will determine the UK’s guidelines on ME. Send an email.

 

Tell your medical providers to watch Unrest for Continuing Education credit! There are 3 ways that you can do this – read more!
Individuals who were lied to and misrepresented by Netflix’s Afflicted include (left to right): Jake, Pilar, Jamison, Jake & Bekah, Jill & Janine Urge Netflix to remove the docuseries, Afflicted, from its site. More than 40 writers, activists, artists, filmmakers, physicians and scientists have written an open letter expressing deep concern about Afflicted’s unethical treatment of its subjects, and the series many factual errors and omissions. Join in solidarity and sign the petition.
Ask your U.S. House representative to hold a hearing on ME. 
We are working on an important action to build support for ME in the House, but we need your help to reach out to your representatives to let them know this action is important to their constituents. Contact your House representatives today: 

Support people with ME in Norway! Sign the petition calling for the resignation of the National Advisory Unit on chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME), which is promoting a biopsychosocial model of the disease. Everyone is encouraged to sign. Read more.
Participate in research studies on ME. Read about the studies that are looking to enroll people with ME.
Donate: to support #MEAction’s movement-building and advocacy work.

Read more about recent U.S. actions involving the NIH, CDC, HHS and FDA.


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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, ...
young white woman in group of protestors turns head to look into camera. Holds a sign "Millions Suffering!"

Per Fink is coming to US this week! Here’s 3 actions you can take

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The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME) is a psychosomatic illness. Per Fink has been invited to speak at a psychosomatic conference at Columbia University in New York City on Saturday, Oct. 20th. Columbia University will reward medical providers who come to hear Per ...

Meet with your MP about ME – Our Toolkit shows you how!

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Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care and investment in biomedical research for ME. Gaining MPs support in lobbying for change is vital to our success. So whether you are a person with ME, their carer, friend, family ...

Stop Per Fink from Spreading Misinformation about ME: Sign the Petition

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The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME) is a psychosomatic illness. Per Fink has been invited to speak at a psychosomatic conference at Columbia University in New York City on Oct. 20th. Columbia University will reward medical providers who come to hear Per Fink ...

Take the NYU Research Survey about your ME Experience

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I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S ...