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

Register for ME/CFS Advocacy Week & DC Lobby Day 2019!

Let’s take Congress by storm for ME! The week of meetings, virtual call-in actions and online events will take place from April 1 – 7th with Lobby Day taking place on April 3. Read more.

Register now.

Forty MPs voted unanimously to pass a motion for ME! Read more here. Thank your MP for their support!
Tell your medical providers to watch Unrest for Continuing Education credit! There are 3 ways that you can do this – read more!
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.

 

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.
Demand U.S. NIH deliver diagnostic and treatment results for ME in 5 years! – Tweet to Dr. Francis Collins.
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

 

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.
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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Participate in the Creation of a Mobile App for pwME through an Online Survey

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Listen to the article:  Who: Doctors from Columbia Medical center are interested in creating a mobile app called “my ME/CFS” for those with Myalgic Encephalomyelitis (ME). What: A survey that would provide information to doctors that are aiming to create this application; the app would provide a place for individuals with ME ...

Join the virtual demonstration in support of the ME debate!

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Listen to this article on #MEAction’s Soundcloud here On Thursday afternoon, 24th January, MPs from all parties will be debating a motion put forward by Carol Monaghan MP in the House of Commons. The motion covers biomedical research funding, the suspension of GET and CBT, updated training for medical professionals and ...

What can you do before this Thursday’s ME debate?

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Listen to this article on #MEAction’s Soundcloud here This Thursday 24th January, myalgic encephalomyelitis (ME) will be discussed in the main chamber of the House of Commons, as Members of Parliament from all Parties debate a motion on ME put forward by Carol Monaghan MP.  We want this debate to be ...

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 ...