Actions Archives

Research: supporting advocacy orgs yields huge payoffs

November 27, 2018 6 Comments

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 medical research priority-setting.

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

November 5, 2018 9 Comments

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 substances that have helped people

NICE Appoints Committee Rife with Bias – Take Action!

November 3, 2018 8 Comments

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 detrimental to care. Last week,

Join the fight against stigma and pseudoscience in New York

October 19, 2018 2 Comments

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 woman with ME. [pullquote

Mobilize your Medical Providers to Watch Unrest for Credit

October 17, 2018 1 Comment

PLEASE NOTE: The Unrest CME has now expired. However, you can still recommend the film to your provider and access the associated materials. The film is available on Netflix and can be found here. We are so thrilled to announce that US healthcare providers – including doctors, nurses, physician assistants, therapists and social workers – can now

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

October 15, 2018 No Comments

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 Fink speak with Continuing Education

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

October 9, 2018 3 Comments

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 speak with continuing education credits.

Take the NYU Research Survey about your ME Experience

October 4, 2018 11 Comments

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

Sign Norway's Petition: Demand Resignation of Advisory Board Promoting Biopsychosocial Model

September 19, 2018 4 Comments

* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com. The petition is addressed to the Norwegian Ministry of Health and Care Services and below is an English translation – for our international supporters. Everyone is encouraged to sign the petition. The management for the National Advisory Unit on CFS/ME must resign.

Open Letter Demands Removal of Netflix's "Afflicted" – Sign the Petition

September 18, 2018 2 Comments

On September 18th, more than 40 writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. “We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions,” states the letter. “Its inclusion

Category: Actions