#MEAction, Author at #MEAction Network

#MEAction Sends Letter to HHS Demanding New Federal Committee on ME

October 15, 2018 No Comments

Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human Services (HHS) that it had NOT accomplished its job when it suddenly dissolved the federal advisory committee – known as CFSAC – that makes recommendations on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and coordinates across federal agencies

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

October 11, 2018 No Comments

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 member or ally, we are

Karina Hansen is Free from State Guardianship!

October 10, 2018 9 Comments

At long last, Karina Hansen is now free from state guardianship! A local court in Denmark released Karina from state guardianship after an independent psychiatrist determined that she does not suffer with any psychiatric illness, understands the role of her state guardian and would like him removed from her case, and that she is capable of managing

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.

POTS and Beyond Conference 2018

October 9, 2018 3 Comments

The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field to educate physicians and patients on what is known about autonomic dysfunction. The neurology department of the University of Utah School of Medicine partnered with Dysautonomia International and Granger Medical to create this two-day event. The

Living Deeply in Tiny Rooms

October 7, 2018 10 Comments

Listen to the article: Here is a question for you: Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to me

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.

Notes from FFAME Sept. 2018 Call

September 26, 2018 No Comments

Hi: Greetings from FFAME, Friends, Family and Allies of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Welcome: Join us for our second on-line phone or computer meeting. We will be meeting monthly, the first Saturday of the month unless another time is suggested. You can listen in or speak up SATURDAY OCT. 6, 4pm EST, 1pm Pacific

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.

UK Coordinator Joins #MEAction Team

September 19, 2018 No Comments

#MEAction is thrilled to welcome aboard UK Coordinator, Espe Moreno, for the UK coordinator position this fall. Based in London, Espe previously worked for the Time for Unrest impact campaign in the UK, overseeing social media, screening events, and various advocacy efforts. Espe is a marketing, film and communications professional with 10+ years of international

Author: #MEAction