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Per Fink is coming to US this week! Here's 3 actions you can take
The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME)
#MEAction Sends Letter to HHS Demanding New Federal Committee on ME
Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human
Enrolling: White Matter Evaluation with Stanford University
Researchers at Stanford University have discovered that the brains of patients with ME display abnormalities in the white matter
Emerge Australia Releases Report on National Survey of ME Patients
Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia.
#MEAction Sends Recommendations to CDC to Update its ME Website
This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis
Meet with your MP about ME – Our Toolkit shows you how!
Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care
Karina Hansen is Free from State Guardianship!
At long last, Karina Hansen is now free from state guardianship! A local court in Denmark released Karina from
Stop Per Fink from Spreading Misinformation about ME: Sign the Petition
The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME)
POTS and Beyond Conference 2018
The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field
Living Deeply in Tiny Rooms
Listen to the article: Here is a question for you: Is your life small or large? How do
Enrolling: Stanford Neuroinflammation Study
This study is interested in ME/CFS patients who would classify themselves in the severe category (mostly bedbound, could be housebound).
Take the NYU Research Survey about your ME Experience
I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S.
UK: ME gets Attention at General Practitioners Conference
Volunteers from #MEAction Scotland will attend the annual conference of the Royal College of General Practitioners (RCGP) in Glasgow
Australia: National Committee will Issue Report on ME and CFS
The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical
Australia: Macquarie University Study will look for Hypochondria and Somatic Symptoms in CFS, Fibro and MCS
Macquarie University are recruiting people with chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity for a study
Australia: Three Senators Form Parliamentary Friendship Group for ME and CFS
Three senators have formed a Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s
Enrolling: Bateman-Horne InTime Drug Intervention Trial
The InTime Trial aims to assess the effects of the investigational drug, CT38, in terms of its safety and
Notes from FFAME Sept. 2018 Call
Hi: Greetings from FFAME, Friends, Family and Allies of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Welcome: Join us for our
Join the Stanford Community Symposium via Livestream
The Stanford Genome Technology Center will host the Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored
NOW Adopts Resolution for ME
The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic
Sign Norway's Petition: Demand Resignation of Advisory Board Promoting Biopsychosocial Model
* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com. The petition is addressed to the
UK Coordinator Joins #MEAction Team
#MEAction is thrilled to welcome aboard UK Coordinator, Espe Moreno, for the UK coordinator position this fall. Based in
Open Letter Demands Removal of Netflix's "Afflicted" – Sign the Petition
On September 18th, more than 40 writers, activists, artists, filmmakers, physicians, and scientists came together to write an open
Alphabet Soup – Your Guide to Current U.S. Actions
When it rains, it pours! There has been so much activity in our US health institutions that it’s easy
NIH Creates Council to Advance ME Research
The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into
Enrolling: Stanford Neuroendocrine Investivagtion
Researchers from Stanford University aim to evaluate the endocrine system in female ME patients to learn how the hypothalamic-pituitary-adrenall (HPA) axis functions
Scottish Lib. Dems Pass Motion for ME, with Amendment
ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats
Beauty Sleeping: A Real Life Fairytale
Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful
How To Protest HHS with #MEAction
We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled
HHS Secretary Kills CFSAC!
If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good
Scottish Liberal Democrats will Vote on Motion for ME
At the Scottish Liberal Democrats conference this Saturday in Dunfermline, party member Emma Walker will present a motion about
Enrolling: Cornell Brain Imaging
Cornell Center for Enervating Neuroimmune Disease aims to collect brain images (MRSs) from individuals with ME to study oxidative
NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!
The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to
August 2018 — Research Roundup
August was a mixed month in the world of ME research, with some truly innovative studies coming out and
Enrolling: 23andMe Genetic Testing Study
The Institute of NeuroImmune Medicine is collecting genetic data from 23andme or ancestry.com for 10,000 patients. Their aim is
Advocacy Roundup – Holding Our Institutions Accountable
It has been a hot summer for many around the world, and another month of courage, resilience and bravery
The World Needs to See This: Living with Severe ME
Twenty-year-old, Linda, from Sweden shares her story about getting ME at the age of 4, living with a mild
Community News Roundup: Building a Network of Family, Friends and Allies for ME
It has been another active month in our community! A few major items to share: Family, Friends and Allies
Volunteer of the Month: A Healthy Ally
We are so thankful for the dedicated work that healthy ally, Shelley Krause, has given to the ME community.
Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!
PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal
Enrolling: Stanford School of Medicine Brain Tissue Bank
Brain tissue banks are able to provide ME researchers with samples to keep their research moving forward; Dr.
Announcing Launch of the #MEAction Young Researcher Fellowship
#MEAction is thrilled to announce that we are supporting the work of two research assistants working on myalgic encephalomyelitis
The Truth Behind Netflix’s "Afflicted"
This article was first published on Medium. We are some of the subjects of the recent Netflix docuseries, Afflicted. We
Do You Have MCAS? Fill Out this Survey.
If you have been diagnosed with mast cell activation syndrome (MCAS), please take a minute to fill out this anonymous
You Are Lovely.
Artwork by Elizabeth D’Angelo, who has severe ME. View, purchase and commission her artwork here. People can be infuriating.
Enrolling: Cornell Exercise Testing Study
Who: Cornell Center for Enervating Neuroimmune Disease What: The Center is collecting information from both ME patients and sedentary controls. You will
The heart of ME? Lipkin’s Collaborative Probes the Impact of Exertion
Simon McGrath is the author of the ME/CFS Research Review blog. The hallmark symptom of ME/CFS is post-exertional malaise
Calling all Family, Friends and Allies – Join the Movement to Support People with ME
You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or
The Microbiome Hypothesis: Lipkin’s Collaborative, Part 1
Author of the ME/CFS Research Review blog, Simon McGrath, has written an article about Dr W. Ian Lipkin’s theory that the
Netflix Docuseries "Afflicted" is Terrible
Read a response from some of the subjects of Afflicted: “The Truth Behind Netflix’s ‘Afflicted.’” We anxiously awaited the release
Watch Jen Brea's Powerful Award Speech from the 2018 NOW Conference
At the National Organization for Women (NOW) conference held this past July, #MEAction’s co-founder and voluntary executive director, Jennifer Brea,
July 2018 — Research Roundup
July was a big month for scientific research in ME! Many of the most well-known researchers and clinicians had
Amplifying the Voices of Seniors with ME – Join the Group!
By Moderator, Bob Gawron | Contributions by members, Linda Morganstern and Nancy K Wood Several months ago, I approached #MEAction
Enrolling: Bateman-Horne Center Biomarker Study
Help advance biomarker research! The Bateman-Horne Center is actively recruiting patients and healthy controls who are eager to participate by providing samples and information. This is then used in ME/CFS and FM research to discover biomarkers, improve diagnosis, and advance treatment.