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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.
Will the FDA Stand in the Way of Your ME Treatment? Take Action now!
Suppose there was a substance that could help you, but before you learned about it, or you could find
Honoring those with Severe ME on Aug. 8
Photo of the Caged Bird who writes about her experiences living with severe ME here. Today, August 8th, marks
Volunteer of the Month: A Builder of Community
We want to honor volunteer Holly L. this month for her dedication to building an engaged, informed community for
Do you use a wheelchair? A team of engineers needs your input.
The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about
#MEAction UK Activist Speaks at the International Deaf & Disabled People's Solidarity Summit
Article written by Sian Leary and Nathalie Wright | Photo credit: Paula Peters On 22nd July, Deaf and Disabled people
Learn how to Lobby Congress: Read our Toolkit
Since its inception three years ago, the #MEAction Congressional team has worked hard to build relationships with members of
CDC Revises Its Information on ME
Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments
NICE Guideline for ME: #MEAction UK Responds to Second Draft Scope
The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic
Building Allies for M.E. at Women’s Rights Conference
The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in
M.E. Takes Center Stage at the Women’s Health Empowerment Summit
This past May, the Women’s Health Empowerment Summit chose three patients to share testimonies about their illness and Myalgic
Learning about ME at the Dysautonomia Conference
#MEAction sent two representatives, Beth Mazur and Jaime Seltzer, to attend the 2018 Dysautonomia International Conference in Nashville last
Open Letter: 75 International Experts Urge Netherlands to Invest in Biomedical Research for ME
75 clinicians, scientists and other professionals explain to the Dutch Minister of Health what this diseas is, but also is NOT (not a pychological or psychosomatic disease), that there is no robust evidence for CBT/GET nor for the underlying hypothesis and that the only way to achieve much needed progress for patients is biomedical research
The NIH responds to #MEAction, Next Steps
Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all
Ron Davis Receives $2.5 Million Grant from NIH
Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from
Denmark has some recommendations for ME… and they're pretty awful
Article written by Rebecca Hansen, Chairman of the Danish ME Association The Danish Health Authority (SST) released their new treatment recommendations
Pastor Testifies About Wife's ME
Lutheran pastor, Stephen Friedrich, spoke about his wife’s struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC)
What next for the NICE guidelines?
Parliament Plays NICE #MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st
Volunteer of the Month: a Scottish Trio
This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav
Next steps: a letter to our community
Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of
#MEAction Board Member, Pam Laird, Celebrates Fundraising Success
I’ve been privileged to serve on the #MEAction Board these last three years. Though I’ve worked in Silicon Valley
NIH Director: Our Judge and Jury, Prison Guard and Executioner
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss
Mother Shares Heartbreaking Testimony about Sons with Severe ME
This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take
U.S. – Center for Solutions for ME/CFS Seeks Applicants for Community Advisory Committee
The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July