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Comment on Australia’s National Draft Report on ME/CFS – Open to Global Feedback
Australia’s NHMRC has released the ME/CFS Advisory Committee’s draft report for public consultation. The public consultation process will remain open until Monday February 18, 2019.
How Does ME Research Fare? Check Out these Piecharts.
Research scientist, Dr Mark Guthridge, PhD, from Melbourne Australia created this piechart to show that of these 13 diseases,
Enrolling: NIH Focus Group on PEM
Overview The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be
Apply for Stanford Medicine X Conference as ePatient or Presenter – deadline Jan. 31st
Stanford University hosts an annual academic conference, Medicine X, every September to bring together community stakeholders, innovators and leaders
Study Shows that Red Blood Cells are Stiffer in People with ME
Listen to the article: Researchers have published a paper that shows various measures of deformability in the
2018 ME/CFS Research Summary
Commissioned and originally published by the Solve ME/CFS Initiative. Be sure to check out their interactive guide here. Follow
A Year in Review: Celebrating the 2018 Achievements of Our Community
2018 has been a big year at #MEAction! Thank you to all of you who have put forth immense
#MEAction Responds to NIH
As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes
NEED HELP? Support and Crisis Resources
NEED HELP? Support and Crisis Resources Living with ME can be extremely difficult. #MEAction strives to create spaces of support.
Give in Someone's Honor
This holiday season, give the gift of support and love through a donation to #MEAction. Your donations go to
Advocacy Round-Up: End-of-Year, 2018
Our community’s advocacy work end with a big finale with our meeting with the director of the U.S. National
Community Roundup – End-Of-Year, 2018
As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a
Volunteer of the Month – A Source of Inspiration and Wisdom
Jenny Horner is another stalwart advocate in the myalgic encephalomyelitis (ME) community who inspires us to dig deeper and
Join our #MEAction UK & #MEAction Scotland social media teams!
#MEAction UK and #MEAction Scotland are recruiting new volunteers to join our social media teams. We are looking for
Celebrating the 2018 Successes of Our U.S. State and Local Advocacy Groups
As the year comes to a close and we look over all that we have accomplished, we know that
Post-interferon fatigue study: a mixed bag
A study scheduled for our December research roundup entered the limelight yesterday due to an SMC campaign in the UK.
Holiday Win: 42 Members of Congress Sign on to Support People with ME/CFS
Thanks to another strong turnout from the ME/CFS community, 14 Senators and 28 Congressional Representatives joined together to
Become a Social Media Ambassador for #MEAction!
We are so excited to announce a new volunteer program at #MEAction! We will now have social media ambassadors!
Holiday Shopping: Buy from artists, crafters and authors with ME
The holidays are upon us! As you go about shopping for family and friends – or making gift suggestions
#MEAction met with NIH Director – here's what happened
#MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis
Dec. 2018 FFAME Minutes: Advocating for ME while Maintaining Privacy
MINUTES: Friends, Family and Allies for ME (FFAME) meeting: Saturday, December 1 Primary Discussion Topic: Advocating for ME while
Journal Publishes Article about ME Biobank
Frontiers in Neurology, an open-access journal, published an article about the UK ME/CFS Biobank this week. This narrative paper
#MEAction Seniors Release their Bill of Rights
Listen to the Article: Written by Nancy K Wood / Edited by Eileen Rosenbloom and Marcie Atkinson December
Australian MP Introduces Petition for ME in Parliament
Australian Greens MP, Adam Bandt, formally tabled a petition for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in Parliament on Dec.
All I want for Christmas is #ScienceNotStigma
This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National
Contact your CONGRESSIONAL REPRESENTATIVES now!
***UPDATE: THIS ACTION IS NOW OVER*** Please contact your MEMBERS OF CONGRESS IMMEDIATELY and urge them to sign
Ruins: An ME Senior's Perspective
By Eileen Rosenbloom You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches
Study Shows Red Blood Cells Less Deformable in ME Patients – Possible Biomarker
Written by Ronald W. Davis, PhD This paper documents that red blood cells are less deformable in ME/CFS patients
NIH's Dismissive Response to Mary Gelpi's 50K Petition
Last month, Mary Gelpi sent a petition with more than 50,000 signatures to the director of the U.S. National Institutes
Study Examines Link between Immune Dysfunction and Metabolism in ME
This article was first published on ME Australia. An international collaboration of scientists, including Fane Mensah, Jo Cambridge and
Values and Policies Process Announcement
Values and Policies Process Announcement A few months ago, #MEAction Executive Director Jennifer Brea released an open letter, outlining the
Research: supporting advocacy orgs yields huge payoffs
This Giving Tuesday, I’ve got some good science to show why you should donate to #MEAction and other advocacy
A Poet Contextualizes Our Struggle
Poet and artist, Christiana Baltais, writes about moving the mountains of stigma that harm people with myalgic encephalomyelitis (ME)
Community Roundup – Telling Our Story to the World
Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME).
Volunteer of the Month – the Woman Behind the Per Fink Protest
We are thrilled to honor Terri Wilder as our fall Volunteer of the Month. Terri spearheaded the protest and
Suomalaisen Äidin Kertomus
Suomalaiset ME/CFS-potilaat tarvitsevat apuasi. Allekirjoitathan vetoomuksen! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Allekirjoita vetoomus!” ] Editorilta: Klikkaa tätä lukeaksesi englanninkielinen versio artikkelista.
Advocacy Round-up – A Season of Protest and Petition
The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting
The Story of a Finnish Mother
People with ME/CFS in Finland need your help. Please sign their petition! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Sign the petition” ]
Donate on #GivingTuesday
Donating on #GivingTuesday helps #MEAction get ready for the new year, with all there is to come! We have
Sept & Oct — Research Roundup
The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract,
Scotland: Review Treatment of People with ME Petition
On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various
Ten Organizations Ask Congress to Create Legislation for ME/CFS
On Friday, November 2nd, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our
Alphabet Soup: Read the Latest about our U.S. Health Agencies and M.E.
There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies
Enrolling: Online Pediatric Research Survey
As there is currently limited research on pediatric ME/CFS, the purpose of the study is to improve our understanding
Stop the FDA from Banning Compounded Medications that Help People with ME – Take Action!
For the past 35 years the FDA has neglected to bring meaningful treatments to market for people with Myalgic
NICE Appoints Committee Rife with Bias – Take Action!
What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health
UK: MPs fight for a crucial parliamentary debate on ME
Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October
Honoring Our Elite Seniors: 70+
We are a group of people over the age of 55 with ME. In August, Bob Gawron wrote our
Australia: National TV Program Debates ME/CFS, Raises Ire of Community
Australia: An hour-long, nationally televised discussion panel on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) on Oct. 16 has
UPDATE: Cochrane Has NOT Removed "Exercise Therapy for CFS" Review
It appears that Cochrane will NOT temporarily remove a review from its database that claims exercise therapy is effective for
#MEAction Scotland launch their Manifesto
After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank
Mary Gelpi Sends 50K Petition to NIH Director, Francis Collins
Mary Gelpi first published this post on her blog, 25 Pills a Day. Mary launched a petition asking the
Cochrane Temporarily Removes Review of "Exercise Therapy for CFS"
Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome
The final NICE scope is here: read our analysis
N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some