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U.S. Votes to Track ME/CFS on BRFSS Survey
Back in March, we urged you to take action and inform your state health officials and departments to begin tracking
Thousands sign letter to be delivered to Francis Collins
On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We
Victory for #MEAction NY Activists: State Publishes Webpage about ME
The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its
It’s Not “All in My Head”: Living with a Misdiagnosed Disability Five Years on. Volume Three
Read Volume One and Volume Two. Day #5 cont’d. My partner and I hit a point of exhaustion. From
Open Medicine Foundation Announces Harvard Collaborative Research Center
Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under
It's Not "All in My Head": Living with a Misdiagnosed Disability Five Years on. Volume Two
“…What literally did not kill me has only made me stronger because giving up was not an option.”
Who is advising the Australian government on ME and CFS research and treatment guidelines?
Australian research is underfunded and the government’s clinical guidelines are outdated so the Australian government’s ME and CFS advisory committee is welcomed. It provides an important opportunity to call on the government to fund biomedical research and to give Australian doctors desperately needed clinical guidance. However, there are mixed perspectives on the committee.
The NIH Plan for ME is Dismal
Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and
Calling all Patients: Fill Out the Research Survey about PEM
DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional
Just Invisible: Medical Access Issues for Homebound/Bedridden People
Australian Ricky Buchanan has written a much-needed report about the issues facing bedbound and homebound people in getting access to medical care.
Inquest Rules Merryn Crofts Died Due to Severe ME
An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic
UK Call to Action: Ask Your MP To Sign EDM 1247!
If you are in the UK, please email your MP asking them to sign Early Day Motion 1247.
U.S. Congress Introduces Resolution for ME
Yesterday, the U.S. Congress introduced a resolution in the Senate to show support for research and medical education for Myalgic Encephalomyelitis (ME).
The Global Impact of #MillionsMissing
The impact of #MillionsMissing 2018 was phenomenal. Protestors took to the streets in 100 countries across the world with
It's not "all in your head": Living with a misdiagnosed disability five years on. Volume One
Sharing a rare but intimate glimpse of life living with a disability, coping with new diagnosis and healing from the damage of old diagnosis.
Sign MEAction's Letter to Francis Collins
Signatures for this letter are now closed. We are planning to deliver it soon and will keep the community
Australian Parliament Recognises Urgent Need for Biomedical Research for ME
The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field, passing a motion in the Senate to mark International ME and CFS Awareness Day.
How to Protest Virtually with the #MillionsMissing on May 12th
Join the protest from your home. Here are several ways to take action.
OMF shares a Patient’s Reflection on UNREST
This anonymous patient was truly moved by viewing Unrest and is sharing this personal reflection to encourage action.
Sign the Scottish Petition for ME – anyone can sign
Please support our petition! #MEAction Scotland volunteers have submitted a petition to the Scottish Parliament. Anyone from
Why we’re Targeting the NIH for #MillionsMissing
The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious
The Power of the Shoe
Shoes have been a powerful, unifying symbol for #MillionsMissing since the first global protest in 2016. Demonstrations
OMF: A look back on 2017 Highlights
OMF presents a look back on their 2017 highlights in research, outreach, advocacy, recognition, and more.
A song for ME: Blowin’ in the Wind
The following arrangement of Blowin’ in the Wind, with alternative lyrics about the struggles faced by people
NIH reply to my open letter (and a legal question from a peasant)
Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post,
Action Alert: Ask Francis Collins Anything this Friday at 2pm EST
The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit “Ask Me Anything” (AMA) Series
Sharing UNREST through Library Donations
Activism doesn’t always have to take place in government offices or with signs and shouting; it can take
A Tribute to Mag Friel
I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”
Activism Update from NY – Reaching Out to LGBTQ Community
Photo from The Center’s 1994 Gay Pride March on the U.N. Recently, ME activists have been reaching out
Join the #MillionsMissing – from your bed, your home, a local park
#MillionsMissing is fast approaching on May 12th, and we are thrilled to see cities across the world
Internship Opportunity: Medical Outreach and Science Communications
#MEAction is a global, grassroots network for people with Myalgic Encephalomyelitis based in Los Angeles. We’re seeking a summer
Chronic Illness Foundation Launches in Pakistan – Call for Support
Looking for volunteers to launch our Neglected Chronic Illnesses Foundation – Pakistan’s Facebook page. This foundation will be the first to tackle MECFS in Pakistan and will serve as a charity and advocacy organisation – providing patients care; with a fully rounded approach.
#MEAction Volunteer of the Month: Congressional Advocate
The success of #MEAction – to achieve health equity for people with myalgic encephalomyelitis – is in
CFS Advisory Committee Seeks Voting Members
The U.S. Chronic Fatigue Advisory Committee (CFSAC) is looking to fill six vacant positions as voting members: One
Reanalysis of PACE Trial Shows GET and CBT are Ineffective
What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of
Dutch Health Council Downgrades GET for ME/CFS
Author: Dutch Citizens’ Initiative “Recognize ME” (Group ME-TheHague). In the release of its much-anticipated report, the Dutch Health Council
Join SMCI on Capitol Hill for ME/CFS Advocacy Day
The Solve ME/CFS Initiative’s second annual ME/CFS Advocacy Day is May 15th in Washington, D.C. Registration is recommended by April 1st.
Ten Percent of U.S. House Representatives Show Support for ME
Yes, you read right! Thanks to the incredible community outreach over the course of just a few days, TEN
A tribute to ‘Bob’ – Robert Courtney, ME activist, fundraiser, researcher, and friend
Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message
Call-to-Action: Urge your State Health Department to Track ME!
Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!
Join our Support Group for Caregivers
Are you a caregiver (spouse, partner, sibling, parent) of someone with Myalgic Encephalomyelitis? Are you looking for a community
OMF's End ME/CFS Worldwide Tour Announces Visits to The Netherlands and Italy
On OMF’s End ME/CFS Worldwide Tour to the Netherlands and Italy will include a presentation from Linda Tannenbaum, OMF CEO/President and interactive Q&A. The Tour is sharing hope and raising awareness.
OMF to Attend First ME/CFS Conference in Montreal
“Advancing an International Research Agenda to Address ME/CFS Research Priorities,” the first International Canadian Conference on ME/CFS will be held May 3 – 5, 2018. Ronald W. Davis, PhD, OMF SAB Director and Linda Tannenbaum, OMF CEO/President will be presenting.
Ron Davis to speak at Biomedical Research into ME Colloquium and IIMEC13 in London
Ronald W. Davis, PhD will be a speaker at both the Biomedical Research into ME Colloquium on May 30-31, 2018 and Invest in ME Research International ME Conference (IIMEC13) on June 1, 2018 in London.
Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS
URGENT Congressional Action! Please take this opportunity to call and email your House representative today to request they sign
The First Draft of the Common Data Elements for ME/CFS is Ready for Review
The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National
Jackson Laboratory ME/CFS Center Starts Blog to Connect with Patients
The main goal of the JAX CRC project is to understand how the immune system, microbiome, and metabolome are connected and disrupted in ME/CFS, and to discover the biological basis of this chronic disease. We are hopeful that the knowledge gained from these studies will help to develop molecular markers for the diagnosis of ME/CFS, and the development of new treatments based on these new targets discovered.
Activism 101: Educate Medical Providers about ME
Most doctors, nurses and other healthcare providers belong to a medical association in order to connect to a community
Petition to support Dr Myhill’s complaint to the GMC
As was previously reported by #MEAction, Dr Sarah Myhill has made a formal complaint to the General Medical Council
#TimeForUnrest Joins #MEAction
We’re thrilled to embark on this next phase by bringing the campaign home, under the umbrella of #MEAction. This will allow us to deepen our efforts around four core areas work: public engagement & education; patient support & community organizing; advocacy; and medical & scientific outreach.
Westminster Hall Debate on the PACE trial and its effects on people with ME
Westminster Hall Debate on the PACE trial and its effects on people with ME: an analysis of the response
#MEAction receives $50K donation from Pineapple Fund
#MEAction is thrilled to announce that it has received a $50,000 donation from the Pineapple Fund, an anonymous donor who
PACE Trial 'medical scandal' Sparks UK Parliament Debate
Members of Parliament heard about the flaws of the PACE Trial – and its devastating effects on people with Myalgic Encephalomyelitis (ME) – in a Westminster Hall debate today. Twenty-six MPs attended the debate.