Read the Latest in ME News and Campaigns
Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.
OMF's Triple Giving Tuesday is Coming Soon
Announcing the generous pledge of an OMF family to match donations 3 to 1 for Triple Giving Tuesday OMF.
OMF Strengthens Our International Ties
OMF begins translation program to strengthen international ties.
7 Reasons for Why It’s #TimeForUnrest
The #TimeForUnrest campaign has officially kicked off, and these are some of my reasons for for why it’s #TimeForUnrest.
1. People are dying.
Individual Community Symposium Talks Available on OMF YouTube Channel
Watch individual presentations and Q&A from the Community Symposium on the Molecular Basis of ME/CFS.
Breaking News: NIH Announces Results of ME/CFS Program Awards
The National Institutes of Health (NIH) announced today the outcome of its ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) competitive consortium grants, marking an unprecedented and tangible commitment from the federal agency to the disease. The NIH announced four recipient teams; one Data Management Coordination Center (DMCC) and three Collaborative Research Centers (CRCs).
NEW! Living w/ ME Support Group
Do you have ME and want to connect and share with others from around the world facing similar issues?
#MEAction Launches First New York Organizing Meeting
With the excitement and attention around the theatrical premiere of ‘Unrest’ in NYC this month now is the time
NIH announces centers for ME/CFS research
The NIH announced the grants for three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC) that will work
Parliament EDM 271 Urges NICE to Update Guideline on ME
UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This
#MEACTION REJECTS SMILE TRIAL OF THE LIGHTNING PROCESS FOR CHRONIC FATIGUE SYNDROME
FOR IMMEDIATE RELEASE: 21/09/17 CONTACT: [email protected] #MEAction Rejects the Findings of the SMILE Trial of The Lightning Process for Chronic
As Summer Ends, A Warning to NIH
Johanna Kaiser, a person with ME, sent this open letter over Labor Day to the director of the National Institutes of Health (NIH), Dr. Francis Collins, and the director of National Institute of Neurological Disorders (NINDS).
Tools to Help Children with ME/CFS Succeed
New resources are available to help parents and educators provide accommodations and resources to help children succeed in school.
First of its kind! Nevada delegation sends letter to NIH on ME/CFS
On September 8th, Nevada’s full Congressional Delegation sent a letter to Director Collins of the National Institutes of Health urging him to “strengthen and accelerate” its work on ME/CFS.
Senate Appropriations Committee Recommends Restoring ME/CFS Funding
On Sept. 7, the ME/CFS community breathed a sigh of relief as the Senate Appropriations Committee recommended restoring the $5.4 million Chronic Fatigue Syndrome program under the CDC.
Did you see ME/CFS on PBS?
A national, televised program on ME/CFS aired this month on the show, “The White House Chronicle,” with host Llewellyn King.
Keep building momentum in Parliament for NICE review
MP’s are urging NICE to review Guideline on ME
Finding Connection within M.E.
During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my current state of health.
LA LECTURA IMPORTA ¡VAMOS A OÍRLA!
La desaparición de mi capacidad de leer extensamente es una de mis mayores pérdidas. Lo intento, pero las páginas se petrifican. Ahora debo contentarme con unos pocos párrafos; algunos días con un par de líneas.
Hosting a Screening of Unrest? Learn How to Talk to the Press
If you are hosting a screening of Unrest in your community, you will want to reach out to your
Urge your MP to sign EDM 271!
We need your help for parliament to recognise the strength of feeling about NICE guideline review
Need Help Recovering from Hurricane Irma & Harvey?
Let us know if you need help recovering from Hurricanes Harvey & Irma. We are planning to share the
Invite Congress to experience UNREST film and VR!
#MEAction is teaming up with the Time for Unrest campaign and Solve ME/CFS Initiative to bring two new exciting
Why Society Shuns People with ME
Listen to the audio version recorded by Anna Ruddock @annalouruddock Cindy Downey wrote this editorial as a response to
Community Symposium Summaries Now Published
You can now read about the details in two published pieces.
End ME/CFS Worldwide Tour Continues
New tour dates announced: September 16 in Minneapolis and November 4 in Boston. Join us!
Explore the Science on ME
Leading scientists presented their research on ME/CFS at the day-long Community Symposium on the Molecular Basis of ME/CFS* at
Reading matters. Let's hear it!
The demise of my ability to read extensively is one of my greatest losses. I try, but pages petrify. A few paragraphs must do me now; some days a couple of lines. It’s an issue many #pwme wrestle with, and contributes to our sense of separation.
The Emotional Toll of Not Being Heard
This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.
How to Build a Protest
Learn from the success of the #MillionsMissing protests that galvanized dozens of cities around the world to take to
Transitioning from an Abled Life
When a sudden and unexpected illness catapulted my life into a completely different path, life as I had come to know it, was irrevocably changed.
Ron Davis Gets Standing Ovation
August 12 was an amazing day at OMF’s Community Symposium on the Molecular Basis of ME/CFS at Stanford University.
FITNET trial criticised in Behavioural Sciences journal
Severe ME patients publish paper questioning central findings of Dutch CBT/GET trial
3 Ways You Can Join in a #TimeforUnrest
Update: View a recording of the call here – https://www.youtube.com/watch?v=LQWgvK1UsdQ ————————— The September kickoff of the #TimeforUnrest campaign is just around the
We're upright in all but body!
#BedFest was quite the occasion. People appeared in PJ’s, crumpled t-shirts, crochet vests, keen to address the wider world; people whose voices are seldom heard, called together by #MEAction and its volunteers to share music, art, photography and multifarious creativity and raise ME-Awareness. We didn’t have to leave the house…
Scientists gather for ME/CFS symposium this Saturday: Watch online!
Influential scientific researchers in the ME/CFS community will come together this Saturday, Aug. 12 for a one-day community symposium
Support Severe ME Day: Join the Silence Challenge
August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe Myalgic Encephalomyelitis
Update on the NIH Research Funding totals from SMCI
The Solve ME/CFS Initiative is disappointed to report that the projected estimates for FY 17 are being reported at lower numbers than expected.
Tell Congress "Don't defund ME/CFS!"
Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC….again. Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we’ve made so far!
Speak Up, Tweet Back, Write ME: Activist Messaging 101 in the Social Media Age
UPDATE: A recording of this community call can be found here. Join us for our next activist teach-in with
THE PACE TRIAL: THE MAKING OF A MEDICAL SCANDAL
Journal of Health Psychology Special Issue on The PACE Trial, Vol. 22, No 9, Aug. 2017 Publication date: 31
#MEAction UK response to NICE 2017
#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National
NICE 2017 response
10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 Stakeholder consultation comments form
Jennie Spotila: NIH's management of conflict of interest
EDITOR’S NOTE: This reporting is written by Jennie Spotila Next week, the NIH will convene a peer review panel
Action for M.E announces research
UK charity Action for M.E has announced that they are funding two new research studies, totalling £42,000
Troubled by NICE guidelines? Three easy ways you can help
When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines
Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines
The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy
Trifecta for ME awareness in Knoxville, Tennessee
Trifecta in Knoxville, Tennessee In an example of Knoxville leading the way for Tennessee, Mayor Madeline Rogero and the
ACTIVIST TEACH IN: THINK GLOBAL ACT LOCAL (Sat. July 8)
The ME community can greatly benefit by adopting a local philosophy to activism.
Tuller on PACE Investigation Plans: Not Beholden to Anyone
#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his
Voices from Sacramento: Janet Dafoe and Ashley Haugen
Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son
Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I
One of my deeply held personal values is that ALL people must be treated respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a cover for my righteous indignation and outrage at the inhumanity of our community’s treatment” Carol Head
New York State Health Commissioner Sends Letter to Physicians about ME
On Friday, May 26th, New York State (NYS) Health Commissioner Dr. Howard Zucker emailed a letter regarding Myalgic Encephalomyelitis
Thank Senator Markey for Sponsoring the Congressional ME Briefing
Back in February 2017, Senator Ed Markey (D-MA) publicly announced at a packed town hall meeting that he would
City Proclamation for ME: How-To Guide and Case Study
Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME