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Medical Textbooks Earn a Failing Grade in ME/CFS – 1 of 2
Part II in our series on medical education and ME Note: This is a two-part article in our series
Hold a Forgotten Plague Screening!
Forgotten Plague, a documentary that a journalist at The Huffington Post called “a must-see documentary” is now available through
Attend the MEpedia online meet-up this Thursday!
What can you do for ME activism today? Many patients, caregivers, physicians and educators would like to contribute to
Jennifer Brea gives rallying TED Talk
On June 27, Jennifer Brea, #MEAction co-founder, filmmaker, TED Fellow, readied herself to speak in Banff, Canada at TEDSummit 2016. The process
Lift Your Voice, Share Your Story – BHC Patient Voice
Patient Voice – a special place online for members of our community to share their stories, art poetry, photography and music. We highlight the strength, joy, humor and beauty that can be found in a life changed by ME/CFS. Our goal is to lift your voice a little higher and help your story be heard loud and clear. Topic for June/July : “Tell us about a time when someone showed you unexpected kindness and it had a positive impact on you as you manage your chronic illness” Make Your Submission!
Join #MEAction's three 3 protest and policy meetings
Calling all ME activists, allies and advocates. #MEAction is gearing up for some major actions that need your input.
Ask NIH to fund an Ampligen Trial Today!
Join our response to the NIH Request for Information: we seek NIH funding for ME/CFS clinical trials starting with Ampligen as the closest medication to approval for our disease.
Introducing the Bateman Horne Center Online Patient Library
A collection of publications, videos, posts and links to other online resources helpful to those living with ME/CFS and Fibromyalgia.
Listen to Jarred Younger's CDC conference call this Thursday
The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls
Join the #MillionsMissing this Sept — Bigger. Louder. Stronger.
On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS.
N. Ireland: Chasing Competent Care and #MillionsMissing protest
Hope 4 ME & Fibro Northern Ireland ran an ambitious and exciting conference on Monday 6th June in The Stormont Hotel, Belfast. The conference, “Chasing Competent Care” delivered a strong message calling for change to the currently inadequate care situation for ME and fibromyalgia patients in Northern Ireland.
Take the #MEAction NIH research priorities survey!
Recently, the US National Institutes of Health (NIH) put out an RFI – a ‘request for information’ – asking
New ME/CFS Book: Lighting Up a Hidden World
This month, Valerie Free’s new book, Lighting Up a Hidden World: CFS and ME will be released to the
Donate to the Bateman Horne Center Capacity Campaign – Wings to Fly!
The Bateman Horne Center (BHC) – uniquely positioned to create collaborations between amazing, well-qualified patients and stellar research partners – has an urgent need to increase capacity in order to see patients and grow the research program. Investigators are seeking access to our patient population more and more, yet due to physical and personnel capacity restrictions, too many patients are on waiting list, medical assistants and research associates are doubled up in offices; there is no more room for the equipment needed to expand our research efforts. We have secured a new, larger facility but require the funding needed to expand our critical work. Every gift, of any size, is an investment in real progress.
$3.28 Million Awarded for ME/CFS Biomarker Study
Bateman Horne Center leadership, Drs. Bateman and Vernon, are Co-Investigators with Professor Derya Unutmaz, M.D. on this cutting-edge, 5 year immunogenomic study of ME/CFS that seeks to to develop robust, quantitative immune-biomarker sets for predicting disease susceptibility, stratifying patients and guiding treatment strategies.
Vote for the Blue Ribbon Foundation to win a $50,000 Grant!
“Simply by spurring a conversation across the community, I see this as a win.”
Announcing the Winners of #MEAction's Poetry Contest!
#MEAction is pleased to announce the winners of the 2016 #MillionsMissing Poetry Contest. We were astounded by the number
Apply for NIH grants for early-stage investigators of ME/CFS
Yesterday, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) announced that the NIH awarded them a R13 conference
Jen Brea to give TED talk on June 27!
Documentary maker and #MEAction founder Jen Brea will give a talk at the prestigious, five-day TED summit in Banff,
Norway: Attend #MillionsMissing Shoe Exhibition, Performance, and Virtual Protest Tomorrow!
#MillionsMissingBergen is a virtual demonstration to highlight the thousands of Norwegians sick and missing from society, and millions all
Top Medical Schools Teach Little about ME/CFS
Based on information from four medical schools, medical schools rarely address ME/CFS in basic instruction or as case studies.
Canada – open letter to gov't from family of #MillionsMissing
Name/Nom: William A. Downey, BA, BSW Province: BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four
#MillionsMissing Meets With Government Officials
In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands: better
Respond to the NIH's Request for Information
On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New
Belfast: Make your voice heard at tomorrow's #MillionsMissing Protest!
What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part
Ron Davis: Preliminary data shows problems with energy metabolism
Professor Ron Davis presented new findings from his Big Data study at Friday’s Invest in ME 2016 conference. Davis’s
Davis at Invest in ME: New Severe Patients Data
Invest in ME’s 2016 international research conference in London ended on Friday with a talk by Professor Ron Davis
80th “Science to Patients” ME/CFS interview on YouTube
The Dutch ME/CFS Association (ME/CVS Vereniging) has posted the 80th in its video interview series, “Science to Patients” (“Wetenschap
Speeches from the Front Lines of #MillionsMissing: Sonya
Sonya Myalgic Encephalomyelitis (ME) Patient 5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript In April of 2011, I was thriving
Scientists write open letter to PLoS One
Five professors of science and mathematics, including Professor Ron Davis of Stanford University, have written to PLoS One demanding
Speeches from the front lines of #MillionsMissing: Carol Head
I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum. Our organization conducts innovative research to
#MillionsMissing in the News
The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by
Speeches from the front lines of #MillionsMissing: L.A. Cooper
Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change
Support the #MillionsMissing in Belfast and Bergen
Belfast, Ireland and Bergen, Norway will be joining their voices to the #MillionsMissing protest this June. In Belfast, shoes
Speeches from the front lines of #MillionsMissing: Ryan Prior
My name is Ryan Prior. I’m a filmmaker and a journalist and an entrepreneur from Atlanta, and I’ve come
2016 ME/CFS conference season opens
The Invest in ME conference in London on Friday, 3 June is the first of three major ME/CFS conferences
Speeches from the Front Lines of #MillionsMissing: Jennifer Brea
#MEAction co-founder Jennifer Brea at the #MillionsMissing protest in Washington, DC, May 25, 2016 “Okay awesome. Wow this is
Whittemore presents ME/CFS proposal to NIH, May 26, 2016
Chairman: For open session, this is a concept clearance, and just to remind you, normally we’re expected to spend our
#MillionsMissing Protest in 12 Locations all Over the World
On Wednesday, May 25, ME/CFS patients, caregivers and advocates in nine cities around the world gathered for a global
Speeches from the Front Lines of #MillionsMissing: Terri Wilder
My name is Terri Wilder and I’m a person living with ME. I was only diagnosed with ME about
Speeches from the Front Lines of #MillionsMissing: Ron Davis
I’m Ron Davis and my son is missing… Linda Tannenbaum has really helped us a lot in raising funding.
Videocast of Trans-NIH group’s ME/CFS proposals at 2pm today
The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the
Six ways you can take action today!
1) PUT YOUR SHOES OUT Put your shoes out on your front step, at the end of your driveway,
UK: sign the petition close to forcing government response
A petition for more biomedical research funding for ME/CFS that was started in January is only 2,000 signatures short
Act now! Our #MillionsMissing Round-Up
Hello, everyone! It’s only three days until the #MillionsMissing protest, so it’s time to review what’s gone on so
CFS Advisory Committee Meets
The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.
Swedish Government “no interest at all” in ME/CFS
A Swedish ME/CFS charity has slammed the attitude of the country’s government towards the disease. In an interview with
Donate to Columbia's Center for Infection and Immunity
The Center for Infection and Immunity (CII) at the Mailman School of Public Health in New York is internationally recognized as the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis. Dr. Lipkin and Dr. Hornig and the CII team are thoroughly on the case of ME/CFS but they need our community support.
AIDS activist with ME speaks at CFSAC
An AIDS activist and member of ACT UP/NY who has been newly diagnosed with ME has criticized US government
A personal appeal by Holly L.
Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture.
#MillionsMissing Global Protest coming to Melbourne
Melbourne’s #MillionsMissing event is on 25 May from 12-2pm on the lawns of Melbourne’s State Library of Victoria, Australia. Part of the globlal protest movement!
Dr Hornig’s talk in Sweden now available
Dr Hornig went into more depth about their published cytokine work, as well as what they are working on and trying to achieve. The talk was jam-packed with great science and information. Dr Hornig talks about the crisis in funding, looking at gene expression and gene variants, screening for up to 1.7 million vertebrate viruses, metabolomics, looking at how the immune system and the microbiome could affect metabolism and the brain – and much, much more!
Donate to Marathon Runner to Support Invest in ME
I’m running my sixth EU marathon in Stockholm, Sweden on June 4th for biomedical ME research projects via Invest
UK plans world’s biggest biomedical ME/CFS study
Biomedical scientists from a range of disciplines met for a two-day workshop in Bristol on 13 and 14 April to