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Global: RSVP for #MillionsMissing around the world!
Want to get involved, but aren’t sure how to proceed? Here is a living document you can use to
Quick Update: #MillionsMissing Meeting with Dr. DeSalvo
Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting
SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding
On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.
Give your feedback on the #MEAction USA protest demands!
Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community
Blue Ribbon Foundation: An interview with Ryan Prior
Ryan Prior first made waves with his article in USA Today about his experience with ME/CFS that was shared
Watch Free Livestream – Tools for Managing ME/CFS
Wednesday, August 3rd, 7pm Mountain – Free Livestream. Lucinda Bateman MD, Founder and Chief Medical Officer of the Bateman Horne Center, will present methods used at the BHC to partner with patients and help them achieve the best possible function and symptom reduction.
#MillionsMissing US Protesters to Meet With DeSalvo at HHS
A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services
In Memory of Tom Jarrett
I met Tom Jarrett once, and I remember him through an empty chair.
Our losses in the ME community
It’s been a devastating summer for the ME community. We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and
ME in Poland: Help me raise awareness & funding all across the EU
Hi, I’m Mike Harley from the UK, and for the last 18 months I’ve been raising awareness and funds
Introducing Blue Ribbon Fellow: Kristina Gemayel
The Blue Ribbon Foundation, the non-profit behind the documentary Forgotten Plague, has an educational and research agenda. In addition to
Introducing the Seed Grant Ramsay Award Program
The Solve ME/CFS Initiative (SMCI) is now accepting applications for the Ramsay Award Program in basic, preclinical, clinical, and epidemiology research. This competitive grant award is open to scientists and researchers at any career stage who are interested in studying myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).
#MEAction Policy Change: ME, not ME/CFS
The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list,
US: Attend the #MillionsMissing USA call this Sunday!
This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize,
Contribute clips to L.A.'s #MillionsMissing Video
Last October, I released the short documentary The Last Great Medical Cover Up to a widely receptive audience. Now,
Medical Textbooks Earn a Failing Grade in ME/CFS – 2 of 2
Note: This is a two-part article in our series on education in ME/CFS. Part 1 covered UpToDate, the University
2016 Invest in ME Conference write-up on PR
Phoenix Rising’s Mark Berry was at the recent Invest in ME conference and has written an excellent report: A
Send Dr. Ron Davis a 75th birthday message!
The Open Medicine Foundation (OMF) is inviting patients and supporters to send Dr. Ron Davis a message for his
Solve ME/CFS Initiative Update
Last year was a pivotal point in the battle against ME/CFS. Game-changing reports from the Institute of Medicine and the National Institutes of Health’s Pathways to Prevention Workshop delivered long awaited public credibility for our disease. The federal ME/CFS landscape has shifted, and there is newfound openness and awareness among key governmental agencies. This positive change has heightened the battle as we fight for scientific understanding, fight for treatments and fight for a cure.
The alchemy of turning frustration into power
when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country!
New research: gut microbes identify 83% of patients
Signs of bacterial infection and inflammation Recently, a team of researchers led by Ludovic Giloteaux of Cornell University measured
Tuller slams “terrible” PACE in podcast
Dr. David Tuller has provided an overview and update of his work criticizing the PACE trial in a podcast
Advocates and scientists respond to NIH’s Request for Information
Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request
QMUL spend £250,000 on PACE data tribunal
Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal
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