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This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize,
Note: This is a two-part article in our series on education in ME/CFS. Part 1 covered UpToDate, the University
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.
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!
Signs of bacterial infection and inflammation Recently, a team of researchers led by Ludovic Giloteaux of Cornell University measured
Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request
Part II in our series on medical education and ME Note: This is a two-part article in our series
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!
Calling all ME activists, allies and advocates. #MEAction is gearing up for some major actions that need your input.
A collection of publications, videos, posts and links to other online resources helpful to those living with ME/CFS and Fibromyalgia.
The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls
On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS.
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.
Recently, the US National Institutes of Health (NIH) put out an RFI – a ‘request for information’ – asking
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.
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.
“Simply by spurring a conversation across the community, I see this as a win.”
#MEAction is pleased to announce the winners of the 2016 #MillionsMissing Poetry Contest. We were astounded by the number
Yesterday, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) announced that the NIH awarded them a R13 conference
#MillionsMissingBergen is a virtual demonstration to highlight the thousands of Norwegians sick and missing from society, and millions all
Name/Nom: William A. Downey, BA, BSW Province: BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four
What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part
Professor Ron Davis presented new findings from his Big Data study at Friday’s Invest in ME 2016 conference. Davis’s
The Dutch ME/CFS Association (ME/CVS Vereniging) has posted the 80th in its video interview series, “Science to Patients” (“Wetenschap
Sonya Myalgic Encephalomyelitis (ME) Patient 5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript In April of 2011, I was thriving
I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum. Our organization conducts innovative research to
Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change
Belfast, Ireland and Bergen, Norway will be joining their voices to the #MillionsMissing protest this June. In Belfast, shoes
My name is Ryan Prior. I’m a filmmaker and a journalist and an entrepreneur from Atlanta, and I’ve come
#MEAction co-founder Jennifer Brea at the #MillionsMissing protest in Washington, DC, May 25, 2016 “Okay awesome. Wow this is
Chairman: For open session, this is a concept clearance, and just to remind you, normally we’re expected to spend our
On Wednesday, May 25, ME/CFS patients, caregivers and advocates in nine cities around the world gathered for a global
My name is Terri Wilder and I’m a person living with ME. I was only diagnosed with ME about
I’m Ron Davis and my son is missing… Linda Tannenbaum has really helped us a lot in raising funding.
The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the