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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
A petition for more biomedical research funding for ME/CFS that was started in January is only 2,000 signatures short
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.
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 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!