Tag: MECFS

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 of preparing can be described as grueling for anyone, much less for someone with ME: Brea had spent weeks writing and fact-checking the talk with a committee from TED, and now had to keep her focus

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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!

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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 for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future Research on ME/CFS Treatments

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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. We came out in force: in Boston, Dallas, San Francisco, Seattle, Washington D.C., Raleigh, and Atlanta; in London; in Melbourne; in a Canada-wide virtual protest; in Bergen, Norway; and in Belfast, Northern Ireland.  Impromptu shoe displays

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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.

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$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.

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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. The University of North Carolina School of Medicine is ranked second in primary care in the 2017 U.S. News and World Report. Kurt Gilliland, PhD, is its assistant director of curriculum and evaluation.  When interviewed, he

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#MillionsMissing Meets With Government Officials

In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands:  better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker

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