MECFS Archives

Lift Your Voice, Share Your Story – BHC Patient Voice

July 4, 2016 No Comments

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!

Introducing the Bateman Horne Center Online Patient Library

June 22, 2016 1 Comment

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

June 21, 2016 1 Comment

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

Join the #MillionsMissing this Sept — Bigger. Louder. Stronger.

June 21, 2016 5 Comments

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

N. Ireland: Chasing Competent Care and #MillionsMissing protest

June 20, 2016 2 Comments

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.

$3.28 Million Awarded for ME/CFS Biomarker Study

June 12, 2016 2 Comments

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.

Norway: Attend #MillionsMissing Shoe Exhibition, Performance, and Virtual Protest Tomorrow!

June 9, 2016 No Comments

#MillionsMissingBergen is a virtual demonstration to highlight the thousands of Norwegians sick and missing from society, and millions all over the globe. The #MillionsMissing protest in Norway has grown! Protesters will be displaying shoes from 2pm-4pm in central Bergen (Festplassen), after which the shoes will be moved to be an art installation at Gallery 3,14.

Top Medical Schools Teach Little about ME/CFS

June 8, 2016 8 Comments

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

#MillionsMissing Meets With Government Officials

June 6, 2016 5 Comments

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

Respond to the NIH's Request for Information

June 6, 2016 3 Comments

On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). An RFI, or Request for Information is “critical for identification and consideration of research areas and topics to be included in future efforts.” The Trans-NIH ME/CFS Working Group

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