Myalgic Encephalomyelitis 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.

Canada – open letter to gov't from family of #MillionsMissing

June 7, 2016 4 Comments

Name/Nom: William A. Downey, BA, BSW Province: BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four hundred thousand fellow Canadian citizens whose lives have been, and will continue to be, devastated by the well-known biomedical condition Myalgic Encephalomyelitis (ME); I write as a member of the additional hundreds of thousands of Canadian citizens who

#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

Tag: Myalgic Encephalomyelitis