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
This month, Valerie Free’s new book, Lighting Up a Hidden World: CFS and ME will be released to the public. In 1990, Valerie Free was a vibrant, thirty-year-old woman: a court stenographer, wife, and mother. In July of that year, she came down with a sudden, flu-like illness and after months of unrelenting and bizarre
Yesterday, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) announced that the NIH awarded them a R13 conference grant by the National Institutes of Health for their international conference in Fort Lauderdale, Florida, October 27 – 30, 2016. The grant will fund conference registration, travel and hotel expenses for up to 10 early stage
#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.
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
What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part of a campaign to improve medical care for the thousands of ME and fibromyalgia patients in Northern Ireland. The conference will be tomorrow, Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards
Sonya Myalgic Encephalomyelitis (ME) Patient 5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript In April of 2011, I was thriving and loving life. At the peak of my career, working my dream job in the U.S. Foreign Service, only 39 years old but already the equivalent of a Colonel in the military, I was successful, healthy,
Five professors of science and mathematics, including Professor Ron Davis of Stanford University, have written to PLoS One demanding the correction of an “inaccurate claim” central to a PACE trial paper on cost-effectiveness that was published in the journal in 2012. Referring to a series of articles by Dr. David Tuller criticizing the PACE trial,
I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum. Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers. Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are
The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by Rivka Solomon that was first picked up by STAT, a national publication, and then by Business Insider and The Week. London’s protest was covered by The Evening Standard; and several local radio programs, including BBC Bristol,
