Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post, which can be found here. Intro My previous post contains my open letter to Francis Collins. It got a lot of readers. Many were from NIH. But who exactly at NIH is listening? I was hoping
The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit “Ask Me Anything” (AMA) Series on Friday, April 20 at 2pm EST. Genomics experts will answer questions at the Reddit Science community forum, “/r/Science“. A Reddit AMA is an opportunity to ask interesting individuals questions about anything and everything. This AMA
Activism doesn’t always have to take place in government offices or with signs and shouting; it can take place in quiet libraries. Library systems are the target of Cindy Downey’s efforts to make Jen Brea’s documentary Unrest accessible to all. Downey, of British Columbia’s Okanagan Valley, donated copies of Unrest to three provincial library
I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”
#MEAction is a global, grassroots network for people with Myalgic Encephalomyelitis based in Los Angeles. We’re seeking a summer intern passionate about medical education and science communications to support our efforts to bring new clinicians and researchers into this growing field. This internship is ideal for an undergraduate with an interest in science or medicine,
Looking for volunteers to launch our Neglected Chronic Illnesses Foundation – Pakistan’s Facebook page. This foundation will be the first to tackle MECFS in Pakistan and will serve as a charity and advocacy organisation – providing patients care; with a fully rounded approach.
What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of relaxing the criteria for “recovery” as the trial progressed? Researchers have just published a paper seeking to answer this question in a reanalysis of the PACE trial based on its original protocol. The authors concluded that
Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message that precedes it. We at #MEAction are pleased to reproduce both here. We, some of Bob’s many friends, have put together this tribute to him. We do not think it is appropriate to discuss the circumstances
Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!
On OMF’s End ME/CFS Worldwide Tour to the Netherlands and Italy will include a presentation from Linda Tannenbaum, OMF CEO/President and interactive Q&A. The Tour is sharing hope and raising awareness.
