Dr. Zaher Nahle from the Solve ME/CFS Initiative recently interviewed Dr. Avi Nath, who is leading the intramural study on ME/CFS at the NIH. The intramural study on ME/CFS at the NIH has raised some concerns in the ME/CFS community: the appointment of Dr. Walitt, who has made statements implying that he views ME/CFS as
Last week, #MEAction had its first planning call for the May 25th #MillionsMissing protest. The protest, with the theme #MillionsMissing, brings attention to the millions of people with ME/CFS missing from their work, their families, and their lives, and the millions of dollars missing from research funding. To show this invisible illness, we are asking
Paige is a recent graduate from NC State University with a degree in biomedical engineering. She was diagnosed with POTS five years ago and has been inspired to make a difference for those living with chronic illness. Paige started a disability transportation service at her university and plans to use those collaborative skills as Deputy
Adriane Tillman is a writer, journalist, traveler, thinker, lover of art, dance and books. Adriane graduated with degrees in literature and Russian language. She worked as a newspaper journalist for five years, and now consults in marketing and copywriting. She has lived in many places across the US and beyond. She grew up in Cincinnati,
We would like to welcome Jaime to our team at #MEAction as our new managing editor. With an MS, a freelance writing career, and a current teaching position in organic chemistry at the graduate level, Jaime comes to us with a background in writing, education, and science. An active member of Phoenix Rising for over
At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy for tackling ME/CFS. He said it won’t be an easy task ‘else it would have been solved long ago’, and it wasn’t clear where the solution will come from. The NIH’s focus will be on attracting
Blogger Help us write news and opinion content for #MEAction and join a vibrant community of patient activists. Description: #MEAction’s volunteer bloggers develop their own stories and write content ideas suggested by the MEAction team. We are looking for folks who can write on any topics but are especially interested in covering science and policy. We
Community organizer Help us organize and expand the capacity of the ME community. Description: #MEAction’s community organizer is responsible for grassroots community building, outreach to volunteers, local #MEAction groups and ally organizations; and developing programs for patient education and empowerment. Skills: Strong interpersonal skills, team building skills, and ability to talk on phone a moderate amount. Knowledge
Editor Help us develop and coordinate a strategy for a more informed ME community. Description: #MEAction’s editor is responsible for writing content, developing new stories, editing and approving volunteer submissions, recruiting new writers, coordinating content flow, and implementing editorial standards and priorities Skills: Strong written and organizational skills. Knowledge of the ME community. Comfort with science
Open Medicine Foundation (OMF) End ME/CFS Project This is a game-changing initiative to find a cure for ME/CFS, a devastating and life-altering disease that affects more than 2.5 million people in the U.S. alone — Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This is the first time ever that leading world-class scientists will be putting their minds together
