We are a group of patients and advocates who volunteer our time to raise awareness for Myalgic Encephalomyelitis. Due to the severity of our illness, our activities, writings and meetings take place from our homes and beds.
Our current focus is to raise awareness to ask Congress to increase funding into research for severe ME patients, use the term Myalgic Encephalomyelitis (instead of CFS) along with more accurate criteria that is recommended and supported by ME experts, advocates, and patients.
We have been challenged by Brenda Hankins, one of the founders of The Chilli M.E. Challenge. The goal of the challenge is to raise awareness for neglected ME patients and raise donations for ME/CFS biomedical research. Here is our video where 6 advocacy members ate chillies or hot sauce for ME: https://youtu.be/7r8hwaHSTak
We are doing this challenge in memory of ME patient and outspoken advocate Thomas Hennessy Jr., who founded ME International Awareness Day, and ME patient Vanessa Yeuk Lin Li whose battle with ME ended this year at the young age of 34. She spearheaded the crowd fund effort for Dr. Ian Lipkin ME/CFS The Microbe Discovery Project. Dr. Ian Lipkin and Dr. Mady Hornig honor Vanessa in this letter.
We, as an organization, are challenging: 1) Morgan Fairchild [@morgfair], 2) Erica Verillo [CFS Treatment Guide Blog], 3) Mary Schweitzer [Slightly Alive Blog], 4) Lisa Petrison [Executive Director of Paradigm Change], 5) Mary Dimmock [co-author of Thirty Years of Disdain: How HHS Buried ME], 6) Jen Brea [Advocate leader at The #MEAction Network and Director/Producer of documentary film Canary in a Coal Mine], 7) Ryan Prior [Co-director/Producer/Writer for the documentary film Forgotten Plague], 8) Joey Tuan [Website developer of Heal Click] to spread the word and donate, and 9) Llewelynn King [ME/CFS advocate, host of White House Chronicle and ME/CFS Alert Youtube Channel]. In addition, each of us will personally be sending out challenges.
US donations will go DIRECTLY to the Biomedical ME/CFS Research at Columbia University's Center for Infection and Immunity of the Mailman School of Public Health that most closely shares our vision to find the root cause of M.E/CFS, especially Mady Hornig, MD, and colleague's 2015 Molecular Psychiatry studies. For those outside of the US, there are also other donation opportunities. Here is a recent Deborah Waroff ME/CFS Alert interview with Dr. Mady Hornig, where Hornig explains status of current research projects needing funding: https://youtu.be/AjrViKJGSUA
Since one of our organization’s goals is to promote research of severe ME/CFS patients, we are excited to inform you of a new study that the Open Medicine Foundation is seeking to fund for biomedical research of severely ill ME/CFS patients. They are needing private funding in order to start the study.
Take the Challenge: Click here for Challenge Instructions