ME/CFS Advocacy Week

ME/CFS Advocacy Week brings people with Myalgic Encephalomyelitis (ME), their loved ones, advocates, scientists, clinicians and caregivers from across the country together to call for more action and research funding, meet other advocates, and share their unique stories with members of congress, together in one voice. The keystone event of ME/CFS Advocacy Week is Washington DC ME/CFS Advocacy Day, a full-day Capitol Hill storm where hundreds of advocates meet face to face with members of Congress and their staff.

This year, ME/CFS Advocacy Week has gone digital with entirely remote events and actions you can join from the comfort of your home.

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

ME/CFS epidemics have historically followed viral outbreaks and the majority of people with ME/CFS were triggered by a viral infection. The field of ME/CFS research is needed now more than ever, to find answers and improve the lives of millions.

The virus COVID-19 is anticipated to infect as many as 214 million
Americans, cause the hospitalization of 21 million people, and 3.5 million Americans may never return to health, resulting in a cost of over $48 billion annually for the rest of their lives in lost productivity and increased medical costs.

  • Some COVID-19 patients are exhibiting ME/CFS symptoms — nearly 35% of patients. (source)
  • Coronaviruses trigger ME/CFS. Experts are estimating significant surges in ME/CFS cases following the pandemic, up to 3,570,000 new ME/CFS cases, more than doubling the existing cases in the United States in 36 months. (source)
  • ME/CFS outbreaks have historically followed viral epidemics similar to the current COVID-19 epidemic. (source)
  • Our frontline responders are not equipped to identify and diagnosis post-viral neuroimmune disease. (source)

Solve M.E. is calling for immediate response measures for ME/CFS in the next COVID-19 response package. We are recommending $60 million to be authorized for NIH post-viral neuro-immune research, specifically focusing on ME/CFS and COVID-19.

Solve M.E. is calling on Congress to authorize and appropriate $60 million – at least $15 million a year over the next four years – to the Director of the NIH to conduct and support post-viral neuroimmune disease research:

  • Research the diagnosis, treatment, and risk factors of post-viral chronic neuroimmune diseases – specifically COVID-19 patients exhibiting ME/CFS symptoms and survivors of COVID-19 with ME/CFS.
  • Conduct post-viral neuroimmune disease data collection and sharing.
  • Launch new/expanding Collaborative Research Centers to meet the surging need created by the COVID-19 crisis.
  • Launch new/expanding NIH intramural ME/CFS research to incorporate COVID-19 patients.
  • Introduce new ME/CFS and COVID-19 disease-specific competitive funding opportunities with set-aside funds, prioritizing new and early career researchers.

Supporting resources to share

Help us communicate this important message during this year’s Advocacy Week by sharing the following resources:

Communicate this message to Congressional leaders

Join us by registering for Advocacy Day below and we’ll send you information on how you can join online meetings with Congressional leaders and their staff this Tuesday, April 21. All meetings will be conducted remotely this year and each will be attended by a group of advocates.

Whether or not you’ll be taking part in official Advocacy Day meetings, join us and take action all week long by contacting government representatives and sending out message out across social media. This year we will be heard!