#MEAction held a press conference in front of the 300 red cots to call on the government to take meaningful ACTION for ME/CFS and Long COVID.

Our communities spoke about their experiences of being turned away by doctors and gaslit for their symptoms. A mother talked about her son’s struggle with ME/CFS for 13 years, and how her daughter-in-law now faces the same struggle with Long COVID. 

We called on the government to tackle the crisis the same way that it did with HIV/AIDS: with patient experts at the helm driving the decisions. 

Watch the speeches below, and see the full press conference here.

We are Demanding:

  1. Operation Warp Speed for Long COVID and ME/CFS that is attuned to health inequity.
  2. A centralized office coordinating Long COVID research that is fully-resourced and builds off the existing knowledge and expertise of ME/CFS and other infection-associated conditions.
  3. Patient experts are equal partners in research. Patient experts are authorized to decide which clinical trials are prioritized and designed with a focus on delivering outcomes for patients.
  4. Educate clinicians on a massive scale, specifically related to how to treat infection-associated conditions like ME/CFS, MCAS, POTS and EDS.
  5. Economic support of people with Long COVID and ME/CFS, including SSDI, housing resources and financial assistance.