In six short years, our grassroots activism, collaborations, and coalitions have accomplished:

• Improving Patient Care
  • Our activism led to the removal of Cognitive Behavioral Therapy and Graded Exercise Therapy from the Centers for Disease Control website.
  • We launched a petition with over 12,000 signatures against the PACE trial which caused much harm to our community. This action and years of work by #MEAction, #MEAction UK and other amazing advocates led to the removal of Cognitive Behavioral Therapy and Graded Exercise Therapy from the NICE guideline.
  • We are fighting for a NCHS ICD-10-CM coding change, which we hope will be implemented soon. If we succeed, this will have a huge impact on diagnosis and treatment. 
  • We are continuing to collaborate with Mayo Clinic so that people with ME are at the center of care. 
     
• Improving Research
  • #MEAction ensured ME/CFS experts were a part of the RECOVER initiative, without it there would be little to no connection to ME.
  • We fought for the renewal of the Collaborative Research Centers. 
  • #MEAction launched a patient-led research project to collect data that connects ME with other comorbid conditions. Patient-led research puts us in the driver’s seat of improving research. 
     
• Increasing Research Funding
  • Through a coalition of organizations, we fought to increase the CDMRP appropriations which increased research funding for ME. 
     
• Improving & Advocating for Treatment
  • We put people with ME first. We developed pacing guides, toolkits, groups, and information to educate individuals and clinicians
  • At the beginning of the pandemic, when we knew the number of people with ME was going to escalate, we created the #StopRestPace campaign for newly diagnosed individuals. We are seeing this make a real difference in preventing harm to the newly ill as well as serving as a critical reminder for many long-term patients.
     
• Holding Officials Accountable
  • #MEAction had recent productive and open meetings with HHS and Department of Labor in order for people with ME to be more supported in all areas of life. 
  • After strategic protests in over 100 cities worldwide, we secured meetings with the highest leaders of the NIH to demand change. 
  • We’ve met with policymakers in the UK and held a historic parliamentary debate.
  • We continue to hold institutions accountable and launch urgent actions whenever they fail us. 
     
• Changing the Narrative
  • It was #MEAction that successfully bird-dogged Dr. Fauci at the beginning of the pandemic, to get him to link COVID-19 and ME/CFS (something only grassroots activism can accomplish)! 
  • We have been featured in major press outlets including The New York Times, CNN, The Guardian, Vox, TIME, The Atlantic and more- changing the narrative on a very large scale. 
  • #MEAction hosted virtual #MillionsMissing storytelling events (including training) to connect Long COVID and ME, and to change the narrative on complex, chronic illness. 
     
• Fighting for Patients and Putting People with ME at the Center
  • #MEAction petitions harmful institutions that mistreat severe patients. We’ve been successful in releasing patients held against their will and demanded patient autonomy. 
  • Hosted events, brought thousands of people with ME around the world together for community, support, and strategy. Because this is how we change the landscape. Support, love, connection all matter.