#MEAction and Mayo Clinic Researchers Launch Initiative to Transform Emergency Department Care for People with ME/CFS and Long COVID
- #MEAction
- Jun 23
- 3 min read
Funded by the Whittemore Peterson Institute (WPI) and Mayo Clinic, the project will develop the first nationally applicable clinical guidelines for emergency department care of ME/CFS and Long COVID patients
FOR IMMEDIATE RELEASE
Media Contact: Adriane Tillman
Email: press@meaction.net
Date: June 23, 2026
June 23, 2026 #MEAction, a leading advocacy and patient-led research organization for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID announced a collaboration with Mayo Clinic researchers to develop emergency department (ED) clinical guidelines for ME/CFS and Long COVID, the first initiative of its kind in the United States. The project is made possible by a grant from the Whittemore Peterson Institute (WPI).
For the millions living with ME/CFS and Long COVID and their providers, clear, evidence-informed ED guidance represents a critical missing piece in clinical care. Without clinical guidelines or adequate training, emergency department staff may miss diagnoses, delay specialist referrals, and even deliver care that can worsen patients' conditions. The result is that many in our community avoid seeking emergency care altogether, even in crisis. That is a dangerous outcome, and one #MEAction is determined to change.
“We’re bringing together people living with ME/CFS and Long COVID, leaders in emergency medicine and other clinical fields, social workers, and experts in infection-associated chronic disease.Together, we’ll develop practical resources for the emergency department that can improve patient outcomes right away and strengthen IACC knowledge and best-practice care over time. This is especially important since studies show that people with ME/CFS avoid the emergency room, when they need care most.”
— Jaime Seltzer, Scientific Director, #MEAction
#MEAction Scientific Director Jaime Seltzer and Dr. Stephanie Grach, M.D. M.S., and other medical providers at Mayo Clinic have already collected data that is informing the initiative. The collaboration will expand that evidence base through a forthcoming national patient survey, then use the findings to develop a comprehensive set of clinical guidelines for emergency departments across the country, guidelines that will be designed for practical adoption at scale. The guidelines will then go through an iterative review process with experts in emergency department care and other medical specialties as well as people with lived experience, social workers, and liaisons between patients and hospital systems. The guidelines will specifically address specialist referral pathways for undiagnosed patients and standards of care for those already living with ME/CFS or Long COVID.
The grant from the Whittemore Peterson Institute funds the first phase of the project. In addition, the project received funding through the General Internal Medicine CME Education Committee at Mayo Clinic. #MEAction is actively seeking additional support to complete the initiative and expand its reach.
"WPI is honored to support #MEAction's work through this grant. Creating guidelines for emergency medical providers is a critical step toward improving patient experiences and outcomes."
— Annette Whittemore, Founder and Board Chair of WPI
A national patient survey will launch in the coming weeks. #MEAction is calling on people with ME/CFS and Long COVID who have experiences in the emergency room to participate; their experiences will directly shape the guidelines developed from this research. Details will be announced through #MEAction's website and community channels.
This initiative is part of #MEAction's broader effort to ensure that people with ME/CFS and Long COVID receive informed, respectful, and effective care across all points of the medical system, from primary care to the emergency room.
About #MEAction. #MEAction is an advocacy and patient-led research organization fighting for compassionate care and treatment for ME/CFS and Long COVID. Learn more at meaction.net.
About the Whittemore Peterson Institute (WPI). The Whittemore Peterson Institute (WPI) is non-profit medical research institute dedicated to Myalgic Encephalomyelitis (ME/CFS), Long COVID, and similar complex infection-associated chronic conditions. Learn more at wpi.ngo.
This initiative by #MEAction and Mayo Clinic is a huge step forward—finally addressing the gap in emergency care for ME/CFS and Long COVID patients. Clear national guidelines will empower doctors to respond with accuracy and compassion, reducing misdiagnosis and harmful interventions. It feels much like Slope game, where precision matters—here, each guideline keeps care steady while opening paths toward safer, more supportive treatment.
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