ME/CFS Awareness Day, May 12: The Illness, and How CDC Is Training Doctors to Treat It

May 12 is the international awareness day for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It falls on the birthday of Florence Nightingale, a founder of modern nursing, who is believed to have had an ME/CFS-like illness for the last 50 years of her life and often worked while confined to bed.

Florence Nightingale, from an engraving of 1885

What ME/CFS is

ME/CFS is a serious, biological, long-term illness that affects many parts of the body.

• People are extremely tired, often too tired for their usual daily activities — and rest does not help.
• Symptoms can worsen after even small amounts of physical or mental activity: post-exertional malaise (PEM).
• Many also have trouble sleeping, difficulty thinking clearly or concentrating, dizziness and sometimes pain.

People with ME/CFS may not look sick, but often have to cut back their activity or find workarounds for everyday tasks. After exertion some must stay in bed for long periods, and about 1 in 4 are confined to bed at some point in their illness.

Teaching doctors, with patients' help

CDC works to help primary care providers recognize and manage complex post-infectious illnesses such as ME/CFS and Long COVID. One route is the Long COVID and Fatiguing Illness Recovery Program (LC&FIRP), a collaboration of CDC's ME/CFS program, Family Health Centers of San Diego (a federally qualified health center), the ECHO Institute at the University of New Mexico, and the University of Washington Post-COVID Rehabilitation and Recovery Clinic.

• It uses the ECHO (Extension for Community Healthcare Outcomes) model of tele-mentoring: monthly webinars and case-based sessions where providers present patients and get guidance, earning continuing medical education credit.
• A multidisciplinary team of clinical experts shares promising ways to diagnose and manage Long COVID, ME/CFS and other post-infectious conditions.
• People with lived experience of these illnesses take part in presentations and discussions, so that care reflects patients' needs.

A CDC-led study published in June 2025 (Frontiers in Health Services) tested whether that works. Twenty-two patients at Family Health Centers of San Diego were interviewed, and their answers compared with what nine lived-experience experts had said in the program's sessions. Patients reported that their care had improved in the ways the experts had recommended — a sign that providers put what they learned into practice. Including people with lived experience in medical education, the study concludes, can make care more patient-centered and may improve outcomes for complex, often misunderstood chronic illnesses like ME/CFS.

CDC's ME/CFS program has also held two events with the National Center for Primary Care at Morehouse School of Medicine, trained school nurses in the School-based Active Surveillance Project through a contract with the National Association of School Nurses, and run ME/CFS spotlight courses on Medscape. Recordings of its Stakeholder Engagement and Communication calls for patients and caregivers are on the events page.

How to show support

• Wear blue on May 12.
• Spread the word on social media with #MECFSAwareness.
• Share personal stories about the illness with neighbors and friends.

Sources

Based on "ME/CFS Awareness Day," Centers for Disease Control and Prevention; a work of the United States government in the public domain.