What to know
May 12 marks the international awareness day for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This annual observance is held on the birthday of Florence Nightingale, a founder of modern nursing. She was believed to have had an ME/CFS-like illness for the last 50 years of her life and often worked while confined to bed.
What to know about ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, biological, long-term illness that affects many parts of the body. People with ME/CFS feel extremely tired and are often unable to do their usual daily activities. Rest does not improve this fatigue.
ME/CFS symptoms can get worse after even small amounts of physical or mental activity. This is called post-exertional malaise (PEM). People with ME/CFS may also experience trouble sleeping, difficulty thinking clearly or concentrating, dizziness and sometimes pain.
Although people with ME/CFS may not look sick, they often have to scale back their activity level or find workarounds for everyday activities. After physical or mental activity, people with ME/CFS sometimes need to stay in bed for extended periods of time. About 1 in 4 people with ME/CFS are confined to bed at some point during their illness.
What CDC is doing
New research from the CDC-funded Long COVID and Fatiguing Illness Recovery Program (LC&FIRP) was recently published. A June 2025 CDC-led study looked at how including people with lived experience of illness can help train primary care providers to care for people with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other post-infection conditions.
Current patients at Family Health Centers of San Diego were eligible to participate. Twenty-two people agreed to be interviewed. Researchers then compared interview responses to comments and observations made by nine lived-experience experts during the monthly webinars and tele-mentoring sessions for providers. Results from the interviews revealed that patients reported that their care improved in ways that reflected what these lived-experience experts recommended. This suggests that providers used what they learned to change how they care for their patients.
These findings show that including people with lived experience in medical education can help improve patient-centered care and may lead to better health outcomes for people with complex, often misunderstood chronic illnesses like ME/CFS.
How CDC is connecting with patients and caregivers
Stay tuned for information on the next Stakeholder Engagement and Communication (SEC) call. Details will be shared online and through email. Recordings from past SEC calls are available on the SEC page.
How CDC is educating healthcare providers
Meanwhile, CDC continues its mission to help healthcare providers learn more about ME/CFS.
We are working to educate primary care providers to recognize and manage the health of people with complex post-infectious illnesses like ME/CFS and Long COVID. One example is the Long COVID and Fatiguing Illness Recovery Program (LC&FIRP), a collaboration between 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.
The Long COVID and Fatiguing Illness Recovery Program (LC&FIRP) supports primary care providers through tele-mentoring using the ECHO (Extension for Community Healthcare Outcomes) model where healthcare providers can earn continuing medical education credit (CME). The program offers monthly webinars and case-based mentoring sessions where providers can present patient cases and receive guidance. Using a virtual community of practice, a multidisciplinary team of clinical experts shares promising approaches to diagnose and manage Long COVID, ME/CFS and other post-infectious conditions.
A key feature of LC&FIRP is the inclusion of people with lived experience, who contribute to presentations and discussions during mentoring sessions. This approach helps ensure that care strategies reflect patient needs and experiences. By increasing provider knowledge and confidence, LC&FIRP aims to improve recognition, diagnosis, and care for people living with these complex conditions. Healthcare providers who are interested in case-based mentoring sessions can email to longcovid@fhcsd.org for more information or to schedule a session.
The CDC ME/CFS program has also undertaken additional efforts to educate healthcare providers including hosting two events by partnering with the National Center for Primary Care at Morehouse School of Medicine; educating school nurses in the School-based Active Surveillance Project through our contract with the National Association of School Nurses; and ME/CFS spotlight courses on Medscape.
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