What to know
May 12 marks the international awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The annual commemoration is held on the birthday of Florence Nightingale, a founder of modern nursing who was believed to have had an ME/CFS-like illness.
What to know about ME/CFS
ME/CFS is a serious and often long-lasting illness that keeps people from doing their usual activities. It is a biological illness that affects many body parts. In addition to lasting fatigue for which it is named, ME/CFS also causes problems thinking and sleeping, dizziness, pain, and many other symptoms. Unlike just "being tired" the fatigue that accompanies ME/CFS is debilitating and not improved by rest.
People with ME/CFS may not look sick but often have to scale back their activity level or find workarounds to everyday activities. ME/CFS may get worse after they do any activity -- physical or mental. This symptom is called post-exertional malaise (PEM). After people with ME/CFS exert themselves, they may need to stay in bed for many days. About 1 in 4 people with ME/CFS are confined to bed at some point during their illness.
What CDC is doing
CDC continues to publish findings from its ME/CFS Multi-site Clinical Assessment (MCAM) study.
An showed that, when people with ME/CFS also have other Chronic Overlapping Pain Conditions (COPCs) like chronic lower back pain, chronic migraines, and irritable bowel syndrome, those other pain conditions can affect their ME/CFS symptoms. The study is one of the first to find COPCs are extremely common in people with ME/CFS. More than 75 percent of people with ME/CFS had one or more COPCs. This work highlights why it is important to identify and manage COPCs, in addition to ME/CFS.
You can hear more about these findings in on Spotify*.
How CDC is connecting with patients and caregivers
CDC hosted two Stakeholder Engagement and Communication (SEC) calls to share information on ME/CFS with people with ME/CFS, their loved ones and with doctors and other medical providers.
The May 2024 SEC call featured Dr. Brian T. Walitt and Dr. Avindra Nath from the National Institute of Health's National Institute of Neurological Diseases and Stroke (NINDS). Their presentation was titled, "Deep Phenotyping of Post-Infection Syndromes and the Way Forward." It explored advancements in understanding post-infection conditions.
In December 2024, Dr. Satish Raj, Professor of Cardiac Science at the University of Calgary in Canada presented "A Primer About POTS." His talk reviewed postural orthostatic tachycardia syndrome (POTS) symptoms, and he offered insights and strategies for management.
How CDC is educating healthcare providers
Meanwhile, CDC continues its mission to help healthcare providers learn more about ME/CFS.
Among those efforts: a continuing medical education course with credits available until September. CDC also has continuing medical education through Medscape and other training resources on its webpage for medical students.
These resources include an Anki flashcard deck developed by #MEAction. The Anki flashcards are a digital learning tool used by many medical students. Now, medical students can learn about ME/CFS through them.
- * Linking to this webpage does not constitute a direct or indirect endorsement of the information published on the broader Spotify platform.