Myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS) and ME/CFS, is an extremely disabling illness that affects people of all ages from diverse backgrounds. It is a neurological disorder that impacts the brain and muscles, as well as digestive, immune, and cardiac systems. People with ME can have a wide range of symptoms, from mild to severe.
There are no diagnostic biomarkers for ME/CFS, but the NAM criteria and other diagnostic tools can help clinicians make a proactive diagnosis based on core symptoms. These include a rapid or delayed onset, post-exertional malaise (PEM), unrefreshing sleep, and chronic fatigue. Other common symptoms are fibromyalgia, gastrointestinal issues like bloating and diarrhea, orthostatic intolerance, and Ehlers Danlos Syndrome, which can cause hyperextension or pain when stretching.
Many people with ME/CFS report feeling like their body is a dead battery that never recharges, even after hours of sleep. This is because ME/CFS causes a physiological response to exercise that leads to a lack of energy. In addition, patients may feel depressed and anxious as a result of the disease. The ME Association has developed a clinical guideline for healthcare professionals that includes information on recognition, diagnosis and ongoing care and support of adults with ME/CFS.
People with ME/CFS often have one or more additional diseases, called comorbidities. These can include fibromyalgia, postural orthostatic tachycardia syndrome (POTS, which causes fast heart rate upon standing), gastrointestinal problems such as gastroparesis and irritable bowel syndrome, secondary depression, and Ehlers Danlos Syndrome. Treatment of comorbidities can significantly reduce symptom burden and improve quality of life for those with ME/CFS. Documentation of these comorbidities can also promote appropriate reimbursement by insurance groups and access to benefits and services.
ME/CFS can be difficult to diagnose and treat, in part because of misinformation in the medical community. Educating health care providers is crucial to helping more patients get the diagnosis and proper care they need. The ME Association has a number of educational materials that can help health care professionals learn more about the disease, including a primer for patients on what ME/CFS is and an overview of current research. For more information, visit our Education page. We also recommend that you encourage patients to seek out a specialist ME/CFS clinic in their area. These clinics are comprised of healthcare professionals trained in the assessment and management of ME/CFS, including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, and psychiatry. These teams can help to confirm a diagnosis, manage the symptoms, and develop a tailored care and support plan for each patient.