The term ME is more clinically accurate than CFS and is becoming increasingly used by patients, advocates, and researchers in the United States. However, the CDC continues to use the name chronic fatigue syndrome for research and diagnosis.
People with ME/CFS have a serious, debilitating illness that affects their ability to work and carry out daily activities. ME/CFS causes a range of symptoms including unrefreshing sleep, fatigue, post-exertional malaise (PEM), and cognitive impairment. These symptoms may be triggered by an activity such as exercise, a viral infection, or a change in temperature.
ME/CFS is a relapsing-remitting illness that can cause a sudden and severe worsening of symptoms in some cases, or it may gradually get worse over months or years. ME/CFS is a complex disorder with no specific laboratory test to diagnose it. Instead, doctors must rely on patient history, clinical examination, and one of several criteria sets to make a diagnosis.
People who have ME/CFS often have a number of other diseases called comorbidities. These include fibromyalgia (widespread muscle pain), postural orthostatic tachycardia syndrome (POTS, increased heart rate upon standing) and gastroparesis or irritable bowel syndrome (bloating and constipation). Other conditions that occur frequently in ME/CFS patients are secondary depression, Ehler’s Danlos Syndrome and mast cell disorders.
ME is a very complex condition with no cure, but there are a number of treatments that can help. These include “pacing” – matching levels of activity to the patient’s available energy, the use of medications to treat pain and sleep problems, and physical therapy – particularly exercise to improve strength and mobility. People with ME/CFS can also benefit from supportive counselling, nutritional support and dietary supplements.
The ME Association has produced a clinical guideline that health professionals can use to help them assess and manage ME/CFS. It features symptom recognition and outlines how to refer patients for specialist ME/CFS care and ongoing management.
This guideline is available to download and can be used by patients, carers and healthcare professionals. We strongly recommend that healthcare professionals refer adults with ME/CFS to a specialist team who can confirm the diagnosis and develop a care and support plan. The specialist ME/CFS team should have medically trained clinicians from a variety of specialisms including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, and general practice, as well as physiotherapists, occupational therapists, dietitians and clinical or counselling psychologists. The ME Association is working with the NHS to ensure that this guideline is implemented and that better care is available for all patients with ME/CFS.