ME is a complex chronic disease that affects multiple body systems and has debilitating symptoms. It occurs in both epidemic and sporadic forms and is not caused by lack of exercise or a psychiatric condition, as commonly believed.
Affected individuals may have a wide range of symptoms and are often misdiagnosed. The ME Association is working to change this, as evidenced by our recent clinical guideline that was developed with clinicians to help them recognise and support people living with ME/CFS.
Often, the medical community does not have a test to diagnose ME/CFS and as many as 90 percent of those who suffer from the disorder are either undiagnosed or misdiagnosed with another illness. Some people live for years without a proper diagnosis.
The ME Association recommends a three-step approach for diagnosing ME/CFS that includes taking a detailed patient history, ruling out other diseases and conditions, and the use of a criteria set to diagnose the illness. The criteria include debilitating fatigue that is not explained by another disease, is not relieved by rest and does not worsen with exertion.
In addition to the ME/CFS diagnostic guideline, The ME Association has produced a comprehensive ME/CFS information booklet that provides guidance for healthcare professionals and patients on recognition of symptom, diagnosis and ongoing care and management. Using this clinical guideline with patients and their families will ensure they receive the best possible care and treatment.
ME/CFS is a chronic, potentially disabling disease that has been recognized since the 1930s, although it was not formally named until the Incline Village outbreak in 1984. It has also been known as myalgic encephalomyelitis, atypical polio, Icelandic disease, Akureyri disease and epidemic neuromyasthenia.
There is no cure for ME/CFS, but some individuals have managed to improve their symptoms through a combination of strategies such as “pacing” (matching the level of activity to the amount of energy available); sleep aids; medications to reduce pain, including antidepressants; and physical therapy that avoids overexertion. Other patients have been able to qualify for disability and obtain assistive devices and accommodations at school or work.
Some patients have reported improvements with cognitive behavior therapy (CBT) and graded exercise therapy (GET). However, these treatments assume that ME is a psychiatric condition or caused by a fear of exercise. Moreover, these interventions are often not well suited for the relapses and remissions of ME. More research on ME is required to understand the cause of the disease and develop effective, safe and sustainable treatments.