ME/CFS is a complex chronic disease that affects multiple body systems. Susceptibility may be genetic, but in the majority of cases ME is triggered by infection. The illness is relapsing-remitting, with patients often experiencing significant fluctuations in their well-being from day to day and week to month. The hallmark symptom is post-exertional malaise, or severe worsening of symptoms after even minimal physical and cognitive exertion. ME/CFS is more disabling than most chronic diseases including stroke, cancer, heart failure and diabetes. It is estimated that 75% of ME sufferers are unable to work and 25% are bedbound.
The enigmatic nature of ME/CFS means that health care professionals are often inexperienced with the disorder and its care. This lack of expertise negatively impacts patient care, and has led to misunderstandings of the disorder and misdiagnosis.
There is no laboratory test to diagnose ME/CFS, and a diagnosis must be made on the basis of clinical history, exclusion of other conditions that can cause similar symptoms, and one of several diagnostic criteria. However, a positive diagnosis is rarely made and many people continue to be misdiagnosed. This is likely because patients are not able to describe their symptoms, and doctors do not always listen carefully to what they say.
Evidence suggests that problems generating and using energy (adenosine triphosphate, or ATP) is at the root of ME/CFS. In a controlled research setting, ME/CFS patients perform poorly on energy tests taken after two days of rest. This is in contrast to sedentary people and those with other chronic illnesses where energy test results do not change after two days of rest.
Despite the difficulties of diagnosing ME/CFS, there are steps health care providers can take to improve the quality of patients’ lives. These include teaching patients how to manage their ME/CFS, such as recording activity levels to build a picture of what uses more energy than others. This can help them make changes to their daily routines and activities that may benefit their condition.
Another aspect of ME/CFS management is identifying and treating comorbidities such as fibromyalgia, depression and anxiety, sleep disturbances, migraines, GI issues and gastroenterology disorders. This may involve referral to other specialists or a change in medication regimen. It is also important to inform patients about the benefits of joining local ME/CFS support groups to access peer support and information and advice. Action for ME and ME Scotland can assist with signposting to these groups in most areas of the country.