Illnesses that lack exact testing methods can be difficult to diagnose, treat and live with, both physically and emotionally. Chronic fatigue syndrome, or CFS, is one such disease. Until recently, it was very poorly understood or even acknowledged.
But after 9,000 studies, the Institute of Medicine (IOM) and the U.S. National Institutes of Health have concluded that it’s a serious, chronic and complex disease. To stress this, in 2015, the IOM proposed renaming it systemic exertion intolerance disease (SEID).
But no matter the name, it affects as many as 2.5 million Americans, more women than men. Its chief symptom is extreme, disabling fatigue that doesn’t get better with rest. It still has no known specific cause, though it starts in most people with a flu-like illness from which they simply don’t recover.
There are also still no established diagnostic tests available. Getting a diagnosis relies on matching each person’s description of their symptoms to guidelines developed in 1994.
While there’s no cure, there are many types of treatments to try to ease symptoms, including a wide range of medications. Despite the overwhelming and continuous feeling of exhaustion, a supervised exercise plan that starts slowly and increases gradually helps improve fatigue and function for some people. And counseling with cognitive behavioral therapy can change the way you think about your health condition and make it easier to live with.
While you might want to try complementary therapies like acupuncture and massage, keep in mind that there’s little proof that they work for CFS. There is, however, some evidence that nutritional supplements may help. Research is ongoing — at your next office visit be sure to ask your health care provider if there are any new developments to consider.
A comprehensive overview of CFS, published in the British Journal of Pharmacology, offers many insights and an overview of possible treatments.