Sufferers of what has been called chronic fatigue syndrome (CFS) are challenging patients, presenting with complaints of postexertional malaise, persistent flulike symptoms, unrefreshing sleep, "brain fog," and often a long list of other symptoms that don't seem to fit any recognizable pattern. Some appear ill, but many don't. And the routine laboratory tests often come back negative.
For that reason, those with CFS are often labelled as malingerers, depressed, or at least partially psychosomatic. But for the scientists and clinicians in the field, the phenomenon is as real as diabetes or atherosclerosis. Despite the stigma and a severe dearth of research funding, new efforts from the federal government and the private sector could move the field forward.
The name itself is one of the many controversies surrounding the condition. The CFS moniker has been used in the United States since 1988; in the United Kingdom, Canada, and elsewhere it is called myalgic encephalomyelitis (ME).
Many patients abhor the term "chronic fatigue syndrome" because they feel that it trivializes the condition, which can render individuals severely debilitated, housebound, or bedridden.
Moreover, an emerging consensus in the field is that "chronic fatigue syndrome" as defined in 1994 by the Centers for Disease Control and Prevention (CDC) represents a more heterogeneous and less severely affected population than does "myalgic encephalomyelitis," captured by the 2003 Canadian Clinical Case Definition. Both definitions require multiple symptoms in addition to 6 months of unexplained fatigue to make the diagnosis, but the ME criteria also require the hallmark symptom of postexertional malaise.
For now, the compromise term "ME/CFS" has been adopted by the research community and officially by the various agencies within the US Department of Health and Human Services (HHS). In early 2015, the Institute of Medicine, commissioned by HHS, will release recommendations for new clinical diagnostic criteria and possibly will propose a name change as well.