Much Can Be Done to Ease ‘Chronic Fatigue Syndrome’ Symptoms
SALT LAKE CITY, UT — The illness commonly known as chronic fatigue syndrome is complex and currently incurable, but clinicians can still do a great deal to manage symptoms and improve patients’ quality of life, experts agree.
In a 2-day meeting held March 2 and 3, 2018, specialists in the condition, now termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), met to discuss their assessment and treatment approaches. The aim of the “summit,” organized by Lucinda Bateman, MD, and held at her Bateman-Horne Center facility here, was to initiate development of expert consensus ME/CFS guidance for primary care and specialist clinicians, and to identify research priorities to address major knowledge gaps.
“One of the messages I’d like to send to physicians is not to have an all-or-nothing approach to this illness, but to break it down into its parts, and see what you can get hold of with the history, objective markers, and clinical intuition. And then, it’s not unreasonable to try some things that are not harmful or expensive,” Bateman told Medscape Medical News.
The 13 panelists, who hail from primary care, infectious disease, immunology, neurology, endocrinology, pediatrics, and integrative medicine, discussed and prioritized elements of history-taking, physical exam findings, diagnostic tests, and treatment approaches for each of the illness’ major components. The core features include fatigue, impaired function, postexertional malaise, sleep dysregulation, neurocognitive impairment, and orthostatic intolerance; other commonly reported features are widespread pain, immune dysregulation, and infection.
Assessing the Illness
The document the group produces will endorse the 2015 Institute of Medicine diagnostic criteria, which defineME/CFS as 6 months of unexplained fatigue with substantial functional impairment, postexertional malaise, unrefreshing sleep, and either cognitive dysfunction or orthostatic intolerance. The symptoms must be moderate to severe and present at least 50% of the time. (Five summit participants, including Bateman, were on the writing committee for that report, and three others served as reviewers for it.)
Assessing functional capacity is key, Bateman said.
“It’s an illness that impairs people’s ability to function in their daily lives. Clinicians need to ask about function, and what happens when people exert themselves both physically and cognitively.”
One revealing question is, “What would you be doing now if you weren’t ill?” Typically, as opposed to depressed patients, those with ME/CFS will have a laundry list. “Our patients are trapped in bodies that don’t work,” Bateman said. “They’re desperate to do more.”
Laboratory tests such as complete blood count with differential, complete metabolic panel, erythrocyte sedimentation rate and C-reactive protein, antinuclear antibody, rheumatoid factor, lipid panel, thyroid-stimulating hormone, and celiac screen should all be performed to investigate symptoms, but are often unhelpful. (As reported previously by Medscape Medical News, evidence suggests that the inflammatory cytokines involved in ME/CFS are different from those that induce C-reactive protein.)
In contrast, assessments that often yield valuable information in patients with ME/CFS include evaluation for orthostatic intolerance and autonomic dysregulation (ideally via tilt-table, but also can be accomplished with the 10-minute “Lean” test), and laboratory tests for Lyme immunoglobulin G (IgG) and IgM;lymphocyte subsets; IgG subclasses; Epstein-Barr virus, including early antigen antibody; herpes viruses; urine or serum markers of mast cell activation syndrome; small intestinal bacterial overgrowth; and natural killer cell function (almost universally low in patients with ME/CFS).
Brain imaging with magnetic resonance imaging or electroencephalography may be indicated in patients who exhibit “brain fog,” headaches, or other neurocognitive symptoms.
“A lot of the testing we do is the differential diagnosis, and we’re looking for comorbid conditions, treatment targets, and subgroups, like people with [small intestinal bacterial overgrowth] or mast cell activation. In the clinical setting, we don’t have to make sense of it all. We just have to identify it, and see if the patient responds to treatment,” Bateman said.