A lack of energy, inability to drag yourself through a full day without lying down, and problems keeping on task all point in one direction — CFS

Chronic Fatigue Syndrome, also known as (ME/CFS), is a common and severe illness that is part of a spectrum of post-infectious diseases that have received little attention from medicine and research for decades. The recent pandemic has led to a dramatic increase in post-infectious syndromes with the introduction of Long COVID-19.

It has been demonstrated that a subset of patients can develop ME/CFS in response to a variety of viral infections, including SARS-CoV-2. An estimated three million people in Europe had it before the emergence of SARS-CoV-2; as a result of the COVID-19 pandemic, many millions more people contracted this often crippling illness. What are the symptoms?

Weariness, diminished physical and mental function, headaches, dyspnea, palpitations, and numerous other symptoms are common and hinder daily living activities for a large number of patients. While characterized by a wide range of symptoms, the most common being fatigue and exercise intolerance.

Physical and mental exhaustion, exertional intolerance with post-exertional malaise (PEM), cognitive decline, orthostatic intolerance, and pain are the most pertinent symptoms. The degree to which these symptoms vary in different individuals can make the diagnosis difficult, but perhaps the cognitive piece may be one of its outstanding features.

In one study, the most common symptoms, for which almost half of patients required decreased working hours and 22% of patients were unable to work, were fatigue, post-exertional malaise (PEM), and cognitive impairment.

White adults were more likely than Hispanic or Asian adults to have ME/CFS; ME/CFS estimates decreased with higher family income and increased with rural residence. The researchers reported in the NCHS Data Brief that the percentage of people with ME/CFS rose with age through ages 60–69, then dropped in those 70 and older. But there are others, usually not noted immediately, and they include individuals with ME/CFS and long-term COVID who share similar physical limitations and difficulties with balance.

Although the early post-infection disease courses have been extensively documented, the long-term health implications for individuals experiencing debilitating fatigue are yet unknown. There is another aspect of undiagnosed chronic fatigue syndrome: shadow burden. The majority of cases of this illness occur in adults between the ages of 20 and 50, which places a heavy strain on working-age individuals and society at large.

Considering the varying symptoms, the age ranges, and the staggered lengths of impairment, it is reasonable to assume that some, if not many, of these patients may be seen as malingering. Therein lies social stigma and damage to self-esteem.

Do they need psychotherapy, or is there a definitive physical cause for their symptoms? According to research and the literature about it, there has been little progress made in this area, although there are many hypotheses that may be relevant.

Patients are left wondering about their mental health as a consequence of the lack of a definitive diagnosis of chronic fatigue syndrome. I worked as a medical consultant, assessing applications for benefits for people with the disorder. I can tell you that too many of the physicians at that time didn’t believe that individuals with either chronic fatigue syndrome or Lyme disease truly had debilitating illnesses that prevented them from working. Some went so far as to question evaluations by specific physicians, viewing them as too readily providing the diagnoses so the person could get benefits.

More progress is needed, as is increased healthcare education in this area, to adequately treat patients and release them from the pangs of uncertainty.