The ME CFS Foundation South Africa

We already know enough to avoid making the same mistakes again with Long Covid.

Excellent information for Health Care Practitioners

Based on experience with past coronaviruses, the emerging challenge of prolonged symptoms after infection with the novel coronavirus 2019 (SARS-CoV-2) is unsurprising. Data from a large international web-based patient survey indicate substantial symptom overlap between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at 6 months following the onset of first symptoms, including three quarters of participants suffering from fatigue and postexertional malaise, and over half with cognitive dysfunction. Apparent similarities between the presentations of long COVID and ME/CFS suggest that we may apply what we have learned from ME/CFS to long COVID.

Avoid the Tower of Babel Phenomenon
The biblical parable of the Tower of Babel cautions that the pursuit of truth may lead to the inability to communicate. Although case definition criteria appear to have become more specific over time, the various names for and definitions of ME/CFS have created confusion and consternation in the patient and clinical communities. Already, several different labels for long COVID exist, even while optimal diagnostic criteria remain unclear. The consensus of the patient community has coalesced around referring to their experiences as “long COVID” and to themselves as “long haulers.” The clinical and research communities should honor the patient perspective by using this label to avoid alienating the patient community and creating confusion. Patients ultimately own and derive meaning from their diagnostic label, not any single area of clinical and scientific endeavor.

Hear, Validate, and Empower Patients With Long COVID
It has been estimated that 90% of ME/CFS cases may remain undiagnosed,5 suggesting that people with postviral fatigue already are substantially undercounted, underdiagnosed, and undertreated. The time between initial symptoms and diagnosis in ME/CFS cases is often long. The diagnostic process for ME/CFS is frustrating, because it is often seen as a diagnosis of exclusion. This process of medical evaluation is often exhaustive and expensive, and does not yield a result that leads to a cure.5 Mischaracterization of ME/CFS as a psychiatric condition is common.5 It is a generally stigmatizing condition, because symptoms and activity limitations may wax and wane from day to day, resulting in “good days” and “crash days.” This symptom pattern, which may appear as malingering or secondary gain to the uninitiated or uncompassionate clinician, is characterized by an invisible source of disablement underpinned by a fluctuating physiological baseline. Physical therapists should respect and validate symptom reports made by patients in good faith.

Acknowledge the Apparent Physiological Basis of Long COVID
People with ME/CFS generally demonstrate a blunted rise in heart rate with increasing activity intensity on cardiopulmonary exercise testing, which is called chronotropic intolerance.3 Heart rate responses to activity are further blunted during the postexertional state, which is observed at peak exertion and the ventilatory anaerobic threshold.3 Chronotropic intolerance may provide important insight into the physiological basis of fluctuating activity tolerance in ME/CFS cases, because it suggests cardiac autonomic dysregulation.3 The cardiac autonomic dysregulation observed on cardiopulmonary exercise testing may be associated with clinical observations of postural orthostatic tachycardia and orthostatic hypotension in ME/CFS. Patients with long COVID also have reported aberrant heart rate responses to exercise, including an increase in resting heart rate and orthostatic impairments. The apparent similarity in aberrant heart rate responses to exercise between ME/CFS and long COVID should be the subject of careful study. Yet, this relationship also suggests that activity pacing through heart rate monitoring may be useful for patients with long COVID, as it is for patients with ME/CFS.

Teach Respect for Physiological Activity Limits in Long COVID
Physical therapists must approach exercise prescription in long COVID with vigilance and caution, to ensure that the exercise program is restorative and not making the patient’s symptoms worse. Exercise should not cause symptoms of postexertional malaise. One useful way to monitor symptoms is to specifically ask about them in all patients with long COVID as part of the assessment process. The physical therapist may use validated questionnaires or a narrative approach to asking the patient to characterize her or his top 3 symptoms in response to exercise. Further, exercise should not be undertaken to the exclusion of the patient’s desired daily activities. Black et al2 found that a graded exercise program increased step counts in people with ME/CFS. A secondary analysis of the data revealed that an increased step count was a self-fulfilling prophecy of the graded exercise program, because it did not increase the accelerometer count associated with usual daily activity.1 Physical therapists should be aware that patients with long COVID may adhere to graded exercise programs that cause diminishing returns in daily functioning.

While we are learning something new each day about the consequences of SARS-CoV-2 infection, our collective experience with postviral fatigue is not entirely new. We know enough as a clinical and scientific community to avoid the same perils and pitfalls of ME/CFS when dealing with a novel coronavirus, even as we continue to research the best possible diagnostics and therapeutics.

Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dyn Med. 2005;4:10.
Black CD, O’Connor P J, McCully KK. Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dyn Med. 2005;4:3.
Davenport TE, Lehnen M, Stevens SR, VanNess JM, Stevens J, Snell CR. Chronotropic intolerance: an overlooked determinant of symptoms and activity limitation in myalgic encephalomyelitis/chronic fatigue syndrome? Front Pediatr. 2019;7:82.
Davis HE, Assaf GS, McCorkell L, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact [preprint]. medRxiv. 2020.
Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press; 2015.

Todd E. Davenport Staci R. Stevens Jared Stevens Christopher R. Snell J. Mark Van Ness
Published online onMarch 10, 2021


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