Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection

A growing number of people are reporting persistent illness after first getting infected with the SARS-CoV-2 virus. These “long-haulers,” a name coined for long-term COVID-19 patients, experience profound fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, reactivation of fevers, and more.¹ Many say that these and other symptoms often worsen after attempting daily activities and exercise, placing patients in a never-ending loop of illness and disability.

Age and severity of COVID-19 appear to be poor predictors of who goes on to experience long-term complications in the aftermath of a SARS-CoV-2 infection. According to a recent article in The Atlantic, around three in five people struggling to recover are between the ages of 30 and 48—people who are considered to be in the prime of their lives.² The notion that COVID-19 is a mild and brief illness for most ignores the true risk of long-term difficulties from this disease.

Although the focus remains on preventing and treating COVID-19, those who survive the illness are far from being “recovered” and remain debilitated and unable to return to their pre-COVID lives. This has the potential to place a further drag on the economy, especially if sufferers remain ill and disabled over the long-term.

The Dangers of Exercise with Post-Viral Fatigue

Making matters worse are the doctors who trivialize long-term COVID-19 patients seeking help. Many have been told that stress and anxiety are hampering their recovery and are advised to exercise³ and push through their illness, even though mild exertion can trigger a return of symptoms or cause further cardiac and pulmonary complications.⁴

For this reason, a more conservative rehabilitation approach is required.

Paul Garner, an infectious disease professor in the Liverpool School of Tropical Medicine, makes the distinction between those still suffering from the later manifestations of the disease versus those who are experiencing symptom exacerbation after pushing it too hard. In a blog post recently published in the British Journal of Medicine, Garner writes, “I suspect people recovering at home and their doctors … do not realize it may be exertion—both mental and physical—that is causing their symptoms to return. Without instituting careful pacing, people suffer, and their recovery is delayed.”⁵

COVID-19 and Post-Viral ME/CFS

It is unclear what is driving the prolonged symptoms and how long they will last. Is this the natural course of a SARS-CoV-19 infection for a subset of people? Is this a form of post-viral fatigue? Or are the long-term symptoms indicative of myalgic encephalomyelitis (ME, also called ME/CFS), a debilitating neurological disease from which few recover, as Dr. Anthony Fauci has suggested?⁶ Others have claimed it is an entirely new syndrome. It may be too early to tell, and it will likely be months before we have a better understanding of the trajectory of this novel virus. In the meantime, the long-haulers need help.

Previous coronavirus epidemics offer some clues about what might be in store for COVID-19 patients in the long run. Following the SARS pandemic in 2002 and 2003, nearly all patients experienced long-term impacts to physical health. In a small study, only 13 percent of Toronto healthcare workers reported feeling completely recovered twelve months after infection with SARS.⁷ A UK study showed similar results, with most patients still experiencing functional impairments six months after their infection.⁸ Another study showed that around 30 percent of Hong Kong SARS survivors met the CDC’s criteria for chronic fatigue syndrome (CFS).⁹ A Toronto study following patients several years after SARS found symptoms consistent with ME/CFS, suggesting the complications may persist.¹⁰ Data from COVID-19 patients in Italy show a similar pattern.¹¹

Applying Insights from ME/CFS to the Rehabilitation of Post-COVID Long-Haulers

Workwell Foundation has developed a two-part MedBridge continuing education course that addresses many of the complex issues facing the rehabilitation of long-term COVID-19 patients. We have dedicated over twenty years of research to understand the metabolic, pulmonary, and cardiac complications of people suffering from ME/CFS, a complex neuroimmune disease often triggered by viral infections. ME/CFS shares considerable overlap with long-term COVID-19 symptoms and has been linked to other coronaviruses, such as SARS and MERS.

ME/CFS Part 1: Introduction and Identification

What’s in a name and why does it matter?

This section of the course describes the epidemiological background of case definition criteria, explores the contemporary case definition criteria for ME/CFS, and discusses the usefulness of the case definition criteria in identifying ME/CFS cases. Most case definitions have a six-month waiting period before diagnosing ME/CFS, while others do not. Many post-COVID patients fit the criteria and likely more will if they remain ill for longer than six months.

Objective evidence of post-exertional malaise and exercise impairment in ME/CFS

Another course objective is acquainting practitioners with the two-day maximal cardiopulmonary exercise testing (CPET) paradigm and describing the scientific research two-day CPET has generated on the physiological basis of post-exertional malaise (PEM), a worsening of mental and physical symptoms after exertion. Symptom exacerbation after exertion is a common theme among long-term COVID-19 patients.

ME/CFS Part 2: Etiology and Analeptic Management

Etiological clues from CPET

This portion of the course introduces practitioners to inferences that can be made about the pathoetiology of disablement in ME/CFS based on CPET data. CPET is an invaluable tool for documenting functional limitations across many fatiguing illnesses and could play a role in determining if lingering COVID-19 symptoms have developed into ME/CFS.

Analeptic strategies for ME/CFS

CPET findings of aerobic dysfunction suggest that clinical management should emphasize energy conservation self-management strategies and restorative anaerobic activities. In this final segment, the course covers analeptic management for people with ME/CFS, with many lessons that could be applied to post-COVID patients until they are no longer experiencing symptom exacerbation in response to activity.

Not all long-haulers will develop ME/CFS, but we believe that the principles covered in this course apply to post-COVID cases and offer a conservative approach for rehabilitation until more information becomes available about mechanisms responsible for the slow recoveries being widely reported in the press.

Additional resources on ME/CFS to complement the course can be found at Workwell Foundation and include short videos, handouts, and publications that can be used in the clinic and to educate patients.