Long Haul COVID Syndrome

CNN’s Chris Cuomo has revealed he’s still suffering from the lingering effects of COVID-19 more than three months after he was first stricken.

“I’ve got brain fog that won’t go away. “I’ve got an onset of clinical depression, which is not sadness, but it is depression. I never had it before. I have it now. I can’t recover from workouts the way I did before.”

It is becoming increasingly apparent that many patients who recovered from the acute phase of the SARS-CoV-2 infection have persistent symptoms. This includes the clouding of mentation, sleep disturbances, exercise intolerance, and autonomic symptoms.  Some also complain of temperature dysregulation and lymphadenopathy. Although there are no research articles on these patients, many news articles have been written, and there are Facebook pages where there are several thousand patients with these symptoms. They describe themselves as the “Long-Haul-COVID” or “Long-Tail COVID.” Many of these patients are health care workers who had massive exposure to the virus early in the pandemic and described having symptoms for 100+ days. It is essential that we characterize these patients, document the objective findings, and determine how best to study their pathophysiology to develop proper treatment guidelines.

Symptoms of Long-Haul COVID

Insomnia or frequent awakenings

Inability to concentrate and think clearly

Memory loss

Easy fatigability despite normal lung function

Anorexia or increased appetite

Temperature dysregulation

Lymphadenopathy

Dysautonomia

Autonomic symptoms in Long-Haul COVID

Tachycardia upon mild exercise or standing

Night sweats

Gastroparesis

Constipation

Peripheral vasoconstriction

Most of these patients were in good health before getting infected with SARS-CoV-2. They all had myriad symptoms during the acute phase; however, as the fever and respiratory symptoms improved, they are left with persistent symptoms, some of which are gradually improving. Many of these symptoms overlap with patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The cause of ME/CFS remains unknown despite decades of research on the syndrome. Many of these patients similarly report a viral infection as a trigger. Still, since they come to our attention months and years after symptom onset, it is impossible to know what may have triggered the symptoms.

Long-Haul COVID thus represents an excellent opportunity to study the pathophysiology of ME/CFS that may have broader implications. It is unclear if these patients may have endocrine abnormalities, but certainly, with SARS-CoV-1, hypothalamic/pituitary dysfunction and adrenal insufficiency have been reported. It would, of course, be equally important to determine if there might be any premorbid conditions or medications that might contribute to these symptoms.

Medical standard of care is sure to fail these patients, just as it has for other types of chronic illnesses such as ME/CFS and post-traumatic stress disorder. Many of these patients will not return to work, society, or continue to be productive citizens. Many will not be able to get the tests and treatments necessary to recover from this illness. This can already be seen in patients who report a “negative test” and are deemed cured.

Medical standard of care uses a wait and see approach to deal with the long-haul COVID syndrome. Even if medical doctors want to do more for their patients, their hands will be tied by the insurance companies. Thus, these patients will have to venture out into alternative therapies not covered by insurance companies.