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Anecdotally, at least, some long-haul travelers are familiar with the type of viral reactivation that Klimas describes. In late October, seven months after contracting the coronavirus, Lauren Nichols developed shingles – a reactivation of the virus that causes chickenpox. The episode, which featured a burning, nerve pain “out of this world”, sent her to the emergency room. A lesion developed on the cornea of his left eye, threatening his vision. Antiviral drugs have helped control shingles. Nichols, a director of a longtime Covid support group, told me that the reactivation of Epstein-Barr, cytomegalovirus and other herpesviruses is occurring in a small but large percentage of long-haul visitors to the site. .
A similar argument about the causes of chronic symptoms – persistent infection versus persistent inflammation from a previous infection – appears prominently in the study of Lyme disease. Some people infected with Borrelia burgdorferi, the tick-borne bacteria that causes Lyme disease, do not recover even after taking antibiotics. Patients may call this disease “chronic Lyme disease”, but doctors prefer to call it “post-treatment Lyme disease syndrome” because they are not sure an infection is still there. As in ME / CFS research, the debate over the root cause of this post-Lyme disease has polarized the field for years.
There are other similarities as well. The Lyme problem is unknown but immense. Each year, approximately 329,000 people are infected with B. burgdorferi. About 10% of people treated with antibiotics develop lasting symptoms, including fatigue, pain, and sometimes nervous system disorders like dysautonomia – heart rate, blood pressure, and other basic bodily functions that are out of order. It seems to strike women more than men, it has long been dismissed as psychological, and the long-term illness is often considered worse than the acute infection.
Like ME / CFS, post-Lyme syndrome does not have a biological marker allowing a concrete diagnosis. The three non-mutually exclusive ideas about the causes of long-term symptoms roughly match those of ME / CFS: persistent infection (or perhaps just debris from Lyme spirochetes); autoimmune or inflammatory dysfunction triggered by infection that persists after the bacteria are gone; or changes in the nervous system that mirror Jarred Younger’s idea of “angry microglia”, but which are described by Lyme researchers as “central nervous system sensitization”. Infection may alter the way the brain works in such a way that once easily bearable stimuli – pain, light, sound – become unbearable.
The parallels between ME / CFS and Lyme reinforce the idea that many different infections – including Lyme spirochete – can trigger long-term debilitating syndromes. It’s a lesson we as a society may have forgotten, Allen Steere, a Lyme expert and rheumatologist at Harvard Medical School, told me. “Today we have millions of people infected and it is becoming obvious to people that this type of problem can occur.”
It’s an infuriating prospect, but for a long time Covid may not be a unique syndrome at all. This could, as appears to be the case with ME / CFS, a set of issues related in different ways to an initial trigger – in the case of Covid, the invasion of the human body by a virus believed to be native to bats. Doctors and researchers at EM / CFS have faced this kind of frustrating complexity for years. It’s an inevitable challenge in managing a disease, be it ME / CFS or long Covid, the diagnosis of which is based almost entirely on the subjective reporting of symptoms. There are, after all, many ways to produce symptoms like fatigue, brain fog, and even dysautonomia. As Peter Rowe says, treating ME / CFS is like peeling an artichoke. “You’re trying to break down the layers of treatable problems and see what the essence is,” he told me.
In the case of ME / CFS, scientists have identified a few more leaves of the proverbial artichoke – a take-out bag of treatable, somewhat obscure illnesses that appear to be associated with it. One is mast cell activation syndrome, which can produce fatigue, pain, and problems with thinking and memory; infection can sometimes initiate it. Another is small-fiber neuropathy, a condition in which the nerves in the body begin to fail and may die, causing pain, fatigue, and disruption of basic bodily functions like breathing. Infections can sometimes trigger it, and given the current description of the long-lasting symptoms of Covid, Anne Louise Oaklander, a pioneer in understanding this neuropathy, suspects that it will also occur in long haul people. “Small fiber neuropathy is generally treatable,” Oaklander told me, “and in some cases curable.”
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