Further General Resources on Long Covid

“We Need To Start Thinking More Critically — and Speaking More Cautiously — About Long Covid” by Adam W. Gaffney, Stat News, March 22, 2021

“Needed for long Covid: a less authoritarian approach to understanding, treatment,” By Diane O'Leary, Stat News, April 22, 2021

“Instead of pronouncements from on high about patients’ limited understanding of their own experiences, genuine humility is needed from clinicians and clinical authors about the deep uncertainty that defines the challenge of long Covid.”

“Unlocking the Mysteries of Long Covid,” The Atlantic, by Meghan O'Rourke, March 8, 2021

O’Rouke discusses the importance of breathwork for Covid Long-Haulers in improving symptoms like fatigue, shortness of breath, dizziness, brain fog, and tachycardia (rapid heart rate). “Through breathwork, patients can consciously control their heart rate,” says Dr. Dayna McCarthy, who works at Mount Sinai, where they have a Center for Post-COVID Care.

“Long-Haulers Are Redefining COVID-19,” The Atlantic, By Ed Yong

Ed Yong writes that Covid Long Haulers often have to deal with “‘Medical gaslighting,’ whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, [which is] especially bad for women, and even worse for women of color.”

This kind of dismissiveness of women and women of color is all too common in the medical world. So many doctors say “oh, it’s probably stress or anxiety,” and send patients off. This makes patients feel like they’re not being taken seriously. This is why we made the film, This Might Hurt, to show what a step-by-step, evidence-based mind-body treatment looks like for when doctors “can’t find anything wrong.”

“Explaining the Unexplainable: Chronic Fatigue Syndrome” by Dr. Howard Schubiner, Psychology Today

“Is Long COVID a Mind-Body Syndrome?” by James F. Zender Ph.D., Psychology Today

Dr. Zender explains how psychological approaches to Long Covid can help some sufferers find relief:

“Some innovative approaches have recently been developed to further test if long COVID symptoms are due to structural or neurocircuit issues, or a combination of both. Once structural problems have been ruled out, psychological techniques to reduce fear and anxiety, as well as instill hope, can be effective in restoring quality of life and symptom abatement.”

Can the brain cause symptoms this severe?

Rachel Aviv’s New Yorker article and the Oscar-nominated Netflix documentary Live Overtakes Me both explore a compelling and extreme example of the mind-body connection: more than four hundred of children of Syrian immigrants who sought refuge in Sweden began falling into comas. Why?

“Resignation syndrome” is a potent example of the power of the mind-body connection, and of the bio-psycho-social nature of many illnesses. Why is this condition mostly limited to Western Asia-born immigrants in Sweden? It’s a question that points to the social factor of many illnesses, the fact that societal forces can give shape to physical symptoms. And if biopsychosocial forces can put people into a coma, they can also initiate a whole range of symptoms that are less debilitating.

As Rachel Aviv reported in her article “The Trauma of Facing Deportation,” when the Swedish government tried to deport Syrians immigrants back to their war-torn country, where their children had witnessed family members being killed, something quite remarkable happened—their children went into “resignation syndrome.” The resignation coma is characterized by being “totally passive, immobile, lacks tonus, withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain.”

Aviv reports: “An illness that is said to exist only in Sweden, and only among refugees. The patients have no underlying physical or neurological disease, but they seem to have lost the will to live. The Swedish refer to them as de apatiska, the apathetic. ‘I think it is a form of protection, this coma they are in,’ Hultcrantz said. ‘They are like Snow White. They just fall away from the world.’

After being tended to and fed through a tube for months, the children sometimes emerge from the coma if their parents are given a reprieve by immigration officials and allowed to stay in Sweden; and if they talk about it in the child’s presence.

“Resignation syndrome” is a potent example of the power of the mind-body connection, and of the bio-psycho-social nature of many illnesses. Why is this condition mostly limited to Western Asia-born immigrants in Sweden? It’s a question that points to the social factor of many illnesses, that societal forces can give shape to physical symptoms.

It can be so counterintuitive to think that the brain could initiate or maintain unremitting symptoms of fatigue, pain, brain fog, rapid heart rates, and insomnia. “There’s no way the brain could be doing something this severe.” Yet if biopsychosocial forces can put people into a coma, it can also initiate a whole range of symptoms that are less debilitating.

Long Covid Without Positive Serology

A few studies found that between 50-60% of people with Long Covid symptoms did not have positive serology (antibodies) for Covid.

Of course, antibodies fade over time, and it’s possible that antibodies were not detected even though someone was infected with Covid. But a couple of studies have shown that 99% of people who tested positive for a Covid-19 infection have antibodies six and nine months later. That means it is possible that as many as half of Long Covid patients were never infected with Covid-19.

Even if some LC patients have never been infected with Covid, their symptoms are just as real as if they had been. The pain is still pain, the fatigue is still fatigue. Their symptoms are just as real as other chronic pain patients who have fibromyalgia or migraine headaches that do not have structural damage that explains their symptoms. Brain-generated symptoms are real, debilitating, and very often quite treatable when identified.