Long Haulers? Chronic Covid?

The COVID-19 pandemic will almost certainly create a substantial wave of chronically disabled people who have been termed ‘long haulers’. Knowing about this group, what symptoms to look for and what options there are for recovery may help you or a loved one.

Almost a year into the global pandemic caused by Sars CoV-2, many of us are suffering from COVID fatigue. We are tired of wearing masks, not hugging our friends, not traveling, etc. but now is not the time to be lax. Even if you feel that you have a great immune system and are healthy, you need to know about this group that has been termed the ‘long haulers’ in the US and ‘long COVID’ in the United Kingdom. Physicians have termed this chronic COVID or post-acute COVID.

Most of the chronic Covid individuals contracted the coronavirus but were never hospitalized. For many of these people the symptoms were not that severe initially yet their symptoms have persisted and for many have become even more debilitating.

An article published in The Atlantic disclosed the difficulties of the long haulers.

Our understanding of COVID-19 has accreted around the idea that it kills a few and is “mild” for the rest. Nisreen Alwan, is a public-health professor at the University of Southampton who has had COVID-19 since March 20. She says that experts and officials should stop referring to all non-hospitalized cases as “mild.” They should agree on a definition of recovery that goes beyond being discharged from the hospital or testing negative for the virus, and accounts for a patient’s quality of life.

Many long-haulers start feeling better in their fourth or fifth month, but recovery is tentative, variable, and not guaranteed.

In October, the National Institutes of Health added a description of such cases to its Covid-19 treatment guidelines, saying doctors were reporting Covid-19-related long-term symptoms and disabilities in people with milder illness.

While there is still no formal definition of post-COVID long haulers, a reasonable definition would be someone who was diagnosed with COVID-19 and has not returned to their pre-COVID level of health after several months.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Disease at the National Institutes of Health, has speculated that many Covid patients will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is better known as chronic fatigue.

How Common is Post-Covid

While no one really knows the exact number of individuals suffering from long term effects, the medical community is now starting to study this affect.

A recent survey of more than 4,000 COVID-19 patients found the following: 10% of those aged 18-49 still battle with symptoms four weeks after becoming sick, 4.5% of all ages had symptoms for more than 8 weeks and 2.3% had them for more than 12 weeks.

Another study looking at COVID patients who were not hospitalized found that about 25% still had at least one symptom after 90 days and a European study also looking at non-hospitalized patients discovered that about a third of 1,837 in the study reported being dependent on a caregiver about three months after the start of their symptoms.

Common Symptoms of Post-Covid

A Wall Street Journal article published November 1st interviewed physicians working at Mount Sinai Health System’s Center for Post-Covid. This is one of the largest centers in the US caring for the long haulers.

What differentiates Covid-19 is the far-reaching nature of its effects. While it starts in the lungs, it often affects many other parts of the body, including the heart, kidneys and the digestive and nervous systems, doctors said.

“I haven’t really seen any other illness that affects so many different organ systems in as many different ways as Covid does,” said Zijian Chen, medical director for Mount Sinai Health System’s Center for Post-Covid Care.

“We thought it was a virus that, once it does what it does, you recover and you go back to normal,” he said. Sometimes that isn’t the case, and that “is really scary,” he said.

Researchers have learned that a key reason chronic-Covid symptoms persist is that the inflammation activated by the virus continues to affect organs and tissues even after the virus is gone. There is also speculation that the virus can initiate an autoimmune reaction causing one’s immune system to attack and damage their own organs.

“It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today,’” says David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers.

Common Chronic-Covid Symptoms that can last for months.

• Heart-muscle inflammation. This was even seen in young and fit patients who had no symptoms.

• Diarrhea, nausea, pain and other GI symptoms caused by the virus altering the gut bacteria

• Dysautonomia or dysregulation of the automatic nervous system. This can cause issues with breathing, digestion, heart rate and blood pressure.

• Exercise intolerance and fatigue are very common.

• Headaches and migraines

• Joint and muscle pains

• Continued shortness of breath

• Difficulty sleeping

• Memory and concentration issues

• Anxiety and other mood disorders

Study Conducted but Indiana School of Medicine compiled a Long-Hauler Symptoms Survey Report. The information for the report was from the experiences of people suffering from long-term COVID-19 symptoms.

Who is more likely to get chronic Covid

Trisha Greenhalgh, professor of primary care at the University of Oxford and the lead author of an August BMJ study was among the first to define chronic Covid patients. She explained who might be susceptible to long term symptoms.

“Usually, the patients with bad disease are most likely to have persistent symptoms, but Covid doesn’t work like that. For many such patients, she said, “the disease itself is not that bad,” but symptoms like memory lapses and rapid heart rate sometimes persist for months.

Currently, there is no way to predict who will become a long hauler. A recent article in Science noted that people only mildly affected by COVID-19 still can have lingering symptoms, and those more severely ill can be back to normal two months later.

Healthy individuals may have some immune dysregulation that they are unaware of. Young and seemingly healthy individuals may not present with critical symptoms and need admission to the hospital but they are still at risk for long term illness. Those who are high achievers in all aspects of their lives – overwork, overexercise, too much or too little nutrition, family and social stress all have impacts on the immune system and increasing oxidative stress. Even living in an urban environment, as this article about air pollution highlights increasing COVID-19 deaths, can impact the immune system and increase the risk of a cytokine storm.

What is the Long-Term Outlook?

While there are no long-term studies on Sars CoV-2, there is information from the previous coronavirus outbreak. In 2011, Harvey Moldofsky and John Patcai at the University of Toronto in Canada described 22 people with SARS, all of whom remained unable to work 13–36 months after infection. Compared with matched controls, they had persistent fatigue, muscle pain, depression and disrupted sleep. Another study, published in 2009, tracked people with SARS for 4 years and found that 40% had chronic fatigue. Many were unemployed and had experienced social stigmatization.

What we know now about patients who have had chronic fatigue or ME/CFS before the current pandemic is that they remain ill for many decades. Only time will tell if this proves true for the post-COVID cases of ME/CFS.

“You don’t realize how lucky you are with your health until you don’t have it,” said Elizabeth Moore, a 43-year-old lawyer and mother of three in Valparaiso, Ind who was interviewed by Wall Street Journal Article. Pre-Covid-19 she was an avid skier and did boot-camp workouts several times a week. Since falling ill in March, she has been struggling with symptoms including memory problems and gastrointestinal issues.

What Can You Do?

If you have been diagnosed with COVID or had symptoms but never tested and are still not back to baseline after a month, please contact a physician. The longer you struggle with your health, the more difficult it may be for interventions to work.

Please contact us, at 276-235-3205 or email us at thejohnsoncenter@gmail.com, if you would like more information about our Chronic-Covid program.