At one time or another you have probably had a bad cold or some other illness that wiped you out, kept you in bed for several days, and made you feel terrible. One day you think you feel a little better. Later when you walk out for the mail, or maybe when you wake up the next morning, you suddenly realize that your fever is gone, your head is clear, and you no longer ache all over. You feel wonderful. Few feelings are that good.
Imagine how you would feel if this didn’t happen. Instead of feeling great you just keep feeling sick. Your symptoms just go on and on. For weeks. Or for months. Or, you do feel better, but soon your symptoms return. Or new ones appear.
That is long COVID, or post-acute COVID-19 syndrome.
While doctors and scientists were working hard to understand the new SARS-C0V-2 virus that was sickening and killing people around the world, some patients who had survived the disease were finding that their troubles were far from over. Sharing their stories via social media, they dubbed themselves “long haulers.”
Fast forward to today. About 650 articles in the National Library of Medicine’s database of biomedical literature from around the world are tagged with “post-acute COVID-19 syndrome.” More studies are being done. We know a lot about long COVID, but as with COVID-19 itself, our understanding is still evolving.
Defining long COVID has been hard. How long is long? A guideline published by the National Institute for Clinical Excellence in the UK defines long COVID as “signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 4 weeks and are not explained by an alternative diagnosis.” The CDC calls post-COVID conditions “a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected” with SARS-CoV-2. The WHO definition refers to COVID symptoms and effects lasting more than two months.
Long COVID can affect almost any part of the body. Patients may have one symptom or many. Dozens of different symptoms have been reported, but fatigue and shortness of breath, chest pain or palpitations, brain “fog,” muscle and joint pain, dizziness, loss of smell or taste, nausea and weight loss, and anxiety and depression are common.
Symptoms range from merely annoying to seriously life changing. Severe exhaustion after mild physical activity and difficulty in thinking clearly can make it impossible to work or to participate in family and social activities. Evidence of life-threatening problems such as heart disease and stroke is growing. Pre-existing lung or vascular disease can make long COVID more likely or more dangerous. Diabetics are very susceptible and long COVID may trigger Type II (adult onset) diabetes.
Not everyone gets long COVID. As with acute disease, older people are more likely to develop symptoms or more severe problems, but anyone of any age—including children—can develop the condition. And the most mysterious aspect is that not all cases happen in people who were seriously ill with COVID. Long COVID sometimes develops in people who had mild or even no symptoms at all.
How long the problems last likely depends on individual differences, on underlying conditions, and on what causes the effects. The causes are still being investigated. Possibilities include direct damage from the acute illness, the virus lingering in the body, ongoing inflammation, and an autoimmune response (the body attacking its own cells.) Symptoms may improve with time and treatment, but not all do. A March 2022 report from the UK showed that 45% of people with long COVID symptoms had been infected more than a year ago. That’s 685,000 people in just one country.
Long COVID can be treated. Medications, physical and occupational therapy, pulmonary rehabilitation, and other measures can help. Support groups are also important. Survivor Corps (https://www.survivorcorps.com/), a great site for information and support, maintains a growing list of Post Covid Care Centers, including several in Pennsylvania. These centers specialize in diagnosing and treating Long COVID.
Long COVID isn’t inevitable, but it’s not unlikely, either. Estimates of how many people develop long COVID range from 10% to more than a third. Getting long COVID may not ruin your life… but it might.
The only way to be sure of not getting long COVID is to not get infected in the first place. That’s impossible to guarantee, but studies show that being fully vaccinated dramatically lowers the likelihood of long COVID if you do get sick.
Get the shot. It just makes sense.
Michael Heyd, a retired medical librarian from Fairfield Township who spent more than forty years searching the literature for professional hospital staff, is a member of Let’s end COVID!, a group of concerned people in Northcentral PA working to overcome the COVID-19 pandemic through education, outreach and mitigation.
Michael Heyd, a retired medical librarian from Fairfield Township who spent more than forty years searching the literature for professional hospital staff, is a member of Let’s end COVID!