Some people continue to maintain that COVID-19 is no big deal. With more than 35 million cases in the US and over 600,000 deaths, this disease is a very big deal. A message that we have received repeatedly is that most people recover from the coronavirus. That is true. Do the math: 98 to 99 percent of those infected with the SARS-CoV-2 virus “recover.” But there is growing concern that a mind-boggling number of these individuals will suffer from “long COVID.” These folks are also called long haulers. This condition has been dubbed long-haul COVID or post-COVID syndrome (PCS).
How Many People Are Developing Long COVID?
A new study by the independent, nonprofit organization FAIR Health reveals that a surprising number of people are experiencing new health problems 30 days or more after recovering from COVID-19 (FAIR Health White Paper, June 15, 2021). The researchers found that even people whose infections were asymptomatic might need healthcare for months or years to come.
Insurance data from roughly 2 million COVID patients were analyzed. Post-COVID symptoms affected all age groups. About half of those who had been hospitalized sought help because of ongoing complications. For those who had mild infections, the proportion was over 27 percent. One in five of those who’d had no symptoms of COVID were struggling with post-COVID syndrome. Some of these individuals may not have even realized that they had been infected months before.
Some Startling Stats:
People who are hospitalized and survive their COVID infection are not out of the woods.
The authors of the FAIR Health White Paper report:
“The odds of death 30 days or more after initial diagnosis with COVID-19 were 46 times higher for patients who were hospitalized with COVID-19 and discharged than patients who had not been hospitalized.”
Even people who are not hospitalized can suffer long COVID:
“Many patients recover from COVID-19 within a few weeks, but some exhibit persistent or new symptoms more than four weeks after first being diagnosed. These post-COVID conditions can last for months— even nine months, according to one study—and may be experienced by 10 to 30 percent of COVID-19 patients. The conditions can include, among others, fatigue, cognitive difficulties (sometimes called ‘brain fog’), headache, numbness/tingling, loss of smell or taste, dizziness, heart palpitations, chest pain, shortness of breath, cough, sore throat, joint or muscle pain, excessive sweating, insomnia, depression, anxiety and fever. Patients with COVID-19, after the first 30 days of illness, are at higher risk of death than people who have not had COVID-19.”
What Symptoms Are Typical of Long COVID?
Q. In March 2020, I came down with COVID-19, although at the time I thought it was just a mild case of the flu. Since then, I’ve had severe shortness of breath as well as muscle and joint aches and pains. My senses of taste and smell come and go (mostly go). I also have a dry cough and fatigue that comes on so suddenly I have to sit down immediately. I’ve had every test known to man, but nothing shows up. My biggest issue is shortness of breath.
A. Your description fits post-COVID syndrome (PCS). People with such symptoms often refer to themselves as “long haulers.” Other symptoms can include chest pain, heart palpitations, cough, brain fog and headache.
Many people now suffering PCS were not very sick initially. Their COVID symptoms were mild to moderate, but months later they are debilitated.
Clinics are cropping up around the world to treat long COVID complications, but there are few clear answers about the best therapies. If you would like to learn more about this condition, you may wish to listen to our free podcast 1254: Combating the Long-Term Effects of Post-COVID Syndrome. You might also find Show 1230: What Happens When COVID Symptoms Don’t Go Away of interest.
Are Nervous System Problems Part of the Post COVID Picture?
Shortness of breath is not the only troublesome symptom of post-COVID syndrome. Research suggests that a significant proportion of those who recover from COVID may suffer from psychiatric or neurologic disorders.
A study published in Lancet Psychiatry found that a third of patients who had recovered from the coronavirus infection were diagnosed with a new neurological or psychiatric problem within six months (Lancet Psychiatry, April 6, 2021). The investigators reached this conclusion by analyzing the health records of more than 230,000 individuals. Depression and anxiety stood out as among the most common diagnoses.
One of the researchers remarked:
“Our results indicate that brain diseases and psychiatric disorders are more common after COVID-19 than after flu or other respiratory infections.”
Less common but more serious were strokes and dementia that occurred within six months of recovery.
This is not the first report of neurological and cognitive problems associated with COVID-19. Another study found that these are common complications of Post-COVID Syndrome (Annals of Clinical and Translational Neurology, March 23, 2021). The patients in this study were not hospitalized when they were infected, nor were they elderly. (Their average age was 43 years old.) About two-fifths had pre-existing depression or anxiety. Eighty-one percent reported “brain fog,” while 68 percent had headaches. Muscle pain and weakness, numbness and tingling, changes in the sense of smell or taste also made life difficult for many of them.
With 85 percent of these patients reporting fatigue, the researchers conclude:
“Non-hospitalized Covid-19 ‘long haulers’ experience prominent and persistent ‘brain fog’ and fatigue that affect their cognition and quality of life.”
How Common Is Long COVID?
A study published online in medRxiv (January 15, 2021) reveals some grim statistics. This article has not yet been peer reviewed. The title is:
“Epidemiology of post-COVID syndrome following hospitalisation with coronavirus: a retrospective cohort study”
The British scientists tracked 47,780 patients in the UK who left the hospital after they recovered from COVID-19. The researchers wanted to know how many of these people were readmitted to the hospital and how many died. They also tracked complications associated with the heart, lungs, kidney and liver.
The investigators introduce their research this way:
“Long COVID, or post-COVID syndrome (PCS), is not a single condition, and has been defined by the National Institute for Health and Care Excellence (NICE) as ‘signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis.’”
Strap In! Here Come the Results:
• “Of 47,780 individuals in hospital with COVID-19 over the study period, 29.4% were re-admitted and 12.3% died following discharge.”
• “Respiratory disease was diagnosed in 14,140 individuals (29.6%) following discharge, with 6,085 of these being new-onset cases.”
A significant number of people who “recovered” from COVID-19 went on to develop a major adverse cardiovascular event (MACE). That includes heart attack (myocardial infarction or MI), heart failure (HF), stroke and irregular heart rhythms. Other PCS complications included diabetes and chronic kidney disease.
Please note that the results of the British study from January 15, 2021 are surprisingly similar to the latest data from the FAIR Health White Paper (June 15, 2021).
The Big Picture on Post-COVID Syndrome (PCS):
We find that it is often helpful to let the investigators speak for themselves:
“In the largest study to-date to examine PCS in individuals hospitalised with COVID-19, comprising 47,780 COVID-19 cases with matched controls, we describe three major findings. Firstly, COVID-19 hospitalisation was associated with increased risk of readmission and death following discharge, relative to that in individuals of similar demographic and clinical profiles over the same period; nearly a third of people post-COVID-19 hospital discharge were re-admitted and more than 1 in 10 died.”
The authors note that the implications for the British health care system are significant. We suspect the same could be said for the United States health care system.
“Individuals discharged from hospital following acute COVID-19 face elevated rates of mortality, readmission and multi-organ dysfunction compared with the background levels that exist for these individuals, and the relative increase in risk is neither confined to the elderly nor uniform across ethnic groups. Urgent research is required to further understand the risk factors for PCS, so that treatment provision can be better targeted to demographically and clinically at-risk populations.”
Long Haulers Are on Their Own:
There is so much we do not understand about post-COVID Syndrome. No one knows exactly who is susceptible to it. Health professionals don’t know how to treat it. In fact, we have talked to health professionals who are themselves living with severe fatigue or other symptoms following the infection. They will tell you that it is challenging. You can hear their stories by clicking on this link.
What Happens When COVID Symptoms Don’t Go Away
Even young healthy people may have trouble when COVID symptoms don’t go away for weeks or months. Find out what it’s like.
Readers Speak Up:
“I have two long hauler acquaintances. Both were very sick but not hospitalized. She was exceptionally active, exercised daily and is 38. The other, 68 year old male, but competed in triathlons for his age group. Both have severe issues: the woman has heart pain, neurological, taste loss and fatigue. The triathlete can barely exercise beyond 20 minutes tops. It has been about 6 months since their COVID-19 infections.”
Julia reported on her treatment regimen:
“While the scientific data might drag a bit on this issue of Vitamin D and COVID-19, I must say that, as a patient in a major university medical center’s respiratory clinic, I was recommended to take Vitamin D in a daily dosage no less than 1,000 IU @ day. I am also a high-level Vitamin-D infused milk drink.
“I don’t have empirical data but can say that after starting this regimen, which also includes 2,000mg Vitamin C, Zinc picolinate 60mg; and 550 mg Potassium gluconate, I am coping better with all of the effects of being a COVID-19 ‘Long Hauler.’ I’d hate to imagine what these symptoms would be like without this regimen!”
“Are there studies on those post COVID19 patients who were not hospitalized?
“I have been a long-hauler for 8 months now. I am 46 years old, was not hospitalized for COVID19, but had an appendectomy while ill with COVID19. I had many E.R. visits, though, and many, many tests done.”
If you have had experience with long COVID, please share it. Let us all know if you have found anything that is especially helpful.