Post Covid-19 Syndrome: dying of Covid is terrible, but some people get sick and just don't get well

In my present job in a low cost health clinic I don't see much acute Covid. Patients in the infectious stage of the coronavirus are dangerous to everyone they breathe on and potentially infectious virus particles can survive on surfaces in clinic, putting staff and other patients at risk. We see most patients who are still infectious in their cars or we arrange video or telephone based visits. If they are very sick, they need to go to the hospital. Sometimes I feel guilty that I am not taking care of these very sick patients, but that's not my role right now. 

The people I do end up seeing are patients who have had Covid, should have recovered, but are still sick. There are many of these people. These are young people, in their 20's maybe, who got sick, tested positive, took 2 weeks off of work, but then can't function normally when they try to go back. They are older people, often with other chronic diseases, who were doing fine but now can't take care of their housework or walk or remember things. They have fatigue, they can't sleep, they can't taste, they are short of breath or have chest pain. They are depressed and anxious. Some of them are uninsured and are living off of family or stimulus checks. Some of them are probably living off of nothing and I am not seeing them at all.

In some of these patients, especially those who had the disease early on in the pandemic, we don't even have a positive Covid test to guide us. They had symptoms that were entirely consistent with the disease, but early on we didn't have tests and they were turned away. Or they eventually tested negative because either they or we delayed testing even though they had a close family member with confirmed disease and classic symptoms. When they were tested, virus was no longer possible to detect. These patients are particularly frustrating because they now have a mystery disease and nothing shows up on tests and nothing we do makes them better.

The Infectious Disease Society of America (IDSA) just recently published an updated review of the articles that address "long Covid" or "post Covid-19 syndrome." Some people call these patients "long haulers." One year into the epidemic in the US and 8 months into our huge outbreaks we are just starting to understand how serious this disease can be for people who survive it. 

• In a study for The Lancet of Chinese patients who had been hospitalized with Covid, over 60% had ongoing muscle weakness and fatigue and about a quarter of them had actual measurable inability to walk normally, along with symptoms like sleeplessness, loss of taste, hair loss and lung function abnormalities. The median age of these patients was 57, so we're not talking about just old people. These patients were surveyed 6 months after hospital discharge.
• In the Annals of Internal Medicine patients were evaluated 60 days after discharge from Michigan hospitals. Nearly 25% of patients had died before discharge and of those, only about 75% were well enough to be discharged home. After 60 days, nearly 1/3 of all patients hospitalized had died. Those that did survive had a high proportion of breathing problems, psychological problems and less that half of those who had worked were able to return to full time employment.
• In Clinical Microbiology and Infection, a French group looked at patients who had not been critically ill. At 60 days over 2 in 3 patients had some sort of persistent significant symptom. These patients had a mean age of 49.
• In Journal of Infection a French study of a single center there showed over half of patients, some of whom had been in the ICU, continued to have symptoms such as fatigue, weakness and shortness of breath over 3 months after their illness.
• In the Journal of Virology, a group out of the UK interviewed patients who were at least 4 weeks from hospital discharge and found that the majority of them continued to have symptoms, especially of fatigue and weakness.
• In a multistate telephone survey from the CDC of symptomatic adults who had a positive outpatient test for Covid, 35% had not returned to their usual state of health in 2-3 weeks. In young patients, 18-34 years of age, one in five had not returned to normal health. 

This kind of outcome is really unusual for viral illnesses or illnesses in general. We have noticed that patients who are admitted to intensive care units for other reasons and have long difficult courses in the hospital sometimes take a very long time to return to normal. But Covid is not only surprisingly lethal, it also causes an unusual amount of disability. We don't know how long that disability will last, but the proportion of survivors with some kind of disability is really high.

Where are the glimmers of hope? 

Vaccines.

The Covid vaccines released in the US so far are excellent. An article came out in the New England Journal of Medicine showing what happens to patients after receiving the Pfizer mRNA vaccine. Tens of thousands of patients received vaccine or placebo. Ten days after patients received the first dose of the vaccine they stopped getting Covid. At three weeks, they received their second dose and during the 100 days they gathered data, very few patients who had received the vaccine got Covid and almost nobody got severe Covid. The results with the Moderna version are similar.

I got my Pfizer vaccine a little over a month ago. It was fine. I got a sore arm with both doses, a little feeling of "this is weird" after my first dose and one day of low grade fever and muscle aches after the second. I am now very unlikely to get Covid and very unlikely to give Covid to anybody. I participated in a vaccine clinic at the local fairgrounds and there were very few reactions, a few hives, one person who fainted, pretty much par for the course for a vaccine. It was gratifying to realize that all of those patients who passed through that process will be protected. Odds are good that they won't die or become disabled from Covid. The vaccines are apparently still effective even on the newer variants.

The fewer cases we have, the fewer disabled people there will be and the less chance to get new and interesting mutant viruses. So. Shots in arms, right away, less virus, more wellness, back to normal, hug your loved ones.

One of the many downsides to how many Covid infections we've had is the disability that goes with recovery from the acute illness. Some people have advocated letting the pandemic take its course, welcoming natural "herd immunity" when enough people have had the disease that it can no longer spread quickly. They argue that if we did not shut down businesses or gatherings we would have avoided the economic and social ills associated with these unnatural restrictions. Besides the many more Covid deaths we would have had, there would also be so much more Covid disability, people living with shortness of breath, mental fogginess, depression, weakness and fatigue. The social and financial costs of this disability are already going to be significant. As of today, there have been 25 million confirmed cases of Covid in the US. Experts estimate that at least 200 million people would need to be infected with Covid for adequate herd immunity.  We don't yet know how long post Covid related disability will last, but it is sure to have a profound impact on peoples' lives and on healthcare spending.

If we can achieve our herd immunity with vaccinations rather than natural infection there will be many fewer sick and dead. The vast majority of people who get a Covid immunization will not be afflicted with Covid, and if we can keep using our masking and social distancing until adequate vaccination happens, millions of people will be spared disability. 

Not getting Covid is a really important, and worth some inconvenience right now. So at the risk of repeating what may be obvious...

1. Masking is important whenever you are inside with others or close enough to people outside that you can share aerosols (we say 6 feet.) Cloth masks are not as good as medical masks and N95 or KN95 masks are best. Those little neck sleeves you stretch over your nose and mouth are not helpful in preventing spread of disease. 
2. It is far less dangerous to spend time with one person alone than to be in a place with many people. It is unlikely that your best friend will be infectious with Covid on the day you spend with him or her. It is very likely that, in a group of 100 people singing in church for instance, or talking in a bar, you will be exposed to infectious respiratory aerosols. 
3. Get a vaccination as soon as you can. There may be opportunities based on your job or on being the right place at the right time--so take them (sometimes there is an extra dose in a vial, and nobody scheduled to be vaccinated, for instance.) When you are vaccinated you are so much less dangerous to family, friends and strangers. If you and your friends are vaccinated you will be able to socially get "back to normal" with that group. Get vaccinated and you have put on your superhero armor!