The tragedy of the post-COVID “long haulers”

Anthony Komaroff, MD

Editor in Chief, Harvard Health Letter

Suppose you are suddenly are stricken with COVID-19. You become very ill for several weeks. On awakening every morning, you wonder if this day might be your last.

And then you begin to turn the corner. Every day your worst symptoms — the fever, the terrible cough, the breathlessness — get a little better. You are winning, beating a life-threatening disease, and you no longer wonder if each day might be your last. In another week or two, you’ll be your old self.

But weeks pass, and while the worst symptoms are gone, you’re not your old self — not even close. You can’t meet your responsibilities at home or at work: no energy. Even routine physical exertion, like vacuuming, leaves you feeling exhausted. You ache all over. You’re having trouble concentrating on anything, even watching TV; you’re unusually forgetful; you stumble over simple calculations. Your brain feels like it’s in a fog.

Your doctor congratulates you: the virus can no longer be detected in your body. That means you should be feeling fine. But you’re not feeling fine.

The doctor suggests that maybe the terrible experience of being ill with COVID-19 has left you a little depressed, or experiencing a little PTSD. Maybe some psychiatric treatment would help, since there’s nothing wrong with you physically. You try the treatment, and it doesn’t help.

How common are lingering COVID symptoms?

Tens of thousands of people in the United States have such a lingering illness following COVID-19. In the US, we call them post-COVID “long haulers.” In the United Kingdom, they are said to be suffering from “long COVID.”

Published studies (see here and here) and surveys conducted by patient groups indicate that 50% to 80% of patients continue to have bothersome symptoms three months after the onset of COVID-19 — even after tests no longer detect virus in their body.

Which lingering symptoms are common?

The most common symptoms are fatigue, body aches, shortness of breath, difficulty concentrating, inability to exercise, headache, and difficulty sleeping. Since COVID-19 is a new disease that began with an outbreak in China in December 2019, we have no information on long-term recovery rates.

Who is more likely to become a long hauler?

Currently, we can’t accurately predict who will become a long hauler. As a recent article in Science notes, people only mildly affected by COVID-19 still can have lingering symptoms, and people who were severely ill can be back to normal two months later. However, continued symptoms are more likely to occur in people over age 50, people with two or three chronic illnesses, and people who became very ill with COVID-19.

There is no formal definition of the term “post-COVID long haulers.” In my opinion, a reasonable definition would be anyone diagnosed with the coronavirus that causes COVID-19, or very likely to have been infected by it, who has not returned to their pre-COVID-19 level of health and function after six months.

Long-haulers include two groups of people affected by the virus:

  • Those who experience some permanent damage to their lungs, heart, kidneys, or brain that may affect their ability to function.
  • Those who continue to experience debilitating symptoms despite no detectable damage to these organs.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses — such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease. The National Academy of Medicine estimates there are one million to two million people in the US with ME/CFS.

Dr. Tedros Ghebreyesus, director of the World Health Organization, also has expressed growing concern about the chronic illnesses that may follow in the wake of COVID-19, including ME/CFS.

What might cause the symptoms that plague long haulers?

Research is underway to test several theories. People with ME/CFS, and possibly the post-COVID long haulers, may have an ongoing low level of inflammation in the brain, or decreased blood flow to the brain, or an autoimmune condition in which the body makes antibodies that attack the brain, or several of these abnormalities.

The bottom line

How many people may become long haulers? We can only guess. Right now, more than seven million Americans have been infected by the virus. It’s not unthinkable that 50 million Americans will ultimately become infected. If just 5% develop lingering symptoms, and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years. Most people who developed ME/CFS before COVID-19 remain ill for many decades. Only time will tell if this proves true for the post-COVID cases of ME/CFS.

For this and many other reasons, the strain on the American health care system and economy from the pandemic will not end soon, even if we develop and deploy a very effective vaccine by the end of 2021.

Virtually every health professional I know believes that the pandemic in the US could and should have been better controlled than it has been. Bad mistakes rarely lead to only temporary damage.

Related Information: COVID-19, Flu, and Colds

Comments:

  1. Molly Shaw

    Thank you for information. I’ve been sick since March 21st, didn’t get tested for covid19 until I was sick for weeks and tested negative five times. I have all of the ongoing issues you listed and it is a struggle just to breathe. I also had inflammation issues before this virus.

  2. Claire

    As my husband was in a Covid ICU for 2 weeks, I was home, on my own to deal with”mild” Covid.

    I basically slept a lot, drank lots of Gatorade, kept a close watch on oxygen levels and cried.

    We both recovered. Now we are both having hair loss. I’ve been through chemo and have had to deal with chunks of hair coming out. This is not like chemo, but it is not good.

    It’s been a sad and tough road. My mom died of Covid in April, we both got Covid and watching the number of so many people dying is heart wrenching.

    Wear masks, social distance and wash your hands, that’s what my mom would always say.

    Stay safe. Be well.

  3. Kolya Krece

    Post-COVID cases of ME/CFS will not actually place much of a load on the health care system for the simple reason that the health care system by and large ignores people with ME/CFS. It does not devote much in the way of resources to studying the physiology of their illness. Nor are many resources allocated to treating people who are so sick with ME/CFS that they are bed bound or home bound.

    So don’t worry – if the past is any guide post-COVID ME/CFS patients will be treated just like most ME/CFS patients have already been – they will be ignored and their suffering largely delegitimized and minimized.

  4. Lisa

    Long-haulers should treat themselves with ‘aggressive rest’ in the hopes of recovering their former level of function. I have pushed through ME, rheumatoid arthritis and fibromyalgia for far too long out of necessity. I keep getting worse.

  5. Nancy Blake

    The connection with exertion, therefore the importance of rest should be researched, but it won’t be, because who would make any money from telling patients what our grandparents told us: when you’re sick, go to bed and stay there until you’re better.

    We know viruses can remain latent and be reactivated, producing apparently unrelated outcomes: chicken pox to shingles, German measles to fetal damage, for example. Is this what is happening in long covid, when symptoms develop after the patient seems virus- free?

    We know that our immune system requires energy to fight a virus. But ‘sickness behaviour’, Nature’ s way of
    making us conserve our energy for use by our immune system has been stigmatised by psychiatry: CBT and exercise have replaced convalescence with ‘rehabilitation’.

    We myalgic encephalomyelitis veterans of decades-long incapacity and intractable pain often brought on by graded exercise look on with pity and horror at news clips of long term (three months!) covid patients collapsed over exercise bikes…. please don’t let what was, and still is done to us be inflicted on them!

    Ramsay’s patients given six months rest actually recovered. Today there is the occasional Facebook post: ‘My doctor just gave me a six month sick note and told me to go home and rest. I’m completely well now.’

    The 2015 IOM report on ME/CFS concluded that this is a disease of which the defining characteristic is that ‘exertion of any kind – physical, cognitive or emotional – may adversely affect many organ systems…’. (last sentence before the recommendation for the name ‘Systemic Exertion Intolerance Disease ‘).

    Rest, convalescence, good nursing care, beginning with guidelines for self care and home nursing , and continuing for the long term when needed must be the way forward.

    Ramsay, on ME:
    ‘The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.’
    (Ramsay, M. Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath.

  6. Kate Porter

    Thank you for covering this topic. I’m 35, almost at 7 months of lingering symptoms and was previously healthy.

    Amy Watson, a long hauler from Oregon is the first to label us “long haulers”. She created a group for us with that name — for those of us who connected back in April and realized we were far past the average 2 week period they claimed it would take to recover.

    Does Harvard have any plans to help uncover causes and potential treatment for these long term issues? We don’t necessarily fit the ME/CFS profile (some overlap but large differences as well).

    • Mary Smith

      I had all of the symptoms in February. But when they tested me for antibodies in June they were not present. I never want to ever be that sick again. I couldn’t taste or smell for over 6 weeks . I still ache and my hair continues to fall out. My brain was mush for months and I never had COPD stage 1 before. My brain is different and can’t make decisions. Anybody have any ideas?

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