Don’t give Covid-19 long-haulers the silent treatment

“I feel like I’m getting the silent treatment and it’s killing me,” Pamela Bishop confided in me about her months-long interactions with physicians as she tried to get answers about a strange array of symptoms that have plagued her since recovering from Covid-19.

As Covid-19 survivors and families careen into the months and years ahead, those with long Covid — long-haulers, as they’ve come to be known — face uncertainty and confusion given the array of unexplained and fluctuating symptoms that are remote from their original illness.

Up to one-third of Covid-19 survivors report experiencing long-Covid symptoms three to six months later. Their stories give me an extreme case of déjà vu.

As an ICU physician and scientist who has spent 30 years studying the ways acute illness creates chronic disease, the flippant dismissal that long-haulers often encounter echoes many clinicians’ responses to people living with post-intensive care syndrome (PICS), which is characterized by rapidly acquired dementia, post-traumatic stress disorder (PTSD), depression, acquired weakness and physical disability after being discharged from an intensive care unit. It’s the same stifling that patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia often describe.

While there’s much in common between people with long Covid and those with ME/CFS and fibromyalgia, one crisp scientific difference is that the problems of long Covid were triggered by infection with a specific, well-defined virus. What SARS-CoV-2 is doing to the human body to cause a chronic illness may be similar to the unknown cause of ME/CFS, for example, but that isn’t yet known. The clear link with SARS-CoV-2 does, however, give researchers a path to pursue.

To be sure, it’s early days for long Covid. There’s no consensus on what it is or how to treat it. But one thing is clear to me: It is essential to legitimize different patterns of chronic suffering that people incur while trying to pick up the pieces of their lives after acute Covid-19 infection.

I hope that patients, clinicians, researchers, and others can work together to create a framework for more constructive conversations and pave a way toward hope and healing for people with long Covid. The stories of three Covid-19 survivors, who are part of the Critical Illness, Brain Dysfunction, and Survivorship support group at Vanderbilt University Medical Center, where I work, highlight distinct categories of chronic disease that can arise in the wake of Covid-19. Ray Fugate has PICS, Pamela Bishop has long Covid, and Carolyn Rogers has PICS plus long Covid. (All three gave me written permission to share the details of their stories in this essay.)

Ray Fugate, who at age 51 almost died of Covid-related blood clots while on a mechanical ventilator, still experiences common PICS problems one year later. He needs to breathe supplemental oxygen, continues to work daily in rebuilding his physical stamina and strength, and has cognitive and mental health issues, though they are improving. The nightmares and anxiety related to his ICU experience are still there, but further in the rearview mirror. Yet that’s only a fraction of what happened to Pamela Bishop and Carolyn Rogers months after their “recovery” from acute Covid-19.

Pamela Bishop never got sick enough with Covid-19 to be admitted to the hospital. At what should be the pinnacle of her career — she has a Ph.D. in educational psychology and founded a research center to study STEM educational programs — she is now completely sidelined because of long Covid.

Bishop is a previously healthy athlete and mother of two who did all the right things to protect her family when, just before vaccines became available, she contracted the virus from her asymptomatic husband. Weeks after her illness, she felt fine and went back to work full time. About three months later, she developed difficultly connecting her thoughts at work and experienced a racing heart, dizziness, and sleep paralysis — problems that fall under a term called dysautonomia, an ill-defined disease of the nervous system. At age 45, Bishop now walks with a cane.

After myriad tests, none categorizing her as having a disease, she had no choice but to take an indefinite medical leave from her job. “After initially getting better, I’ve aged 10 years in 10 months. I’m so confused,” she told me.

Carolyn Rogers became infected with SARS-CoV-2 in the summer of 2020 at age 55. She spent four weeks largely immobilized in an ICU bed, and though she was never on a ventilator, she had delirium for more than two weeks. Afterward, she spent a week in a rehabilitation hospital and then went home to recover. Slowly but surely, recover she did. Her PICS symptoms of extreme muscle and nerve disease improved through physical therapy, which somehow reduced the cognitive impairment she had acquired. Surprisingly, she was able to walk long distances and return to work, thinking for a time that all was back to normal. But four months later the bottom dropped out.

“The problem is that everyone says the virus is gone. Yet my life is upended by a disease that seems unseen to everyone but me. I can’t work my computer anymore or lift a 20-pound box. I feel 10 years older,” Rogers said. “An even bigger problem is that the very people I would normally go to for help don’t believe me and just say I need an antidepressant.”

Rogers’s doctors persist in saying that her newly positive autoimmune tests, joint symptoms, tremors, and racing heart do not hit thresholds that qualify her as having any “real” disease, even though these are listed in the World Health Organization’s (WHO) recently published clinical case definition of post Covid-19 condition. This kind of disconnect leaves Rogers and millions like her hopeless and silenced.

“Peoples’ opinion of me went from trusted and reliable to complainer and confabulator. That hurts.”

Rogers has dual degrees in business and computer science. For more than 15 years she has worked in leadership positions in software and robotics, managing multimillion-dollar contracts along the way. Now she forgets her phone at home, has blackouts in memory, and has made enough costly mistakes at work that demanding responsibilities have been taken away and her days are now filled with mindless menial tasks.

“I can’t spell anymore. If you say you say, ‘See a blue sky,’ I write it down like water, S-E-A, and then B-L-U sky. It’s beyond embarrassing.”

The dilemma for Rogers is that she has two conditions, PICS and long Covid, neither of which she’s been told much about and both of which doctors are still trying to understand.

Among people who get acutely ill with Covid-19 and land in the ICU, more than 90% are discharged with PICS, which can last for months, or even years. The delirium Carolyn experienced increased her chances of developing a type of dementia known as Alzheimer’s disease and related dementias (ADRD), which affects more than 30% of ICU survivors. Other important aspects of PICS include depression and PTSD, as well as debilitating weakness from muscle and nerve problems. Rogers couldn’t climb even two steps when she left the ICU.

Her second set of symptoms, not explained by PICS, is long Covid. She experienced a definitive improvement during the first several months after leaving the hospital, then a few months later experienced a precipitous decline in her cognitive and physical abilities not explained by any acute illness.

Ever since treating my first patient with PICS in the 1990s, a young woman named Teresa Martin whose harrowing story I tell in a new book, “Every Deep-Drawn Breath,” I’ve made it my vocation to identify, study, and improve the lives of ICU survivors. I have cared for thousands of patients with PICS-related dementia, PTSD, depression, and weakness following their ICU stays, and I have never seen in them what is happening to Covid-19 survivors months into recovery.

Long Covid is a distinct problem that was originally conceptualized by patients. It can occur regardless of how ill someone was with their original SARS-CoV-2 infection. As with Bishop and Rogers, symptoms tend to develop about three months later. These include utter exhaustion, shortness of breath, and brain fog that affect everyday life. The symptoms of long Covid tend to come and go, and at times entirely new waves of problems arise without warning.

Rogers descended from one chronic disease (PICS) into another (long Covid), but a neurologist told her she was merely fabricating problems. Another doctor told her she was hysterical and needed a psychiatrist. Rogers told the Covid survivor support group that she feels invisible because no one seems to really see her as a person. Instead, she’s become a set of unexplained problems that no one understands.

Is the virus reprogramming the immune system to speak gibberish, causing dysregulation of many body systems? Many long-haulers talk about aging rapidly, a post-viral problem that has been well-described. HIV, another RNA-based virus like SARS-CoV-2, for example accelerates features of biological aging, in some cases by 10 years — exactly the amount Bishop and Rogers say they’ve aged. Accelerated aging of the immune system is suspected to occur in some people following Covid infection.

The organs in a healthy human body synchronously operate as a harmonious symphony. Elegant cross talk between organs is orchestrated by the profoundly complicated immune system. Early data suggest that in some Covid-19 survivors, the virus causes immunosenescence, a “graying” of these processes, which could explain why Bishop and Rogers have such a different set of problems than Ray Fugate has.

Medicine must always move forward based on facts, of course, but it can’t leave patients behind as clinicians and experts decide whether to “believe” their symptoms. When enough people are going through the same thing, it’s a sign to pay attention and give them a voice.

Instead, many long Covid patients feel stonewalled. Socially isolated. Ghosted. Writing in The Atlantic, journalist Daryl Austin describes what people experience when they are given the silent treatment, and it is exactly how Pamela Bishop and Carolyn Rogers feel about how they were treated. Ray Fugate did not feel this way because he learned about PICS through our survivorship clinic, where Dr. Carla Sevin and Dr. Jim Jackson affirmed and validated his problems. In contrast, people with long Covid are often discredited as the experts of their own disease, which is unintentional yet covert abuse. It would be helpful if we recognized this as a form of testimonial injustice, since being silenced inappropriately causes visceral pain, anxiety, and stress, ultimately exacerbating disease.

The harm extends to healers: I feel gutted and ineffective as a healer when, out of self-doubt, I diminish a patient’s complaints. When doctors don’t understand a disease, their insecurities flare and they get quiet. It leaves patients feeling helpless, alone, and dismissed. This happens with long Covid patients. Talking openly about what I do not know allows me to dive deeply into relationships with my patients. Then the healing begins.

As I work with people who are recovering from Covid-19 and talk with them about what they might expect going forward, I first tell them that everyone wants them to achieve full recovery. Then I tell them about three possible patterns of chronic suffering that have emerged in the pandemic: PICS, long Covid, or a combination of the two. Though each one alone can completely dismantle someone’s life, the combination of these two tempestuous disabilities is especially challenging. First, doctors have a very difficult time distinguishing the two sets of problems from one another diagnostically, and second, the management and recovery from such a quagmire of symptoms is daunting.

I regularly ask people with PICS, long Covid, and the combination what they want from their doctors. They all say the same thing: “I don’t want to have an invisible disability.”

“First, I want someone just to listen,” Rogers says. “Second, I want my doctors to say that I’m not making this up. That I have a very real set of problems even though testing doesn’t confirm or define them. Third, I want them to admit that they don’t understand my chronic disease, and that they won’t abandon me even though they feel uncomfortable not having solutions for me. And lastly, to be assured that researchers won’t stop until we have treatments.”

Meanwhile, there is a lot that can be done for people with long Covid. Approaches to life after being discharged from an ICU have been created for survivors with PICS. The same is being done for long Covid patients by numerous advocacy groups such as Survivor Corps and Patient-Led. Support groups are growing rapidly and must continue to expand, since they provide a lifeline of community and validation for survivors and loved ones. Flexible work schedules are a must.

It’s time to stop reinventing the wheel and living in thought silos. Experts need to learn from people in other fields, joining hands to do a better job understanding illnesses that don’t fit in to perfect boxes.

That has been the plight of ME/CFS and fibromyalgia patients for decades, and those same mistakes must not be repeated. The Ray Fugates, Carolyn Rogers, and Pamela Bishops of the world deserve better.

E. Wesley Ely is a critical care physician, professor of medicine and critical care at Vanderbilt University Medical Center, associate director of aging research at the Tennessee Valley Veteran’s Affairs Geriatric Research, Education, and Clinical Center, and author of “Every Deep-Drawn Breath” (Scribner, September 2021).