Chronic fatigue. Exertional dyspnea. Myocarditis. Hypercoagulopathy. Brain fog. Muscle aches. Paresthesia. Altered sleep patterns. Psychiatric disorders. Lung scarring. Gastrointestinal issues. COVID toes. Hair loss. These are but a handful of debilitating conditions recovering SARS-CoV-2 patients are battling. For the large part of the COVID-19 pandemic, the medical community has been scrambling to just keep sick people alive. Now, it’s trying to help those survivors live with disabilities secondary to viral infection.
What’s strange is that many of these long haulers are otherwise previously healthy, young people, and severity of illness doesn’t seem to be a strong indicator of what disabilities a patient may develop. The most common enduring symptom found in this population is debilitating fatigue. Even conditioned athletes accustomed to running 10ks pre-infection can hardly make it to their kitchen without feeling completely drained of energy. A number of studies indicate that anywhere between 78% to 87% of survivors continue to experience a range of symptoms for weeks post-recovery.1 Normal life as they knew it has ceased to exist.
“There's been a slow gathering of casualties from this virus who should not be casualties,” says Ken Scheppke, MD, state EMS medical director for Florida and chief medical officer for Palm Beach County Fire Rescue. Scheppke conducts literature research and provides updates on the latest scientific developments on COVID-19 to EMS agencies and the Florida Department of Health. Scheppke saw patients as early as March who were taking weeks to recover, which turned into months, prompting him to dive into the literature and research potential causes of these lingering symptoms. He discovered that many of the patients were moving towards meeting the criteria of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a lingering condition known to be associated with viral infections, but never in the numbers of patients we are beginning to see with this pandemic.
Insight can be drawn from studies on the SARS-CoV-1 epidemic, despite its impact being far smaller in scale than its modern cousin. There were a little over 8,000 cases globally during the 2002-03 outbreak, 774 of which resulted in death.2 In one study Scheppke reviewed, nearly 27% of a group of 369 survivors of SARS-CoV-1 developed chronic fatigue syndrome and 40% still exhibited other symptoms years after infection. It’s critical to educate the public so people understand catching this virus isn’t a way to get it over with, because even if it doesn’t kill you, it may leave you disabled, potentially for months, if not years, says Scheppke.
At the time of this writing, there are 27,628,190 cases of the novel coronavirus worldwide, 18,590,528 recoveries and 898,456 deaths worldwide.3 The magnitude of illness our world is facing suggests we may be seeing massive numbers of patients with ME/CFS or other lingering symptoms that could place an immense burden on healthcare and financial systems, not to mention stress on people’s personal lives—their families, careers, mental health. A study out of Canada examined 21 healthcare workers who had developed the syndrome after contracting SARS-CoV-1. Their fatigue was so severe that some were unable to return to work for at least 13 months while others needed up to 36 months.4 Scheppke says if the clinical outcome of the novel SARS-CoV-2 coronavirus is similar enough to SARS-CoV-1, “then the world's population is at tremendous risk. We need to do whatever we can to minimize the spread of this illness until medicine and science can catch up with vaccines and antivirals so that people don't get this virus. This pandemic could have echoes for decades if we let too many people get infected and we end up with a large cohort of disabled people.”
Shifting the Spotlight
Scheppke says ME/CFS has been a side effect of a number of viruses, including SARS-CoV-1, Epstein-Barr virus and Ross River fever. However, because the percentage of those who experience ME/CFS is relatively low, mainstream medicine hasn’t focused enough energy researching the condition. But now, it’s impossible to ignore.
“Now is the time for medicine to turn its collective eye towards this post-viral syndrome and figure out what’s going on so we can help these poor people suffering with this illness,” says Scheppke, adding that while it’s important to inform the public of the risk of death from COVID-19, we must also warn them that other risks exist, especially for young, healthy people who may think they’re less vulnerable than older adults or those with comorbidities.
“We don't know whether you're going to be one of these sufferers who's going to have long-term disability,” Scheppke says.
When the medical community had little time to catch its breath at the height of the pandemic, many long haulers felt dismissed by their physicians or perhaps seen as less of a priority than the critically ill, so they took matters into their own hands. Online support groups sprang up worldwide, joined by hundreds of thousands suffering weeks to months after contracting the virus. Many are experiencing a “cyclical pattern of illness,” in which symptoms wax and wane. While this is disheartening for the long haulers, Scheppke says there is hope, noting that people are indeed getting better, albeit slowly. Plus, treatments like remdesivir and dexamethasone have been successful with some patients and vaccine trials are going well. Recovered COVID-19 patients can also donate their convalescent plasma to provide antibodies to help the severely ill fight off the virus. If people continue wearing masks and practicing physical distancing, it buys scientists more time to find even better treatments.
While no cure exists for ME/CFS, those living with the syndrome are encouraged to get plenty of rest and to learn to pace their level of physical activity, as they often crash 12 to 48 hours post-exertion. Some people with ME/CFS have muscle aches, and acupuncture has shown to reduce pain. But overall, there’s simply not enough research available on this condition, says Scheppke. “If there is a silver lining in this bad news, my suspicion is that medicine is going to put a spotlight on this particular disease in the future because so many people are experiencing this post-viral syndrome. We're going to have to address this,” he says, which he anticipates will also help others who have been dealing with the syndrome from other viruses. “Hopefully we'll have better news for these folks down the road.”
Theories posited by scientists and physicians to explain the long hauler syndrome suggest some people have a “reservoir of a live virus” that’s beaten down by the immune system enough that tests can’t detect it but it still impacts the body, or the immune system isn’t able to fully rid the virus in certain organs where the virus takes a particularly strong hold. Some think there are viral fragments that remain in the cells, causing inflammatory responses that produce symptoms; others speculate the virus is completely out of the body, but it alters the immune system, leaving it in an overreactive state, Scheppke says. He also has a theory that the virus damages the mitochondria (the powerhouse of the cells), resulting in a deficit of energy production ultimately causing a state of chronic fatigue. Scheppke notes it’s important that we continue creating theories to prove or disprove so we can find answers.
“Though we initially curbed the spread of the virus by shutting down society and asking people to stay home, closing the economy is not a sustainable method of risk mitigation,” says Scheppke, as it’s created a litany of other public health crises, such as increases in drug overdose deaths, domestic violence and suicide rates. But it’s important—and encouraging—to remember that this way of life will not be permanent if everyone abides by the mitigation measures so that the virus is starved of new hosts.
No Place Is Too Safe for EMS
From day one, EMS providers have been on the front lines of the pandemic alongside their hospital partners, and many have contracted the virus from exposure to infected patients. While we diligently donned PPE before calls, we may not have been as diligent around each other.
“This has a tremendous impact for EMS as a culture,” says Scheppke. “We are very good at protecting ourselves from our patients who are sick. We are not as good at protecting ourselves from ourselves when we're at the station.”
In Florida, Scheppke says the COVID-19 test positivity rate rose at one point to 15%, meaning the community spread of the virus is so widespread that the odds of a crew member unknowingly bringing the virus into their station are high enough to call for physical distancing and mask-wearing even among fellow providers. “You've got to view each other as potential vectors of the virus,” he says. “Our own internal data in Palm Beach County shows our folks are not catching it from patients—they're likely catching it from each other in the station. They're part of the community spread.”
To mitigate the spread among crews, Palm Beach County mandates that they wear masks at the station. Treat the virus like it has no fence around it, says Scheppke, as many people who spread it either never develop symptoms or it's transmitted in the few days before they start exhibiting symptoms. “We want to decrease that risk, so that's our policy. Hopefully all of our colleagues in EMS will follow that type of policy, because the risk is real,” he says. “It’s true, the risk of death is relatively low in the young, healthy population, but we have the added risk of the long hauler situation. This is a very humbling disease. We're learning new dangers about it every single day. There may be other bad outcomes that we haven’t even recognized yet. So why take the risk?”
While EMS providers are an at-risk population because they’re on the front lines, Scheppke says they’re also considered an ideal vector for COVID-19 because they go back and forth between two populations: their work families and their families at home. With first responders living together in a firehouse or EMS station for extended periods of time before returning home to do the same thing with different people, it’s imperative that risk mitigation measures be taken seriously, as people in both of these populations may be practicing different degrees of discipline with respect to protecting themselves and others from the virus. “We all need to have this discipline because EMS is right in that profile of the young, healthy population that could potentially get this long hauler illness,” says Scheppke.
“We're only as good as our weakest link,” he says. “We have to continue physical distancing and wearing cloth masks. Those are two easy mitigation measures we need to do for the next six or nine months until we have enough medical tools at our disposal to wipe out this virus.”
COVID-19 Long Haulers: Who Are They?
EMS World spoke with just a handful of the thousands of those still suffering from the aftermath of COVID-19.
Karyn Bishof, 30 years old, firefighter/paramedic, Boca Raton, Fla.
Current symptoms: Chronic fatigue, low grade fever, dysautonomia, neurological issues, worsened vision, headache, secondary infections, tremors and neuropathy, dizziness and vertigo, insomnia, joint pain and body aches, light sensitivity
“If you are sick, speak up and stay home. Do the right thing and alert others regardless of the consequences,” says Bishof. “Hold those not doing the right thing accountable. Wear your mask, wash your hands, socially distance. This is not a cold or flu. There’s no guarantee you will be better in a few days to a week and you may likely end up with potentially life-long issues like myself.”
Scott Cohen, 48, retired police medic, Long Island, N.Y.
Tested positive: March 31
Initial symptoms: Chills, sore throat and chest congestion, inability to take deep breaths; progressed to tachypnea and hypoxemia. Hospitalized for 27 days; intubated for 10 days. Four months later: impaired lung function, persistent cough, and a mild case of COVID toe on one toe with partial feeling.
Current symptoms: Cough and exacerbation of pre-existing sinusitis
“Over the years, like many first responders, I have become desensitized to many things,” Cohen says. “I was more concerned about my wife and kids if something happened to me. I remember being in severe physical pain, discomfort, and an inability to breathe. I received convalescent plasma which the doctors believe saved my life."
“My wife has been a rock during this time, even though she and our three sons all had COVID-19 while I was in the hospital. My father and I were both in the same ICU at the same time for COVID-19. He passed and was buried while I was still on a ventilator. I tell this story for those disbelievers out there in hopes that they will reconsider their obligation to their family, friends and everyone around them.”
Tracy Eisen, 34, registered nurse, Phoenix, Ariz.
Tested positive: April 23
Initial symptoms: Loss of sense of taste and smell, sore throat, congestion, productive cough
Current symptoms: Severe brain fog and memory loss
“I frequently feel brain fog and forget my train of thought while I'm talking. It's awful as a nurse because sometimes I'm talking to a patient and suddenly cannot remember the point of my conversation," says Eisen. "It makes me anxious because my memory used to be excellent. I struggle with fatigue to the point where sometimes I feel like I cannot even find the energy to open my eyes."
"I still have nightmares of patients gasping for air, whispering 'Help me,' to me, a complete stranger, but we are their sole hope for comfort and recovery. My heart continues to break for the families that cannot be with their loved ones in the hospital. Every day I do whatever I can to help educate and comfort those who are suffering or do not understand the virus.”