It’s been a year and a half since Rebekah Hogan got COVID working as a nurse, and she has since seen more specialists to provide some relief from long COVID than she can count.
She sees her primary care doctor every four weeks, largely to get the documentation she needs to apply for continued disability benefits. She’s seen pulmonologists, cardiologists, neurologists, rheumatologists, endocrinologists, psychiatrists and neuropsychiatrists. Hogan’s long COVID symptoms run the gamut, from severe nerve pain to exhaustion. Her brain fog is so severe, she jots down why she is making phone calls before she dials so she doesn’t forget. She no longer drives.
“I’ve done all the tests, I’ve gone to all the doctors. Nothing gets better,” Hogan said.
“Nothing comes of it,” she continued. “Nothing comes of anything.”
Hogan is one of countless individuals. It has been two years since the first COVID long haulers began alerting the rest of world to their condition, and many still feel stranded. They worry that now that post-omicron, there are millions more people who are going to start facing what they’ve faced — and we’re no better prepared than we were two years prior.
“People are beyond frustrated. They’ve been left behind. If COVID has been our greatest battle, these are the people who’ve been left on the battlefield,” said Diana Berrent, founder of Survivor Corps, a support group for COVID survivors that Berrent says has more than 200,000 members.
“It’s finally getting more attention, but that’s not going to heal anyone. That’s not going to get anyone back to work,” she said. “We’re pretending the pandemic is over, but it’s not.”
“It’s finally getting more attention, but that’s not going to heal anyone. That’s not going to get anyone back to work. We’re pretending the pandemic is over, but it’s not.”
– Diana Berrent
A Frustrating Journey To Understand The Root Causes Of Long COVID
Among the many challenges facing long COVID patients and researchers is simply that two years into the pandemic, we don’t even have a clear consensus on what defines long COVID.
For example, the Centers for Disease Control and Prevention and World Health Organization have different timeframes for when it starts and how long it lasts. (The CDC says some patients have symptoms that last weeks or months after their initial infection; the WHO says the symptoms must last at least two months to be considered long COVID.) We don’t even have a clear-cut answer on what to call it: There’s long COVID, post COVID and Post-Acute Sequelae of SARS-CoV-2 infection, or PASC.
More frustrating still, experts still do not fully understand what causes some people to develop long-term symptoms while others recover.
“It’s important to know where we are and where we are going. We still don’t know the mechanisms of the disease. We don’t have an official definition,” said Dr. Fermando Carnavali, an internal medicine physician who works with long haulers at the Mt. Sinai Center for Post-COVID Care. “Uncertainties are everywhere. Despite everything that we have tried, we don’t have a laboratory test that can identify conditions and etiologies of post-COVID.”
And the range of long COVID symptoms reported by patients is huge. Fatigue and “brain fog” sit atop the list, but patients also struggle with everything from heart palpitations to debilitating nerve damage. Some people do not regain their ability to taste or smell for months; others with parosmia find everything they eat tastes like sewage. There’s also emerging evidence that the neurological impact of long COVID is more serious than experts initially realized, leading to Alzheimer’s-like damage to the brain.
Yet among medical professionals like Carnavali, there is a quiet sense of optimism that some forward progress has been made. He said that his institution and others are “heavily invested” in tackling questions about what causes long COVID and how to treat it, as well as how to better support patients in the here and now.
“We’re absolutely better prepared now, mainly because the medical community has a general consensus on the main screening symptoms long haulers suffer from,” explained Dr. Marjan Islam, co-director of the COVID-19 Recovery (CORE) Clinic at Montefiore Health System in New York.
Islam pointed to research linking long COVID with myalgic encephalitis ― or chronic fatigue syndrome ― which causes extreme, lasting fatigue and at the very least has a clear overlap with many of the symptoms long COVID patients experience. Understanding long COVID through the lens of chronic fatigue gives health care providers a set of shared therapies to try, Islam said, and can also help organize research.
At the same time, he acknowledges the disparities in care patients are able to access, especially if they’re nowhere near one of the many post-COVID centers that have cropped up in hospitals and research facilities around the country. He believes seminars and other types of professional education could help instill best practices on how to treat patients grappling with chronic fatigue symptoms.
“The health care system still does not have enough experience with long COVID where there are enough physicians available who understand the disease and know the treatment and management principles,” Islam said.
Patients with long COVID not only have to fight to get the medical care they need; many have spent months fighting for disability benefits, which can be particularly challenging because many of the symptoms of long COVID are difficult to “prove.” Long haulers report being denied because insurance carriers say their symptoms are insufficiently serious, even with doctors’ notes detailing their condition.
“The health care system still does not have enough experience with long COVID where there are enough physicians available who understand the disease and know the treatment and management principles.”
– Dr. Marjan Islam
For Patients, Help Is Agonizingly Slow
Despite the optimism of some researchers, many people with long COVID feel like they’re no better off now than they were at the start of the pandemic. Given how challenging it can be for patients to access any kind of meaningful help, Kate Porter, 37, thinks of herself as one of the lucky ones.
She tested positive for COVID at the start of the pandemic, as did her daughter who also struggled with long COVID for months. Her symptoms have been wide-ranging. As she puts it: There have been “so many weird things going on in my body.” Extreme fatigue sits near the top of the list. At points during her experience, Porter has been so wiped out by simply doing some basic chores around the house she’d end the day utterly unable to move.
Now, she feels like she’s 85-90% back to where she was before COVID hit, which she attributes in part to a medication she is taking that is traditionally prescribed to HIV patients. Some doctors are prescribing off-label regimens for patients that are not without controversy. In the absence of effective treatments along with challenges getting into post-COVID care centers, some people with long COVID are turning to unproven therapies and interventions in the hope of getting some kind of relief.
They’re also accepting that they may never get back to who they once were or how they once felt. “I don’t know that ever be 100% back to to my pre-pandemic normal, but I’m at least functional. I’m able to work again,” Porter said.
While she is heartened by the fact that more people are talking about long COVID, as well as the existence of long COVID care centers, she worries too many people are falling through the cracks.
“This is affecting so many people. It’s ruining the lives of so many people,” she said.
At the height of the omicron surge, the United States was seeing more than 800,000 cases a day ― likely an underestimate, given how many people were testing at home. Porter often wonders many of those people will be dealing with symptoms months down the line. Where will they get help, especially when it has been so difficult to come by already?
At the two-year point in the pandemic, there is an obvious tension between where many experts think we’re headed in terms of being able to better support those with long COVID, and what patients feel.
“They’re used to lengthy studies and protocols,” Porter said. “But from a patient perspective, a lot of us can’t afford to wait for that timeline. That’s where this disconnect is.”
Doctors like Carnavali acknowledge the tension, and said a lot of the work his team at Mt. Sinai does now is to try and adjust expectations. They make it very clear to their patients that they are now living with chronic illness, and they tell them that very directly. The goal is not to make them feel hopeless; it is to validate what they have gone through, and acknowledge that the road ahead is long and uncertain.
“I have seen a couple of patients when I say that, they look at me with complete surprise,” Carnavali said. “These are people who have been suffering for two years. I think that part of the surprise comes from the fact that we have approached this with the hope that we can do a couple things and you’ll feel better, or it will go away, but what we know now is that it does not necessarily go away.”
It’s becoming increasingly important to reach out to your primary care physician if you have symptoms you cannot explain and that are not going away. And Carnavali emphasized again that the COVID care centers that have cropped up around the country are able to try and address the full range of patients’ mental and physical conditions. For patients seeking answers, they can be an important place to start.
Still, many long haulers say they worry the research is moving too slowly, that access to specialists and treatments is still uneven, and that the rest of the world still does not understand that we are in the midst of a mass-debilitating event.
“My fear is there’s no fixing it,” Hogan said. “And people are just going to have to learn to live with these symptoms.”
Experts are still learning about COVID-19. The information in this story is what was known or available as of publication, but guidance can change as scientists discover more about the virus. Please check the Centers for Disease Control and Prevention for the most updated recommendations.