POST 209. October 28, 2021. CORONAVIRUS. “The quest at Mount Sinai began with a mystery.”…”America was not simply struggling to contain a once-in-a-century pandemic, caused by a virus far more dangerous than seasonal influenza. Many patients were, for unknown reasons, not recovering.”

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DISCLOSURE: I have been on the voluntary faculty of the Icahn School of Medicine at Mount Sinai for over 40 years.

“The quest at mount sinai began with a mystery. During the first wave of the coronavirus pandemic in New York City, Zijian Chen, an endocrinologist, had been appointed medical director of the hospital’s new Center for Post-COVID Care, dedicated both to research and to helping recovering patients “transition from hospital to home,” as Mount Sinai put it. One day last spring, he turned to an online survey of COVID‑19 patients who were more than a month past their initial infection but still experiencing symptoms. Because COVID‑19 was thought to be a two-week respiratory illness, Chen anticipated that he would find only a small number of people who were still sick. That’s not what he saw.

“I looked at the number of patients that were in the database and it was, I think, 1,800 patients,” he told me. “I freaked out a little bit. Oh my God, there’s so many patients telling us that they still have symptoms.” A realization dawned on him: America was not simply struggling to contain a once-in-a-century pandemic, caused by a virus far more dangerous than seasonal influenza. Many patients were, for unknown reasons, not recovering.

“We didn’t expect this from a virus,” he continued. “We expect that with viral infections as a whole, with few exceptions, you get better.” Many patients who spend significant time in an ICU—whether battling an infection or recovering from a stroke—do require further treatment even after they are released, because they suffer from something called post–intensive care syndrome, often characterized by weakness and cognitive problems. But that didn’t explain the group Chen was looking at. Startlingly, most had had mild cases of COVID‑19—they had neither been hospitalized nor developed pneumonia. Before contracting the virus, many had had no known health issues. Yet they were reporting significant ongoing symptoms—“shortness of breath, heart palpitations, chest pain, fatigue, and brain fog,” Chen told me.

Chen quickly convened a multidisciplinary group of clinicians. The team began triaging patients with ongoing symptoms, referring them to specialists and teasing apart the causes. There were patients of all ages and backgrounds, with a wide array of problems, from persistent loss of taste and smell to chest pain. Some patients had been seriously ill, and they typically had the lung scarring, or fibrosis, that comes with COVID pneumonia; they were referred to pulmonologists for follow-up care. Others had readily observable heart problems, including myocarditis, an inflammation of the heart muscle, and were referred to cardiologists. Still others had blood clots. The extent of the damage COVID‑19 had done to them was highly unusual for a respiratory virus—and deeply alarming. But, Chen told me, “those were actually the luckier patients, because we could target treatment toward that.” (A)

“In April 2020, because of the overwhelming number of patients we had, I was pulled from my regular duties as a neurologist and asked to take care of patients on a COVID-19 unit in the hospital. It was my first experience seeing how sick people were and the extent of harm the virus could cause. Given the severity of illness, we were concerned that many people would need long-term care.

So my institution, Mount Sinai, decided to open one of the first multidisciplinary centers for post-COVID care. I was asked to be the lead clinical neurologist for the center. Since then, I have personally seen several hundred long COVID-19 patients and worked on research studies with the aim of untangling the complexities of what is happening with the condition.

While data on long COVID-19 has started to emerge, less is known about the neurological symptoms. The most common neurological symptoms appear to be cognitive changes, including “brain fog” – such as sluggishness and lack of sharpness – as well as headaches, sensory changes, muscle or nerve pain and loss of smell.

We are also seeing many cases of “dysautonomia,” or impaired regulation of the nervous system that controls heart rate and blood pressure – the “fight or flight” part of the nervous system. This condition can lead to sensations of a racing heart and dizziness.

Part of the challenge in understanding long COVID-19 is that many of the symptoms, like fatigue and brain fog, can stem from a variety of conditions from hormonal or metabolic changes to sleep disruption or depression. Trying to determine a direct line between cause and effect in the general public, regardless of COVID-19 infection, often does not lead to clear answers…

What’s more, many diagnostic tests come back normal, or they show common and nonspecific changes. We are not observing widespread strokes, lesions or inflammatory changes on imaging. We may see small changes in blood vessels, known as microvascular ischemic changes, but these are extremely common in anyone with high blood pressure, diabetes or even migraines. And tests of the nerves in the arms and legs may show damage in some cases – what we call neuropathy. But that is not always the case, and these can occur regardless of COVID-19 status. This makes it challenging to draw a direct link to COVID-19.

This doesn’t mean we are at a complete loss about what is happening. The constellation of symptoms resembles a post-viral syndrome, which refers to prolonged symptoms after an infection. Sometimes the infection might be from a known source, such as Epstein-Barr virus (which causes mononucleosis), but often symptoms follow a general viral illness.

Many people suffering from those conditions will report experiencing some viral-type illness and afterward having persistent fatigue, brain fog and other symptoms that we now often see with sufferers of long COVID-19. The similarity in symptoms suggests that long COVID-19 may not be unique to COVID-19 but rather a general post-infectious process…

The ultimate goal in understanding long COVID-19 is to figure out how to prevent it from happening – and prevent as much suffering as we can. While I have seen people get better from long COVID-19, I have many patients who continue to suffer over a year later. It has also affected the health care workers whose goal is to help others heal, but are left with few answers to provide. Until research yields more answers on what could be causing long-COVID, we are left with trying to minimize symptoms and waiting.” (B)

“Symptoms of COVID-19 persist or recur months after diagnosis for more than a third of all people who get the illness, a new study finds, potentially pushing the number of so-called long COVID cases higher than previously thought.

In the study published Tuesday in the journal PLOS Medicine, researchers found that about 36% of those studied still reported COVID-like symptoms three and six months after diagnosis. Most previous studies have estimated lingering post-COVID symptoms in 10% to 30% of patients.

The study, led by University of Oxford scientists in the United Kingdom, searched anonymized data from millions of electronic health records, primarily in the United States, to identify a study group of 273,618 patients with COVID-19 and 114,449 patients with influenza as a control.

Some patients had symptoms months after having none at all

Although long COVID is poorly defined, the researchers looked at such symptoms as chest/throat pain, abnormal breathing, abdominal symptoms, fatigue, depression, headaches, cognitive dysfunction and muscle pain.

“The research found that over 1 in 3 patients had one or more features of long-COVID recorded between 3 and 6 months after a diagnosis of COVID-19,” the authors concluded.

The researchers also found that of those who had long COVID three to six months after diagnosis, roughly 40% had no record of such symptoms in the prior three months.

Long-haul symptoms for COVID seem to be hitting more often than they do for the flu

Months after the pandemic began, scientists, including Dr. Anthony Fauci, the nation’s top infectious disease expert, warned about a post-viral syndrome that was showing up in people who had recovered from COVID. That led some to compare the symptoms experienced by many following COVID-19 to the same experience that some people have after other viral infections, such as the flu.

But the new study concludes that the chances of getting COVID-19 symptoms months after the acute stage of the illness was more than twice as high as for influenza.”  (C)

“Interestingly, long COVID-19 can be associated with the persistence of one or more symptoms that patients experienced while infected with COVID-19, or it could also be associated with the development of entirely new symptoms. Typically, two main patterns of symptoms have been associated with long COVID and can be divided into two categories of general malaise symptoms and upper respiratory complaints or multi-system complaints.

The first category of long COVID symptoms includes fatigue, headache, shortness of breath, sore throat, persistent cough, and loss of smell. Profound fatigue, in particular, is a common symptom of long COVID that some studies have shown affects more than 50% of patients who have recovered from COVID-19. Comparatively, the multi-system complaints can range from ongoing fever to gastroenterological symptoms such as nausea, vomiting, and diarrhea.  

Pathophysiology. Several different mechanisms have been proposed to be responsible for long COVID, some of which include: Persistence of chronic inflammation; Immune response; Persistence of virus in the body; Nonspecific effect of hospitalization; Sequelae of critical illness; Post-intensive care syndrome; Complications related to comorbidities; Adverse effects of medications; Persistent viremia in immunocompromised individuals; Re-infection/relapse

Psychological issues. Post-viral fatigue, which is one of the most commonly reported complaints associated with long COVID-19, has been reported in patients who have recovered from many other viral infections. More specifically, this persistent symptom has been reported following recovery from the Ebola virus, the severe acute respiratory syndrome (SARS) of the 2002 epidemic, the Middle East Respiratory Syndrome (MERS), as well as the Ebstein-Barr Virus (EBV)…

Overall, scientists believe that the symptoms of both long COVID and long Ebola are due to the inability of the body to clear the virus. By remaining inside various reservoirs, these viruses can continue to induce local inflammation. As the viruses multiply in these areas, they periodically return to the bloodstream, where they can trigger more macroscopic immune reactions and accompanying symptoms.

Aside from this hypothesis, scientists have also suggested that SARS-CoV-2 may even trigger an autoimmune reaction to arise in some patients. This proposed mechanism may even be gender-specific. More specifically, women, who are already more vulnerable to developing autoimmune diseases, have been reported to be more likely affected by long COVID. To confirm the possible autoimmune mechanisms of COVID-19, researchers are currently looking to identify patients with circulating autoantibodies to identify whether these antibodies are causing these long symptoms.” (D)

“Without knowing that base, some doctors are treating long-haulers in unhelpful and frustrating ways. A few months ago, Athena Akrami’s husband, who is also a long-hauler, developed vertigo, dizziness, and other signs of POTS—a disorder of the autonomic nervous system that is common in long-haulers. POTS can be diagnosed by monitoring a patient’s heart rate and blood pressure as they stand up, but because most doctors don’t know to do that, Akrami’s husband received a series of incorrect diagnoses—including earwax buildup. He was diagnosed correctly only after he saw a cardiologist who specializes in POTS. Akrami wants agencies like the CDC and the WHO to develop guidelines that tell doctors how to recognize and test for POTS, ME/CFS, and other conditions that many long-haulers develop.

Ignoring these conditions can be disastrous. Many physicians are putting long-haulers on exercise regimes. But if patients have post-exertional malaise, exercise can lead to extreme physiological crashes—a truth that the ME/CFS community learned the hard way. “Obviously, you don’t want people to retire to bed and never get out,” Hanson told me, “but if ME/CFS patients repeatedly go past a certain level of exertion, they usually get permanently worse.” For years, such patients were told to exercise (or get psychological therapy), in large part because of a now-discredited study called the PACE trial. The damaging influence of that trial has taken years to undo—the CDC has removed recommendations for exercise therapy for ME/CFS, and other countries are updating their guidance—but several long-COVID clinics, seemingly unaware of this ongoing controversy, are now repeating the same mistake. “We’re continuing to see patients being told to exercise their way out of it,” McCorkell told me.

A condition as complex and wide-ranging as long COVID is unlikely to be cured by any one medication. But some clinics are successfully helping long-haulers manage their most debilitating symptoms. “Almost every single person I’ve seen is getting better, including the most severe situations where it seemed hopeless,” Lekshmi Santhosh of UCSF told me. The mere promise of help is itself helpful, as is the simple acknowledgment that their symptoms are real. “They want someone to try for them,” Denyse Lutchmansingh said.

But there aren’t enough long-COVID clinics. Many have lengthy wait lists, or accept only patients with positive tests, or are connected to large universities and too distant from long-haulers in rural areas. And medical help of any kind is hard to secure when people can’t work. In the Patient-Led Research Collaborative’s first survey, conducted last fall, 45 percent of long-haulers were working reduced hours and 22 percent couldn’t work at all. “People are losing their jobs because their employers aren’t letting them take reset breaks, or requiring in-person work,” Vázquez told me. “If you have a fatiguing chronic illness, the commute alone is going to zap your day.” (E)

“Lisa O’Brien, a 42-year-old financial analyst who has been sick with COVID-19 symptoms for more than 135 days, suspected she had blood clots after reading her friend Hanna’s story in an online support group. O’Brien’s concerns were initially dismissed by a doctor who advised that she take anti-anxiety medication and seek teletherapy.

But one week later, she went to the ER and insisted on a blood test recommended by Hanna. In a series of two appointments, doctors found two blood clots and prescribed blood thinners. “Shockingly, there were four of us that found blood clots in our lungs that same week,” O’Brien said in an email.

O’Brien recently connected with Mount Sinai’s precision recovery program, which monitors symptoms of long-term COVID-19 patients. She checks in with a clinician once a week. She wants other long-haulers to know that even if they test negative for the virus (as she did), they should still advocate for themselves and seek treatment. After all, early research suggests that diagnostic tests for SARS-CoV-2 may result in false negatives up to 30% of the time, especially if it’s been more than a week since your symptoms first appeared.

In New York City, Mount Sinai has also opened the Center for Post-COVID Care, the first of its kind, which launched on May 13th. So far, 250 to 300 patients have been admitted.

Zijian Chen, M.D., the medical director of the center at Mt. Sinai, says his team aims to tailor personalized treatment plans for long-term COVID-19 patients while studying their symptoms in the hopes of understanding what’s causing them and improving treatment regimens. Since mounting evidence suggests COVID-19 has multiple systemic complications, the team includes specialists in primary care, pulmonary medicine, cardiology, infectious disease, nephrology, physiatry, physical and occupational therapy, radiology, neuropsychiatry, behavioral health, social work, and pharmacy.

While there’s still so much to learn about COVID-19, one thing that stands out to Dr. Chen is that beyond cardiac and pulmonary issues, many patients have neurological symptoms that can be debilitating, like Bishof’s extreme fatigue and trouble concentrating.

Today, Bishof continues to experience chronic symptoms. “These waves are not only physically draining but mentally draining because you dare let yourself get a little bit positive and happy that you’re improving, but then you get hit back down,” she says…

If you’re experiencing long-term symptoms in the wake of a novel coronavirus infection, Dr. Chen suggests that you keep a diary of your symptoms to share with your doctor and reach out for help from a post-COVID treatment center. Don’t discount the potential mental health effects of this disease, either.

“With COVID, there is an increased risk for mental health and psychiatric illness because this is a very traumatic event. We’re seeing patients who are having symptoms associated with PTSD, depression, and anxiety, and we want to be able to treat that, too,” he says.

Otherwise, it’s important to understand that “surviving” COVID-19 can become a long-term struggle, which is yet another reason to continue taking this pandemic seriously—even if you have a serious case of quarantine fatigue (and really, so many of us do)…” (F)

“The U.S. National Institutes of Health said Wednesday it’s starting a $470 million study to try to understand what’s become known as long COVID — the long-term, sometimes serious effects of COVID-19.

The study will aim to include 30,000-40,000 people and will make use of digital data — including input from wearable devices, the NIH said.

“We know some people have had their lives completely upended by the major long-term effects of COVID-19,” NIH Director Dr. Francis Collins said.

“These studies will aim to determine the cause and find much needed answers to prevent this often-debilitating condition and help those who suffer move toward recovery.”

The study, called Researching COVID to Enhance Recovery or RECOVER, will include researchers at more than 30 institutions across the country, the NIH said. They’ll study existing and new patients with some of the mystifying conditions that show up after people supposedly get over the intense, acute effects of a bout with COVID-19.

“These post-COVID conditions are often referred to as long COVID, long-haul COVID, post-acute COVID-19, long-term effects of COVID, or chronic COVID. NIH refers to this scientifically as PASC- post-acute sequalae of SARS-CoV-2,” Collins told a briefing.

“Persistent symptoms originate in multiple organs. The most common symptoms include pain, headaches, fatigue, what’s called brain fog, shortness of breath, anxiety, depression, fever chronic cough and sleep disorders. PASC also includes multisystem inflammatory syndrome in children or MIS-C and also in adults — MIS-A.”

Doctors explain increases in breakthrough COVID-19 cases

It’s not clear what causes these symptoms and the study will seek to find what they might be.

“Is it a misfiring of the immune system that fails to reset after the infection with this coronavirus? Is it a triggering of some metabolic dysfunction?” Collins asked.

“We don’t know. The diversity of symptoms and presentations leads us to believe that long COVID is not just one condition,” he added.

“The only way, therefore, we’re going to sort this out is with very large studies that collect lots and lots of data about symptoms, physical findings and laboratory measures.”… (G)

“Is Long Covid Recognized by the ADA?

Yes, as long as a person’s long Covid symptoms meet the ADA’s definition of a disability. Almost any physical or mental impairment that substantially limits a major life activity will qualify as a disability under the ADA. So if you have a medical issue that affects either your physical body or your mind, it would be eligible for ADA protections.

The impairment also needs to be severe enough substantially limit a major life activity. This sounds like a high standard, but it’s not as difficult to meet as you might think. If you have trouble doing any of the following because of your disability, then you likely meet this standard:

Lifting; Communicating; Thinking; Reading; Seeing; Sleeping; Talking; Hearing; Bathing; Dressing; Eating; Walking; Breathing; Standing. (H)

“Since she tested positive for the coronavirus in April 2020, Josie Cabrera Taveras has found herself sleeping for up to 15 hours a day, stopping in grocery store aisles to catch her breath, lapsing in and out of consciousness and unable to return to her job as a nanny.

She believes that she is one of thousands, possibly millions, of Americans who may have a condition known as “long Covid.” The Biden administration has said people with the condition could qualify for federal disability protections and benefits, which can include health care, housing and unemployment benefits.

But like many others who may have long Covid, Ms. Taveras, 31, has had a hard time proving it.

Two brain M.R.I.s, several heart ultrasounds, dozens of lung X-rays, two stomach endoscopies, one colonoscopy and multiple CT scans have all provided the same results: Everything looks normal. “It’s something doctors can’t explain yet, what’s happening to me,” Ms. Taveras said.

With no direct medical evidence of her condition, she has been turned down for disability coverage twice. Even a note from a prestigious post-Covid clinic in the Mount Sinai hospital system, attesting that Ms. Taveras “continues to experience daily symptoms and is currently unable to work,” was not enough.

In July, at a White House event celebrating the Americans with Disabilities Act, President Biden promised “to make sure Americans with long Covid who have a disability have access to the rights and resources that are due under the disability law.”  (I)