Utah ‘Long-haulers’ suffering mysterious illness months after Covid infections

It was just the flu. Those were the beliefs about covid that Lisa O’Brien was tired of hearing as several months after having the disease as she continued to experience serious and mysterious health issues. O’Brien was one of thousands of people across the United States calling themselves covid long-haulers. Covid long-haulers were those considered recovered from active infections but still suffering chronic conditions that doctors were only just beginning to look into.

Many long-hauler support groups had cropped up on social media, including one created by O’Brien for Utahns, the “Utah Covid Long Haulers” on Facebook. A lot of long-haulers started to realize they were not getting better, and their bodies were doing crazy stuff, heart issues, neurological issues etcetera. It was not just all about life or death. There was this middle ground that some of the long-haulers got stuck in, and it could last for weeks or months, and they did not know if they will ever go back to who they were.

There was just a lot of uncertainty and unknowns, and it was scary. It was not like the flu at all. This was not like any flu anyone ever had. O’Brien first experienced the symptoms of covid after returning to Utah from a trip to Hawaii in March. After being told she did not need to get tested and to assume she had the infection, an advice many received early in the pandemic when testing capacity was lower, she finally received a test two weeks after the onset of symptoms.

O’Brien tested negative.

Because false negatives were common, that made getting doctors to take O’Brien’s situation seriously more difficult. She had the hardest time getting doctors or anybody to believe her. She was not alone. About 40% of the long-hauler population in the Facebook support groups she belonged to say they tested negative, so it was just the tests were not reliable.

For 20 years, O’Brien would walk miles a day, went on monthly trips, and had no history of heart problems or any previous underlying conditions, soon started experiencing blood clots in her lungs and arms, and would wake up with an elevated sleeping heart rate. When she went into the emergency room, doctors often suggested she was simply experiencing anxiety — until they ran tests and found the blood clots. There were some people in her group that used to run miles a day, and now they could barely go for walks.

Some just had the fatigue, some were still having the heart and/or neurological issues. These long-haulers really had like nowhere to turn, because general practitioners did not know what to do with them. These people were the ones that were managing their symptoms at home, so they were not in any statistics. They were kind of lumped in with the recovered statistics, but they were not really recovered.

Jennifer Hunter, a 39-year-old Utah schoolteacher, also faced a long road of recovering from covid.

After being diagnosed with pneumonia and receiving a positive test for covid in June, Hunter soon found herself in the hospital with a pulmonary embolism, which was when the lungs’ arteries were blocked with blood clots. It did not matter if a person was eating right and exercising right, you still could catch the virus. Nobody knew how the virus would affect anyone.

Although Hunter had an autoimmune disease, she had that under control before covid hit, and the virus had exacerbated her previous condition. It was something she had never experienced before, so she knew something was definitely going on. It had been a roller coaster ride of different symptoms for her since then. In addition to the blood clots, she had also experienced shortness of breath and heaviness in the chest.

Like O’Brien, Hunter’s heart rate would skyrocket and then rapidly dropped. Two days before she got sick, Hunter had been training for a half marathon and ran 10 miles. Doctors told her it would take at least six months before she should run again in order to give her lungs time to heal. But finding support through the Utah Covid Long Haulers group had helped Hunter navigate the illness.

It was great to know that there was that support there and the resources and answers, and it was a really great group for letting Hunter know she was not alone in this.

Seeing others like O’Brien who were beginning to recover gave Hunter hope. It was good to have a positive outlook that although it was a long road to recover but at least there was a light at the end of the tunnel for the long-haulers. With the help of patient-driven advocacy, some researchers and hospitals were starting to look into long-haulers’ conditions to figure out how to treat them.

After New York City-based health care system Mount Sinai recovered from the brunt of the city’s first surge of the virus, it established a center for post-covid care. Common long-haul symptoms included an erratic heart rate, palpitations, exercise intolerance, shortness of breath, extreme fatigue, and gastrointestinal issues. Some who had the virus infection later experienced a condition that is like dysautonomia, a syndrome that caused a dysfunction of nerves that regulated body functions including heart rate.

Effectively, all of these conditions were syndromes. Which meant there was no blood test that would inform if anyone had them. Doctors would count the different symptoms a person was having, and if the person checked off seven of the nine boxes, then this person had this syndrome. Symptoms experienced by long-haulers were far more numerous than what was currently listed on the Centers for Disease Control and Prevention’s (CDC) website.

While the impact of covid on the lungs and vascular system had received some media and medical attention, findings suggested that brain, whole body, eye, and skin symptoms were also frequent-occurring health problems for people recovering from the virus.

O’Brien also participated in a study being conducted by Mount Sinai on long-haulers. Though the CDC had not released extensive information about long-term effects of the virus, only saying that non-hospitalized covid could result in prolonged illness and persistent symptoms, even in young adults and persons with no or few chronic underlying medical conditions. In contrast, over 90% of outpatients with influenza recovered within approximately two weeks of having a positive test result.

The condition was starting to be recognized nationally and statewide. O’Brien hoped an Utah clinic for post-covid survivors would eventually be created, as Mount Sinai had done in New York. Utah health officials reported the lowest daily number of new covid cases. The state had confirmed 46,894 cases since the pandemic began out of 601,795 people tested — an overall positive rate of 7.8%.

Utah’s death toll stood at 364. Just over 38,000 of its cases were considered recovered after surviving the three-week point since their diagnoses. Former Food and Drug Administration (FDA) commissioner Doctor Scott Gottlieb was in Westport, Connecticut, on August 16th 2020. Covid death rate had been fairly persistent. Deaths peaked and started to come down as the epidemics in the southern states started to peak and decline.

But there had been a fairly persistent level of infection, hospitalizations, and deaths over the last couple of weeks.

The United States had over a thousand deaths a day for at least two weeks, over 50,000 infections a day on average. It hit 55,000 in the last day. Hospitalizations had come down a little bit, but they had not really started to decline very rapidly. What was happening was that as the cases started to decline in the southern states, the United States was starting to see infections picking up in other parts of the country.

California was still increasing. The only state that seemed to have come down quite a bit of the epidemic was Arizona. And the United States had 14 states with positivity rates above 10%. Mississippi at 21%, Florida at 18%, and Nevada at 17%. So there was still a lot of states with pretty high positivity rates. Most people dying were over 70. The government was confident in sending children back to in-person classroom education, saying children had six times higher chance of dying from the flu than covid.

It was not known where the six times comes from. Officials needed to be careful about making comparisons to flu. This infection had not been as prevalent in children as flu was each year, there had been about 330,000 diagnosed infections. If you were diagnosing one in five to one in 10 infections in children, maybe there had been about three million children who had been infected with this.

Flu was estimated to cause symptomatic illness in upwards of 11 million children every season.

This was a 2018-2019 season. And it caused a fair degree of asymptomatic infection in children as well. So the prevalence was much higher. With flu the United States saw upwards of about 400 tragic deaths a year. It had already seen 90 deaths from covid in children. And it just had not been as prevalent in children. And healthcare professionals also saw concerning indications of post viral syndromes.

This multi-system inflammatory syndrome, which had affected 570 children, had been recorded so far. So there was a lot the professionals did not understand about covid in children. People needed to be careful about making comparisons to flu and the death and disease seen in flu relative to virus. The CDC said that people who had recovered from covid were essentially immune for at least three months.

This was the first study where they could say with certainty that for at least three months the people who had recovered had immunity that would guard against reinfection. People who had been exposed to covid who had infection in the last three months, did not need to self quarantine because the immunity was that absolute. That did not mean infected people were not going to have immunity for a longer period of time.

The study just looked at three months.

Covid had not been around long enough for scientists to really study long term immunity in a practical way in people in the community. But it was probably the case that people were going to have a period of immunity that lasts anywhere from six to twelve months. It was going to be highly variable. Some people would have less immunity, some people would have slightly more.

But it was good news that the study was able to document that people had sterile immunity. People were not going to get reinfected for at least three months and probably longer than that after infection. But we were probably a long way from this concept of herd immunity. If you looked at the seroprevalence studies overall, maybe 8% of the population as a whole had been exposed to this.

In outbreak states like Arizona it might be higher, closer to 25% based on some modeling, maybe as high as 20% in Florida based on certain modeling, and 15% in Texas. The seroprevalence in New York City is 20%. So that was getting closer to a level of immunity where the rate of transmission would start to decline. It was not quite herd immunity, but you were going to see declines in the rate of transmission because of that.

There was also speculation around T-cell immunity, whether or not people who had prior infection with covid had some residual T-cell memory that conferred immunity.

Authorities did not know if the T-cells conferred immunity, but they did know that people who had prior infection with covid had cross reactive T-cells. So these people had T-cells that cross reacted with this particular virus. Now, whether that conferred a level of immunity had to be demonstrated and authorities were not sure. President Donald Trump announced that McKesson Corporation would be a central distributor of covid vaccine and supplies and the military was ready to distribute doses.

The government ought to leverage the private sector, the companies, the distributors, and the manufacturers who knew how to distribute vaccines through the existing supply chain. If the government tried to take physical possession of these vaccines and then distributed it through channels they set up, that could ultimately lead to hiccups and delays in getting vaccines to consumers. What the government should be doing was directing the existing supply chain on where to allocate those vaccines based on where they perceived the need and what the allocation system was going to be, based on who the vaccines were ultimately approved for, whether they were approved for frontline health care workers initially authorized or for people who were at higher risk.

The covid had now killed more than 762,000 people worldwide. More than 21 million people across the globe had been diagnosed with covid. The actual numbers were believed to be much higher due to testing shortages, many unreported cases, and suspicions that some national governments were hiding or downplaying the scope of their outbreaks. The United States was the worst-affected country in the world, with more than 5.3 million diagnosed cases and at least 168,396 deaths.

Reversing an earlier decision, Columbia University would hold all undergraduate courses online this fall.

Columbia University thought that it could safely house 60 percent of Columbia College and Engineering undergraduates in its residence halls. The university had concluded that it must drastically scale back the number of students it could accommodate in residence on campus, thereby limiting residential-style living only to Columbia College and SEAS undergraduates who must be present on campus due to personal or academic circumstances. The university blamed the protocols in place in New York state, including the mandatory 14-day isolation period for people traveling from out of state, for deciding against in-person instruction.

With few undergraduate students living on campus, Columbia University had decided that all undergraduate courses would be virtual. There was the physical capacity to conduct many undergraduate courses in person, but students would be living in so many locations, and under such varied circumstances, that online instruction was the only realistic approach. Other nearby Ivy League schools, such as Yale University and the University of Pennsylvania, were allowing for at least some on-campus learning.

Princeton University, however, had said all its classes would be remote this fall. People without covid symptoms and who were not known to have been exposed to the virus should not necessarily be screened with a rapid test. This raised questions about whether businesses, sports teams, and others were too reliant on the rapid tests to screen asymptomatic people because they were less sensitive than PCR tests.

Negative results should be considered as ‘presumptive negative’ and healthcare providers should consider them in the context of clinical observations, patient history, and epidemiological information.

Rapid diagnostic tests were done with a nasal or throat swab and could deliver results in an hour or less. They could be molecular or antigen tests, but not antibody tests. One day after pulling a lawsuit against Atlanta Mayor Keisha Lance Bottoms, Georgia Governor Brian Kemp announced new mask guidance. However, the order that banned requiring masks had been modified.

Local governments would be allowed to issue the orders, but they would only be permissible inside businesses if the owners agreed with it. The Executive Order allowed local governments to require face coverings on their own property if they met specific health-related metrics. However, if they implemented such a requirement, there were numerous exceptions and a limit on penalties.

Of most importance, this order would contain very strong protections for business owners and private property. Specifically for businesses, the owner would still be able to decide whether to have a face covering requirement or not. If the owner decided to have a face covering requirement, the owner could decide who enforced it. This summary did not cover every section, but it hit the high points for coverage.

Georgia became one of the first states in the country to reopen following the pandemic, which caused an increase in cases.

Georgia had more than 230,000 cases, fifth-most among states. The state’s positivity testing rate is 10.8%, 10th-worst among 49 states. The University of North Carolina (UNC) had identified two clusters of covid in Ehringhaus Community and Granville Towers, two dorms on campus. UNC did not provide an exact number of cases. The individuals in these clusters had been identified and were isolating and receiving medical monitoring.

UNC had also notified the Orange County Health Department and was working with them to identify additional potential exposures. Contact tracing was taking place and those who came into contact with the infected individuals were being notified. The university began classes just the week of August 10th 2020, and had taken precautions to limit the spread of covid, such as smaller class sizes and longer periods between classes to allow for more social distancing.

UNC’s main campus at Chapel Hill was the second-largest college in the state with about 30,000 students. The state of Michigan had postponed its high school football season to spring over covid concerns. The Michigan High School Athletic Association (MHSAA) made the announcement just weeks before the season was to start. However, all other fall sports in the state would continue with the association saying they were less likely to spread the virus.

The MHSAA did everything it could to find a path forward for football this fall.

But there was just too much uncertainty and too many unknowns to play football this fall. No one was willing to take the risk of covid being passed on because of a high-risk sport. Decisions had to be made on other sports as well, but none of those carry the same close, consistent, and face-to-face contact as football. Michigan was one of the growing number of states to postpone or cancel football in the fall, including Colorado, Delaware, Hawaii, Illinois, Kansas, Maryland, Minnesota, Nevada, New Mexico, New York, North Carolina, Oregon, Pennsylvania, Virginia, and Washington.

Wisconsin had allowed individual schools to choose to play in the fall or spring. The CDC sent out a note clarifying incorrect reporting that said people were immune from the virus for three months following a positive diagnosis. People could continue to test positive for up to three months after diagnosis and not be infectious to others.