As Restrictions Go Away, Long COVID Is Here To Stay

by Jenny Kwon
October 30, 2021

Update as of October 29, 2021 on the UC Davis Post-COVID Clinic: The number of referrals per month seems to be “decreasing a little,” according to Dr. Sanville. He and other physicians are waiting to see if there will be an “uptick” after the surge in long COVID cases during this summer. The clinic has “mobilized” additional physicians “to help with the backlog” while continuing to see the non-COVID-related pulmonary referrals, resulting in shorter wait times. The clinic now focuses on patients “with persistent shortness of breath” after infection, but patients still experience other symptoms such as loss of smell and migraines.

While there has been more evidence regarding “the underlying pathophysiology” since June, this evidence still remains “fairly limited.” There is still no “overarching” reason to “explain the multi-system issues” many patients deal with or clear treatments for these issues. However, patients with specific symptoms such as persistent migraines or heart inflammation would have multiple treatment options with neurology or cardiology respectively. Treatments depend on “what we find” and how “[we] tailor any reasonable treatments for [post-COVID] patients” based upon their varied issues, said Dr. Sanville. “It’s unfortunately just not clear sometimes what we are dealing with,” and “each patient is different,” he added.

DESCRIPTION:

This is the first podcast episode for The Public Health Advocate.

Even as restrictions go away, long COVID is here to stay.

After over a year of lockdown, Governor Gavin Newsom lifted COVID-19 restrictions on June 15. With proof of vaccination, California residents are now allowed to engage in pre-pandemic activities such as indoor dining and concert-going without masks or social distancing.

For thousands of long haulers, however, the pandemic is far from over. Featuring experts such as Lisa McCorkell, one of the founding members of Patient-Led Research Collaborative; Dr. Bradley Sanville, a pulmonologist working at the Post COVID-19 Clinic at UC Davis; and Laura Stock, Director of the Labor Occupational Health Program at the University of California, Berkeley, this episode delves into what exactly long COVID, or Post-Acute Sequelae of SARS-CoV-2, entails and what research is being done and what this implies for the future of work and wellbeing.

The Public Health Advocate aims to make public health news as accessible as possible. Pasted below is the transcript for this podcast episode. If you see any errors in this transcript or have suggestions on how to make this transcript more accessible, please email us at publichealthadvocate [at] gmail [dot] com!

TRANSCRIPT:

[Intro piano music: “Hello” by Crowander]

Hi, this is Jenny, and you’re listening to the Public Health Advocate podcast.

The Public Health Advocate is an undergraduate-led publication at the University of California, Berkeley, covering current public health issues with local, national and international perspectives.

This is our pilot episode, and thank you for tuning in. We’re glad to have you for these next few minutes.

Today, we’ll be discussing how, even as restrictions go away, long COVID is here to stay.

[Sounds of indoor dining]

For thousands of long haulers, however, the pandemic is far from over.

Long haulers, or individuals with long COVID (or Post-Acute Sequelae of SARS-CoV-2), experience COVID-19 complications beyond two to three weeks such as chronic fatigue, brain fog and other symptoms that impact their ability to work and thrive.

[Beginning of audio snippets from 60 Minutes’ “Post-acute COVID-19 Syndrome: COVID ‘long haulers’ suffering symptoms months after initial diagnosis” (Full transcript linked here.)]

Sadie Nagamootoo was 44 years old and a personal trainer in New York. When she got COVID in March, she was able to recover at home and when she tested negative in May, she thought her life would return to normal.

It hasn’t.

“There are days where I do nothing and just can’t get out of bed. The migraines … they’re like 10 times worse than a flu, headache, pains, like muscular issues and there’s sometimes where my hands feel like they have pins and needles and I have to stop using them because I can’t feel anything.”

Nitza loved to run. Three years ago, she completed the New York City Marathon and the following year – Berlin. At 43, she was training for another race when she got infected.

“There’s this slight unsteadiness.”

Now, she tells us she has trouble walking more than a few blocks down the street.

[End of audio snippets]

Several studies suggest that approximately one-third of patients with COVID-19 symptoms don’t fully recover after six months.

The growing number of long haulers has led to the creation of more post-COVID care centers.

As of September 28th, 46 states have at least one care center, with 15 located in California.

At these care centers, long COVID patients work with doctors like Dr. Bradley Sanville, a critical care pulmonologist working at UC Davis’ post COVID-19 clinic, to devise specialized treatment plans.

[Sanville speaking]

If they have post-COVID-associated myocarditis, they’re going to see a cardiologist. If they have headaches, they’re going to see a neurologist. It all kind of depends. Patients might see more than one doctor. The treatment plans are pretty varied. It depends on what the issue is.”

[End of Sanville speaking]

Running these clinics comes with challenges. The UC Davis clinic receives thousands of referrals, yet, as of July, has only around six doctors. Additionally, with the lack of national long COVID data and ongoing clinical trials, it’s still unclear what directly causes long COVID symptoms.

[Sanville speaking]

For a lot of these patients, there’s no obvious treatment plan. Nobody knows what the issue is, so it’s hard to know how to treat anything if you don’t know what the problem is.

I’m certainly not just throwing experimental treatments at people without some data behind it. There [are] no good randomized control trials that see [that] these treatments are good for X, Y and Z, this is what you should do.

Until that stuff comes out, you’re kind of limited unless you can identify something that is more obvious that can be treated.

[End of Sanville speaking]

Doctors are scrambling to understand the symptoms and causes of long COVID, resulting in disappointing clinic visits for many long haulers since the pandemic’s onset. Long haulers shared their frustrations and other unsavory physician-patient interactions within Body Politic, an international support group of patients and chronic illness allies.

Soon after, long haulers like Lisa McCorkell — founding member of Patient-Led Research Collaborative, or PLRC — decided to do their own research.

[McCorkell speaking]

It was clear that at that point, none of our doctors knew what was going on or could give us any information or any treatment options.

There was just this wealth of knowledge that was being shared within the support group, but no real systematic way of organizing it and trying to figure out what the commonalities are between people, are certain treatments helpful for people…

[…just like] I felt like it wasn’t really organized, and if we could maybe organize it, we could also prove to ourselves that this was an issue and prove to the outside world that this was an issue.

[End of McCorkell speaking]

Several members created what became the first long COVID study, titled “What does COVID-19 Recovery Actually Look Like.” The individuals administering the survey and analyzing the data then formed the PLRC, focusing on conducting and sharing their long COVID research.

[McCorkell speaking]

That was the first report on long COVID that had been done. And I think the best part of that was more that it validated a lot of people’s experiences being able to see it reflected in 640 other people.

And just made it seem like, “Okay, this is an actual, real thing,” because so many [members] had been gaslit by doctors and told that, “No, you are recovered from COVID. It’s just all in your head that you’re experiencing these symptoms.”

[End of McCorkell speaking]

As of October, the collaborative has since published six reports total and is currently conducting follow-up surveys on vaccine experiences, antibody test results, neurological, cardiovascular and systemic long COVID symptoms, and long COVID’s impact on mental health.

Outside of their research, the team serves as consultants for the World Health Organization, CDC and post COVID-19 clinics.

For McCorkell, seeing world-renowned public health agencies incorporate the researchers’ feedback on their long COVID guidelines and “knowing that [their] additions will lead to so much better care for patients” was “emotional” and “very rewarding.”

[McCorkell speaking]

Given that we’re not funded, we’re tired, we’re sick, we’re overworked, it can often seem like we’re shouting into the ether and that no one is listening and none of this matters.

Seeing something like that come through and knowing how hard we worked on it — it just is very rewarding to see.

[End of McCorkell speaking]

McCorkell, along with the other PLRC members, does research and consulting work on top of her full-time job as a CalFresh policy analyst for the California Department of Social Services.

Her 40-plus hour work week, unsustainable for many long haulers enduring chronic exhaustion and other health complications, raises questions about how long COVID could change workplace accommodations and benefits.

[McCorkell speaking]

I’m very hopeful that COVID and long COVID generally will change the future of work. It’s going to take a lot of work and intention in order to normalize the accommodations that we’ve seen over the last year, but I think that it is one of the most important things we can do because there are so many people with long COVID who have been able to continue working because they’ve been able to work remotely.

For the people who have the ability, if they have an understanding employer, if they’re able to get the accommodations that they need, things like flextime, changing the role they have so that they’re not standing all day, maybe they have the opportunity to sit, they’re doing more of a desk job…

…People who are able to get those accommodations are most likely able to stay in their job.

[End of McCorkell speaking]

Current legislation, including a new law passed that would provide 80 hours of COVID-related sick leave, is “probably not enough for people suffering from long-term conditions,” according to Laura Stock, Director of the Labor Occupational Health Program at the University of California, Berkeley.

[Stock speaking]

The other benefit that is sometimes available but difficult to exercise is worker’s compensation, that if people are able to demonstrate that they were exposed to COVID on the job, then they’re theoretically—er, they should be—entitled to worker’s compensation. That could then also trigger some benefits associated with returning to work and accommodations if they never recover fully.

There are some systems that would provide a little bit of a safety net for folks in that kind of situation, but I just recognize that that safety net is not very strong, and it’s hard to access those laws and I’m sure that there’s need to strengthen them to support people in that position.

[End of Stock speaking]

On top of this, she says long COVID could also disproportionately jeopardize low-income workers.

[Stock speaking]

I think, in general, people don’t have access to sufficient sick leave and there’s still many workers who work part-time or multiple jobs or are gig workers or any number of things…who have very little sick leave and their healthcare benefits are very limited.

[End of Stock speaking]

With long haulers struggling to push for increased healthcare coverage, workplace accommodations and disability benefits, policies such as loosening the mask mandate and lifting COVID-19 restrictions seem detrimental, especially as we see recurring spikes in cases and a new COVID strain emerge in the Bay Area.

According to McCorkell, these policies are “putting a lot of people at risk [who] are used to being ignored and not taken seriously.”

[McCorkell speaking]

I also was hopeful that COVID and long COVID would change our value of communities that are most at risk, and I think that this type of policy change shows that we really don’t. We really haven’t changed what we value. (Note: McCorkell is referring to the policy change of lifting restrictions on masking.)

[End of Stock speaking]

Dr. Sanville cautions college students who may be less careful about wearing masks or see long COVID as an irrelevant issue.

[Sanville speaking]

The after effects tend to be affecting a relatively young crowd of people, college kids included. For a lot of people it has been a profound change in their life. While statistically people are not likely to develop these things, the effect that I’m seeing on people is pretty awful.

I wouldn’t wish it on anybody.

[End of Sanville speaking]

[Outro piano music: “Hello” by Crowander]

This marks the end of our first podcast episode of The Public Health Advocate. Thank you again for tuning in, and we hope you learned something new.

Audio excerpts not from interviews conducted with Dr. Bradley Sanville, Lisa McCorkell or Laura Stock, come from 60 Minutes and their episode on “Post-acute COVID-19 syndrome: COVID long haulers suffering symptoms months after initial diagnosis.”

Music used in this podcast include “Hello” and “Automobile” composed by Crowander.

If you have thoughts or feedback on what we talked about, or if you’re interested in getting involved, please feel free to email us at publichealthadvocate at gmail dot com. Until next time.