What should we expect from long-term COVID treatment?

This story is part of our series examining how COVID-19 has changed our lives and how it will continue to impact public health in 2022.

key takeaways

  • In 2021, significant progress has been made in understanding how long COVID can affect the body.
  • Treatments and drugs are being tested to ease people’s lingering symptoms.
  • Experts say there is still a long way to go to understand long-term COVID and how best to treat it.

In 2021, more than 34 million people in the United States will be infected with COVID-19. The study estimates that as many as half of these people will develop long-term COVID: a complex multisystem disease that follows initial infection. For some, this may manifest as a lingering cough or permanent loss of taste and smell. For many, it evolves into a severe disability with endless symptoms.

In 2021, these patients finally received the official medical name: acute sequelae of SARS-CoV-2 infection (PASC).

Unfortunately, for many patients, that’s all they get. Two years into the pandemic, chronic COVID still raises more questions than answers. We take a look at some of the issues 2021 has managed to unravel long-term COVID, and what patients hope to keep in 2022.

Progress in 2021

In July, the Patient-Led Research Collaborative (PLRC), a group of researchers of long-term COVID patients, published the first study that captured more than 200 symptoms of long-term COVID, showed how it affects each organ, and highlighted how it can occur in nonhospitalized, mild or asymptomatic cases.

“Personally, this is an important milestone,” Hannah Wei, a longtime PLRC researcher, qualitative researcher and co-leader, told VigorTip. “We initially medical instruments About a year ago, we had academic support and opposition, and then we faced several months of journal rejections and revisions. ”

That same month, President Joe Biden announced that long-term COVID-19 may qualify as a disability and that patients could apply for insurance under the Americans with Disabilities Act.

For these 17 COVID long-haulers, reactivated virus may be to blame

The mechanism behind COVID

Research throughout the year also provides a clearer picture of the mechanisms behind long-term COVID, underpinning the neural, vascular, autoimmune and inflammatory components of the disease. Some symptoms are attributed to specific causes, although there are many gaps in the complete clinical picture.

In 2020, for example, long-haulers use terms like “brain fog” to describe cognitive symptoms like memory loss and inattention. In 2021, we discover the reasons behind these symptoms: brain damage, neuroinflammation at the cellular level, seizures, strokes, and even viral particles trapped in the brain.

Brain study reveals long-term neurological effects of COVID-19

In 2020, the most common symptom recorded by long-haul workers was fatigue. In 2021, a World Health Organization (WHO) study suggested that the reactivation of Epstein-Barr virus (EBV), the virus behind mononucleosis, in long-distance transport vehicles may be responsible for this fatigue.

According to Lauren Nichols, this fatigue is not just due to fatigue, but a long-term infection with the new coronavirus and reactivation of EBV for nearly two years.

“Physicians need to understand that when we say chronic fatigue, we’re saying that our bodies are hurting simply moving, living and functioning,” Nichols, who is also vice president of Body Politic, told VigorTip. “It’s a known symptom of chronic EBV, and I think it’s important to highlight it because it can help people understand that fatigue can feel different and debilitating when EBV reactivates.”

Many studies in the last year have shown that long-term COVID can manifest as post-viral aggregation of different diseases, especially myalgic encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), mast cell activation syndrome (MCAS), and autonomic dysfunction, This refers to a dysfunction of the autonomic nervous system. These diseases can trigger symptoms in every organ system.

Can a vaccinated person be a long-distance transporter?

Experts stress that PASC may be an umbrella term that includes these diseases.

For example, ME/CFS shares the three most common symptoms with COVID: brain fog, fatigue, and post-exercise discomfort (PEM), where a patient’s symptoms worsen after activity. Research suggests that this may be triggered by disruption at the cellular level, particularly in our NK T cells, which are normally responsible for fighting viruses. In ME/CFS, and possibly in long-term COVID, these cells are damaged, leading to viral persistence and chronic inflammation. Other studies have suggested that there may be damage to the part of the cell responsible for producing energy: mitochondria.

Our understanding of the vascular nature of COVID has also expanded over the last year. We know it can puncture and damage our blood vessels, use them to reach any organ, and cause lasting microclots, Pulmonary embolism, heart inflammation and heart attack – even weeks after “recovery”. Activists such as Nichols are emphasizing the changing narrative that views COVID as a vascular disease, especially in mild cases of COVID, as this may be why patients retain long-term damage after recovery.

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In December, a preprint study by researchers at the National Institutes of Health (NIH) showed that COVID can linger in the brain, gut and other organs for more than seven months after initial infection. This is one of the most exhaustive analyses of the virus’ ability to persist in the body, showing how it replicates in cells outside the respiratory tract.

It is hoped that these observations and findings can help create a broader clinical picture of PASC and provide symptom relief and treatment for long-haul transporters in 2022.

Graphics by Lauren Nichols.

Graphics by Lauren Nichols.

Are long-term Covid clinics and treatments helpful?

According to Noah Greenspan, PT, DPT, cardiopulmonary physiotherapist and founder of the Lung Health COVID Rehabilitation and Recovery Clinic, one of the most difficult parts of treating long-term COVID is that the disease can vary from person to person, month to month, even minute by minute. minute. This, combined with everything we don’t yet know, makes all the difference in creating a standard treatment regimen, especially in an outpatient setting.

“What works for some patients may not work and may even be harmful or harmful to others,” he told VigorTip. “This further reinforces the need for close monitoring of signs and symptoms, including heart rate and rhythm, blood pressure and oxygen saturation.”

While many long-term COVID clinics are opening in 2021 to try to treat long-distance transporters, there are still many barriers preventing patients from seeing a doctor or seeking relief.

“A lot of clinics simply don’t accept patients who don’t have a positive test when they’re acutely infected with COVID,” Greenspan said. “It’s a joke because if we look at who the long-haul transporters are, a large percentage of them are young people, mostly young people. Women who fell ill in early 2020, when testing was not available, and people were told to stay home. Many people who were supposed to be hospitalized or at least evaluated and treated were turned away.”

How can post-COVID care clinics help long-distance patients?

Alexis Misko, 34, who had to quit her job as an occupational therapist because of persistent long-term COVID symptoms, told VigorTip that traditional methods of recovery are often very unsuitable for long-term COVID.

“There’s a lack of understanding of how severe, disabling and debilitating this disease is,” she said. “For some, access to long-term COVID clinics is not even possible because people are at home or bedridden, and even visiting long-term COVID clinics can lead to severe relapses. … Also, long-term COVID clinics are unclear What is the follow-up procedure at the clinic, which means they may discharge someone ‘recovered’ and never know that person later relapses.”

Doing too much too quickly in treatment or recovery can even lead to worsening symptoms, making long-term COVID care a delicate balance.

“Many patients look fine during activity, but then develop debilitating post-exercise discomfort (PEM) or post-exercise symptom exacerbation (PESE),” Greenspan said. “By treating each patient as an individual, By acting cautiously, pacing and resting as needed, and gradually increasing activity as tolerated, we have the best chance of, first, not harming the patient, and second, helping them reach their full potential while avoiding Traps such as overuse.”

Regarding drugs, most clinical studies examining potential treatments for long-distance transporters involve repurposing older drugs developed for other diseases, Susan Levine, MD, an immunologist specializing in ME/CFS and long-term COVID, told VigorTip.

Trials involving intravenous immunoglobulin (IVIG) have also been performed, which have been shown to help in ME/CFS, autoimmune autonomic dysfunction, and autoimmune small fiber neuropathy (diagnosed in many long-haul transporters). have this disease).

For example, medications for symptom management orthostatic tachycardia syndrome (POTS), such as beta-blockers, are being prescribed to eligible long-distance transporters. Many long-distance transporters with reactivated latent virus are getting relief from herpes virus antiviral drugs. Most of the drugs used are for symptom management, but it’s a start for long-haulers whose lives have been completely disrupted by this virus.

But there is still a lot of progress to be made. Many patients have not found relief from existing treatments.

what does this mean to you

If you are currently living through prolonged COVID, there is still a lot of progress to be made in research and treatment, but many dedicated scientists and patient experts are working behind the scenes to advance this knowledge.

What will 2022 bring?

In September, the NIH awarded $470 million to the RECOVER Initiative, which aims to study the source of long-term COVID-19 symptoms and find possible treatments. More than $1 billion has been spent researching potential treatments, and more studies will publish their results in 2022.

Over the next year, we will see more insights into the pathophysiology of COVID-19. Microbiologists such as Amy Proal, PhD, a microbiologist at the PolyBio Research Foundation, and Eric Topol, MD, PhD, founder and director of the Scripps Research Translational Institute, have come a long way in advancing our understanding of long-term COVID and are worth following. of key scientists in the clinical field and online updates.

Some long-term COVID patients hope to see more collaboration from the medical community in the new year.

Are existing medications able to help COVID long-haulers recover?

Yaron Fishman, 42, who has experienced a variety of long-term COVID symptoms since November 2020, told VigorTip: “Through my challenge with long-term COVID, I have come to the conclusion that the medical community lacks Teamwork.” “I remember lying in my hospital bed thinking that if my doctor could share what we’ve learned with other hospitals, it would make a big difference.”

Wei also stressed the need for cooperation.

“The challenge ahead is not only to invite long-term COVID-19 patients and disabled patients to participate in decision-making,” Wei said. “We are grateful for these opportunities to collaborate with research and public health agencies — and also appreciate that patients’ voices are seen as an equal vote. In December, the PLRC wrote an open letter to NIH RECOVER stakeholders detailing what we hope to achieve in Changes seen in leadership. We advocate for patient engagement to be more transparent, accountable and meaningful to those most affected by these decisions.”

The information in this article is current as of the date listed, which means that you may have updated information as you read this article. For the latest updates on COVID-19, visit our Coronavirus news page.

This article was updated on January 20th at 10AM to reflect corrections for the month Yaron Fishman began experiencing prolonged COVID symptoms.