Coronavirus (Covid-19) and the research: Analyzing and understanding the long Covid problem

Filed Under: Costs, Patients, Providers

- photo by Photo by Adam Nieścioruk on Unsplash

By PHOEBE PINDER and JEANNE PINDER

Some research has been done on people in whom Covid symptoms persist over the course of months, but there is still a lack of thorough medical investigations of this phenomenon.

In fact, it’s still not absolutely clear what this phenomenon should be called. Some call it “long Covid,” while others call it “long-hauler Covid,” “post-acute Covid,” “chronic Covid” or “post-Covid syndrome.”

Early statements that Covid either kills a patient, or creates an infection that lasts for about 2 weeks, and then ends, turn out not to be true.

How long does it last? That seems to depend on the person. Does it ever end? For some people, it hasn’t yet, after months — and it’s not clear if or when it will. Does Covid-19 have long-lasting consequences? For some people, clearly yes, on a range of body systems — cardiological, neurological, respiratory, gastrointestinal, reproductive and musculoskeletal systems seem to be affected for some people,, but not all. How many people have long-term courses of the illness? There is no great research on this. In fact, many headlines seem to focus on how many people have tested positive and how many people have died,  without quantifying the number of people who have long-term illness. Could this be a long-term public health catastrophe? Possibly — this is just not knowable yet.

For patients, the lack of medical research means sometimes their symptoms aren’t taken seriously, or doctors aren’t sure if or how to treat them. Many patients find that doctors refuse to believe that their symptoms are real, or connected with Covid in any way. They also say friends, relatives and employers are skeptical that they are actually ill.

Of course the illness has not been present in humans for long enough to have resulted in any long-lasting studies. In fact researchers in Britain recently wrote a paper in the journal The Lancet calling for more extensive research. “The number of people affected by COVID-19 is unprecedented. We owe good answers on the long-term consequences of the disease to our patients and health-care providers. The obvious answer is in research,” they wrote.

A sampling of studies and research

The U.S. Centers for Disease Control and Prevention did a study for the Morbidity and Mortality Weekly Report on July 24. The authors wrote: “In a multistate telephone survey of symptomatic adults who had a positive outpatient test result for SARS-CoV-2 infection, 35% had not returned to their usual state of health when interviewed 2–3 weeks after testing. Among persons aged 18–34 years with no chronic medical conditions, one in five had not returned to their usual state of health. … COVID-19 can result in prolonged illness, even among young adults without underlying chronic medical conditions. Effective public health messaging targeting these groups is warranted.”

In a piece published in the BMJ Aug. 11, researchers in Britain defined ‘post-acute Covid-19’ (a.k.a. “Long Covid”) as illness “extending beyond three weeks from the onset of first symptoms, and ‘chronic Covid-19’ as extending beyond 12 weeks.” They suggested that, given the potential inaccuracy of existing Covid tests and the fact that many people do not get tested, a positive Covid test should not be considered a prerequisite for diagnosis.

The researchers, Trisha Greenhalgh, Matthew Knight, Christine A’Court, Maria Buxton and Laiba Husain,  acknowledged that post-acute Covid-19 symptoms may vary widely between patients, but cited the most common lingering symptoms as “cough, low grade fever, and fatigue, all of which may relapse and remit.” Other symptoms, they said, include “shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes, metabolic disruption (such as poor control of diabetes), thromboembolic conditions, and depression and other mental health conditions.”

The BMJ posted a YouTube video on Sept. 4 of several experts describing the phenomenon, featuring several scientists who are doing studies. “In this first of The BMJ’s Covid-19 grand rounds, we focus on the phenomenon of ‘long Covid,’” the explanation of the video says. “Many patients who have relatively mild symptoms from the infection, continue to experience these long after the usual 12 day duration. For these patients, the post-acute syndrome has a significant impact on their lives, but many questions remain about its diagnosis, management and prognosis.”

The British Medical Association surveyed doctors and found “A third of doctors have treated patients with long term Covid-19 symptoms, including chronic fatigue and anosmia.” The study results were published here on Aug. 13.

In a study published in the Journal of the American Medical Association Cardiology on July 27, researchers from Germany, Italy and Russia examined 100 patients recently recovered from Covid-19 to determine potential cardiovascular effects of the virus. Researchers determined that 78% of the patients displayed abnormal CMR (cardiac magnetic resonance imaging) findings, “independent of preexisting conditions, severity and overall course of the acute illness, and the time from the original diagnosis.” Most commonly, patients showed ongoing perimyocarditis, an inflammation of the muscles of the heart, and of the sacs surrounding the heart. Results were similar between patients who had recovered at home and those who had recovered in hospital.

“Our findings,” the researchers say in their paper, “may provide an indication of [a] potentially considerable burden of inflammatory disease in large and growing parts of the population and…indicate the need for ongoing investigation of the long-term cardiovascular consequences of COVID-19.”

In another study published in JAMA on July 9, researchers at the Agostino Gemelli University Policlinic in Italy assessed 143 patients who had been discharged from the hospital after recovery from Covid, and met the World Health Organization’s criteria for discontinuation of quarantine (“no fever for 3 consecutive days, improvement in other symptoms, and 2 negative test results…24 hours apart”). Patients were assessed an average of 60.3 days after the first onset of Covid symptoms.

“At the time of evaluation,” they reported, “only 12.6% [of the participants] were completely free of any COVID-19–related symptom, while 32% had 1 or 2 symptoms and 55% had 3 or more.” The most commonly reported symptoms were fatigue and shortness of breath, followed by joint pain and chest pain. “Clinicians and researchers have focused on the acute phase of COVID-19,” the researchers pointed out in their discussion, “but continued monitoring after discharge for long-lasting effects is needed.

Patient group studies

Dr. Natalie Lambert of the Indiana University School of Medicine did a study in partnership with the Covid nonprofit group Survivor Corps this summer, surveying patients on the Survivor Corps Facebook group. Patients described nearly 100 symptoms, including fatigue, body aches, neuropathy, night sweats, eye and skin symptoms, and many others. The study, published July 25, says: “The results of the analysis suggest that Long Haulers’ COVID-19 symptoms are far more numerous than what is currently listed on the CDC’s website. While the symptoms listed on the CDC’s website are, except for nausea or vomiting, some of the most common COVID-19 symptoms reported by Long Haulers, the mismatch between the health problems people are experiencing and the information that they can find from official health sources is noticeable and a potential cause for concern. It is understandable that health organizations do not list symptoms until there is more research validating whether a symptom is COVID-19 related or due to another illness, but at the same time the lack of information about the broad range of long-term COVID-19 symptoms may and likely does drive people to unofficial sources of health information online. Survivor Corps, for instance, is one place online where people who believe they have COVID-19 are going for information and advice.” and body aches to night sweats and neuropathy.”

Body Politic, a queer feminist Wellness Collective, launched slack support group early in the pandemic. The group did a study, released May 11, from 640 responses to a survey that was distributed primarily through the Body Politic Slack, and also through other support groups on social media. The survey was open from April 21 to May 2. Survey questions and responses were collected and compiled by patients themselves, and the analysis was also done by patients. “While the medical community’s primary focus is on those with acute severe conditions, respondents of this survey represent those with mild to moderate symptoms with a prolonged recovery who may or may not have received medical support in their region,” the survey says. “At the time they took the survey, 90.6% of the respondents had not recovered (Recovery was Self-Interpreted for this Survey. For the 60 respondents who had recovered, the average length of time of being symptomatic was 27 days. The respondents who had not recovered had been experiencing symptoms for an average of 40 days, with a large proportion experiencing symptoms for 5-7 weeks.” Body Politic is doing a second survey, sponsored by University College London in the U.K. View the survey here.

The Covid Long-Haulers Discussion Group on Facebook did its own symptom survey, documenting what percent of its members experienced what symptoms. Here is the survey form. You can find the spreadsheet with results here.

Survivor Corps, the support group for Covid patients, has a page with resources for people wanting to sign up for studies. Find it here. It is a little out of date; one of the studies, at Rockefeller University in New York, is no longer accepting participants. There is a breakdown for studies at the national and state level, and also a listing of plasma and blood banks.

Treatment centers

As the extent of the long form of the illness has become clearer, there has been a gradual increase in post-Covid-19 care programs  at various hospitals. One that is frequently discussed is the Mount Sinai Center for post Covid-19 in Manhattan. Here’s the website.

SUNY Downstate Health Sciences University announced  that its University Hospital of Brooklyn set up an outpatient clinic for care of discharged patients after inpatient and outpatient Covid treatment at SUNY Downstate. Mafuzur Rahman, M.D., Vice-Chair of Medicine at SUNY Downstate is the leader of the post-discharge Covid-19 clinic. Here’s the press release.

Hackensack Meridian Health in New Jersey opened a dedicated post Covid-19 unit. Here’s the press release.

Richmond University Medical Center, in Staten Island, an affiliate of Mount Sinai, opened a dedicated post Covid-19 unit. Here’s the page.

Northwestern University in Evanston, Ill., has a post-Covid clinic. Here’s a description.

New York City Health + Hospitals, the city’s public health organization, plans to build three Covid centers of excellence. They are expected to open soon. Here’s a story about that, and a press release from earlier this summer.