NIH Spent $1 Billion on Long Covid Research, With Little to Show for It

By Betsy Ladyzhets and Rachel Cohrs

The federal government has burned through more than $1 billion to study long Covid, an effort to help the millions of Americans who experience brain fog, fatigue, and other symptoms after recovering from a coronavirus infection.

There’s basically nothing to show for it.

The National Institutes of Health hasn’t signed up a single patient to test any potential treatments — despite a clear mandate from Congress to study them. And the few trials it is planning have already drawn a firestorm of criticism, especially one intervention that experts and advocates say may actually make some patients’ long Covid symptoms worse.

Instead, the NIH spent the majority of its money on broader, observational research that won’t directly bring relief to patients. But it still hasn’t published any findings from the patients who joined that study, almost two years after it started.

There’s no sense of urgency to do more or to speed things up, either. The agency isn’t asking Congress for any more funding for long Covid research, and STAT and MuckRock obtained documents showing the NIH refuses to use its own money to change course.

“So far, I don’t think we’ve gotten anything for a billion dollars,” said Ezekiel Emanuel, a physician, vice provost for global initiatives, and co-director of the Healthcare Transformation Institute at the University of Pennsylvania. “That is just unacceptable, and it’s a serious dysfunction.”

Eric Topol, the founder and director of the Scripps Research Translational Institute, said he expected the NIH would have launched many large-scale trials by now, and that testing treatments should have been an urgent priority when Congress first gave the agency money in late 2020.

“I don’t know that they’ve contributed anything except more confusion,” Topol said.

‘Pointless’ Study

Patients and researchers have already raised alarms about the glacial pace of the NIH’s early long Covid efforts. But a new investigation from STAT and MuckRock, based on interviews with nearly two dozen government officials, experts, patients, and advocates, and internal NIH correspondence, letters, and public documents, underscores that the NIH hasn’t picked up the pace — instead, the delays have compounded.

It’s difficult to pinpoint exactly why progress is so stalled, experts and patients involved in the project emphasized, because the NIH has obscured both who is in charge of the long Covid efforts and how it spent the money. The broader Biden administration has also missed opportunities for oversight and accountability of the effort — despite the president’s lofty promises to focus on the disease.

The NIH’s blunders have massive ramifications for the more than 16 million Americans suffering from long Covid, in addition to those with other, similar chronic diseases. As the biggest government-funded study on this topic, the NIH initiative, dubbed RECOVER, sets precedents for future research and clinical guidelines. It will dictate how doctors across the country treat their patients — and, in turn, impact people’s ability to access work accommodations, disability benefits, and more.

“The NIH RECOVER study is pointless,” said Jenn Cole, a long Covid patient based in Brooklyn, N.Y., who wanted to enroll in the study but found the process inaccessible. The research is “a waste of time and resources,” she said, and fails to use patients’ tax dollars for their benefit.

In response to STAT and MuckRock’s questions, the NIH and an institute at Duke University managing the clinical trials defended the initiative, without providing a clear explanation for the delays.

The NIH said it chose to fund a large-scale research program instead of small-scale studies to make sure data and processes could be shared across different groups of patients, adding that clinical trials will be launching soon. In these trials, standardized study designs will allow the agency to test multiple treatments across multiple sites. If there are signals a drug works, the agency said it can pivot to devote more resources there.

A Department of Health and Human Services spokesperson said the agency has made progress over the last year in responding to long Covid, and that there are research efforts underway in addition to the RECOVER program.

“The Administration remains committed to addressing the longer-term impacts of the worst public health crisis in a century,” HHS said.

Five Clinical Trials Delayed

In 2020, Congress made an investment of $1.2 billion to learn more about the mysterious ongoing symptoms that were afflicting some people infected with Covid-19. That sort of money to fund research into a chronic condition like long Covid was virtually unheard of.

The money was explicitly earmarked to fund both research to understand the disease and clinical trials to test treatments that could bring patients relief. But more than two years in, the agency hasn’t started testing a single treatment. Nor is it planning to test many in the future. Instead, it’s focused on observational research — and that, too, has produced few insights.

The NIH is planning five clinical trials, each of which will test treatments that may help with a major category of long Covid symptoms. Some of these treatments will be drugs, while others will be behavioral therapies, such as cognitive retraining. Each trial will include 300 to 900 patients, selected based on their symptoms, according to details shared during a webinar in mid-April.

The only trial to be formally announced so far will focus on Paxlovid, testing whether the drug alleviates symptoms by mitigating any ongoing viral infection in patients’ bodies. The study was supposed to start recruiting in January.

But as of April, RECOVER hasn’t signed up a single patient for any of those clinical trials. And the timeline has slipped over and over again.

Initially, in a letter to members of Congress prompted by STAT’s March 2022 reporting on the initiative’s slow start, the NIH told lawmakers that the agency expected to launch clinical trials by that fall. But by August, the estimated launch had slipped to “by the end of 2022.” Then, another delay became public in December, when one of the NIH officials leading RECOVER told advisers that clinical trials would begin by the first quarter of 2023. Now, Duke University, which is overseeing the clinical trial infrastructure, told STAT and MuckRock it expects the first patients to sign up for trials this summer.

Emanuel said the pace of trials shows little urgency on the part of NIH.

“If you don’t have the pathobiology figured out, you try things. You don’t just slow, slow, slow, walk it,” he said.

All five clinical trial protocols are going through safety reviews, and the Food and Drug Administration is reviewing the trials that will test Paxlovid and other drugs, the Duke Clinical Research Institute said. The institute plans to share these protocols publicly when reviews are complete, but did not provide an estimate for when that will happen.

Faster progress is possible. A similar study at Stanford, which received funding directly from Pfizer, was also announced in October 2022 but has already begun recruiting patients. This trial was “able to be more flexible and get the study started faster” in comparison to RECOVER because it’s smaller, said Upinder Singh, the study’s principal investigator. Singh and her colleagues are only testing Paxlovid and doing so at only one location, rather than comparing different treatments.

Duke was also supposed to create a patient registry to collect information about long Covid patients, but that initiative hasn’t been launched, either.

“A patient registry is still planned, but the scope is being reassessed to most effectively meet the needs of the Initiative,” Duke said.

Tracking Long Covid

Rather than prioritizing treatments from the start, the NIH used much of its long Covid funding on a large-scale study to track long Covid symptoms and learn how the disease works. This choice has frustrated patients because thousands of other studies have already answered many major questions about the condition.

“We didn’t need to recreate” existing studies that already answered these questions, said Cole, the long Covid patient. Researchers have been compiling lists of common symptoms since summer 2020, she said. For Cole, fatigue and brain fog are the most debilitating aspects of the condition.

And even the symptom study is moving slowly, in part because the initiative has failed to bring in healthy people who could be compared against long Covid patients. RECOVER quickly filled its slots for people who had Covid more than 30 days prior to their recruitment, but is still looking for people who were infected recently, study lead Leora Horwitz said in a statement. Most study sites closed enrollment for long Covid patients at the end of August 2022.

The majority of the scientific findings to emerge from RECOVER so far have been based on small groups of patients or on electronic health records, rather than on the thousands of people who signed up to participate.

The crawling pace of the government’s long Covid efforts stand in stark contrast with the government’s wildly successful partnership with the pharmaceutical industry to get Covid-19 vaccines to market in less than 12 months. There are no ongoing efforts to support independent private-sector companies or researchers trying to study treatments for long Covid through the NIH, even though some have proved promising. Just this month, the White House left long Covid out of a $5 billion effort to research next-generation Covid-19 treatments and vaccines.

Long Covid researchers feel there needs to be greater urgency. Singh compared the pressure that she’s currently under to the pressure many scientists faced earlier in the pandemic when studying vaccines and treatments. “We as a scientific community need to focus on long Covid and find solutions for long Covid,” she said.

Topol echoed this sentiment, citing a recent opinion piece in Scientific American that called for an Operation Warp Speed for long Covid treatments. “That’s what should have happened,” he said.

Where Did Money Go?

It’s almost impossible to tell where the NIH’s $1.2 billion pot of long Covid money has gone.

There is no single NIH official responsible for leading RECOVER, and the initiative has failed to share basic information that would typically be available for a government research project of this scale.

Unlike Operation Warp Speed and other Covid efforts, the NIH has outsourced much of the work of running RECOVER to outside organizations. New York University, RTI International, Mayo Clinic, Massachusetts General Hospital, and Duke University are responsible for various parts of the initiative.

Many of the research projects associated with RECOVER have been funded through these organizations rather than directly from the NIH. This process makes it hard to track how decisions are made or how money is spent through public databases, said Michael Sieverts, a member of the long Covid Patient-Led Research Collaborative who has a background in federal budgeting for scientific research.

Public records requests that MuckRock filed to the agency in late 2022, intended to answer questions about RECOVER’s funding, are still incomplete as of mid-April. Sieverts has similarly asked questions to NIH officials and received no responses.

The organization of RECOVER itself is convoluted, and difficult to figure out even for patient advocates who are directly involved, they said. It’s advised by a complex series of committees, some of which aren’t even posted on the initiative’s website. There’s no one person ultimately responsible for coordinating among the different institutes — and requests for information about the leadership hierarchy have been ignored.

“They don’t have an org chart for the entire thing that exists, after two-plus years,” said Diana Güthe, the founder of Survivor Corps and a RECOVER adviser who has asked at nearly every meeting she’s attended.

Lauren Stiles, a patient advocate and president and CEO of Dysautonomia International who serves on several RECOVER committees, shared similar concerns.

“There’s a complete lack of transparency. When we ask who made this decision … they won’t tell us,” Stiles said.

Budget Squeeze

As a result, when RECOVER says it’s running out of funds, it’s hard to identify who is responsible for major decisions.

In response to questions about the initiative’s budget, the NIH said it has no money available for additional programming. The agency said $811 million has been legally committed to various activities, and the rest is earmarked to support future research activities.

The budget restrictions are having practical impacts already.

A RECOVER advisory committee responsible for ranking and evaluating potential treatment options was put on hiatus “due to a lack of funds,” the committee’s leader told members in late January, per an email exchange shared with STAT and MuckRock that has not been previously reported.

The NIH told STAT and MuckRock that the committee was paused because the clinical trial medicines, devices, and treatment programs have been chosen. However, the agency said that the RECOVER clinical trials are “adaptive platform trials,” which means they are designed with the intention of removing and adding treatments as new information becomes available.

This current budget squeeze didn’t come without warning: The NIH was well-aware last summer that the agency wouldn’t have enough money to run clinical trials that matched the initiative’s goals of reaching patients with diverse symptoms.

One of RECOVER’s co-chairs wrote to Congress in June that “additional resources are necessary” to test the full range of treatments needed.

But the Biden administration isn’t taking any action to get more funding within the agency, or from lawmakers.

NIH acting Director Lawrence Tabak told patient advocates that the agency isn’t planning on directing any further funding for RECOVER within the agency. The agency said that such a request would potentially undercut a failed request for supplemental funding that Congress ignored last year.

The Biden administration didn’t request any new funds for RECOVER in its 2024 budget, a largely aspirational document that reflects the administration’s financial priorities.

The budget did include $130 million in long Covid-related asks for other agencies, including for the Health Resources and Services Administration to support care for long Covid patients with complex needs and to educate primary care providers, and for the Agency for Healthcare Research and Quality to research the delivery of long Covid care and to establish long Covid care hubs.

There’s also little accountability for NIH leaders to disclose how funds are spent or respond to other concerns with RECOVER because an entity intended to oversee long Covid research across the federal government hasn’t been created.

In April 2022, President Biden issued a presidential memorandum calling on federal agencies to “harness the full potential” of the government, in partnership with private sector partners, to respond to long Covid.

The follow-through has been lacking on the initiative’s highest-profile goal.

In August, in a congressionally mandated national long Covid research plan, the Biden administration said it would create an Office of Long Covid Research and Practice at HHS. This month, HHS put out a fact sheet touting the administration’s progress in reaching its goals — and omitted any mention of the office.

An HHS spokesperson said that the department is working to develop the office, and requested funding in next year’s White House’s budget for the Office of the Assistant Secretary for Health to coordinate response efforts to long Covid.

“It seems to have been like, well, if we don’t do anything, maybe no one will notice,” said Güthe. “It’s so important to do an evaluation of what was promised. What’s been accomplished, and what hasn’t?”

Exercise as Treatment

A huge chunk of funding to study a chronic illness like long Covid is rare, so any clinical trials that the NIH chooses to run are crucial choices — and some doctors and advocacy groups have voiced serious concerns about the selection of one clinical trial in particular.

That trial would test exercise as a potential long Covid treatment, despite years of research suggesting that exercise could harm patients and set back further study.

Many people with long Covid have similar symptoms to people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a debilitating condition that often follows viral infection. The defining feature of ME/CFS is intense fatigue and worsening of other health issues after physical or mental activity. This symptom, known as post-exertional malaise, often occurs with a lag, which can make it tough for doctors to diagnose — and even for patients to recognize themselves.

“What often happens is, people will go for a walk, they may not feel it for a day or two, and then suddenly, they feel ill on the third day,” said Adam Lowe, a ME/CFS patient and co-founder of advocacy group U.K. branch of the Myalgic Encephalomyelitis Action Network, or MEAction. Patients might suddenly become bed-bound and have trouble focusing, he said.

This worsening of symptoms happens because a patient isn’t producing and using energy in the same way as a healthy person, said Todd Davenport, a professor at University of the Pacific who has studied exercise and this condition. It’s an internal change similar to the whole-body exhaustion that a marathon runner might experience at the finish line of their race.

A number of past studies and surveys of patients have demonstrated how dangerous exercise can be for people with ME/CFS. Many patients told to exercise by their doctors later dropped out of studies or treatment regimens, citing worsening symptoms. One infamous trial that pointed to exercise as a potential treatment was later discredited as deeply flawed.

Studying exercise as a treatment could “frame long Covid as something that can be overcome with grit and hard work,” said Jaime Seltzer, the director of scientific and medical outreach at MEAction, arguing that such framing is “unsound and ethically troubling.”

Not all patients with long Covid experience post-exertional malaise, and those who don’t could find exercise helpful, Davenport said. In those cases, slow and careful exercise through a rehabilitation or physical therapy program might help repair energy systems that have fallen out of shape.

But it may be difficult to distinguish between these different groups of patients, unless a clinical trial is set up with the utmost caution. “Ideally, what you would want is a very coherent, very specific set of inclusion and exclusion criteria,” Davenport said. Otherwise, the study would risk producing results that oversimplify long Covid, he added, leading doctors to widely prescribe a treatment that doesn’t work for some or many.

Scientists and patient advocates responsible for advising RECOVER have warned that an exercise trial could harm patients, but received mixed responses. Patients involved in the study sent emails and social media posts demanding that RECOVER stop the planned trial, while MEAction sent a public letter to NIH leaders.

Scientists and clinicians on an NIH advisory committee focused on rehabilitation similarly suggested that post-exertional malaise could be a dangerous result of the trial, according to internal emails shared with STAT and MuckRock. In response, NIH program officer Antonello Punturieri pushed back on the concerns. Punturieri cited clinical guidelines from the World Health Organization and a U.K. agency, even though both recommend against exercise for people with ME/CFS.

In response to these concerns, RECOVER set up internal meetings including researchers in charge of the exercise study, patient representatives, and the initiative’s top advisory committee. “Work is now underway to further revise that protocol” based on these meetings, the Duke Clinical Research Institute said.

The study’s planned revisions will address concerns about patient safety, such as monitoring for post-exertional malaise after exercise. But it’s unclear how the researchers will do this screening, or whether ME/CFS doctors will be involved.

Even with revision, experts and patient advocates remain concerned that the exercise study takes resources away from other research and could lead to harmful recommendations from doctors. If RECOVER finds exercise is helpful for some patients, asked JD Davids, author of a petition asking the NIH to stop this trial, “What are the chances that doctors would correctly understand how limited this recommendation is? I think it’s very low.”

‘No Profit Margin for Anyone’

It’s not like there aren’t plenty of potential treatment options worth studying.

Topol and other researchers compiled a full table of other treatment candidates for a review paper published in Nature in January. Experts on one of RECOVER’s advisory committees compiled a similar list, for a paper published in March.

Given “the number of other candidate treatments out there, I can’t imagine why you would choose graded exercise therapy,” said Julia Moore Vogel, a researcher at the Scripps Translational Institute living with long Covid, and co-author of the Nature review paper. Vogel is leading a study of wearable devices for long Covid, which will start with about 500 participants despite planning for up to 100,000.

One study has even reported results already, via a preprint shared by The Lancet in early March. The trial found that metformin, a common treatment for diabetes that also has antiviral properties, lowered Covid patients’ risk of developing long-term symptoms by about 42%.

This research group actually didn’t set out to study long Covid, said David Boulware, one of the scientists and an infectious disease physician at the University of Minnesota Medical School. The initial goal was to evaluate potential treatments for acute Covid-19, but the team added long Covid tracking partway through the trial.

And it’s unlikely to get further study without some kind of government assistance. The initial study relied on philanthropic funding, and additional grants would be needed to keep studying this generic drug.

“It’s a great drug, it’s cheap, it’s available worldwide,” Boulware said, “but there’s no profit margin for anyone to study it.”

There may be similar concerns for research into low-dose naltrexone, an off-label use of the addiction drug that has become common for long Covid and other chronic diseases. In low doses, naltrexone can help reduce inflammation in the immune and neurological systems, potentially alleviating long Covid symptoms.

But because the drug has been widely available for decades, pharmaceutical companies aren’t motivated to fund large trials. A few small clinical trials are underway, according to reporting by Rolling Stone.

The lack of help from NIH has left biotech executives frustrated.

“You have to understand what you’re trying to tackle, so we support that, of course. But as patients will tell you, we want intervention, not observation,” said Axcella CEO Bill Hinshaw. His Massachusetts-based company has gone all in on testing a drug candidate to treat long Covid symptoms, without any help from NIH.

Tonix Pharmaceuticals, which is developing a fibromyalgia medication that the company is hoping could be an effective treatment for long Covid symptoms, didn’t receive any funding from NIH either, despite putting in an application.

“I hope there are more therapeutics trials. And I think that the therapeutics trials can go hand in hand with the natural history kind of studies like RECOVER,” Tonix CEO Seth Lederman said.

Patients and experts fear that if RECOVER is the extent of federal effort to study long Covid, the condition could fall into the longstanding pattern of apathy and lack of urgency that has made breakthroughs in chronic illness treatment challenging.

“It’s clear that there are a lot of people at the NIH who are dedicated and determined, trying to figure this out,” said Charlie McCone, a patient representative at RECOVER. As a result, “patients are confused” why only a handful of clinical trials have been planned and none of those have launched yet, he said.

As the NIH initiative drags its feet, patients are left largely on their own to research potential treatments, said Cole, the Brooklyn-based patient, who has been struggling with symptoms since April 2020. “Because we’re not funding these promising treatments, and we’re not disseminating them through the medical system, it’s left to me to figure out how to make that happen for myself,” she said.

Cole, like many others in the long Covid community, feels abandoned by the federal government and health care system at large. If her symptoms worsen to the point that she can no longer work, she said, “the system’s not going to be there to pick me up.”

This story was originally published by MuckRock and STAT News. It is republished under a Creative Commons (BY-ND 4.0) license. Funding came from Boston Globe Media and Columbia University’s Brown Institute for Media Innovation.

As Pandemic Emergency Ends, People with Long Covid Feel Abandoned

By Jackie Fortiér, KFF Health News  

Lost careers. Broken marriages. Dismissed and disbelieved by family and friends.

These are some of the emotional and financial struggles long covid patients face years after their infection. Physically, they are debilitated and in pain: unable to walk up the stairs, focus on a project, or hold down a job. Facing the end of the federal public health emergency in May, many people experiencing lingering effects of the virus say they feel angry and abandoned by policymakers eager to move on.

“Patients are losing hope,” said Shelby Hedgecock, a self-described long covid survivor from Knoxville, Tennessee, who now advocates for patients like herself. “We feel swept under the rug.”

The Centers for Disease Control and Prevention estimated in March that 6% of U.S. adults, or about 16 million, were experiencing long covid, or ongoing health problems that continue or emerge after a bout of covid-19. Researchers estimate that 1.6% of U.S. adults, or about 4 million, have symptoms that have significantly reduced their ability to carry out day-to-day activities.

While patients are no longer contagious, their health issues can stretch on and affect almost every system in the body. More than 200 symptoms and conditions, including fatigue and depression, are linked to long covid, said Linda Geng, a physician who treats patients at Stanford Medicine’s Post-Acute COVID-19 Syndrome Clinic.

The severity and duration of long covid vary. Some people recover in a few weeks, while a smaller number have debilitating and lingering health issues. There is currently no test, treatment, or cure. There’s not even an accepted medical definition.

“When you don’t have any tests that show that anything’s abnormal, it can be quite invalidating and anxiety-provoking,” Geng said.

The physical and emotional toll has left some feeling hopeless. A 2022 study of adults in Japan and Sweden found that those with post-covid conditions were more than twice as likely to develop mental health issues, including depression, anxiety, and post-traumatic stress, as people without them.

“One of my friends committed suicide in May of 2021,” Hedgecock said. “She had a mild covid infection, and she progressively had medical complications continuously pop up, and it just got so bad that she decided to end her life.”

In Los Angeles County, 46% of adults who contracted covid were fully recovered a month later, but the rest — a majority — reported one or more continuing symptoms, according to a 675-patient study by the University of Southern California’s COVID-19 Pandemic Research Center. The researchers found chronic fatigue topped the list of health issues, followed by brain fog and persistent cough, all of which affect people’s daily lives.

Among the respondents who identified as living with long covid, 77% said their condition limited daily activities such as going to school or work or socializing. One-quarter reported experiencing severe limitations.

Taking antivirals cuts the risk of developing long covid in people who are newly infected. But for people already suffering, medical science is trying to catch up.

Here’s a look at Hedgecock and two other patients who have had long covid for years.

A Debilitating Brain Injury

Before contracting covid during spring 2020, Hedgecock’s life revolved around fitness. She worked as a personal trainer in Los Angeles and competed in endurance competitions on the weekends. At 29, she was about to launch an online wellness business, then she started having trouble breathing.

“One of the scariest things that happened to me was I couldn’t breathe at night,” Hedgecock said. “I did go to the emergency room on three different occasions, and each time I was told, ‘You’re up and you’re moving. You’re young; you’re healthy. It’s going to be fine.’”

Her primary care physician at the time told her she didn’t need supplemental oxygen even though her oxygen saturation dipped below normal at night, leaving her gasping for breath and crying in frustration.

Her condition kept her from one of her favorite hobbies, reading, for 19 months.

“I couldn’t look at a page and tell you what it said. It was like there was a disconnect between the words and my brain,” she said. “It was the strangest, most discouraging thing ever.”

SHELBY HEDGECOCK

Months later, under the direction of a specialist, Hedgecock underwent a test measuring electrical activity in the brain. It revealed her brain had been starved of oxygen for months, damaging the section controlling memory and language.

Since then, she has moved back to Tennessee to be close to family. She doesn’t leave her apartment without a medical alert button that can instantly call an ambulance. She works with a team of specialists, and she feels lucky; she knows people in online long covid groups who are losing health coverage as Medicaid pandemic protections expire, while others remain unable to work.

“A lot of them have lost their life savings. Some are experiencing homelessness,” she said.

In Bed for a Year

Julia Landis led a fulfilling life as a therapist before she contracted covid in spring 2020.

“I was really able to help people and it was great work and I loved my life, and I’ve lost it,” said the 56-year-old, who lives with her husband and dog in Ukiah, California.

JULIA LANDIS

In 2020, Landis was living in an apartment in Phoenix and received treatment via telehealth for her covid-related bronchitis. What started out as a mild case of covid spiraled into severe depression.

“I just stayed in bed for about a year,” she said.

Her depression has continued, along with debilitating pain and anxiety. To make up for her lost income, Landis’ husband works longer hours, which in turn exacerbates her loneliness.

“It would be nice to be living somewhere where there were people around seven days a week so I wouldn’t have to go through days of being just terrified to be alone all day,” Landis said. “If this were cancer, I’d be living with family. I’m sure of it.”

Landis refers to herself as a professional patient, filling her days with physical therapy and medical appointments. She’s gradually improving and can socialize on occasion, though it leaves her exhausted and can take days to recover.

“It’s terrifying because there’s just no way of knowing if this is going to be for the rest of my existence,” she said.

‘I Felt Betrayed’

Linda Rosenthal, a 65-year-old retired high school paraprofessional, has long covid symptoms, including inflammation in her chest that makes breathing difficult. She has found it hard to get medical care.

She called and set up a treatment plan with a local cardiologist near her home in Orange County, California, but received a letter five days later telling her he would no longer be able to provide her medical services.

The letter gave no reason for the cancellation.

“I was so surprised,” she said. “And then I felt betrayed because it is terrible to get a letter where a doctor, although within their rights, says that they don’t want you for a patient anymore, because it causes self-doubt.”

LINDA ROSENTHAL

Rosenthal found another cardiologist willing to do telehealth visits and who has staff wear masks in the office even though the state rule has expired. The practice, however, is more than an hour’s drive from where she lives.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Kaiser Family Foundation.

Long Covid Raises Risk of Heart Problems

By Pat Anson, PNN Editor

Headaches, fatigue, shortness of breath, and cognitive problems are common symptoms of Long COVID, a persistent and puzzling illness that can linger for months or years after the initial COVID-19 infection.     

Two new studies being presented at the American College of Cardiology’s Annual Scientific Session suggest that people with Long COVID may also be at risk of long-term cardiovascular problems.

“COVID-19 is more than a simple respiratory disease — it is a syndrome that can affect the heart,” said Joanna Lee, a medical student at David Tvildiani Medical University and scholar at the Global Remote Research Scholars Program (GRRSP). “Clinicians should be aware that cardiac complications can exist and investigate further if a patient complains of these symptoms, even a long time after contracting COVID-19.”

Lee and her colleagues reviewed findings from 11 major studies involving 5.8 million people, in what’s believed to be the largest effort to date to examine cardiovascular complications from long COVID. They found that Long COVID more than doubles a person’s risk of developing cardiac complications compared to a control group.

Researchers did not investigate what caused the association between Long COVID and heart complications, but they suspect that chronic inflammation plays a role. People with Long Covid often have persistently high inflammatory markers – something healthcare providers should be alert to.

“Coordinated efforts among primary care providers, emergency room staff and cardiologists could help with early detection and mitigation of cardiac complications among long COVID patients,” Lee said. “For patients, if you had COVID-19 and you continue to have difficulty breathing or any kind of new heart problems, you should go to the doctor and get it checked out.”

In the second study, researchers at Intermountain Health in Salt Lake City looked at health data for nearly 150,000 patients who tested positive for COVID-19, and found that even those with mild symptoms had significantly higher rates of chest pain six months to a year after the initial infection. But there was no increase in heart attacks or other cardiovascular events.

“While we didn’t see any significant rates of major events like heart attack or stroke in patients who had an initial mild initial infection, we did find chest pains to be a persistent problem, which could be a sign of future cardiovascular complications,” said lead author Heidi May, PhD, a cardiovascular epidemiologist at Intermountain Health. 

A third study, recently published in JAMA Health Forum, supports many of these findings. Researchers at Elevance Health in Indiana compared more than 13,000 Long COVID patients to a control group of 26,000 people without COVID. Those with Long COVID had significantly higher rates of cardiac arrhythmia, blood clots, stroke, coronary artery disease, heart failure, asthma and mortality.

Notably, nearly 3 out of 4 had only mild COVID symptoms and were not hospitalized during the initial infection, suggesting that the health of all COVID patients needs to be monitored long-term.

“From a health policy perspective, these results also indicate a meaningful effect on future health care utilization, and even potential implications for labor force participation,” researchers said.

About one in every five patients infected with COVID-19 develops symptoms of Long COVID. A recent study found that COVID vaccines appear to significantly reduce the risk of getting Long COVID.

The CDC estimates there were 103 million confirmed U.S. cases of COVID-19, resulting in 1.13 million deaths.

Most Long Covid Cases Start with Mild Covid-19 Symptoms

By Sarah Wulf Hanson and Theo Vos, University of Washington

Even mild COVID-19 cases can have major and long-lasting effects on people’s health. That is one of the key findings from our recent multicountry study on long COVID-19 – or long COVID – recently published in the Journal of the American Medical Association.

Long COVID is defined as the continuation or development of symptoms three months after the initial infection from SARS-CoV-2, the virus that causes COVID-19. These symptoms last for at least two months after onset with no other explanation.

We found that a staggering 90% of people living with long COVID initially experienced only mild illness with COVID-19. After developing long COVID, however, the typical person experienced symptoms including fatigue, shortness of breath and cognitive problems such as brain fog – or a combination of these – that affected daily functioning.

These symptoms had an impact on health as severe as the long-term effects of traumatic brain injury. Our study also found that women have twice the risk of men and four times the risk of children for developing long COVID.

We analyzed data from 54 studies reporting on over 1 million people from 22 countries who had experienced symptoms of COVID-19. We counted how many people with COVID-19 developed clusters of new long-COVID symptoms and determined how their risk of developing the disease varied based on their age, sex and whether they were hospitalized for COVID-19.

We found that patients who were hospitalized for COVID-19 had a greater risk of developing long COVID – and of having longer-lasting symptoms – compared with people who had not been hospitalized. However, because the vast majority of COVID-19 cases do not require hospitalization, many more cases of long COVID have arisen from these milder cases despite their lower risk.

Among all people with long COVID, our study found that nearly one out of every seven were still experiencing these symptoms a year later, and researchers don’t yet know how many of these cases may become chronic.

Long COVID can affect nearly any organ in the body.

Why It Matters

Compared with COVID-19, relatively little is known about long COVID.

Our systematic, multicountry analysis of this condition delivered findings that illuminate the potentially steep human and economic costs of long COVID around the world. Many people who are living with the condition are working-age adults. Being unable to work for many months could cause people to lose their income, their livelihoods and their housing. For parents or caregivers living with long COVID, the condition may make them unable to care for their loved ones.

We think, based on the pervasiveness and severity of long COVID, that it is keeping people from working and therefore contributing to labor shortages. Long COVID could also be a factor in how people losing their jobs has disproportionately affected women.

We believe that finding effective and affordable treatments for people living with long COVID should be a priority for researchers and research funders. Long COVID clinics have opened to provide specialized care, but the treatments they offer are limited, inconsistent and may be costly.

Unanswered Questions

Long COVID is a complex and dynamic condition – some symptoms disappear, then return, and new symptoms appear. But researchers don’t yet know why.

While our study focused on the three most common symptoms associated with long COVID that affect daily functioning, the condition can also include symptoms like loss of smell and taste, insomnia, gastrointestinal problems and headaches, among others. But in most cases these additional symptoms occur together with the main symptoms we made estimates for.

There are many unanswered questions about what predisposes people to long COVID. For example, how do different risk factors, including smoking and high body-mass index, influence people’s likelihood of developing the condition? Does getting reinfected with SARS-CoV-2 change the risk for long COVID? Also, it is unclear how protection against long COVID changes over time after a person has been vaccinated or boosted against COVID-19.

COVID-19 variants also present new puzzles. Researchers know that the omicron variant is less deadly than previous strains. Initial evidence shows lower risk of long COVID from omicron compared with earlier strains, but far more data is needed.

Most of the people we studied were infected with the deadlier variants that were circulating before omicron became dominant. We will continue to build on our research on long COVID as part of the Global Burden of Disease study – which makes estimates of deaths and disability due to all diseases and injuries in every country in the world – in order to get a clearer picture of how COVID-19’s long-term toll shifted once omicron arrived.

Sarah Wulf Hanson, PhD, and Theo Vos, MD, are research scientists at the Institute for Health Metrics and Evaluation at the University of Washington, which is coordinating the Global Burden of Disease study.

This article originally appeared in The Conversation and is republished with permission.

Treating Long Covid Still a Mystery

By Blake Farmer, Kaiser Health News

Medical equipment is still strewn around the house of Rick Lucas, 62, nearly two years after he came home from the hospital. He picks up a spirometer, a device that measures lung capacity, and takes a deep breath — though not as deep as he’d like.

Still, Lucas has come a long way for someone who spent more than three months on a ventilator because of covid-19.

“I’m almost normal now,” he said. “I was thrilled when I could walk to the mailbox. Now we’re walking all over town.”

Dozens of major medical centers have established specialized covid clinics around the country. A crowdsourced project counted more than 400. But there’s no standard protocol for treating long covid. And experts are casting a wide net for treatments, with few ready for formal clinical trials.

It’s not clear just how many people have suffered from symptoms of long covid. Estimates vary widely from study to study — often because the definition of long covid itself varies. But the more conservative estimates still count millions of people with this condition.

For some, the lingering symptoms are worse than the initial bout of covid. Others, like Lucas, were on death’s door and experienced a roller-coaster recovery, much worse than expected, even after a long hospitalization.

RICK LUCAS

Symptoms vary widely. Lucas had brain fog, fatigue, and depression. He’d start getting his energy back, then go try light yardwork and end up in the hospital with pneumonia. It wasn’t clear which ailments stemmed from being on a ventilator so long and which signaled the mysterious condition called long covid.

“I was wanting to go to work four months after I got home,” Rick said over the laughter of his wife and primary caregiver, Cinde.

“I said, ‘You know what, just get up and go. You can’t drive. You can’t walk. But go in for an interview. Let’s see how that works,’” Cinde recalled.

Rick did start working earlier this year, taking short-term assignments in his old field as a nursing home administrator. But he’s still on partial disability.

Why has Rick mostly recovered while so many haven’t shaken the symptoms, even years later?

“There is absolutely nothing anywhere that’s clear about long covid,” said Dr. Steven Deeks, an infectious disease specialist at the University of California-San Francisco. “We have a guess at how frequently it happens. But right now, everyone’s in a data-free zone.”

Researchers like Deeks are trying to establish the condition’s underlying causes. Some of the theories include inflammation, autoimmunity, so-called microclots, and bits of the virus left in the body. Deeks said institutions need more money to create regional centers of excellence to bring together physicians from various specialties to treat patients and research therapies.

No Cure or Treatment

Patients say they are desperate and willing to try anything to feel normal again. And often they post personal anecdotes online.

“I’m following this stuff on social media, looking for a home run,” Deeks said.

The National Institutes of Health promises big advances soon through the RECOVER Initiative, involving thousands of patients and hundreds of researchers.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” Dr. Gary Gibbons, director of the National Heart, Lung, and Blood Institute, told NPR. “It is important that we help find solutions for everyone. This is why there will be multiple clinical trials over the coming months.”

Meanwhile, tension is building in the medical community over what appears to be a grab-bag approach in treating long covid ahead of big clinical trials. Some clinicians hesitate to try therapies before they’re supported by research.

Dr. Kristin Englund, who oversees more than 2,000 long covid patients at the Cleveland Clinic, said a bunch of one-patient experiments could muddy the waters for research. She said she encouraged her team to stick with “evidence-based medicine.”

“I’d rather not be just kind of one-off trying things with people, because we really do need to get more data and evidence-based data,” she said. “We need to try to put things in some sort of a protocol moving forward.”

It’s not that she lacks urgency. Englund experienced her own long covid symptoms. She felt terrible for months after getting sick in 2020, “literally taking naps on the floor of my office in the afternoon,” she said.

More than anything, she said, these long covid clinics need to validate patients’ experiences with their illness and give them hope. She tries to stick with proven therapies.

For example, some patients with long covid develop POTS — a syndrome that causes them to get dizzy and their heart to race when they stand up. Englund knows how to treat those symptoms. With other patients, it’s not as straightforward. Her long covid clinic focuses on diet, sleep, meditation, and slowly increasing activity.

But other doctors are willing to throw all sorts of treatments at the wall to see what might stick.

At the Lucas house in Tennessee, the kitchen counter can barely contain the pill bottles of supplements and prescriptions. One is a drug for memory. “We discovered his memory was worse [after taking it],” Cinde said.

Other treatments, however, seemed to have helped. Cinde asked their doctor about her husband possibly taking testosterone to boost his energy, and, after doing research, the doctor agreed to give it a shot.

“People like myself are getting a little bit out over my skis, looking for things that I can try,” said Dr. Stephen Heyman, a pulmonologist who treats Rick Lucas at the long covid clinic at Ascension Saint Thomas in Nashville.

He’s trying medications seen as promising in treating addiction and combinations of drugs used for cholesterol and blood clots. And he has considered becoming a bit of a guinea pig himself.

Heyman has been up and down with his own long covid. At one point, he thought he was past the memory lapses and breathing trouble, then he caught the virus a second time and feels more fatigued than ever.

“I don’t think I can wait for somebody to tell me what I need to do,” he said. “I’m going to have to use my expertise to try and find out why I don’t feel well.”

DR. STEPHEN HEYMAN

This story is from a reporting partnership that includes WPLN, NPR, and Kaiser Health News, a national newsroom that produces in-depth journalism about health issues.

People With Long Covid Face Barriers to Getting Disability

By Betsy Ladyzhets, Kaiser Health News

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

The Biden administration promised support to people with long covid, but patient advocates say many are struggling to get government help.

The Centers for Disease Control and Prevention defines long covid broadly, as a “range of ongoing health problems” that can last “weeks, months, or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as a long-term loss of smell.

The Social Security Administration has identified about 40,000 disability claims that “include indication of a covid infection at some point,” spokesperson Nicole Tiggemann said. How many people with long covid are among the more than 1 million disability claims awaiting processing by Social Security is unknown.

In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based firm that helps people apply for Social Security, involved people dealing with covid, said T.J. Geist, a director at the firm. Other firms report similar figures.

The long waits for disability assistance often end in denial, in part because long covid patients don’t have the substantial medical evidence that federal officials require, Geist said. There is no standard process for diagnosing long covid. Similarly, Social Security “has yet to give specific guidance on how to evaluate covid claims” for the government officials who review applications, he said.

A recent report from the Brookings Institution estimates that 2 million to 4 million people are out of work because of long covid. A study published in September by the National Bureau of Economic Research puts the number at 500,000.

Advocates suggest that many people with long covid have yet to recognize their need for government benefits and could start applying soon.

“I did not understand that I was disabled for four years because my ability would fluctuate so much,” said Alison Sbrana, a patient-advocate with the long covid support group Body Politic. She has a chronic disease whose symptoms are similar to long covid’s in many cases and has received Social Security disability payments for several years.

“If you apply my timeline to people with long covid, even people who got sick in early 2020, we’re not going to know the full extent of their ability to work or not until 2024,” she said.

Difficult Application Process

In July 2021, the Department of Health and Human Services formally recognized long covid as a disability. Expanding on the recognition, the department and the White House published a report in August 2022 that summarizes the “services and supports” available for people with long covid and others who have experienced long-term impacts from the pandemic.

But accessing support is not as simple as White House announcements may suggest. First, the July 2021 guidance recognized long covid under the Americans with Disabilities Act but didn’t extend to the Social Security Administration, which runs benefit programs.

Under the ADA, long covid patients who can still work may ask their employers for accommodations, such as a space to rest or a more flexible schedule, said Juliana Reno, a New York lawyer who specializes in employee benefits. Social Security, however, has more stringent standards: To receive disability insurance, people must prove their long covid symptoms are so debilitating that they cannot work.

“The application process is very demanding, very confusing for patients,” Sbrana said. “It also entirely depends on you having this substantial breadcrumb trail of medical evidence.”

Most applications are denied in the first round, according to Sbrana and other advocates. Patients typically appeal the decision, often leading to a second denial. At that point, they can request a court hearing. The entire process can take a year or more and usually requires legal assistance.

The pandemic extended these wait times, as Social Security offices closed and did not quickly shift to remote operations. Moreover, common symptoms such as brain fog can make filling out online applications or spending hours on the phone with officials difficult.

Long covid patients who were hospitalized with severe symptoms can submit paperwork from those hospital stays and are more likely to receive benefits, Geist said. But for the people who had mild cases initially, or who have “invisible-type symptoms” like brain fog and fatigue, Geist said, documentation is more difficult. Finding a doctor who understands the condition and can sign off on symptoms may take months.

Amanda Martin, a long covid patient and advocate, is one of those lost workers. Martin got covid in April 2020 while working as a subcontractor for the U.S. Navy and lost that job when they were unable to recover quickly.

At first, unemployment benefits provided support, but Martin’s symptoms — including intense fatigue and brain fog — continued. More than two years after the initial infection, Martin is still “on bed rest 90% of the time,” they said. Martin receives food stamps and Medicaid but doesn’t have help paying for other essentials, such as gas. Their application for federal disability benefits has been denied twice.

“I am currently a year into the [application] process; I have eight to 11 months remaining,” Martin said. “I have $50 in my savings account.”

Many people with long covid don’t have the financial resources to hire a lawyer — or access to a doctor who can help with their documentation, which makes the situation even tougher.

Patient advocacy organizations are pushing for a more efficient application process, specific guidance for officials who evaluate long covid cases, and faster eligibility for Medicare coverage after a disability application is approved. (The typical wait is two years.)

The organizations also serve as support groups for people with long covid, sharing resources and providing reassurance that they aren’t alone. Some organizations, such as the nonprofit Blooming Magnolia, even collect funds for direct distribution to people with long covid. But patients say these efforts don’t come close to the scale of funding needed.

Taveras, the Brooklyn mom, said she knows many other people who are grappling with similar issues. “We’re trying to get support from the government, and we’re not getting it,” she said. Taveras set up a GoFundMe page to request support for her family.

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Brain Changes Found in Patients with Long-Term Lyme Disease

By Pat Anson, PNN Editor

Researchers at Johns Hopkins University have documented changes in the brains of patients with post-treatment Lyme disease that may explain symptoms such as brain fog, memory loss and other cognitive issues. The finding could also have implications for patients with long covid, fibromyalgia, multiple sclerosis, chronic fatigue and other health conditions who have cognitive problems.    

Lyme disease is a bacterial illness spread by ticks that causes a rash, flu-like aches and fever, joint pain and fatigue. Most patients fully recover when treated early with antibiotics, but up to 20% of those with post-treatment Lyme disease (PTLD) have long-term symptoms, including depression, insomnia and cognitive difficulties. There is usually no clinical or laboratory evidence to explain their ongoing issues.

“Objective biologic measures of post-treatment Lyme symptoms typically can’t be identified using regular MRIs, CT scans, or blood tests,” says John Aucott, MD., director of the Johns Hopkins Lyme Disease Clinical Research Center.

Aucott and his colleagues recruited 12 PTLD patients and 18 people without a history of Lyme to undergo functional MRI (fMRI) scans while performing a short-term memory task. The scans allow investigators to track blood flow and other changes in the brain in real time.

Their findings, published in the journal PLOS ONE, suggest that cognitive difficulties in PTLD patients are linked to functional and structural changes in the “white matter” of the brain, which is crucial for processing and relaying information. The imaging tests revealed unusual activity in the frontal lobe, an area of the brain responsible for memory recall and concentration. Patients with post-treatment Lyme needed longer periods of time to complete the memory task.

“We saw certain areas in the frontal lobe under-activating and others that were over-activating, which was somewhat expected,” said lead author Cherie Marvel, PhD, an associate professor of neurology at Johns Hopkins.

“However, we didn’t see this same white matter activity in the group without post-treatment Lyme.”

To confirm their finding, researchers used another form of imaging called diffusion tensor imaging (DTI) on all 12 patients with Lyme and 12 of the non-Lyme participants. DTI detects the direction of water movement within brain tissue. Water was diffusing, or leaking, in the the same white matter regions identified in the fMRI.

Researchers believe the increased activity they saw in white matter may reflect an immune system response in the PTLD patients, which may also explain cognitive issues in patients with other chronic health conditions.

PLOS ONE

“Results reported here may have implications for other diseases in which white matter pathology has been demonstrated (e.g., multiple sclerosis) or in illnesses in which cognitive complaints follow disease onset,” researchers said. “The use of multimodal neuroimaging methods, like the ones used in the current study, may be a viable approach for obtaining information on brain function and structure to identify biomarkers of disease burden.”

Researchers say larger studies with more patients will be needed to confirm their findings, as well as long-term tracking of brain changes from the initial Lyme infection through development of PTLD.

Nearly 500,000 people are believed to get Lyme disease each year in the United States. Diagnoses of Lyme have soared over the past 15 years, according to a recent analysis of insurance claims that found Lyme cases rose 357% in rural areas and 65% in urban areas. The highest rates of Lyme were in New Jersey, Vermont, Maine, Rhode Island and Connecticut.

Experimental Vaccines Target Epstein-Barr Virus

By Liz Szabo, Kaiser Health News

Maybe you’ve never heard of the Epstein-Barr virus. But it knows all about you.

Chances are, it’s living inside you right now. About 95% of American adults are infected sometime in their lives. And once infected, the virus stays with you.

Most viruses, such as influenza, just come and go. A healthy immune system attacks them, kills them, and prevents them from sickening you again. Epstein-Barr and its cousins, including the viruses that cause chickenpox and herpes, can hibernate inside your cells for decades.

This viral family has “evolved with us for millions of years,” said Blossom Damania, a virologist at the University of North Carolina-Chapel Hill. “They know all your body’s secrets.”

Although childhood Epstein-Barr infections are typically mild, exposure in teens and young adults can lead to infectious mononucleosis, a weeks-long illness that sickens 125,000 Americans a year, causing sore throats, swollen glands, and extreme fatigue. And while Epstein-Barr spends most of its time sleeping, it can reawaken during times of stress or when the immune system is off its game. Those reactivations are linked to a long list of serious health conditions, including several types of cancer and autoimmune diseases.

Scientists have spent years trying to develop vaccines against Epstein-Barr, or EBV. But recently several leaps in medical research have provided more urgency to the quest — and more hope for success. In just the past year, two experimental vaccine efforts have made it to human clinical trials.

What’s changed?

First, the Epstein-Barr virus has been shown to present an even greater threat. New research firmly links it to multiple sclerosis, or MS, a potentially disabling chronic disease that afflicts more than 900,000 Americans and 2.8 million people worldwide.

The journal Science in January published results from a landmark 20-year study of 10 million military personnel that offers the strongest evidence yet that Epstein-Barr can trigger MS. The new study found that people infected with Epstein-Barr are 32 times as likely as people not infected to develop MS.

And shedding new light on the mechanisms that could explain that correlation, a separate group of scientists published a study in Nature describing how the virus can cause an autoimmune reaction that leads to MS.

The disease, which usually strikes between ages 20 and 40, disrupts communication between the brain and other parts of the body and is often marked by recurring episodes of extreme fatigue, blurred vision, muscle weakness, and difficulty with balance and coordination. At its worst, MS can lead to impaired speech and paralysis.

“Now that we know that Epstein-Barr is very tightly linked to MS, we could save a lot of lives if we develop the vaccine now.”

— Blossom Damania, Virologist

Amplifying that newfound urgency, several new studies suggest that reactivation of the Epstein-Barr virus also is involved with some cases of long covid, a little-understood condition in which patients experience lingering symptoms that often resemble mononucleosis.

And just as crucial to the momentum: Advances in vaccine science spurred by the pandemic, including the mRNA technology used in some covid vaccines, could accelerate development of other vaccines, including ones against Epstein-Barr, said Dr. Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine. Hotez co-created a low-cost, patent-free covid vaccine called Corbevax.

Some researchers question the need for a vaccine that targets a disease like MS that, while debilitating, remains relatively rare.

Eliminating Epstein-Barr would require vaccinating all healthy children even though their risk of developing cancer or multiple sclerosis is small, said Dr. Ralph Horwitz, a professor at the Lewis Katz School of Medicine at Temple University.

Before exposing children to the potential risks of a new vaccine, he said, scientists need to answer basic questions about MS. For example, why does a virus that affects nearly everyone cause disease in a small fraction? And what roles do stress and other environmental conditions play in that equation?

The answer appears to be that Epstein-Barr is “necessary but not sufficient” to cause disease, said immunologist Bruce Bebo, executive vice president for research at the National MS Society, adding that the virus “may be the first in a string of dominoes.”

‘We Could Save a Lot of Lives’

Hotez said researchers could continue to probe the mysteries surrounding Epstein-Barr and MS even as the vaccine efforts proceed. Further study is required to understand which populations might benefit most from a vaccine, and once more is known, Hotez said, such a vaccine possibly could be used in patients found to be at highest risk, such as organ transplant recipients, rather than administered universally to all young people.

“Now that we know that Epstein-Barr is very tightly linked to MS, we could save a lot of lives if we develop the vaccine now,” Damania said, “rather than wait 10 years” until every question is answered.

Moderna and the National Institute of Allergy and Infectious Diseases launched separate clinical trials of Epstein-Barr vaccines over the past year. Epstein-Barr vaccines also are in early stages of testing at Opko Health, a Miami-based biotech company; Seattle’s Fred Hutchinson Cancer Center; and California’s City of Hope National Medical Center.

Scientists have sought to develop vaccines against Epstein-Barr for decades only to be thwarted by the complexities of the virus. Epstein-Barr “is a master of evading the immune system,” said Dr. Jessica Durkee-Shock, a clinical immunologist and principal investigator for NIAID’s trial.

Both MS and the cancers linked to Epstein-Barr develop many years after people are infected. So a trial designed to learn whether a vaccine can prevent these diseases would take decades and a lot of money.

Moderna researchers initially are focusing on a goal more easily measured: the prevention of mononucleosis, which doubles the risk of multiple sclerosis. Mono develops only a month or so after people are infected with Epstein-Barr, so scientists won’t have to wait as long for results.

Mono can be incredibly disruptive on its own, keeping students out of class and military recruits out of training for weeks. In about 10% of cases, the crippling fatigue lasts six months or more. In 1% of cases, patients develop complications, including hepatitis and neurological problems.

For now, the clinical trials for Epstein-Barr immunizations are enrolling only adults. “In the future, the perfect vaccine would be given to a small child,” Durkee-Shock said. “And it would protect them their whole life, and prevent them from getting mono or any other complication from the Epstein-Barr virus.”

The NIAID vaccine, being tested for safety in 40 volunteers, is built around ferritin, an iron-storage protein that can be manipulated to display a key viral protein to the immune system. Like a cartoon Transformer, the ferritin nanoparticle self-assembles into what looks like a “little iron soccer ball,” Durkee-Shock said. “This approach, in which many copies of the EBV protein are displayed on a single particle, has proved successful for other vaccines, including the HPV and hepatitis B vaccine.”

Moderna’s experimental vaccine, being tested in about 270 people, works more like the company’s covid shot. Both deliver snippets of a virus’s genetic information in molecules called mRNA inside a lipid nanoparticle, or tiny bubble of fat. Moderna, which has dozens of mRNA vaccines in development, hopes to learn from each and apply those lessons to Epstein-Barr, said Sumana Chandramouli, senior director and research program leader for infectious diseases at Moderna.

“What the covid vaccine has shown us is that the mRNA technology is well tolerated, very safe, and highly efficacious,” Chandramouli said.

But mRNA vaccines have limitations.

Although they have saved millions of lives during the covid pandemic, the antibody levels generated in response to the mRNA vaccines wane after a few months. It’s possible this rapid loss of antibodies is related specifically to the coronavirus and its rapidly evolving new strains, Hotez said. But if waning immunity is inherent in the mRNA technology, that could seriously limit future vaccines.

Designing vaccines against Epstein-Barr is also more complicated than for covid. The Epstein-Barr virus and other herpesviruses are comparatively huge, four to five times as large as SARS-CoV-2, the coronavirus that causes covid. And while the coronavirus uses just one protein to infect human cells, the Epstein-Barr virus uses many, four of which are included in the Moderna vaccine.

Earlier experimental Epstein-Barr vaccines targeting one viral protein lowered the rate of infectious mononucleosis but failed to prevent viral infection. Targeting multiple viral proteins may be more effective at preventing infection, said Damania, the UNC virologist.

“If you close one door, the other door is still open,” Damania said. “You have to block infection in all cell types to have a successful vaccine that prevents future infections.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Is Another Covid Spike Coming? 6 Tips to Help You Stay Safe

By Celine Gounder, Kaiser Health News

The emergence last year of the highly transmissible omicron variant of the covid-19 virus caught many people by surprise, and led to a surge in cases that overwhelmed hospitals and drove up fatalities. Now we’re learning that omicron is mutating further to better evade the immune system.

Omicron-specific vaccines were authorized by the FDA in August and are recommended by U.S. health officials for anyone 5 or older. Yet only half of adults in the United States have heard much about these booster shots, according to a recent Kaiser Family Foundation poll, and only a third say they’ve gotten one or plan to get one as soon as possible. In 2020 and 2021, covid cases spiked in the U.S. between November and February.

Although we don’t know for sure that we’ll see another surge this winter, here’s what you should know about covid and the updated boosters to prepare.

1. Do I need a covid booster shot this fall?

If you’ve completed a primary vaccination series and are 50 or older, or if your immune system is compromised, get a covid booster shot as soon as possible. Forty percent of deaths are occurring among people 85 and older and almost 90% among people 65 and over. Although people of all ages are being hospitalized from covid, those hospitalizations are also skewing older.

Unvaccinated people, while in the minority in the U.S., are still at the highest risk of dying from covid. It’s not too late to get vaccinated ahead of this winter season. The United Kingdom, whose covid waves have presaged those in the United States by about a month, is beginning to see another increase in cases.

If you’ve already received three or more covid shots, you’re 12 to 49 years old, and you’re not immunocompromised, your risk of hospitalization and death from the disease is significantly reduced and additional boosters are not likely to add much protection.

However, getting a booster shot provides a “honeymoon” period for a couple of months after vaccination, during which you’re less likely to get infected and thus less likely to transmit the virus to others. If you’ll be seeing older, immunocompromised, or otherwise vulnerable family and friends over the winter holidays, you might want to get a booster two to four weeks in advance to better shield them against covid.

You may have other reasons for wanting to avoid infection, like not wanting to have to stay home from work because you or your child is sick with covid. Even if you aren’t hospitalized from covid, it can be costly to lose wages or arrange for backup child care.

One major caveat to these recommendations: You should wait four to six months after your last covid infection or vaccination before getting another shot. A dose administered too soon will be less effective because antibodies from the previous infection or vaccination will still be circulating in your blood and will prevent your immune cells from seeing and responding to vaccination.

2. Do kids need to be vaccinated even if they’ve had covid?

Although children are at lower risk for severe covid than are adults, the stakes for kids are higher than many diseases already recognized as dangerous. Their risk shouldn’t be measured against the risk that covid poses to other age groups but against the risk they face from other preventable diseases.

In the first two years of the pandemic, covid was the fourth- or fifth-leading cause of death in every five-year age bracket from birth to 19, killing almost 1,500 children and teenagers. Other vaccine-preventable diseases like chickenpox, rubella, and rotavirus killed an average of about 20-50 children and teens a year before vaccines became available. By that measure, vaccinating kids against covid is a slam-dunk.

Children who have had covid also benefit from vaccination. The vaccine reduces their risk of hospitalization and missing days of school, when parents might need to stay home with them.

But it’s precisely because the stakes are higher for kids that many parents are anxious about getting their children vaccinated. As recently as July, just after the FDA authorized covid vaccines for children as young as 6 months, a KFF poll found that over half of parents of children under age 5 said they thought vaccines posed a greater risk to the health of their child than getting the disease. And in the most recent poll, half said they had no plans to get their children vaccinated. Covid vaccination rates range from 61% among children ages 12 to 17 to 2% among kids younger than 2.

Similar to influenza, covid is most deadly for the very youngest and oldest. At especially high risk are infants. They’re unlikely to have immunity from infection, and a small share have been vaccinated. Unless their mothers were vaccinated during pregnancy or got covid during pregnancy — the latter of which poses a high risk of death for the mother and of preterm birth for the baby — infants are probably not getting protective antibodies against covid through breast milk. And because infants have small airways and weaker coughs, they’re more likely to have trouble breathing with any respiratory infection, even one less deadly than covid.

3. Will I need a covid shot every year?

It depends on the targets set by public health officials whether covid becomes a seasonal virus like the flu, and how much the virus continues to mutate and evade humanity’s immune defenses.

If the goal of vaccination is to prevent severe disease, hospitalization, and death, then many people will be well protected after their primary vaccination series and may not need additional shots. Public health officials might strongly recommend boosters for older and immunocompromised people while leaving the choice of whether to get boosted to those with lower risk. If the goal of vaccination is to prevent infection and transmission, then repeat boosters will be needed after completing the primary vaccination series and as often as a couple of times a year.

Influenza is a seasonal virus causing infections and disease generally in the winter, but scientists don’t know whether covid will settle into a similar, predictable pattern. In the first three years of the pandemic, the United States has experienced waves of infection in summer. But if the covid virus were to become a wintertime virus, public health officials might recommend yearly boosters. The Centers for Disease Control and Prevention recommends that people 6 months and older get a flu shot every year with very rare exceptions. However, as with the flu, public health officials might still place a special emphasis on vaccinating high-risk people against covid.

And the more the virus mutates, the more often public health officials may recommend boosting to overcome a new variant’s immune evasion. Unfortunately, this year’s updated omicron booster doesn’t appear to provide significantly better protection than the original boosters. Scientists are working on variant-proof vaccines that could retain their potency in the face of new variants.

4. Are more covid variants on the way?

The omicron variant has burst into an alphabet soup of subvariants. The BA.5 variant that surfaced earlier this year remains the dominant variant in the U.S., but the BA.4.6 omicron subvariant may be poised to become dominant in the United States. It now accounts for 14% of cases and is rising. The BA.4.6 omicron subvariant is better than BA.5 at dodging people’s immune defenses from both prior infection and vaccination.

In other parts of the world, BA.4.6 has been overtaken by BA.2.75 and BF.7 (a descendant of BA.5), which respectively account for fewer than 2% and 5% of covid cases in the U.S. The BA.2.75.2 omicron subvariant drove a wave of infections in South Asia in July and August. Although the U.S. hasn’t yet seen much in the way of another variant descended from BA.5 — BQ.1.1 — it is rising quickly in other countries like the U.K., Belgium, and Denmark. The BA.2.75.2 and BQ.1.1 variants may be the most immune-evasive omicron subvariants to date.

BA.4.6, BA.2.75.2, and BQ.1.1 all evade Evusheld, the monoclonal antibody used to prevent covid in immunocompromised people who don’t respond as well to vaccination. Although another medication, bebtelovimab, remains active in treating covid from BA.4.6 and BA.2.75.2, it’s ineffective against BQ.1.1. Many scientists are worried that Evusheld will become useless by November or December. This is concerning because the pipeline for new antiviral pills and monoclonal antibodies to treat covid is running dry without a guaranteed purchaser to ensure a market. In the past, the federal government guaranteed it would buy vaccines in bulk, but funding for that program has not been extended by Congress.

Other omicron subvariants on the horizon include BJ.1, BA.2.3.20, BN.1, and XBB, all descendants of BA.2.

It’s hard to predict whether an omicron subvariant or yet another variant will come to dominate this winter and whether hospitalizations and deaths will again surge in the U.S. Vaccination rates and experience with prior infections vary around the world and even within the United States, which means that the different versions of omicron are duking it out on different playing fields.

While this might all sound grim, it’s important to remember that covid booster shots can help overcome immune evasion by the predominant omicron subvariants.

5. What about long covid?

Getting vaccinated does reduce the risk of getting long covid, but it’s unclear by how much. Researchers don’t know if the only way to prevent long covid is to prevent infection.

Although vaccines may curb the risk of infection, few vaccines prevent all or almost all infections. Additional measures — such as improving indoor air quality and donning masks — would be needed to reduce the risk of infection. It’s also not yet known whether prompt treatment with currently available monoclonal antibodies and antiviral drugs like Paxlovid reduces the risk of developing long covid.

6. Do I need a flu shot, too?

The CDC recommends that anyone 6 months of age or older get an annual flu shot. The ideal timing is late October or early November, before the winter holidays and before influenza typically starts spreading in the U.S. Like covid shots, flu shots provide only a couple of months of immunity against infection and transmission, but an early flu shot is better than no flu shot. Influenza is already circulating in some parts of the United States.

It’s especially important for people 65 or older, pregnant women, people with chronic medical conditions, and children under 5 to get their yearly flu shots because they’re at highest risk of hospitalization and death. Although younger people might be at lower risk for severe flu, they can act as vectors for transmission of influenza to higher-risk people in the community.

High-dose flu vaccines and “adjuvanted” flu vaccines are recommended for people 65 and older. Adjuvants strengthen the immune response to a vaccine. It is safe to get vaccinated for covid and the flu at the same time, but you might experience more side effects like fevers, headache, or body aches.

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

The ‘Parallel Pandemic’ of Long Covid

By Liz Szabo, Kaiser Health News

The latest covid-19 surge, caused by a shifting mix of quickly evolving omicron subvariants, appears to be waning, with cases and hospitalizations beginning to fall. Like past covid waves, this one will leave a lingering imprint in the form of long covid, an ill-defined catchall term for a set of symptoms that can include debilitating fatigue, difficulty breathing, chest pain, and brain fog.

Although omicron infections are proving milder overall than those caused by last summer’s delta variant, omicron has also proved capable of triggering long-term symptoms and organ damage. But whether omicron causes long covid symptoms as often — and as severe — as previous variants is a matter of heated study.

Michael Osterholm, director of the University of Minnesota’s Center for Infectious Disease Research and Policy, is among the researchers who say the far greater number of omicron infections compared with earlier variants signals the need to prepare for a significant boost in people with long covid.

The U.S. has recorded nearly 38 million covid infections so far this year, as omicron has blanketed the nation. That’s about 40% of all infections reported since the start of the pandemic, according to the Johns Hopkins University Coronavirus Research Center.

Long covid “is a parallel pandemic that most people aren’t even thinking about,” said Akiko Iwasaki, a professor of immunobiology at Yale University. “I suspect there will be millions of people who acquire long covid after omicron infection.”

Scientists have just begun to compare variants head-to-head, with varying results. While one recent study in The Lancet suggests that omicron is less likely to cause long covid, another found the same rate of neurological problems after omicron and delta infections.

Estimates of the proportion of patients affected by long covid also vary, from 4% to 5% in triple-vaccinated adults to as many as 50% among the unvaccinated, based on differences in the populations studied.

One reason for that broad range is that long covid has been defined in widely varying ways in different studies, ranging from self-reported fogginess for a few months after infection to a dangerously impaired inability to regulate pulse and blood pressure that may last years. Even at the low end of those estimates, the sheer number of omicron infections this year would swell long-covid caseloads.

“That’s exactly what we did find in the UK,” said Claire Steves, a professor of aging and health at King’s College in London and author of the Lancet study, which found patients have been 24% to 50% less likely to develop long covid during the omicron wave than during the delta wave.

“Even though the risk of long covid is lower, because so many people have caught omicron, the absolute numbers with long covid went up,” Steves said.

Reinfections Raise Risk

A recent study analyzing a patient database from the Veterans Health Administration found that reinfections dramatically increased the risk of serious health issues, even in people with mild symptoms. The study of more than 5.4 million VA patients, including more than 560,000 women, found that people reinfected with covid were twice as likely to die or have a heart attack as people infected only once. And they were far more likely to experience health problems of all kinds as of six months later, including trouble with their lungs, kidneys, and digestive system.

“We’re not saying a second infection is going to feel worse; we’re saying it adds to your risk,” said Dr. Ziyad Al-Aly, chief of research and education service at the Veterans Affairs St. Louis Health Care System.

Researchers say the study, published online but not yet peer-reviewed, should be interpreted with caution. Some noted that VA patients have unique characteristics, and tend to be older men with high rates of chronic conditions that increase the risks for long covid. They warned that the study’s findings cannot be extrapolated to the general population, which is younger and healthier overall.

“We need to validate these findings with other studies,” said Dr. Harlan Krumholz, director of the Yale New Haven Hospital Center for Outcomes Research and Evaluation. Still, he added, the VA study has some “disturbing implications.”

With an estimated 82% of Americans having been infected at least once with the coronavirus as of mid-July, most new cases now are reinfections, said Justin Lessler, a professor of epidemiology at the University of North Carolina Gillings School of Global Public Health.

‘Breathing Through a Straw’

Of course, people’s risk of reinfection depends not just on their immune system, but also on the precautions they’re taking, such as masking, getting booster shots, and avoiding crowds.

New Jersey salon owner Tee Hundley, 43, has had covid three times, twice before vaccines were widely available and again this summer, after she was fully vaccinated. She is still suffering the consequences.

After her second infection, she returned to work as a cosmetologist at her Jersey City salon but struggled with illness and shortness of breath for the next eight months, often feeling like she was “breathing through a straw.”

She was exhausted, and sometimes slow to find her words. While waxing a client’s eyebrows, “I would literally forget which eyebrow I was waxing,” Hundley said. “My brain was so slow.”

When she got a breakthrough infection in July, her symptoms were short-lived and milder: cough, runny nose, and fatigue. But the tightness in her chest remains.

“I feel like that’s something that will always be left over,” said Hundley, who warns friends with covid not to overexert. “You may not feel terrible, but inside of your body there is a war going on.”

Although each omicron subvariant has different mutations, they’re similar enough that people infected with one, such as BA.2, have relatively good protection against newer versions of omicron, such as BA.5. People sickened by earlier variants are far more vulnerable to BA.5.

Several studies have found that vaccination reduces the risk of long covid. But the measure of that protection varies by study, from as little as a 15% reduction in risk to a more than 50% decrease. A study published in July found the risk of long covid dropped with each dose people received.

For now, the only surefire way to prevent long covid is to avoid getting sick. That’s no easy task as the virus mutates and Americans have largely stopped masking in public places. Current vaccines are great at preventing severe illness but do not prevent the virus from jumping from one person to the next.

Scientists are working on next-generation vaccines — “variant-proof” shots that would work on any version of the virus, as well as nasal sprays that might actually prevent spread. If they succeed, that could dramatically curb new cases of long covid.

“We need vaccines that reduce transmission,” Al-Aly said. “We need them yesterday.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Why I Still Take Precautions Against Covid

By Victoria Reed, PNN Columnist

We are three years into the Covid-19 pandemic, and while life has still not returned to normal, it’s understandable for people to be tired of hearing about the virus and less concerned about catching it. Scientists know more about covid and have developed tools to treat and even prevent the most serious outcomes.

But many of us who are suffering from chronic illness or chronic pain are still wearing masks, practicing social distancing and taking other precautions.

As I go out and about in my daily life, I’ve noticed that mask use is somewhat minimal. People don’t seem to be as concerned about the virus and its variants, even as cases are skyrocketing again. I’m one of the few who still wears a mask in crowded indoor places, airplanes and restaurants.

Fortunately, I have not yet been infected with covid. I attribute that to always being cautious in public (sometimes even outside) and when around family members who I know aren’t taking precautions. Being vaccinated and boosted is another layer of protection I believe has helped me.

The choice to be vaccinated is a personal one and should not be looked at as a political issue or be a source of ridicule. The same goes for mask use. Sometimes people look at me funny because I still wear a mask, but I am “allowed” to do that, just as others are equally allowed to stop wearing theirs.

I don’t judge people who choose not to wear a mask, and conversely, I shouldn’t be judged for wearing one.

Part of my caution comes from having a dysfunctional and overactive immune system, which is altered by a medication I take to control symptoms of rheumatoid arthritis (RA). This medication suppresses a certain part of the immune system that is implicated in the development of RA.  Rheumatoid arthritis primarily attacks the joints, but can also attack the heart, lungs and eyes.

Having to take this particular med (commonly called a biologic), makes me more vulnerable to contracting all types of infection, including covid. It also makes it more difficult to recover from infections and can lead to serious or even deadly complications. 

In addition, the threat of possibly ending up with long covid, when symptoms linger for months or longer, is a concern of mine, especially since fatigue is a major part of long covid syndrome. Profound and disabling fatigue is also a feature of RA and fibromyalgia, so anything I can do to prevent another illness that causes fatigue is important to me. Even mild cases of covid can cause long covid, according to researchers.

Covid can also lead to physical complications. Studies have shown that the virus can cause neurological problems, difficulty breathing, joint or muscle pain, blood clots or other vascular issues, chest pain and unpleasant digestive symptoms.

Furthermore, the virus has been associated with increased psychological problems, such as depression and anxiety. The media has reported on the unfortunate suicides of people who had been suffering from long covid and were unable to get any relief besides ending their own lives.

In the long term, it remains to be seen how covid will affect the millions of us who are already suffering from chronic pain and illness. Fortunately, there are treatments that help with the symptoms and recovery for the majority of people who become infected. There are also medications that can save the lives of those who are at high risk of severe illness.

As more time passes, I’m sure other treatments will emerge, and I’m hopeful that as a chronic pain sufferer with multiple chronic illnesses, I will be okay if I do someday end up getting sick with covid.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Fatigue and Headache Common Symptoms of Long Covid

By Pat Anson, PNN Editor

Fatigue, headache and muscle aches are the most common symptoms reported by people suffering from long covid, according to a comprehensive new study by researchers at the Medical College of Georgia (MCG). Cough, changes in smell and taste, fever, chills and cognitive problems also ranked high on the long list of lingering symptoms from COVID-19.

“There are a lot of symptoms that we did not know early on in the pandemic what to make of them, but now it’s clear there is a long COVID syndrome and that a lot of people are affected,” says lead author Elizabeth Rutkowski, MD, an associate professor of neurology at MCG.

The study findings, published in the journal ScienceDirect, involve the first 200 patients enrolled in the COVID-19 Neurological and Molecular Prospective Cohort Study (CONGA) in Georgia. Participants were recruited on average about four months after testing positive for the COVID-19 virus. Researchers eventually hope to recruit about 500 people for CONGA.

While the findings to date are not surprising and are consistent with what other investigators have learned about long covid, Rutkowski says it was surprising that symptoms initially reported by CONGA participants often didn’t match what further testing found.

For example, the majority of participants reported taste and smell changes, but objective testing of both senses did not always line up with what researchers found. Part of the discrepancy may be a change in the quality of their taste and smell rather than pure impaired ability.

“They eat a chicken sandwich and it tastes like smoke or candles or some weird other thing, but our taste strips are trying to depict specific tastes like salty and sweet,” Rutkowski says.

Eighty percent of the first 200 participants reported neurological problems, with fatigue the most common symptom:

Top Ten Symptoms of Long Covid

1. Fatigue 68.5%

2. Headache 66.5%

3. Muscle aches 57%

4. Cough 55.5%

5. Changes in smell 54.5%

6. Changes in taste 54%

7. Fever 50%

8. Chills 48%

9. Nasal Congestion 47.5%

10. Poor Appetite 47%

Nearly half the participants (47%) met the criteria for mild cognitive impairment, with 30% demonstrating impaired vocabulary, 32% having impaired working memory, and 21% reporting confusion. Researchers believe these cognitive issues may reflect the long-term isolation many participants experienced during the pandemic.

“You are not doing what you would normally do, like hanging out with your friends, the things that bring most people joy,” Rutkowski says. “On top of that, you may be dealing with physical ailments, lost friends and family members and loss of your job.”

Blacks Disproportionately Affected

Nearly two-thirds of the 200 CONGA participants were female, with an average age of 45. Nearly 40% were African-American. One of the study’s goals is to get a better understanding of how COVID-19 impacts African-Americans, who make up a third of Georgia’s population.

Researchers found that Black participants were disproportionately affected by long covid, with 75% meeting the criteria for mild cognitive impairment, compared to only 23.4% of white participants. Blacks were also more likely to have impaired vocabulary and memory. The findings likely indicate that cognitive tests assess different ethnic groups differently and may overestimate cognitive impairment in disadvantaged populations.

“African American patients appear to score significantly worse on quantitative cognitive testing compared to Non-Hispanic White patients, which likely underscore the disparities in how cognitive tests assess different ethnic groups due to various systemic factors including differences is socioeconomic status, psychosocial factors, and physical health,” researchers said.

Previous studies have found that Black and Hispanic individuals are twice as likely to be hospitalized by COVID-19, and ethnic and racial minorities are more likely to live in areas with higher rates of infection.

‘Cognitive Rehab’ May Help Clear Brain Fog

By Judith Graham, Kaiser Health News

Eight months after falling ill with covid-19, the 73-year-old woman couldn’t remember what her husband had told her a few hours before. She would forget to remove laundry from the dryer at the end of the cycle. She would turn on the tap at a sink and walk away.

Before covid, the woman had been doing bookkeeping for a local business. Now, she couldn’t add single-digit numbers in her head. Was it the earliest stage of dementia, unmasked by covid? No. When a therapist assessed the woman’s cognition, her scores were normal.

What was going on? Like many people who’ve contracted covid, this woman was having difficulty sustaining attention, organizing activities, and multitasking. She complained of brain fog. She didn’t feel like herself.

But this patient was lucky. Jill Jonas, an occupational therapist associated with the Washington University School of Medicine in St. Louis who described her to me, has been providing cognitive rehabilitation to the patient, and she is getting better.

Cognitive rehabilitation is therapy for people whose brains have been injured by concussions, traumatic accidents, strokes, or neurodegenerative conditions such as Parkinson’s disease. It’s a suite of interventions designed to help people recover from brain injuries, if possible, and adapt to ongoing cognitive impairment. Services are typically provided by speech and occupational therapists, neuropsychologists and neurorehabilitation experts.

In a recent development, some medical centers are offering cognitive rehabilitation to patients with long covid, who have symptoms that persist several months or longer after the initial infection. According to the Centers for Disease Control and Prevention, about 1 in 4 older adults who survive covid have at least one persistent symptom.

“Anecdotally, we’re seeing a good number of people make significant gains with the right kinds of interventions,” said Monique Tremaine, director of neuropsychology and cognitive rehabilitation at Hackensack Meridian Health’s JFK Johnson Rehabilitation Institute in New Jersey.

Among the post-covid cognitive complaints being addressed are problems with attention, language, information processing, memory, and visual-spatial orientation. A recent review in JAMA Psychiatry found that up to 47% of patients hospitalized in intensive care with covid developed problems of this sort.

Seniors More Vulnerable

There’s emerging evidence that seniors are more likely to experience cognitive challenges post-covid than younger people — a vulnerability attributed, in part, to older adults’ propensity to have other medical conditions. Cognitive challenges arise because of small blood clots, chronic inflammation, abnormal immune responses, brain injuries such as strokes and hemorrhages, viral persistence, and neurodegeneration triggered by covid.

Getting help starts with an assessment by a rehabilitation professional to pinpoint cognitive tasks that need attention and determine the severity of a person’s difficulties. One person may need help finding words while speaking, for instance, while another may need help with planning and yet another may not be processing information efficiently. Several deficits may be present at the same time.

Next comes an effort to understand how patients’ cognitive issues affect their daily lives. Among the questions that therapists will ask, according to Jason Smith, a rehabilitation psychologist at the University of Texas Southwestern Medical Center in Dallas: “Is this showing up at work? At home? Somewhere else? Which activities are being affected? What’s most important to you and what do you want to work on?”

To try to restore brain circuits that have been damaged, patients may be prescribed a series of repetitive exercises. If attention is the issue, for instance, a therapist might tap a finger on the table once or twice and ask a patient to do the same, repeating it multiple times. This type of intervention is known as restorative cognitive rehabilitation.

“It isn’t easy because it’s so monotonous and someone can easily lose attentional focus,” said Joe Giacino, a professor of physical medicine and rehabilitation at Harvard Medical School. “But it’s a kind of muscle building for the brain.”

A therapist might then ask the patient to do two things at once: repeat the tapping task while answering questions about their personal background, for instance.

“Now the brain has to split attention — a much more demanding task — and you’re building connections where they can be built,” Giacino explained.

To address impairments that interfere with people’s daily lives, a therapist will work on practical strategies with patients. Examples include making lists, setting alarms or reminders, breaking down tasks into steps, balancing activity with rest, figuring out how to conserve energy, and learning how to slow down and assess what needs to be done before taking action.

A growing body of evidence shows that “older adults can learn to use these strategies and that it does, in fact, enhance their everyday life,” said Alyssa Lanzi, a research assistant professor who studies cognitive rehabilitation at the University of Delaware.

Along the way, patients and therapists discuss what worked well and what didn’t, and practice useful skills, such as using calendars or notebooks as memory aids.

“As patients become more aware of where difficulties occur and why, they can prepare for them and they start seeing improvement,” said Lyana Kardanova Frantz, a speech therapist at Johns Hopkins University. “A lot of my patients say, ‘I had no idea this could be so helpful.’”

Johns Hopkins has been conducting neuropsychiatric exams on patients who come to its post-covid clinic. About 67% have mild to moderate cognitive dysfunction at least three months after being infected, said Dr. Alba Miranda Azola, co-director of Johns Hopkins’ Post-Acute COVID-19 Team. When cognitive rehabilitation is recommended, patients usually meet with therapists once or twice a week for two to three months.

Before this kind of therapy can be tried, other problems may need to be addressed. “We want to make sure that people are sleeping enough, maintaining their nutrition and hydration, and getting physical exercise that maintains blood flow and oxygenation to the brain,” Frantz said. “All of those impact our cognitive function and communication.”

Depression and anxiety — common companions for people who are seriously ill or disabled — also need attention. “A lot of times when people are struggling to manage deficits, they’re focusing on what they were able to do in the past and really mourning that loss of efficiency,” Tremaine said. “There’s a large psychological component as well that needs to be managed.”

Medicare usually covers cognitive rehabilitation, but Medicare Advantage plans may differ in the type and length of therapy they’ll approve and how much they’ll reimburse providers — an issue that can affect access to care.

Still, Tremaine noted, “not a lot of people know about cognitive rehabilitation or understand what it does, and it remains underutilized.” She and other experts don’t recommend digital brain-training programs marketed to consumers as a substitute for practitioner-led cognitive rehabilitation because of the lack of individualized assessment, feedback, and coaching.

Also, experts warn, while cognitive rehabilitation can help people with mild cognitive impairment, it’s not appropriate for people who have advanced dementia.

If you’re noticing cognitive changes of concern, ask for a referral from your primary care physician to an occupational or speech therapist, said Erin Foster, an associate professor of occupational therapy, neurology, and psychiatry at Washington University School of Medicine in St. Louis. Be sure to ask therapists if they have experience addressing memory and thinking issues in daily life, she recommended.

“If there’s a medical center in your area with a rehabilitation department, get in touch with them and ask for a referral to cognitive rehabilitation,” said Smith, of UT Southwestern Medical Center. “The professional discipline that helps the most with cognitive rehabilitation is going to be rehabilitation medicine.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Covid’s New Wave: Get Another Booster Shot or Wait?

By Sam Whitehead and Arthur Allen, Kaiser Health News

Gwyneth Paige didn’t want to get vaccinated against covid-19 at first. With her health issues — hypertension, fibromyalgia, asthma — she wanted to see how other people fared after the shots. Then her mother got colon cancer.

“At that point, I didn’t care if the vaccine killed me,” she said. “To be with my mother throughout her journey, I had to have the vaccination.”

Paige, who is 56 and lives in Detroit, has received three doses. That leaves her one booster short of federal health recommendations.

Like Paige, who said she doesn’t currently plan to get another booster, some Americans seem comfortable with the protection of three shots. But others may wonder what to do: Boost again now with one of the original vaccines, or wait months for promised new formulations tailored to the latest, highly contagious omicron subvariants, BA.4 and BA.5?

The rapidly mutating virus has created a conundrum for the public and a communications challenge for health officials.

“What we’re seeing now is a little bit of an information void that is not helping people make the right decision,” said Dr. Carlos del Rio, a professor of infectious diseases at the Emory University School of Medicine.

Del Rio said the public isn’t hearing enough about the vaccines’ value in preventing severe disease, even if they don’t stop all infections. Each new covid variant also forces health officials to tweak their messaging, del Rio said, which can add to public mistrust.

About 70% of Americans age 50 and older who got a first booster shot — and nearly as many of those 65 and older — haven’t received their second covid booster dose, according to data from the Centers for Disease Control and Prevention. The agency currently recommends two booster shots after a primary vaccine series for adults 50 and older and for younger people with compromised immune systems. Last week, multiple news outlets reported that the Biden administration was working on a plan to allow all adults to get second covid boosters.

Officials are worried about the surge of BA.4 and BA.5, which spread easily and can escape immune protection from vaccination or prior infection. A recent study published in Nature found BA.5 was four times as resistant to the currently available mRNA vaccines as earlier omicron subvariants.

Mixed Messages

Consistent messaging has been complicated by the different views of leading vaccine scientists. Although physicians like del Rio and Dr. Peter Hotez of Baylor College of Medicine see the value in getting a second booster, Dr. Paul Offit, a member of the FDA’s vaccine advisory committee, is skeptical it’s needed by anyone but seniors and people who are immunocompromised.

“When experts have different views based on the same science, why are we surprised that getting the message right is confusing?” said Dr. Bruce Gellin, chief of global public health strategy at the Rockefeller Foundation and Offit’s colleague on the FDA panel.

Janet Perrin, 70, of Houston hasn’t gotten her second booster for scheduling and convenience reasons and said she’ll look for information about a variant-targeted dose from sources she trusts on social media. “I haven’t found a consistent guiding voice from the CDC,” she said, and the agency’s statements sound like “a political word salad.”

On July 12, the Biden administration released its plan to manage the BA.5 subvariant, which it warned would have the greatest impact in the parts of the country with lower vaccine coverage. The strategy includes making it easier for people to access testing, vaccines and boosters, and covid antiviral treatments.

During the first White House covid briefing in nearly three weeks, the message from top federal health officials was clear: Don’t wait for an omicron-tailored shot. “There are many people who are at high risk right now, and waiting until October, November for their boost — when in fact their risk is in the moment — is not a good plan,” said Dr. Rochelle Walensky, head of the CDC.

With worries about the BA.5 subvariant growing, the FDA on June 30 recommended that drugmakers Pfizer-BioNTech and Moderna get to work producing a new, bivalent vaccine that combines the current version with a formulation that targets the new strains.

The companies both say they can make available for the U.S. millions of doses of the reformulated shots in October. Experts think that deadline could slip by a few months given the unexpected hitches that plague vaccine manufacturing.

“I think that we have all been asking that same question,” said Dr. Kathryn Edwards, scientific director of the Vanderbilt Vaccine Research Program. “What’s the benefit of getting another booster now when what will be coming out in the fall is a bivalent vaccine and you will be getting BA.4/5, which is currently circulating?”

“There are many people who are at high risk right now, and waiting until October, November for their boost — when in fact their risk is in the moment — is not a good plan. ”

— Dr. Rochelle Walensky, CDC.Director

The FDA on July 13 authorized a fourth covid vaccine, made by Novavax, but only for people who haven’t been vaccinated yet. Many scientists thought the Novavax shot could be an effective booster for people previously vaccinated with mRNA shots from Pfizer-BioNTech and Moderna because its unique design could broaden the immune response to coronaviruses. Unfortunately, few studies have assessed mix-and-match vaccination approaches, said Gellin, of the Rockefeller Foundation.

Edwards and her husband got covid in January. She received a second booster last month, but only because she thought it might be required for a Canadian business trip. Otherwise, she said, she felt a fourth shot was kind of a waste, though not particularly risky. She told her husband — a healthy septuagenarian — to wait for the BA.4/5 version.

People at very high risk for covid complications might want to go ahead and get a fourth dose, Edwards said, with the hope that it will temporarily prevent severe disease “while you wait for BA.4/5.”

The omicron vaccines will contain components that target the original strain of the virus because the first vaccine formulations are known to prevent serious illness and death even in people infected with omicron.

Those components will also help keep the earlier strains of the virus in check, said Dr. David Brett-Major, an infectious disease specialist at the University of Nebraska Medical Center. That’s important, he said, because too much tailoring of vaccines to fight emerging variants could allow older strains of the coronavirus to resurface.

Brett-Major said messages about the value of the tailored shots will need to come from trusted, local sources — not just top federal health officials.

“Access happens locally,” he said. “If your local systems are not messaging and promoting and enabling access, it’s really problematic.”

Although some Americans are pondering when, or whether, to get their second boosters, many people tuned out the pandemic long ago, putting them at risk during the current wave, experts said.

Dr. Georges Benjamin, executive director of the American Public Health Association, said he doesn’t expect to see the public’s level of interest in the vaccine change much even as new boosters are released and eligibility expands. Parts of the country with high vaccine coverage will remain relatively insulated from new variants that emerge, he said, while regions with low vaccine acceptance could be set for a “rude awakening.”

Even scientists are at a bit of a loss for how to effectively adapt to an ever-changing virus.

“Nothing is simple with covid, is it? It’s just whack-a-mole,” said Edwards. “This morning I read about a new variant in India. Maybe it’ll be a nothingburger, but — who knows? — maybe something big, and then we’ll wonder, ‘Why did we change the vaccine strain to BA.4/5?’”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Seniors Often Slow to Recover From Long Covid

By Judith Graham, Kaiser Health News

Older adults who have survived covid-19 are more likely than younger patients to have persistent symptoms such as fatigue, breathlessness, muscle aches, heart palpitations, headaches, joint pain, and difficulty with memory and concentration — problems linked to long covid.

But it can be hard to distinguish lingering aftereffects of covid from conditions common in older adults such as lung disease, heart disease, and mild cognitive impairment. There are no diagnostic tests or recommended treatments for long covid, and the biological mechanisms that underlie its effects remain poorly understood.

“Identifying long covid in older adults with other medical conditions is tricky,” said Dr. Nathan Erdmann, an assistant professor of infectious diseases at the University of Alabama-Birmingham’s school of medicine. Failing to do so means older covid survivors might not receive appropriate care.

What should older adults do if they don’t feel well weeks after becoming ill with the virus? I asked a dozen experts for advice. Here’s what they suggested.

Seek Medical Attention

“If an older person or their caregiver is noticing that it’s been a month or two since covid and something isn’t right — they’ve lost a lot of weight or they’re extremely weak or forgetful — it’s worth going in for an evaluation,” said Dr. Liron Sinvani, director of the geriatric hospitalist service at Northwell Health, a large health system in New York.

But be forewarned: Many primary care physicians are at a loss as to how to identify and manage long covid. If you’re not getting much help from your doctor, consider getting a referral to a specialist who sees long covid patients or a long covid clinic. Also, be prepared to be patient: Waits for appointments are lengthy.

At least 66 hospitals or health systems have created interdisciplinary clinics, according to Becker’s Hospital Review, an industry publication. For people who don’t live near one of those, virtual consultations are often available. For specialist referrals, ask whether the physician has experience with long covid patients.

Also, more than 80 medical centers in more than 30 states are enrolling patients in a four-year, $1.15 billion study of long covid that is being funded by the National Institutes of Health and is known as RECOVER (Researching COVID to Enhance Recovery). Older adults who choose to participate will receive ongoing medical attention.

Seek Comprehensive Care

At the University of Southern California’s covid recovery clinic, physicians start by making sure that any underlying medical conditions that older patients have — for instance, heart failure or chronic obstructive pulmonary disease — are well controlled. Also, they check for new conditions that may have surfaced after a covid infection.

If preexisting and new conditions are properly managed and further tests come back negative, “there is probably an element of long covid,” said Dr. Caitlin McAuley, one of two physicians at the Keck School of Medicine clinic.

At that point, the focus becomes helping older adults regain the ability to manage daily tasks such as showering, dressing, moving around the house, and shopping. Typically, several months of physical therapy, occupational therapy, or cognitive rehabilitation are prescribed.

Dr. Erica Spatz, an associate professor of cardiology at the Yale School of Medicine, looks for evidence of organ damage, such as changes in the heart muscle, in older patients. If that’s detected, there are well-established treatments that can be tried. “The older a person is, the more likely we are to find organ injury,” Spatz said.

At the Shirley Ryan AbilityLab in Chicago, a rehabilitation hospital, experts have discovered that a significant number of patients with breathing problems have atrophy in the diaphragm, a muscle that’s essential to breathing, said Dr. Colin Franz, a physician-scientist. Once inflammation is under control, breathing exercises help patients build back the muscle, he said.

For older adults concerned about their cognition after covid, McAuley recommends a neuropsychological exam. “Plenty of older patients who’ve had covid feel like they now have dementia. But when they do the testing, all their higher-level cognitive functioning is intact, and it’s things like attention or cognitive fluency that are impaired,” she said. “It’s important to understand where deficits are so we can target therapy appropriately.”

Become Active Gradually

Older patients tend to lose strength and fitness after severe illness — a phenomenon known as “deconditioning” — and their blood volume and heart muscles will start shrinking in a few weeks if they lie in bed or get little activity, Spatz said. That can cause dizziness or a racing heart upon standing up.

In line with recent recommendations from the American College of Cardiology, Spatz advises patients who have developed these symptoms after covid to drink more fluids, consume more salt, and wear compression socks and abdominal binders.

“I often hear that going for a walk feels awful,” Spatz said. When returning to exercise, “start with five to 10 minutes on a recumbent bicycle or a rower, and add a couple of minutes every week,” she suggested. After a month, move to a semi-recumbent position on a standard bike. Then, after another month, try walking, a short distance at first and then longer distances over time.

This “go slow” advice also applies to older adults with cognitive concerns after covid. Franz said he often recommends restricting time spent on cognitively demanding tasks, along with exercises, for brain health and memory. At least early on, “people need less activity and more cognitive rest,” he noted.

Reset Expectations

Older adults typically have a harder time bouncing back from serious illness, including covid. But even seniors who had mild or moderate reactions to the virus can find themselves struggling weeks or months later. 

The most important message older patients need to hear is “give yourself time to recover,” said Dr. Greg Vanichkachorn, director of the Mayo Clinic’s Covid Activity Rehabilitation Program in Rochester, Minnesota. Generally, older adults appear to be taking longer to recover from long covid than younger or middle-aged adults, he noted.

Learning how to set priorities and not do too much too quickly is essential. “In this patient population, we’ve found that having patients grit their teeth and push themselves will actually make them worse” — a phenomenon known as “post-exertional malaise,” Vanichkachorn said.

Instead, people need to learn how to pace themselves.

“Any significant health event forces people to reexamine their expectations and their priorities, and long covid has really accelerated that,” said Jamie Wilcox, an associate professor of clinical occupational therapy at the Keck School of Medicine. “Everyone I see feels that it’s accelerated their aging process.”

Consider Vulnerabilities

Older adults who have had covid and who are poor, frail, physically or cognitively disabled, and socially isolated are of considerable concern. This group has been more likely to experience severe effects from covid, and those who survived may not readily access health care services.

“We all share concern about marginalized seniors with limited health care access and poorer overall health status,” said Erdmann, of UAB. “Sprinkle a dangerous new pathology that’s not well understood on top of that, and you have a recipe for greater disparities in care.”

“A lot of older [long covid] patients we deal with aren’t accustomed to asking for help, and they think, perhaps, it’s a little shameful to be needy,” said James Jackson, director of long-term outcomes at the Critical Illness, Brain Dysfunction, and Survivorship Center at Vanderbilt University Medical Center in Nashville, Tennessee.

The implications are significant, not only for the patients but also for health care providers, friends, and family. “You really have to check in with people who are older and vulnerable and who have had covid and not just make assumptions that they’re fine just because they tell you they are,” Jackson said. “We need to be more proactive in engaging them and finding out, really, how they are.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.