‘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.

Long Covid Symptoms Often Overlooked in Seniors

By Judith Graham, Kaiser Health News

Nearly 18 months after getting covid-19 and spending weeks in the hospital, Terry Bell struggles with hanging up his shirts and pants after doing the laundry.

Lifting his clothes, raising his arms or arranging items in his closet leave Bell short of breath and often trigger severe fatigue. He walks with a cane, only short distances. He’s 50 pounds lighter than when the virus struck.

Bell, 70, is among millions of older adults who have grappled with long covid — a population that has received little attention even though research suggests seniors are more likely to develop the poorly understood condition than younger or middle-aged adults.

Long covid refers to ongoing or new health problems that occur at least four weeks after a covid infection, according to the Centers for Disease Control and Prevention. Much about the condition is baffling: There is no diagnostic test to confirm it, no standard definition of the ailment, and no way to predict who will be affected.

Common symptoms, which can last months or years, include fatigue, shortness of breath, an elevated heart rate, muscle and joint pain, sleep disruptions, and problems with attention, concentration, language, and memory — a set of difficulties known as brain fog.

Ongoing inflammation or a dysfunctional immune response may be responsible, along with reservoirs of the virus that remain in the body, small blood clots, or residual damage to the heart, lungs, vascular system, brain, kidneys, or other organs.

Only now is the impact on older adults beginning to be documented. In the largest study of its kind, published recently in the journal BMJ, researchers estimated that 32% of older adults in the U.S. who survived covid infections had symptoms of long covid up to four months after infection — more than double the 14% rate an earlier study found in adults ages 18 to 64. Other studies suggest symptoms can last much longer, for a year or more.

The BMJ study examined more than 87,000 adults 65 and older who had covid infections in 2020, drawing on claims data from UnitedHealth Group’s Medicare Advantage plans. It included symptoms that lasted 21 days or more after an infection, a shorter period than the CDC uses in its long covid definition. The data encompasses both older adults who were hospitalized because of covid (27%) and those who were not (73%).

The higher rate of post-covid symptoms in older adults is likely due to a higher incidence of chronic disease and physical vulnerability in this population — traits that have led to a greater burden of serious illness, hospitalization, and death among seniors throughout the pandemic.

“On average, older adults are less resilient. They don’t have the same ability to bounce back from serious illness,” said Dr. Ken Cohen, a co-author of the study and executive director of translational research for Optum Care, a network of physician practices owned by UnitedHealth Group.

“The challenge is that nonspecific symptoms such as fatigue, weakness, pain, confusion, and increased frailty are things we often see in seriously ill older adults.”

— Dr. Charles Semelka

Applying the study’s findings to the latest data from the CDC suggests that up to 2.5 million older adults may have been affected by long covid. For those individuals, the consequences can be devastating: the onset of disability, the inability to work, reduced ability to carry out activities of daily life, and a lower quality of life.

But in many seniors, long covid is difficult to recognize.

“The challenge is that nonspecific symptoms such as fatigue, weakness, pain, confusion, and increased frailty are things we often see in seriously ill older adults. Or people may think, ‘That’s just part of aging,’” said Dr. Charles Thomas Alexander Semelka, a postdoctoral fellow in geriatric medicine at Wake Forest University.

Ann Morse, 72, of Nashville, Tennessee, was diagnosed with covid in November 2020 and recovered at home after a trip to the emergency room and follow-up home visits from nurses every few days. She soon began having trouble with her memory, attention and speech, as well as sleep problems and severe fatigue. Though she’s improved somewhat, several cognitive issues and fatigue persist to this day.

“What was frustrating was I would tell people my symptoms and they’d say, ‘Oh, we’re like that too,’ as if this was about getting older,” she told me. “And I’m like, but this happened to me suddenly, almost overnight.”

Bell, a singer-songwriter in Nashville, had a hard time getting adequate follow-up attention after spending two weeks in intensive care and an additional five weeks in a nursing home receiving rehabilitation therapy.

“I wasn’t getting answers from my regular doctors about my breathing and other issues. They said take some over-the-counter medications for your sinus and things like that,” he said. Bell said his real recovery began after he was recommended to specialists at Vanderbilt University Medical Center.

Long Covid and Dementia

James Jackson, director of long-term outcomes at Vanderbilt’s Critical Illness, Brain Dysfunction, and Survivorship Center, runs several long covid support groups that Morse and Bell attend and has worked with hundreds of similar patients. He estimates that about a third of those who are older have some degree of cognitive impairment.

“We know there are significant differences between younger and older brains. Younger brains are more plastic and effective at reconstituting, and our younger patients seem able to regain their cognitive functioning more quickly,” he said.

In extreme cases, covid infections can lead to dementia. That may be because older adults who are severely ill with covid are at high risk of developing delirium — an acute and sudden change in mental status — which is associated with the subsequent development of dementia, said Dr. Liron Sinvani, a geriatrician and an assistant professor at Northwell Health’s Feinstein Institutes for Medical Research in Manhasset, New York.

Older patients’ brains also may have been injured from oxygen deprivation or inflammation. Or disease processes that underlie dementia may already have been underway, and a covid infection may serve as a tipping point, hastening the emergence of symptoms.

Research conducted by Sinvani and colleagues, published in March, found that 13% of covid patients who were 65 and older and hospitalized at Northwell Health in March 2020 or April 2020 had evidence of dementia a year later.

Dr. Thomas Gut, associate chair of medicine at Staten Island University Hospital, which opened one of the first long covid clinics in the U.S., observed that becoming ill with covid can push older adults with preexisting conditions such as heart failure or lung disease “over the edge” to a more severe impairment.

“It’s hard to attribute what’s directly related to covid and what’s a progression of conditions they already have,” said Gut.

That wasn’t true for Richard Gard, 67, who lives just outside New Haven, Connecticut, a self-described “very healthy and fit” sailor, scuba diver, and music teacher at Yale University who contracted covid in March 2020. He was the first covid patient treated at Yale New Haven Hospital, where he was critically ill for 2½ weeks, including five days in intensive care and three days on a ventilator.

In the two years since, Gard has spent more than two months in the hospital, usually for symptoms that resemble a heart attack. “If I tried to walk up the stairs or 10 feet, I would almost pass out with exhaustion, and the symptoms would start — extreme chest pain radiating up my arm into my neck, trouble breathing, sweating,” he said.

Dr. Erica Spatz, director of the preventive cardiovascular health program at Yale, is one of Gard’s physicians. “The more severe the covid infection and the older you are, the more likely it is you’ll have a cardiovascular complication after,” she said. Complications include weakening of the heart muscle, blood clots, abnormal heart rhythms, vascular system damage, and high blood pressure.

Gard’s life has changed in ways he never imagined. Unable to work, he takes 22 medications and can still walk only 10 minutes on level ground. Post-traumatic stress disorder is a frequent, unwanted companion.

“A lot of times it’s been difficult to go on, but I tell myself I just have to get up and try one more time,” he told me. “Every day that I get a little bit better, I tell myself I’m adding another day or week to my life.”

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

Long Covid Symptoms Persist Two Years After Hospitalization

By Pat Anson, PNN Editor

About half the patients who were first hospitalized in China with the COVID-19 virus still had symptoms of pain, fatigue or insomnia two years after being discharged, according to a new study that suggests that long covid may persist long after the initial infection.

Long covid is a poorly understood disorder characterized by body pain, fatigue, cognitive impairment and difficulty sleeping.

Wuhan, China was the epicenter of the COVID-19 pandemic in early 2020, which makes it a good place to study how infections with the original strain of the virus affect patients long-term.

Researchers at the China–Japan Friendship Hospital in Beijing followed nearly 1,200 patients who were hospitalized in Wuhan with acute COVID-19 between January 7 and May 29, 2020, and reassessed them six months, 12 months and two years after discharge.

While their physical and mental health generally improved over time, regardless of disease severity, researchers found that 55% of the Wuhan patients still had at least one Covid symptom after two years, compared to 68% after six months. Many reported a poorer quality of life, less ability to exercise, more mental health problems, and increased use of healthcare services compared to people who were not infected.

“Our findings indicate that for a certain proportion of hospitalised COVID-19 survivors, while they may have cleared the initial infection, more than two years is needed to recover fully from COVID-19,” said lead author Bin Cao, MD, Vice President and Director, Department of Pulmonary and Critical Care Medicine, China-Japan Friendship Hospital

“Ongoing follow-up of COVID-19 survivors, particularly those with symptoms of long COVID, is essential to understand the longer course of the illness, as is further exploration of the benefits of rehabilitation programmes for recovery. There is a clear need to provide continued support to a significant proportion of people who’ve had COVID-19, and to understand how vaccines, emerging treatments, and variants affect long-term health outcomes.”

Nearly 90% of the Wuhan patients were well enough to return to work after two years, despite lingering health problems. Nearly a third (31%) reported fatigue or muscle weakness and sleep difficulties. They were also more likely to report joint pain, palpitations, dizziness, headaches, difficulty breathing, anxiety and depression.

“To the best of our knowledge, this is the longest longitudinal follow-up study of individuals who have recovered from acute COVID-19,” researchers reported in The Lancet Respiratory Medicine.

“Throughout the 2 years after acute infection, hospital survivors with COVID-19 continued to recover in terms of symptomatic sequelae, exercise capacity, mental health, and quality of life, regardless of initial disease severity, but a fairly high burden of symptoms was still seen at 2 years. The COVID-19 survivors had not returned to the same health status as the general population 2 years after acute infection, so ongoing follow-up is needed to characterise the protracted natural history of long COVID.”

More than two years after COVID-19 first appeared in Wuhan, China is having another COVID crisis – this one caused by the Omricon variant of the virus. About 400 million people are currently living under some form of lockdown, with residents of China’s largest city, Shanghai, confined to their homes for weeks.

When Symptoms Linger, Is It Long Covid?

By Nina Feldman, WHYY

Many Americans are discovering that recovering from covid-19 may take weeks or even months longer than expected, leaving them with lingering symptoms like intense fatigue or a racing pulse. But does that mean they have what’s known as long covid?

Though such cases may not always amount to debilitating long covid, which can leave people bedridden or unable to perform daily functions, it is common to take weeks to fully recover.

“There could be more to help people understand that it’s not always a quick bounce back right away after the initial infection,” said Dr. Ben Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine in Philadelphia. “This is still a very significant viral infection, and sometimes it’s just a more gradual recovery process than people’s previous viral illnesses.“

Recent federal health guidelines — which recommend only five days of isolation for those who test positive and are symptom-free — may inadvertently suggest most recoveries are, if not just five days long, pretty quick.

That’s the message I got, at least.

I’ve reported on the coronavirus pandemic since it started, and I thought I knew what an infection would be like for a young, otherwise healthy person like me. I knew even mild cases could develop into long covid. I thought they were relatively rare.

Like many Americans, I found myself slowed by a recovery that took more than a month — far longer than I had expected.

I got covid over Christmas. I was vaccinated and boosted, and my symptoms were mild: sore throat, sinus pressure and headache, extreme fatigue. I felt better after eight days, and I tested negative two days in a row on a rapid antigen test.

Soon after ending isolation, I had dinner with a friend. One glass of wine left me feeling like I’d had a whole bottle. I was bone-achingly exhausted but couldn’t sleep.

The insomnia continued for weeks. Activities that once energized me — walking in the cold, riding an exercise bike, taking a sauna — instead left me intensely tired.

The waves of fatigue, which I started calling “crashes,” felt like coming down with an illness in real time: weakened muscles, aches, the feeling that all you can do is lie down. The crashes would last a couple of days, and the cycle would repeat when I accidentally pushed myself beyond my new, unfamiliar limit.

My colleague Kenny Cooper is also young, healthy, vaccinated, and boosted. He was sick for almost two weeks before testing negative. His symptoms lingered a few more weeks. A persistent cough kept him from leaving the house.

“I just felt like there were weights on my chest. I couldn’t sleep properly. When I woke up, if I moved around too much, I would start coughing immediately,” he said.

Abramoff has seen about 1,100 patients since Penn’s post-covid clinic opened in June 2020. There is no official threshold at which someone officially becomes a long-covid patient, he said.

The clinic takes a comprehensive approach to patients who have had symptoms for months, evaluating and referring them to specialists, like pulmonologists, or social workers who can assist with medical leave and disability benefits.

Those coming to the clinic with symptoms lasting six to eight weeks, Abramoff said, are generally sent home to rest. They will likely get better on their own. He advises patients with lingering symptoms to adopt a “watchful waiting” approach: Keep in contact with a primary care doctor, and take things slowly while recovering.

“You have got to build based on your tolerance,” he said. “People were very sick, even if they weren’t in the hospital.”

A National Institutes of Health-funded study on long covid, called Recover, designates any case with symptoms lasting more than 30 days as long covid.

Dr. Stuart Katz, a New York University cardiologist who is the study’s principal investigator, said he estimates 25% to 30% of the nearly 60,000 covid patients in the study will fit the long-covid criteria.

The 30-day mark is an arbitrary cutoff, Katz said. “There’s this whole spectrum of changing symptoms over time.”

A study published in Nature last year tracked more than 4,000 covid patients from initial infection until symptoms subsided. Roughly 13% reported symptoms lasting more than 28 days. That dropped to 4.5% after eight weeks and 2.3% after 12 weeks, indicating most people with symptoms lasting more than a month will recover within another month or two.

That leaves potentially millions of Americans suffering from a variety of covid symptoms — some debilitating — and a lingering burden on the health care system and workforce.

Recent research from the Brookings Institution estimated that lasting covid symptoms could be responsible for up to 15% of the unfilled jobs in the U.S. labor market.

It took me about six weeks to start feeling better. My crashes got better, slowly, as a result of diligent rest and almost nothing else.

My colleague, Cooper, has also improved. His coughing fits have subsided, but he’s still dealing with brain fog.

The way most studies to date describe long covid would leave us out.

But what I’ve come to think of as my “medium covid” affected my life. I couldn’t socialize much, drink, or stay up past 9:30 p.m. It took me 10 weeks to go for my first run — I’d been too afraid to try, fearing another crash that would set me back again.

Failing to treat covid as a serious condition could prolong recovery. Patients should monitor and care for themselves attentively, no matter how mild the infection may seem, Abramoff said.

“It’s something that could kill somebody who’s in their 70s,” he said. “It’s not nothing.”

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

Long Covid Research Could Lead to New Treatments for Chronic Pain

By Pat Anson, PNN Editor

About a third of people infected with Covid-19 develop long-term symptoms, such as headaches, persistent muscle pain, joint pain, stomach pain, chest pain and respiratory discomfort. Three years into the pandemic, scientists are finally beginning to understand what causes long covid and how to possibly treat it.

In studies on hamsters infected with Covid-19, researchers at the Icahn School of Medicine found that the virus left behind a gene expression signature in the animals’ dorsal root ganglia – a cluster of nerves in the spinal cord that transmit pain signals from the body to the brain. The signature matched gene expression patterns seen in other forms of chronic pain.

“A significant number of people suffering from long COVID experience sensory abnormalities, including various forms of pain,” said Randal (Alex) Serafini, an MD/PhD candidate. “We used RNA sequencing to get a snapshot of the biochemical changes SARS-CoV-2 triggers in a pain-transmitting structure called dorsal root ganglia.”

Serafini presented his findings at the annual meeting of the American Society for Pharmacology and Experimental Therapeutics in Philadelphia. 

The symptoms experienced by hamsters infected with Covid-19 closely mirrored those of people. Researchers say the hamsters showed a slight hypersensitivity to touch early after the infection, which became more severe over time.

They performed similar experiments with the Influenza A virus to determine if other RNA viruses promote a similar response. Influenza A caused an early hypersensitivity that was more severe, but began to fade after a few days. Four weeks after recovering from the flu, the hamsters had no signs of long-term hypersensitivity.

In contrast, hamsters infected with SARS-CoV-2-showed more hypersensitivity, reflecting symptoms of chronic pain. The pain sensitivity remained even after the hamsters recovered from the initial Covid-19 infection. Further research found that SARS-CoV-2 downregulates the activity of several previously identified pain regulators and a protein called interleukin enhancer binding factor 3 (ILF3) — a potent cancer regulator.

Based on these findings, the researchers hypothesized that mimicking the acute effects of ILF3 could serve as a new pain treatment strategy. To test this theory, they gave laboratory mice suffering from inflammation a clinically tested anti-cancer drug that inhibits ILF3 activity. The drug was very effective at treating their pain.

“Our findings could potentially lead to new therapies for patients suffering from acute and long COVID, as well as other pain conditions,” said Serafini. “We think therapeutic candidates derived from our gene expression data, such as ILF3 inhibitors, could potentially target pain mechanisms that are specific to COVID patients, both acutely and chronically.

“Interestingly, we saw a few cancer-associated proteins come up as predicted pain targets, which is exciting because many drugs have already been developed to act against some of these proteins and have been clinically tested. If we can repurpose these drugs, it could drastically cut down therapeutic development timeline.”

Serafini and his colleagues are now working to identify other compounds that could be repurposed to treat pain, while also keeping an eye out for new compounds that might inhibit ILF3 activity.

“Our study also shows that SARS-CoV-2 causes long-term effects on the body in drastically new ways, further underscoring why people should try to avoid being infected,” he said.

Another study has suggested that long covid appears to be the result of an overactive immune system. Australian researchers identified biomarkers of a sustained inflammatory response in the blood samples of long covid patients – suggesting their immune systems were activated by the virus, but then failed to turn off.

Other studies have found similarities between long covid and autoimmune conditions such as lupus and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).  

In addition to widespread body pain, long covid symptoms include fatigue, cognitive impairment and difficulty sleeping.    

Chronic Pain Worsened for Many During Pandemic

By Pat Anson, PNN Editor

Nearly nine out of ten people with chronic pain say their symptoms have either not improved (51%) or gotten worse (36%) during the pandemic, according to a new Harris poll that found nearly half of respondents (44%) experienced delays in getting treatment due to Covid-19.

The online survey of 810 U.S. adults with chronic back or leg pain was conducted in October and November 2021. It was commissioned by Medtronic, which makes spinal cord stimulators and other neuromodulation devices that treat pain.

Nine in ten pain sufferers said pain impacts their lives on a daily basis, with poor sleep (63%) being the most common reported problem. Pain also negatively affects their mental health (60%), exercise habits (53%), mobility and function (51%), ability to enjoy hobbies (44%), social life (32%) and occupation (33%).

Over one in five (22%) said pain impacts their romantic relationships, including being intimate with a partner or spouse.

"This data bears out what we've heard from our clinician customers and patients for two years – the pandemic has been especially hard on those with chronic pain," Charlie Covert, Vice President & General Manager of Interventional Pain Therapies at Medtronic, said in a press release.

The survey found that nearly one in five pain sufferers (17%) said they have canceled a medical appointment or procedure without rescheduling, with the primary reason being fear of Covid-19 exposure. Only a third of surveyed patients (34%) feel comfortable going into a healthcare facility, and 5% say they will never feel comfortable returning to their provider.

The overwhelming majority of respondents (90%) wish there were more treatment options available to manage their pain. While most are aware of traditional treatments such as physical therapy and oral pain relievers, far fewer are familiar with options such as targeted drug delivery (38%) or spinal cord stimulation (34%).

"There is a tangible human cost to deferred procedures and delayed care. As COVID-19 hopefully begins its transition to a more endemic disease, we expect many of these patients to urgently seek relief through new or more effective treatment modalities,” said Covert. “Our survey demonstrated that an overwhelming majority want more treatment options, yet awareness of spinal cord stimulation and targeted drug delivery options remains relatively low."

The pandemic continues to affect the bottom line for Medtronic. Last month, the company said revenue losses were in the “low-double digits” for its neuromodulation and pain therapy devices.

In a conference call with analysts, Medtronic said the surge of omicron infections in January created “acute periods of worker absenteeism” with its customers, suppliers and staff. While conditions are improving, the company expects pandemic-related issues such as inflation, supply chain issues and healthcare worker shortages to linger.

Cognitive Problems Persist in Patients with Long Covid

By Pat Anson, PNN Editor

About 70% of people with long covid have concentration and memory problems several months after their initial infection with Covid-19, according to new research at the University of Cambridge. The severity of the symptoms appears to be linked to the level of fatigue and headache people experienced during their initial illness.

Long covid is a poorly understood disorder characterized by body pain, fatigue, cognitive impairment and difficulty sleeping. About a third of people infected with coronavirus develop symptoms that can last for many months.   

In their study of 181 long covid patients, published in the journal Frontiers in Aging Neuroscience, researchers found that 78% reported difficulty concentrating, 69% had brain fog, 68% experienced forgetfulness, and 60% had trouble finding the right word to use in speech. They also performed poorly in cognitive tests, with significantly lower ability to remember words and pictures.

“This is important evidence that when people say they’re having cognitive difficulties post-COVID, these are not necessarily the result of anxiety or depression. The effects are measurable - something concerning is happening,” said co-author Muzaffer Kaser, PhD, a psychiatrist and researcher at the University of Cambridge. “Memory difficulties can significantly affect people’s daily lives, including the ability to do their jobs properly.”

The findings are further evidence that Covid-19 will have a lasting impact around the world, long after the pandemic subsides. Cambridge researchers say their study supports other findings that suggest society will face a “long tail” of workforce illness due to long covid.

“Long covid has received very little attention politically or medically. It urgently needs to be taken more seriously, and cognitive issues are an important part of this. When politicians talk about ‘Living with COVID’ – that is, unmitigated infection, this is something they ignore. The impact on the working population could be huge,” said senior author Lucy Cheke, PhD, a psychologist and lecturer at Cambridge.

To help understand the cause of the cognitive problems, Cheke and her colleagues investigated other symptoms that might be linked. They found that people who experienced fatigue and neurological symptoms, such as dizziness and headache, during their initial illness were more likely to have cognitive issues later on.

Participants were assigned to carry out multiple tasks to assess their decision-making and memory. These included remembering words on a list, and remembering which two images appeared together. The results revealed a consistent pattern of memory problems in people with long covid -- problems that were more pronounced in those whose initial neurological symptoms were more severe.

“People think that long covid is ‘just’ fatigue or a cough, but cognitive issues are the second most common symptom - and our data suggest this is because there is a significant impact on the ability to remember. There is growing evidence that COVID-19 impacts the brain, and our findings reflect that,” said Cheke.

Study participants were recruited between October 2020 and March 2021, when the Alpha variant and the original form of SARS-CoV-2 were still the dominant forms of the virus.

Very few of the patients had symptoms severe enough to be admitted to a hospital. But even among those who were not hospitalized, researchers found that people with severe initial symptoms were more likely to develop long covid than those with mild symptoms. They also found that people over 30 were more likely to have severe ongoing symptoms than younger ones.

“Infection with the virus that causes COVID-19 can lead to inflammation in the body, and this inflammation can affect behaviour and cognitive performance in ways we still don’t fully understand, but we think are related to an early excessive immune response,” said Kaser.

As is often the case with chronic illness, half of the patients with long covid reported difficulty getting medical providers to take their symptoms seriously, perhaps because cognitive symptoms do not get the same attention as respiratory problems.

The Cambridge study currently has no data on long covid associated with the Delta or Omicron variants of coronavirus, although new patients are being recruited to fill that void. The researchers say more studies are needed to understand the complex effects of Covid on the brain, cognition and mental health.

One way to reduce your risk of long covid is to get vaccinated. A UK study last year found that people who received the Moderna, Pfizer or AstraZeneca vaccines had significantly lower risk of an infection that turns into long covid.

Long Covid Linked to Overactive Immune System

By Pat Anson, PNN Editor

People who develop long-haul COVID – even when the initial infection was mild or moderate – have a sustained inflammatory response that appears to be the result of an overactive immune system, according to Australian researchers.

Long covid is a poorly understood disorder characterized by body pain, fatigue, cognitive impairment and difficulty sleeping. About a third of people infected with coronavirus develop symptoms that can last for many months.   

“This study provides the strongest evidence to date for a clear biological basis for the clinically apparent syndrome of long COVID,” Professor Anthony Kelleher, Director of the Kirby Institute at UNSW Sydney, said in a press release.

Kelleher and his colleagues analyzed blood samples from 62 patients enrolled in the ADAPT study at St. Vincent’s Hospital, who were diagnosed with COVID-19 between April and July 2020 – before any vaccines were available. The blood samples were collected at three, four and eight months following initial infection, and compared to control groups.

Their study, recently published in the journal Nature Immunology, identified biomarkers of a sustained inflammatory response in long covid patients – suggesting their immune systems were activated by the virus, but then failed to turn off.

“What we’re seeing with long COVID is that even when the virus has completely left the body, the immune system remains switched on. If you measure the same thing after a standard cough or cold, which we did in this study through one of our control groups, this signal is not there. It’s unique to sufferers of long COVID,” said Professor Gail Matthews, who co-leads ADAPT and is Program Head of Vaccine and Therapeutic Research at the Kirby Institute.

“Simply put, when we look carefully at the immune system in people who have had COVID-19 infection, and particularly at those with long COVID, it looks different to what we would expect in healthy individuals. This tells us that there might be something quite unique in the pathophysiology of this disease.”

The study findings are welcome news to covid long-hauler Rick Walters, who contracted COVID in August 2020 and is part of the ADAPT study. Walters continues to have symptoms 17 months later.

“I’m glad that the study has confirmed that long COVID is a valid result of COVID-19 infection and just not something in my head. At first, I thought I would get better, but it became apparent that the damage to my lung was permanent, and I became quite anxious,” he said. “I have had some difficulties adjusting to my current health. COVID should not be taken lightly. I am gradually learning to live with the results.”

“One of the most surprising aspects of our analysis is that people don’t need to have had severe COVID to experience these ongoing immunological changes,” says Dr. Chansavath Phetsouphanh, a senior research associate at the Kirby Institute. “We found that there is a significant and sustained inflammation that indicates prolonged activation of the immune system response detectable for at least eight months following initial infection.”

Researchers hope that a better understanding of how the immune system reacts to the virus will lead to better treatment and management of long covid. There is no data yet to reflect whether variants like Omicron also cause long covid.

Previous studies of long covid have found similarities with autoimmune conditions such as lupus and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).  

Being fully vaccinated against COVID-19 cuts the risk of developing long covid in half, according to a 2021 study. Researchers at King’s College London looked at data from a mobile app used by millions of people in the UK and found that those who received two doses of the Moderna, Pfizer or AstraZeneca vaccines had significantly lower risk of a “breakthrough” infection that turns into long covid.

A Third of Long Haulers Have ‘FibroCOVID’

By Pat Anson, PNN Editor

Nearly a third of patients with long-haul covid have symptoms strikingly similar to fibromyalgia, according to a new study by Italian researchers who say being male and obese are strong risk factors for developing “FibroCOVID.”  

“In the light of the overwhelming numbers of the SARS-CoV-2 pandemic, it is reasonable to forecast that rheumatologists will face up with a sharp rise of cases of a new entity that we defined (as) ‘FibroCOVID’ to underline potential peculiarities and differences,” wrote lead author Francesco Ursini, MD, an Associate Professor of Rheumatology at the University of Bologna.

The study findings, published online in RMD Open: Rheumatic & Musculoskeletal Diseases, are based on a survey of over 600 patients with post-acute COVID-19 – also known as "long COVID."

Nearly 31% of the long-haulers had musculoskeletal pain, fatigue, cognitive impairment and sleep disturbances – classic symptoms of fibromyalgia, as defined by the American College of Rheumatology.

Unlike traditional fibromyalgia, which primarily affects women, a higher percentage of men (43%) had symptoms of FibroCOVID. They were also more likely to be obese, have high blood pressure, and a severe COVID-19 infection.

“Globally, respondents with FM (fibromyalgia) exhibited features suggestive of a more serious form of COVID-19, including a higher rate of hospitalisation and more frequent treatment with supplemental oxygen,” Ursini and his colleagues reported. “Taken together, our data suggest a speculative mechanism in which obesity and male gender synergistically affect the severity of COVID-19 that, in turn, may rebound on the risk of developing post-COVID-19 FM syndrome and determine its severity.”

The long-term effects of a COVID-19 infection are currently unknown. While some patients have minor symptoms and recover quickly, about a third will develop long COVID and have symptoms that persist for several months after the initial infection.  

Previous studies of long-haul covid have also found similarities with autoimmune conditions such as lupus and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).  

Vaccines Cut Risk of Long Covid

Being fully vaccinated against COVID-19 cuts the risk of developing long covid in half, according to a new UK study. Researchers at King’s College London looked at health data from a mobile app used by millions of people in the UK and found that those who received two doses of the Moderna, Pfizer or AstraZeneca vaccines had significantly lower risk of a “breakthrough” infection that turns into long covid.

“We found that the odds of having symptoms for 28 days or more after post-vaccination infection were approximately halved by having two vaccine doses. This result suggests that the risk of long COVID is reduced in individuals who have received double vaccination, when additionally considering the already documented reduced risk of infection overall,” researchers reported in the journal The Lancet Infectious Diseases.

“Almost all individual symptoms of COVID-19 were less common in vaccinated versus unvaccinated participants, and more people in the vaccinated than in the unvaccinated groups were completely asymptomatic.”

Fully vaccinated.people aged 60 or older were more likely to have no symptoms of a breakthrough infection, according to researchers.

Why Covid Infections Leave Some Patients in Chronic Pain

By Gabriella Kelly-Davies, PNN Columnist

Around the world many people who have recovered from even mild episodes of COVID-19 are presenting to doctors with unrelenting headaches, persistent and intense muscle and joint pain, and other forms of chronic pain that mimic conditions such as fibromyalgia.

Professor Gregory Dore, from the University of New South Wales’ Kirby Institute, is studying the health of people recovering from COVID-19. Known as ADAPT, the study started enrolling patients last year at St. Vincent’s Hospital in Sydney during the first wave of the pandemic in Australia. Most of the patients reported mild or moderate COVID symptoms.

One aspect of the ADAPT study is looking at neurological markers that reflect inflammation in the nervous system. The results aren’t public yet, but Dore says the findings are consistent with neuro-inflammation, which can appear in conditions such as persistent headache and nerve pain.

“We are seeing many patients with headaches so severe they require an MRI,” Dore said. “Headache can be part of the acute illness, but it is also persisting in many patients months after they recovered from the initial infection. It’s much more prevalent than in the general population.”

Dore is surprised by the number of “long haul” COVID patients who are presenting with ongoing neurological conditions four and eight months after they recovered from the initial infection.

“This was a pretty healthy group,” he said. “Most of the people we saw in the first wave of COVID were coming back from overseas. They were doing things like skiing and traveling and were a healthy bunch. I initially thought most people would have recovered by six months, but it seems to be ongoing. Immunology tells us there could be an ongoing immune response that is causing the neurological conditions, including pain.”

Neurological Infections

Dr. Daniel Carr, a prominent American pain specialist at Tufts University School of Medicine, says there are three primary mechanisms underpinning chronic pain after an acute COVID infection.

One is a direct attack by the virus on a variety of tissues such as nerves, the spinal cord and brain. Another is overactive inflammatory cascades attacking the body’s tissues and organs. This means one area of inflammation can ignite another in a continuous chain reaction and spread throughout the body. The third way is excessive blood clotting provoked by the virus, which may lead to gangrene, limb amputation and phantom limb pain.

Professor Bart Morlion, former president of the European Pain Federation and Director of the Leuven Center for Pain Management in Belgium, agrees. In the rehabilitation centre at his hospital, he is seeing patients with three forms of chronic pain following an acute COVID infection. Nerve pain is common because if the virus attacks the spinal cord, it can leave the patient with scarring of the spinal cord and intractable pain.

“I’ve seen patients who developed paraplegia because of an acute inflammation of the spinal cord induced by COVID-19, which is comparable to what we see in paraplegic patients after spinal cord injury,” Morlion explained. “There are also cases of encephalitis, meaning the virus infected brain tissue.”

The same is true when the COVID infection triggers a stroke. Patients can develop chronic nerve pain or widespread pain throughout the body, which is difficult to manage.

Morlion has seen several patients who have secondary pain problems after a COVID infection. Some patients developed thromboembolism – a closure of their arteries and small blood vessels – and developed gangrene in their limbs. To save their lives, surgeons had to amputate their arms or legs.

“We have patients in rehabilitation who lost both legs and arms because of COVID,” Morlion said, “and they have developed phantom limb pain.”

COVID patients who stayed in intensive care on a ventilator for an extended period are also ending up with chronic pain conditions. Morlion has treated many patients who’ve developed a painful infection of the small fibres in the nervous system. Patients who lay flat their stomachs while in intensive care to enhance their breathing are also developing chronically painful shoulders and elbows because of damage to the joints and nerves.

“If an intensive care nurse had to take care of five patients who required turning every few hours, then it happens that for instance, the elbow isn’t protected enough, leading to ‘park bench syndrome’ where the patient gets a chronically numb and painful little finger, because of the prolonged pressure on their elbow,” Morlion said. “Turning itself is always a risk for nerve and joint damage because these patients are floppy and can’t move into a comfortable position.”

COVID is also intensifying pre-existing pain conditions. One-fifth of the world’s population live with chronic pain, and Morlion is seeing many of these patients in his pain centre because their previously well managed chronic pain has increased by orders of magnitude after recovering from an acute COVID infection.

Dr. Marc Russo, an Australian pain physician, believes that special research units need to be set up to enable doctors to collect data on chronic pain conditions so dedicated treatments can be designed.

“We need one in Sydney and another in Melbourne that are multidisciplinary and include a pain physician, immunologist, infectious disease physician, rehabilitation physician and nursing case manager,” he said.

Chronic pain was already one of the major causes of disability before COVID-19, but it looks like the pandemic has swelled the number of people living with intractable pain. Our health systems must invest in the multidisciplinary pain management services needed to ease the  suffering caused by the multiple pain conditions resulting from COVID infection.

Gabriella Kelly-Davies is a PhD student at Sydney University who lives with chronic migraine.

Gabriella is the author of “Breaking Through the Pain Barrier,” a biography of her physician, Dr. Michael Cousins, who co-founded Painaustralia and is a world renowned expert in pain management.

Long-Haul Covid Draws Needed Attention to Dysautonomia

By Cindy Loose, Kaiser Health News

The day Dr. Elizabeth Dawson was diagnosed with covid-19 in October, she awoke feeling as if she had a bad hangover. Four months later she tested negative for the virus, but her symptoms have only worsened.

Dawson is among what one doctor called “waves and waves” of long-haul covid patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-covid newcomers. For some, the consequences are life altering.

Before fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter and ran long distances.

Today, her heart races when she tries to stand. She has severe headaches, constant nausea and brain fog so extreme that, she said, it “feels like I have dementia.” Her fatigue is severe: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy.

Through her own research, Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS. It is a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and vein contractions that assist blood flow.

It is a serious condition which affects many patients who have been confined to bed a long time with illnesses like covid as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before covid, an estimated 3 million Americans had POTS.

Few Doctors Treat Autonomic Disorders

Many POTS patients report it took them years to even find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland — in fact, there are only 75 board-certified autonomic disorder doctors in the U.S.

In January, Dawson called a neurologist at a Portland medical center where her father had worked and was given an appointment for September. She then called Stanford University Medical Center’s autonomic clinic in California, and again was offered an appointment nine months later.

Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue.

Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul covid patients with POTS, and every long-covid patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen.

“Decades of neglect of POTS and CFS have set us up to fail miserably,” said Rowe, one of the authors of a recent paper on CFS triggered by covid.

The prevalence of POTS was documented in an international survey of 3,762 long-covid patients, leading researchers to conclude that all covid patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.”

A “significant infusion of health care resources and a significant additional research investment” will be needed to address the growing caseload, the American Autonomic Society said in a recent statement.

Lauren Stiles, who founded the nonprofit Dysautonomia International in 2012 after being diagnosed with POTS, said patients who have suffered for decades worry about “the growth of people who need testing and treating but the lack of growth in doctors skilled in autonomic nervous system disorders.”

On the other hand, she hopes increasing awareness among physicians will at least get patients with dysautonomia diagnosed quickly, rather than years later. Dysautonomia International provides a list of a handful of clinics and about 150 U.S. doctors who have been recommended by patients.

Congress has allocated $1.5 billion to the National Institutes of Health over the next four years to study post-covid conditions. Requests for proposals have already been issued.

“There is hope that this miserable experience with covid will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section.

A unique opportunity for advances in treatment, he said, exists because researchers can study a large sample of people who got the same virus at roughly the same time, yet some recovered and some did not.

‘Huge Influx of Patients’

Long-term symptoms are common. A University of Washington study published in February in the Journal of the American Medical Association’s Network Open found that 27% of covid survivors ages 18-39 had persistent symptoms three to nine months after testing negative for covid. The percentage was slightly higher for middle-aged patients, and 43% for patients 65 and over.

The most common complaint: persistent fatigue. A Mayo Clinic study published last month found that 80% of long-haulers complained of fatigue and nearly half of “brain fog.” Less common symptoms are inflamed heart muscles, lung function abnormalities and acute kidney problems.

Larger studies remain to be conducted. However, “even if only a tiny percentage of the millions who contracted covid suffer long-term consequences,” said Rowe, “we’re talking a huge influx of patients, and we don’t have the clinical capacity to take care of them.”

Symptoms of autonomic dysfunction are showing up in patients who had mild, moderate or severe covid symptoms.

Yet even today, some physicians discount conditions like POTS and CFS, both much more common in women than men. With no biomarkers, these syndromes are sometimes considered psychological.

The experience of POTS patient Jaclyn Cinnamon, 31, is typical. She became ill in college 13 years ago. The Illinois resident, now on the patient advisory board of Dysautonomia International, saw dozens of doctors seeking an explanation for her racing heart, severe fatigue, frequent vomiting, fever and other symptoms.

For years, without results, she saw specialists in infectious disease, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine — and a psychiatrist, “because some doctors clearly thought I was simply a hysterical woman.”

It took three years for her to be diagnosed with POTS. The test is simple: Patients lie down for five minutes and have their blood pressure and heart rate taken. They then either stand or are tilted to 70-80 degrees and their vital signs are retaken. The heart rate of those with POTS will increase by at least 30 beats per minute, and often as much as 120 beats per minute within 10 minutes. POTS and CFS symptoms range from mild to debilitating.

The doctor who diagnosed Cinnamon told her he didn’t have the expertise to treat POTS. Nine years after the onset of the illness, she finally received treatment that alleviated her symptoms. Although there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of medicines including fludrocortisone, commonly prescribed for Addison’s disease, that can improve symptoms.

Some patients are also helped by specialized physical therapy that first involves a therapist assisting with exercises while the patient is lying down, then later the use of machines that don’t require standing, such as rowing machines and recumbent exercise bicycles. Some recover over time; some do not.

Dawson said she can’t imagine the “darkness” experienced by patients who lack her access to a network of health care professionals. A retired endocrinologist urged her to have her adrenal function checked. Dawson discovered that her glands were barely producing cortisol, a hormone critical to vital body functions.

Medical progress, she added, is everyone’s best hope.

Stiles, whose organization funds research and provides physician and patient resources, is optimistic.

“Never in history has every major medical center in the world been studying the same disease at the same time with such urgency and collaboration,” she said. “I’m hoping we’ll understand covid and post-covid syndrome in record time.”

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

Vaccines Help Some Covid Long Haulers

By Will Stone, Kaiser Health News

An estimated 10% to 30% of people who get covid-19 suffer from lingering symptoms of the disease, or what’s known as “long covid.”

Judy Dodd, who lives in New York City, is one of them. She spent nearly a year plagued by headaches, shortness of breath, extreme fatigue and problems with her sense of smell, among other symptoms.

Dodd worried that this “slog through life” was going to be her new normal. But everything changed after she got her covid vaccine.

“I was like a new person. It was the craziest thing ever,” said Dodd, referring to how many of her health problems subsided significantly after her second shot.

As the U.S. pushes to get people vaccinated, a curious benefit is emerging for those with this post-illness syndrome: Their symptoms are easing and, in some cases, fully resolving after vaccination.

It’s the latest clue in the immunological puzzle of long covid, a still poorly understood condition that leaves some who get infected with wide-ranging symptoms months after the initial illness.

The notion that a vaccine aimed at preventing the disease may also treat it has sparked optimism among patients, and scientists who study the post-illness syndrome are taking a close look at these stories.

“I didn’t expect the vaccine to make people feel better,” said Akiko Iwasaki, an immunologist at the Yale School of Medicine who’s researching long covid.

“More and more, I started hearing from people with long covid having their symptoms reduced or completely recovering, and that’s when I started to get excited because this might be a potential cure for some people.”

While promising, it’s still too early to know just how many people with long covid feel better as a result of being vaccinated and whether that amounts to a statistically meaningful difference.

In the meantime, Iwasaki and other researchers are beginning to incorporate this question into ongoing studies of long haulers by monitoring their symptoms pre- and post-vaccination and collecting blood samples to study their immune response.

There are several leading theories for why vaccines could alleviate the symptoms of long covid: It’s possible the vaccines clear up leftover virus or fragments, interrupt a damaging autoimmune response or in some other way “reset” the immune system.

“It’s all biologically plausible and, importantly, should be easy to test,” said Dr. Steven Deeks of the University of California-San Francisco, who is also studying the long-term impacts of the coronavirus on patients.

Patient Stories Offer Hope

Before getting the vaccine, Dodd, who’s in her early 50s, said she felt as if she had aged 20 years. She had trouble returning to work, and even simple tasks left her with a crushing headache and exhaustion.

“I’d climb the subway stairs and I’d have to stop at the top, take my mask off just to get air,” Dodd said.

After she got her first dose of the Pfizer vaccine in January, many of Dodd’s symptoms flared up, so much so that she almost didn’t get her second dose.

But she did — and a few days later, she noticed her energy was back, breathing was easier and soon even her problems with smell were resolving.

“It was like the sky had opened up. The sun was out,” she said. “It’s the closest I’ve felt to pre-covid.”

In the absence of large studies, researchers are culling what information they can from patient stories, informal surveys and clinicians’ experiences. For instance, about 40% of the 577 long-covid patients contacted by the group Survivor Corps said they felt better after getting vaccinated.

Among the patients of Dr. Daniel Griffin at Columbia University Medical Center in New York, “brain fog” and gastrointestinal problems are two of the most common symptoms that seem to resolve post-vaccination.

Griffin, who is running a long-term study of post-covid illness, initially estimated that about 30% to 40% of his patients felt better. Now, he believes the number may be higher, as more patients receive their second dose and see further improvements.

“We’ve been sort of chipping away at this [long covid] by treating each symptom,” he said. “If it’s really true that at least 40% of people have significant recovery with a therapeutic vaccination, then, to date, this is the most effective intervention we have for long covid.”

A small U.K. study, not yet peer-reviewed, found about 23% of long-covid patients had an “increase in symptom resolution” post-vaccination, compared with about 15% of those who were unvaccinated.

But not all clinicians are seeing the same level of improvement.

Clinicians at post-covid clinics at the University of Washington in Seattle, Oregon Health & Science University in Portland, National Jewish Health in Denver and the University of Pittsburgh Medical Center say only a small number of patients — or none at all — have reported feeling better after vaccination.

“I’ve heard anecdotes of people feeling worse, and you can scientifically come up with an explanation for it going in either direction,” said UCSF’s Deeks.

Why Are Patients Feeling Better?

There are several theories for why vaccines could help some patients — each relying on different physiological understandings of long covid, which manifests in a variety of ways.

“The clear story is that long covid isn’t just one issue,” said Dr. Eric Topol, director of the Scripps Research Translational Institute, which is also studying long covid and the possible therapeutic effects of vaccination.

Some people have fast resting heart rates and can’t tolerate exercise. Others suffer primarily from cognitive problems, or some combination of symptoms like exhaustion, trouble sleeping and issues with smell and taste, he said.

As a result, it’s likely that different therapies will work better for some versions of long covid than others, said Deeks.

One theory is that people who are infected never fully clear the coronavirus, and a viral “reservoir,” or fragments of the virus, persist in parts of the body and cause inflammation and long-term symptoms, said Iwasaki, the Yale immunologist.

According to that explanation, the vaccine might induce an immune response that gives the body extra firepower to beat back the residual infection.

“That would actually be the most straightforward way of getting rid of the disease, because you’re getting rid of the source of inflammation,” Iwasaki said.

Griffin at Columbia Medical Center said this “viral persistence” idea is supported by what he’s seeing in his patients and hearing from other researchers and clinicians. He said patients seem to be improving after receiving any of the covid vaccines, generally about “two weeks later, when it looks like they’re having what would be an effective, protective response.”

Another possible reason that some patients improve comes from the understanding of long covid as an autoimmune condition, in which the body’s immune cells end up damaging its own tissues.

A vaccine could hypothetically kick into gear the “innate immune system” and “dampen the symptoms,” but only temporarily, said Iwasaki, who has studied the role of harmful proteins, called autoantibodies, in covid.

This self-destructive immune response happens in a subset of covid patients while they are ill, and the autoantibodies produced can circulate for months later. But it’s not yet clear how that may contribute to long covid, said John Wherry, director of the Institute for Immunology at the University of Pennsylvania.

Another theory is that the infection has “miswired” the immune system in some other way and caused chronic inflammation, perhaps like chronic fatigue syndrome, Wherry said. In that scenario, the vaccination might somehow “reset” the immune system.

With more than 77 million people fully vaccinated in the U.S., teasing apart how many of those with long covid would have improved even without any intervention is difficult.

“Right now, we have anecdotes; we’d love it to be true. Let’s wait for some real data,” said Wherry.

This story is part of a partnership that includes NPR and Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues.

Covid Long-Haulers Face New Battle for Disability Benefits

By David Tuller, Kaiser Health News

Rickie Andersen took a brief break from work last March after she fell ill. Her cough, fever and chills were typical covid-19 symptoms, but coronavirus tests were so scarce she could not obtain one to confirm the diagnosis.

After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties and other disabling complaints. For six months, she tried to keep awake during meetings and finish basic tasks that took much longer than before.

Finally, she decided to retain legal help so she could take advantage of the disability insurance coverage offered as an employee benefit. “I realized this is not going to be a short-term thing,” Andersen said.

Hundreds of thousands of people around the world are experiencing what is being called “long covid” — a pattern of prolonged symptoms following an acute bout of the disease. Many have managed to continue working through accommodations like telecommuting, cutting down on hours and delegating responsibilities.

Others have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits. But as they pursue the application process, they are discovering a particular set of challenges.

Given the lack of testing in the first months, many “long haulers,” like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster.

Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

“Most are people calling to say, ‘I thought I could do it. I can’t. My mind doesn’t function for more than really brief periods of time,’” Comerford said.

In the U.S., close to 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. What proportion might be affected by long-term illness isn’t known. Scientific understanding of the phenomenon is in its infancy.

In January, The Lancet reported that around three-quarters of more than 1,700 covid patients who had been hospitalized in Wuhan, China, reported at least one ongoing symptom six months later. More recently, investigators from the University of Washington reported in JAMA Network Open that around 30% of 177 patients who had tested positive for the coronavirus still reported symptoms when they were surveyed one to 10 months later.

Strict Criteria for Benefits

The Social Security Administration provides long-term disability to American workers who qualify under its strict criteria, but applicants often get turned down on the first try. A few states, including California and New York, provide short-term disability benefits, in some cases for up to a year.

Tens of millions of Americans also have private disability coverage, most often as part of their employment benefit packages.

The maximum currently available to an individual through the Social Security Disability Insurance program is just over $3,000 a month. A typical private long-term disability plan might cover 60% of a beneficiary’s base salary, with a much higher maximum amount.

Sandy Lewis, a pharmaceutical industry researcher, fell ill last March with what she assumed was covid. She recovered but relapsed in April and again in May.

Through her employer-based insurance coverage, she received short-term disability for November and December, but the insurer, Prudential Financial, rejected her request for an extension. Soon after, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a debilitating illness that can be triggered by viral infections.

Lewis, who lives outside Philadelphia, is planning to appeal Prudential’s rejection of the short-term extension and apply for long-term disability. But the matter is unlikely to be resolved before fall. The situation has left her feeling “devastated,” she said, and in serious financial distress.

“This has been such an arduous journey,” she said. “I have no income and I’m sick, and I’m continuing to need medical care. I am now in a position, at 49 years old, that I may have to sell my home during a pandemic and move in with family to stay afloat.”

In Lewis’ case, a Prudential reviewer noted that her symptoms were “subjective” and that there were “no physical exam findings to correlate with any ongoing functional limitations,” according to Cassie Springer Ayeni, an Oakland disability lawyer who is representing her as well as Andersen.

Prudential would not comment on a specific case. Evan Scarponi, chief claims officer, said in a statement that “our collective understanding of covid-19 and any associated long-term effects are still evolving” but that Prudential is “well-versed in evaluating both subjective and objective aspects of disability claims.”

Lawyers and advocates in the field expect the numbers of covid-related long-term disability applicants to rise this year. But it’s still too soon to detect any such increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically must be unable to work for half a year before becoming eligible for long-term disability benefits, and applying can itself be a lengthy process.

‘No Objective Evidence’

Brian Vastag, a former Washington Post science and health reporter with ME/CFS, stopped working in 2014 and then sued Prudential after it rejected his long-term disability claim. Insurance companies, he said, can easily find reasons to dismiss applications from claimants with chronic illnesses characterized by symptoms like fatigue and cognitive impairment.

“The insurance companies will often say, ‘There’s no objective evidence, so we have nothing to support your claim,’” said Vastag, who won his case against Prudential in 2018. “I’m worried about the long-covid patients who can’t work anymore.”

Claimants can appeal a rejection. If the insurer rejects the appeal, claimants have the right to sue, as Vastag did. However, most such cases fall under the Employee Retirement Income Security Act of 1974. Because this federal law requires a losing insurer to pay the unpaid claims but does not provide for punitive or compensatory damages, critics argue it incentivizes the denial of coverage.

In the event of litigation, the court’s role is to assess the already existing evidentiary record. That means it is essential to present a robust case in the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.

“It’s the only shot to build a record for the courts, to develop a full body of evidence,” she said.

However, a successful disability case ultimately depends on documenting inability to work, not on obtaining a specific diagnosis. To augment the medical evidence, Ayeni often sends clients for neuropsychological testing, investigations of lung function and other specialist assessments. She also gathers affidavits from family members, professional colleagues and friends to confirm patients’ accounts.

In Rickie Andersen’s case, the strategy worked. Recognizing how complicated the application process was likely to be, she sought legal help early on. The insurer contracted by her employer approved her for short-term benefits late last year and granted her application for long-term benefits in February.

“I knew all of it was completely exhausting, so it wasn’t something I thought I could do on my own,” Andersen said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.