Coronavirus Long Haulers-2

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Long COVID Can Take a Toll on the Vaccinated, Too - 5/25/22


VA data found increased risk of post-COVID symptoms among those with breakthrough infections

Vaccinated individuals with breakthrough infections were not immune to long COVID and also saw higher risks for death and comorbidities compared to those without any evidence of an infection, according to data from the U.S. Department of Veterans Affairs (VA).

In the pre-Omicron study, there was a higher risk of at least one incident post-acute sequelae within 30 days of a breakthrough infection -- such as pulmonary complications, coagulation or hematologic disorders, and fatigue -- compared with controls (HR 1.50, 95% CI 1.46-1.54), reported Ziyad Al-Aly, MD, of Washington University in St. Louis, Missouri, and colleagues.

Moreover, risk of death beyond 30 days of illness was higher for those with breakthrough infection (HR 1.75, 95% CI 1.59-1.93), the authors wrote in Nature Medicine.

"Getting COVID-19, even among vaccinated people, seems almost unavoidable nowadays," Al-Aly said in a statement. "Now that we understand that COVID-19 can have lingering health consequences even among the vaccinated, we need to move toward developing mitigation strategies that can be implemented for the longer term since it does not appear that COVID-19 is going away any time soon."

The authors noted that to their knowledge, this was "the first large study to characterize the risks of post-acute sequelae of [breakthrough infection] at 6 months."

The team examined data from Jan. 1, 2021 to Oct. 31, 2021 in the VA's electronic healthcare databases, and found 33,940 individuals with breakthrough infection, defined as a positive COVID test and a prior record of complete vaccination with one of the FDA's authorized vaccines. There were also 4,983,491 controls with no record of a positive COVID test.

There was more than a twofold higher risk of pulmonary complications (HR 2.48, 95% CI 2.33-2.64), coagulation and hematologic disorders (HR 2.43, 95% CI 2.18-2.71), and a twofold increased risk of fatigue (HR 2.00, 95% CI 1.82-2.21) among 30-day survivors of breakthrough infection compared with controls. The authors also documented higher risks of cardiovascular, gastrointestinal, kidney, mental health, musculoskeletal, and neurologic disorders.

The researchers added that there was no statistically significant difference by vaccine type in risk of death among those with breakthrough infection, but that Moderna's COVID vaccine (Spikevax) and Pfizer's (Comirnaty) were linked to a lower risk of at least one post-COVID condition.

Not surprisingly, Al-Aly's group found that compared with individuals who had COVID infection without prior vaccination, those with breakthrough infection had a lower risk of death (HR 0.66, 95% CI 0.58-0.74), and lower risk of 24 out of 47 post-COVID sequelae. The authors noted a "consistently reduced risk" of hematologic and coagulation disorders and pulmonary disorders in those with breakthrough infection.

Limitations to the data include that only those with a positive COVID test were included, meaning the sample did not include those who had COVID but were not tested, which could bias the estimates. The VA population is at least 90% men, which may limit the study's generalizability, and the authors acknowledged the possibility of unmeasured confounders.

Al-Aly called for a more layered approach for protection other than vaccination, masking, and social distancing, calling it "not sustainable."

"Our current approach will likely leave a large number of people with chronic and potentially disabling conditions that have no treatments," he said. "We need to urgently develop and deploy additional layers of protection that could be sustainably implemented to reduce the risk of long COVID."
Source: www.medpagetoday.com/infectiousdisease/covid19vaccine/98919?xid=nl_covidupdate_2022-05-26&eun=g1659124d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_052622&utm_term=NL_Gen_Int_Daily_News_Update_active

Opinion Stop dismissing the risk of long covid - 5/12/22


Ezekiel J. Emanuel, an oncologist, medical ethicist and professor at the University of Pennsylvania, served on the Covid-19 Advisory Board for the Biden-Harris transition.

The covid-19 pandemic is over. That is what most Americans seem to believe as they cram together for Formula One in Miami, sell out basketball stadiums and fill restaurants without masks.

This conventional wisdom is gravely wrong. I will continue to wear my N95 mask, limit my air and train travel, and avoid eating at indoor restaurants. When I teach, I will run a HEPA filter and require all my students to wear N95 masks, too.

Why? Largely because of long covid.

Many Americans will think me either stupid or foolish. They will point to recent data suggesting that about 60 percent of Americans have already contracted omicron or another coronavirus variant. So, they argue, covid is endemic. Just accept the inevitable.

This position reflects a triumph of desire over data. A wealth of evidence shows that covid-19 is not a mere cold or mild flu. It is a serious infection. Indeed, the belief that omicron was more mild than earlier variants was wrong. It was just as deadly.

And it comes with worrisome complications. Of course, we now have effective interventions, such as vaccines and treatments, to prevent acute illness and death. But we still do not know enough about the complications that come after the initial infection.

Though long covid was originally described in May 2020, there is not even a consensus definition for the condition. Yet we know many devastating symptoms can persist for months, including brain fog, fatigue with minimal exertion, extreme shortness of breath, insomnia and dizziness.

If the risk of long covid were low, I would agree that we should stop with masking and other precautions. But while we don’t know the precise frequency of the condition (a failure of the National Institutes of Health and biomedical researchers), we do know it is not rare. Estimates range from 0.5 percent of infections to 30 percent, with 10 percent being a commonly cited risk. Furthermore, there does not seem to be a correlation between the severity of the initial infection and the odds of getting long covid. Plenty of people with mild symptoms struggle with it.

Vaccines seem to help reduce the risks of long covid, but they don’t make it uncommon. Again the data are highly variable. A Veterans Affairs study estimates vaccination lowers the risk by 13 percent, while two British studies estimate a 40 to 50 percent lower risk. Maybe the best study, involving more than 240,000 U.S. patients, suggests vaccines cut the risk of long covid from roughly 17 percent to 3 percent. That is not rare.

Worse still, we have no treatments for the condition, and NIH has yet to establish a platform to rapidly conduct robust clinical trials to evaluate treatments, such as prolonged antiviral use, immune modulators and other shots in the dark such as anti-cholesterol drugs or antidepressants.

And there might even be a “longer” covid. We are just learning about the risk of heart attacks and developing diabetes months or years after infection. Covid-infected pregnant women faced an increased risk of being hospitalized, being admitted to the intensive care unit and having a preterm delivery. And erectile dysfunction is a newly documented risk. The long-term effects of covid infection on the brain are not well established, but depression and loss of gray matter have been documented, though we don’t know how serious or common they will be.

I am not a worrywart. I am happy to take plenty of risks — maybe too many, according to my family. I ride an electric motorcycle, for which the chance of dying is 1 in 100,000. Dying in a car accident is about 1 in 16,000 over a normal year.

But a 1-in-33 chance (or a 3 percent rate of long covid) of brain fog, debilitating fatigue, shortness of breath or any of the other serious post-covid symptoms is way too high for me to forgo unobtrusive precautions.

Consider that just last week, the Food and Drug Administration restricted the use of the Johnson & Johnson vaccine because of 60 cases of a blood-clotting syndrome and nine deaths among nearly 19 million doses. That is a 1-in-300,000 chance of the blood-clotting syndrome and a 1-in-2-million risk of death. Similarly, the risk of myocarditis in young adult males from the Pfizer and Moderna vaccines — the cause of much alarm — is about 1 in 15,000 and 1 in 4,000, respectively. The risk of long covid is far greater than any of these outcomes.

Remember also that millions of Americans with severe, chronic symptoms are unable to work and need medical attention and support. This will cost all of us in health coverage and disability payments. By behaving as if covid is behind us, we are creating a serious burden for the future.

Like everyone, I want this pandemic nightmare to be over. But I also desperately fear living a debilitated life of mental muddle or torpor. Keeping protective measures such as wearing masks and running HEPA filters is not too much of an imposition to avoid that.
Source: www.washingtonpost.com/opinions/2022/05/12/stop-dismissing-long-covid-pandemic-symptoms/?utm_campaign=wp_to_your_health&utm_medium=email&utm_source=newsletter&wpisrc=nl_tyh&wpmk=1&pwapi_token=eyJ0eXAiOiJKV1QiLCJhbGciOiJIUzI1NiJ9.eyJjb29raWVuYW1lIjoid3BfY3J0aWQiLCJpc3MiOiJDYXJ0YSIsImNvb2tpZXZhbHVlIjoiNWZiMGE4MGY5YmJjMGYzMzE2MmYwYzc1IiwidGFnIjoiNjI3ZWI1MmU5NTYxMjE3NTVhNzc5ODc2IiwidXJsIjoiaHR0cHM6Ly93d3cud2FzaGluZ3RvbnBvc3QuY29tL29waW5pb25zLzIwMjIvMDUvMTIvc3RvcC1kaXNtaXNzaW5nLWxvbmctY292aWQtcGFuZGVtaWMtc3ltcHRvbXMvP3V0bV9jYW1wYWlnbj13cF90b195b3VyX2hlYWx0aCZ1dG1fbWVkaXVtPWVtYWlsJnV0bV9zb3VyY2U9bmV3c2xldHRlciZ3cGlzcmM9bmxfdHloJndwbWs9MSJ9.x1-C6JzcEJuVrJPjjda3xrsPA1GdiFX__pKvcNjD208

Inside woman's long COVID battle as US marks 2nd anniversary of coronavirus pandemic


Nicole Wahler tested positive for COVID-19 in June 2020.

Nicole Wahler was in her mid-20s and in the best shape of her life when she tested positive for COVID-19 in June 2020.

Now, nearly two years later, Wahler, 28, said she is still suffering from the effects of the virus, which to date has killed nearly 6 million people around the world.

"My body is fighting so many different battles on a daily basis," the New Jersey resident told "Good Morning America." "I've gotten to the point where I'm eating about five different foods but that's all I can eat, and if I don't have proper nutrition to fight those battles, I'm not going to be able to fight, and I'm just going to continue to deteriorate."

Wahler said she started feeling symptoms of COVID-19 in March, just as the virus was spreading more quickly in the United States. When she tested positive for the virus in June, she said she thought she would have COVID-19 for two weeks, the typical duration of the virus, and improve.

Prior to COVID, Wahler said she was very active, including doing strength workouts several days a week. Her only preexisting condition was Crohn's disease -- a chronic disease that causes inflammation in the gastrointestinal (GI) tract-- but it was well-controlled, according to Wahler.

"Things just never got better," she said. "My chest pain grew worse. I started having tachycardia, increased heart rate; intense brain fog to the point I couldn't have a coherent conversation. I would forget what I was saying in the middle of a sentence."

Several months after testing positive for COVID-19, Wahler was diagnosed postural orthostatic tachycardia syndrome (POTS), a common condition that happens when not enough blood returns to the heart when moving from a lying down to standing up position, causing a rapid heart rate, lightheadedness or fainting, according to the National Institutes of Health (NIH).

While the cause of POTS is not fully clear, it can be triggered by a viral illness, according to the NIH.

Wahler said she has also been diagnosed with post-viral fatigue syndrome, which has made it hard to talk or even open her eyes at times.

In the months following her COVID diagnosis, Wahler was also diagnosed with mast cell activation syndrome (MCAS), which "causes a person to have repeated severe allergy symptoms affecting several body systems," according to the NIH. The syndrome, for which there is no known cause, has symptoms including abdominal pain, cramping, rapid pulse and low blood pressure.

In Wahler's case, she said she has developed allergic reactions to foods, causing her to lose over 30 pounds in a period of a few months.

Previously a middle and high school-level science teacher a head of her high school's math and science departments, Wahler had to give up her job and stop teaching because of long COVID.

A day in the life with long COVID

Nearly two years after first contracting COVID-19, Wahler said she is taking her recovery day by day.

She said she can now see a light at the end of the tunnel, but said it is still "far away and I have a lot of work to do."

Because none of her illnesses have precise cures, Wahler has incorporated a treatment plan includes a mixture of physical therapy, medication, breath work and cognitive exercises to improve her brain function.

On a typical day, Wahler said she has 15 alarms set on her phone to remind her to do daily tasks as routine as waking up and brushing her teeth.

With her first alarm, she will wake up and do breathing exercises, to help with POTS, and take her first medications. From there, her day is scheduled, moving from one activity, like eating a meal or doing physical therapy stretches, to a period of rest to let her body recover.

"I am too sick to do 'normal' daily routine things like do dishes or laundry," she said. "So when I'm not medicating, stretching, etc., I'm usually resting because those tasks take a lot of energy out of me."

Wahler also has doctors' appointments mixed into her schedule, though most are via telehealth because it is too taxing for her to go in-person. She said she is wheelchair-bound when out of the house, relying on her mom for help.

Wahler's physical therapy sessions are virtual and are focused, she said, on getting her strong enough to sit and then eventually stand to do exercises.

To help cope with her mental health and to work on improving her brain function, Wahler also sets a daily intention and says daily affirmations, followed by an evening mediation before bed.

Some days, it's really hard, incredibly hard

"Some days, it's really hard, incredibly hard," she said. "That's when you really have to dig deep and just think, well, what am I grateful for, and I'm grateful for my niece and nephew. I'm grateful for my friends that support me on an hour-to-hour basis."

She said she still struggles with recurrent complications, like shortness of breath, but is celebrating small successes, like adding two new foods into her diet and being able to shower on her own once a week.

Wahler said she has not been vaccinated against COVID-19 due to her compromised immune system, and therefore does not venture far beyond her home.

"In the state that I'm in, I can't risk getting COVID again," she said. "I'm confident that the physical health that I was in the first time I got COVID prevented me from dying, so now if I got COVID, again, I'm not sure how the cards would play out."

She continued, "But once my body is in a better state, and a lot of my chronic illnesses are back under control, 1,000%, I will definitely be getting the vaccine."

A chronic condition with 'no explanation'

As the U.S. now enters the third year of the coronavirus pandemic, Wahler is not alone in suffering from lingering complications due to COVID-19.

Studies have found that anywhere from 30% to more than 50% of COVID-19 survivors suffer complications that linger for weeks or months after they no longer test positive for the virus.

The complications can range in severity and type, including everything from fatigue, loss of taste or smell, brain fog and difficulty breathing to the onset of autoimmune conditions and changes to body systems including the heart, lung, kidney and skin, according to the Centers for Disease Control and Prevention (CDC).

The CDC defines post-COVID -- also known as long COVID, long-haul COVID, post-acute COVID-19 and chronic COVID -- as "ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19."

Wahler said she felt alone in her battle with post-COVID until she found support groups online and discovered her story was not an outlier.

"It was life-changing, being able to connect with so many other people that were going through exactly what I was going through, almost on the exact timeline," she said. "I have a pretty severe case of long COVID, but there are a lot of other people who do have it worse."

According to the CDC, people of all ages can develop long COVID, although it is more common in adults than in children and teens.

In response to the need, dozens of hospitals across the U.S. have opened post-COVID clinics to support patients who experience ongoing symptoms weeks or months after being cleared of the virus.

Dr. Fernando Carnavali, an internal medicine specialist, is the coordinator of the Center for Post-COVID Care at Mount Sinai in New York City, which opened its doors in May 2020.

Carnavali said the center takes an individualized approach to care because each case of post-COVID is so different. Patients, for example, see specialists in everything from primary care and cardiology to radiology, physical and occupational therapy, social work and neurology.

People needed to have a place where they were going to be listened to carefully.

"The Center for Post-COVID Care at Mount Sinai was the first in the country offering comprehensive care and a place for people to be heard and listened to," Carnavali told "GMA." "I think that one of the things that was obvious from the very beginning was that people needed to have a place where they were going to be listened to carefully."

Since its opening nearly two years ago, the center has seen more than 3,000 patients, according to Dr. David Putrino, director of rehabilitation innovation for Mount Sinai Health System.

Putrino said patients with long COVID, on average, receive care for three to six months, and it can be a long process to even get a patient to rehabilitation.

"Much of the early evaluation is going organ system to organ system making sure that some of the more troubling symptoms that are being reported don't have a very direct cause that's related to serious organ pathology," he said. "Long COVID is a multi-system condition. It affects 10 organ systems. It has over 200 recognized symptoms, and so that process can sometimes take quite some time to really make sure that patients are safe to proceed with rehabilitation."

Once patients start the rehab process, they receive a slow and steady pace of treatment from professionals trained to work specifically with long COVID patients.

"As clinicians and as patients, this mindset of no pain, no gain has been hard wired into us," he said. "What is different about long COVID is it’s the exact opposite. What we need to do is pause and approach rehabilitation from a different perspective where we need to be very targeted about the therapies that we apply. We need to be very strategic about the level of exertion that we put our patients through."

Many long COVID patients present with dysautonomia -- the improper functioning of the autonomic nervous system (ANS) that regulates bodily functions like breathing and digestion -- so Mount Sinai's physical therapists are trained in autonomic rehabilitation protocol, which slowly retrains the body to have appropriate response to movement, activity and exertion, according to Putrino.

Other therapies include breath work to increase carbon dioxide levels in patients and cognitive therapy to improve brain function lost as a result of long COVID.

Therapy at the Center for Post-COVID Care at Mount Sinai also includes work with registered dietitians because many patients with long COVID have developed food sensitivities or digestion problems, according to Putrino.

"It's very symptom dependent," he said of the rehab approach. "So depending on how people are presenting, we determine what therapies they require. Everything that we do, we try to be as evidence-based as possible."

And while research is ongoing -- including a $1.15 billion initiative from the National Institutes of Health -- there is currently no known cause of long COVID and no explanation for who gets it and why.

"We don't have an explanation," said Carnavali, whose team at Mount Sinai is also currently conducting research. "There are several theories, from immunological theories to theories that are just related to the direct effect of the virus itself, but we don't have an explanation of why it's happening."

A battle of the body and mind

New research has also shown that post-COVID affects not only the body, but also the mind.

Two new studies published this week found COVID-19 infection is associated with higher rates of brain tissue abnormalities.

One study found that even people with mild COVID-19 symptoms had signs of slightly reduced brain size and subtle tissue damage, while another found evidence of brain inflammation that correlated with symptoms of anxiety reported by COVID-19 long-hauler patients.

Researchers hope the finding will bring some relief to COVID long-haulers, who often express frustration that their neuropsychiatric symptoms -- like anxiety and depression -- are dismissed.

MORE: Woman has no sense of taste or smell 6 months after COVID-19 diagnosis: What to know about long-term complications

A study last year of long COVID patients, which included survey results from more than 3,700 self-described long-haulers in 56 countries, found that more than half couldn't work full time because of prolonged COVID-19 symptoms.

As of July, long COVID is classified as a disability under the Americans with Disabilities Act (ADA).

That classification is helpful for people like Wahler, who had to leave her teaching job due to her long COVID symptoms.

You're not living. You're just surviving.

"Living this life of doctors' appointments and tests and in pain, you're not living. You're just surviving," said Wahler, who has focused her attention on creating a business to provide care baskets to people with chronic illnesses. "So death isn't the only outcome. Your quality of life is severely affected from COVID as well."

According to Putrino, mental health is a main treatment focus for many long COVID patients, specifically helping patients manage the transition from being previously healthy to facing a chronic condition.

It requires a major adjustment in your life and your expectations.

"It's very challenging to be previously fit and healthy and suddenly after contracting an acute virus, you have a chronic condition that causes significant disability," he said. "That's a difficult thing to experience for anyone, and it requires a major adjustment in your life and your expectations."

And as the nation marks the second anniversary of the coronavirus pandemic, Putrino said the struggles of those facing long COVID are not going away.

"This is real. It’s not going away anytime soon and it’s a concerning, mass-disabling event that all health systems across the country need to address together," he said. "There is a vast number of people in America who have been affected by this and we need to work fast and work hard to provide care."

As experts warn of a growing mental health crisis among kids due to the coronavirus pandemic, new data shows the mental health struggles kids faced even prior to the pandemic.

Between 2016 and 2020, the number of children ages 3 to 17 who were diagnosed with anxiety grew by 29% and those with depression by 27%, according to a U.S. Department of Health and Human Services (HHS) study published Monday in JAMA Pediatrics, a medical journal.

From 2019 to 2020, researchers found a 21% increase in children with behavior or conduct problems, according to the study.

“Our research highlights a critical need to support both children and their caregivers to improve families’ mental and emotional well-being,” Dr. Michael Warren, a co-author of the study, said in a statement. “This includes ensuring access to timely health care services and addressing social determinants of health to support children and families’ overall well-being.”

The study was conducted using data from the National Survey of Children’s Health (NSCH), which collects data on 36 separate health-related measures, including preventive health checkups, mental health diagnoses, physical activity and caregiver well-being, according to HHS.

In addition to finding an increase in the diagnosis of mental health conditions, the study also found that children's physical activity decreased by 18% between 2016 and 2020. In addition, the proportion of kids with unmet health care needs grew by 32%, according to the study.

The study comes on the heels of a warning last year from the U.S. surgeon general of a growing mental health crisis among young people. Organizations representing child psychiatrists, pediatricians and children’s hospitals also declared a national emergency for youth mental health in 2021.

"I'm deeply concerned as a parent and as a doctor that the obstacles this generation of young people face are unprecedented and uniquely hard to navigate and the impact that's having on their mental health is devastating," U.S. Surgeon General Vivek Murthy said in testimony before senators in December.

The Centers for Disease Control and Prevention reported last year that emergency department visits for suicide attempts among teen girls were up more than 50% at the beginning of the pandemic compared to the same period in 2019.

Dr. Darien Sutton, a board-certified emergency medicine physician and ABC News medical contributor, said parents should realize that mental health conditions, including anxiety, may look different in kids than adults.
Source: www.goodmorningamerica.com/wellness/story/inside-womans-long-covid-battle-us-marks-2nd-83294669

Memory, Concentration Problems Plague 70% of Long COVID Patients - 3/21/22


Cognitive tests show "notable reduction" in memory ability

Seven in 10 people, most of whom said they had long COVID, experienced concentration and memory problems months after acute SARS-CoV-2 infection and many performed worse than their peers on cognitive tests, initial data from the COVID and Cognition Study showed.

Among 181 participants, 78% said they had difficulty concentrating, 69% reported brain fog, 68% reported forgetfulness, and 60% said they had problems finding the right word when speaking, reported Lucy Cheke, PhD, of the University of Cambridge in England, and co-authors.

These symptoms were reflected in a significantly lower ability to remember words and pictures in cognitive tests, the researchers reported in Frontiers in Aging Neuroscience.

"This is one of the first studies to actively look at cognition in long COVID," Cheke told MedPage Today. "We found a notable reduction in memory ability in those with ongoing symptoms."

"We explored not only performance on a range of tasks, but how they related to symptoms during the acute and ongoing illness," she continued. "We found that a cluster of symptoms characterized by fatigue, chest pain, body pains, headache and limb weakness experienced during the acute illness -- that is, the first 3 weeks of infection -- were predictive of cognitive symptoms and memory-test performance up to 6 months later."

"We also found that experience of ongoing neurological symptoms, such as disorientation, confusion, speech difficulty, and visual disturbances, were predictive of both executive function and memory deficits," Cheke added. "These findings help us to narrow down the potential processes producing cognitive deficits."

The COVID and Cognition Study included both cross-sectional and longitudinal data to help understand cognitive problems in long COVID. Participants answered questions about demographics, medical history and health-related behaviors (such as smoking and exercise), and details about their symptoms and experience with COVID-19.

Participants were recruited from October 2020 to March 2021. As part of the study, they took language and memory tests (incorporating word list, associative memory, and category fluency variables) and completed executive function tasks (including mental rotation and sorting test variables). Their results were compared with similar people who never were infected with SARS-CoV-2.

The analysis included 181 people (72% women) who had SARS-CoV-2 infection and 185 (64% women) who had not been infected. Most had COVID-19 at least 6 months before the study began, and very few were hospitalized.

Most participants (68%) who were infected with COVID were 18 to 50 years old. About three-quarters lived in the United Kingdom; others lived in North America and other parts of the world. Most people in the study were white.

People who had been infected with SARS-CoV-2 had reduced performance on memory variables after adjusting for demographics, regardless of ongoing COVID symptoms. A closer look revealed that people who had been infected had an increased reaction time when performing a verbal memory task.

Overall, people with more severe ongoing COVID symptoms had worse scores on memory tasks than people who had recovered. Both performance (percentage of correct answers) and reaction time of verbal memory were significantly affected by severity of ongoing illness in a dose-dependent manner.

The picture was less clear for non-verbal associative memory, but pairwise analyses showed that people who were never infected with SARS-CoV-2 performed better than people who had severe ongoing symptoms.

A separate analysis showed that clusters of ongoing neurologic, cardiopulmonary, fatigue, gastrointestinal, autoimmune, mood, and appetite loss symptoms predicted current cognitive difficulties. People who were still experiencing neurologic symptoms were particularly impaired on cognitive tests.

About half of people with long COVID said it was hard to get medical professionals to take their symptoms seriously. Of those with severe ongoing symptoms, 75% said they had long periods of being unable to work.

"Memory difficulties can significantly affect people's daily lives, including the ability to do their jobs properly," co-author Muzaffer Kaser, MD, PhD, also of the University of Cambridge, told MedPage Today.

"Our findings suggest that more comprehensive assessments are needed to understand the breadth of problems with memory and other cognitive abilities," he said. "We will continue to follow-up our participants, which will help us identify which difficulties persist over time and which cognitive problems may be candidates for future treatments."

The study had several limitations, including reliance on self-reported symptoms. Cognitive testing, some of which occurred during pandemic lockdown periods, was conducted online.

The researchers continue to follow participants and plan to show changes in symptoms and cognitive performance over time. The group is also recruiting adults and children for additional evaluations about cognition and COVID-19.
Source:
www.medpagetoday.com/neurology/generalneurology/97763?xid=nl_covidupdate_2022-03-21&eun=g1659124d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_032122&utm_term=NL_Gen_Int_Daily_News_Update_active

Have you suffered from long Covid?


Millions of people continue to suffer from long Covid — the constellation of symptoms that can linger months after an infection. The chronic illness can include feelings of exhaustion, cognitive problems, shortness of breath, headaches, joint pain and more. Studies estimate that perhaps 10 to 30 percent of people infected with the coronavirus may develop long-term symptoms.
Source: The New York Times eMail

Understanding long Covid - 3/25/22


Millions of people continue to suffer from long-term Covid symptoms. Studies estimate that 10 to 30 percent of people infected with the coronavirus may develop such symptoms, including cognitive issues, exhaustion, shortness of breath and many others.

“It involves a very varied constellation of symptoms, and it’s still quite mysterious,” said my colleague Pam Belluck, a health and science reporter. “But a growing number of studies are shedding light on the range of symptoms and what they look like. And we’re getting some scientific clues about what seems to be happening in the body.”

I spoke with Pam about our evolving understanding of the disease.

What causes long Covid?

There are different theories, but one of the leading theories has to do with the body’s inflammatory reaction.

When a virus enters the body, the immune system kicks into gear, it tries to fight the invader, and there’s a surge of inflammation. And according to this theory, too much inflammation can cause a range of damage, including to blood vessels and parts of cells that can then limit the body’s ability to use oxygen efficiently.

Another theory is that the body’s immune response didn’t shut down after the acute threat from the virus was defeated. It’s possible, scientists say, that there may be viral fragments that are hanging around at a very low level. They’re giving the immune system the instructions to stay on guard when there’s no reason it should be, and that over-activated immune response is causing symptoms.

Do we know who is more likely to get long Covid?

Recent research that followed a group of patients over time found that the people who were most likely to have long Covid two or three months after their infection had one or more of four biological factors.

One factor was that they had a high viral load in their blood from early in the infection. Another has to do with something called autoantibodies, which are usually associated with diseases like lupus or rheumatoid arthritis. Basically, they are antibodies that mistakenly attack body tissues, and if certain autoantibodies were present at the time of a Covid infection, those patients were more likely to develop long Covid.

The third one has to do with a virus called Epstein-Barr virus. It’s very common and it’s the virus that’s often associated with mono. Many people get infected with Epstein-Barr virus early in life and it might cause no symptoms, and it then becomes dormant. But patients in this study who ended up having reactivated Epstein-Barr virus at the time of their Covid infection were more likely to develop long Covid. Other clues suggest that some pre-existing conditions, like diabetes, may also predispose people.

If you’re vaccinated and you get Covid, are you less likely to have long-term symptoms?

Basically, we don’t know. A couple of studies have suggested that if you’ve been vaccinated and are then infected with Covid, it might make you less likely to have lingering symptoms, but at least one study suggested that vaccination didn’t make any difference.

One thing scientists are saying is that, so far, many long Covid studies have suggested that people who became really sick and were hospitalized from their initial Covid infection are more likely to have serious long-term symptoms. So if you consider that vaccines generally put you at lower risk for acute outcomes like hospitalization, then it makes sense that there might be some positive effect on reducing long-term symptoms. But having a mild Covid infection definitely doesn’t prevent long Covid — many people with long Covid did not get very sick initially or might even have had an asymptomatic Covid infection.

What’s your advice for people with long Covid?

Don’t be afraid to ask for help. There has been some skepticism about long Covid, including from primary physicians, and a lot of throwing up of hands. People may find that they go to their primary physician, and they get a scan, and nothing shows up. A lot of times there isn’t anything physically that an X-ray or blood test can show. But try not to be daunted. It may be better to try to seek help from a long Covid clinic at that point where at least you will get recognition that what you’re going through is a real thing and needs attention.

 

There are also a bunch of support groups and patient-led research groups that can be very helpful for tips of where to go, or at least just for sharing experiences. And know you’re not alone. There are a lot of people going through this.

What helped you

We asked readers for approaches to long Covid that worked for them. We’ll leave the medical advice to the doctors, but you had lots of advice and recommendations for ways to cope with and think about the illness. Here’s a selection:

“I got asymptomatic Covid in August 2020 from my parents, both of whom died of Covid three days apart. I still have cognitive issues — the inability to focus, particularly when listening; mental fatigue where my brain just shuts down; and poor long-term and short-term memory. I have developed coping mechanisms such as explaining to people with whom I have to carry on conversations to please understand I may ask many questions and I have difficulty remembering things. I also take notes of every phone call and conversation and anything I may need to remember. At first I was panicked by my loss of memory, however now I feel like I have surrendered to it and I just live in the present. In a weird way that has been a gift.” — Giselle Kovac, Miami Shores, Fla.

“It’s been three months since Covid symptoms first appeared. Old injuries and conditions were exacerbated by Covid and all came to a head like a perfect storm. My doctors are at a loss to help me, so I am learning to listen to my body and resting as much as I can. Approaches that I practice are meditation, journaling, yoga, along with walking daily on our local rail trail. My best advice is to befriend your body and pay attention to its messages and heed them. Only you know best what is going on and what will help you.” — Michele Gara, Connecticut

“Symptom: headaches, fatigue and post-exertional malaise. What helped: strict pacing (carefully keeping activity levels within a threshold at which I do not experience symptoms). Symptom: Loss of former identity (no longer to dance salsa, go to the gym, hike, bike, do Pilates). What helped: finding a new outlet via ceramics classes at Gasworks NYC.” — Elizabeth, Brooklyn

“I have been experiencing smell and taste issues known as parosmia, where everything I smell and taste is distorted in the form of sewage. I found a company that helps people navigate their smell and taste issues both emotionally and physically. It’s pretty cool because I was able to do an at-home diagnostic smell test with instant results, which validated that I am not crazy.” — Paulina Giangregorio, Los Angeles

“It is hard to explain long Covid to those who have not experienced it. It is even harder to explain invisible issues when things appear fine on the outside. The biggest help has been my ability to communicate the issues I’m experiencing with my colleagues. I recognize this is a luxury not everyone has, and for that I am extremely grateful. However, knowing I can step away from my computer or the stress of the daily grind has been amazing. Now if only I could convince myself, a self-diagnosed workaholic, that it is OK to take that time.” — Tiffany Gaidos, Yorktown, Va.

“I found an online long Covid survivors support group that was immeasurable in giving me lots of tips. If you can get into a long Covid clinic or a research trial, go for it. Otherwise, don’t dismiss your own body’s reactions, and methodically address each symptom with the appropriate specialist. Utilize any employee assistance programs and leave-of-absence options if you need more time to heal. Your health is more important than anything else. And finally, it can be a very difficult and long road, but as I know from my first go-around, recovery is possible. Don’t give up.” — Allison Durkin, Philadelphia
Source: The New York Times, 3/25/22 eMail

55% of Hospitalized COVID Patients Still Had Symptoms at 2 Years - 5/11/22


"Ongoing follow-up of COVID-19 survivors is essential," researcher says

An illustrated covid virus pattern over a photo of a mature man sitting on a window sill and rubbing his eyes.

More than half of patients hospitalized for COVID-19 in Wuhan, China, during the initial outbreak reported at least one symptom a couple of years later, researchers found.

The proportion of COVID-19 survivors with at least one sequelae symptom 2 years later came in at 55%, and the most frequent symptoms were fatigue or muscle weakness, reported Bin Cao, MD, of China-Japan Friendship Hospital in Beijing, and colleagues.

In addition, 12% of patients reported symptoms of anxiety or depression 2 years later, they wrote in Lancet Respiratory Medicine.

"Regardless of initial disease severity, COVID-19 survivors had longitudinal improvements in physical and mental health, with most returning to their original work within 2 years; however, the burden of symptomatic sequelae remained fairly high," the group wrote. "COVID-19 survivors had a remarkably lower health status than the general population at 2 years."

Cao and colleagues examined data from 1,192 patients with COVID discharged from Jinyintan Hospital in Wuhan from Jan. 7 to May 29, 2020. Of those, 94% did a face-to-face interview 2 years following infection. Median age at discharge was 57, and 54% of patients were men. Almost 70% of patients received supplementary oxygen, while 8% received "higher-level" respiratory support, and 4% were admitted to intensive care, with a median length of stay of 18 days.

"To the best of our knowledge, this is the longest longitudinal follow-up study of individuals who have recovered from acute COVID-19, systematically and comprehensively describing the longitudinal evolution of health and functional outcomes among COVID-19," the authors wrote.

Cao's group found that the proportion of COVID survivors reporting at least one symptom decreased significantly from 68% at 6 months to 55% at 2 years (P<0.0001). The percentage of patients with a 6-minute walking distance test less than the lower limit of normal declined from 6 months to 2 years (14% vs 8%, respectively), as did the proportion of patients with dyspnea (14% vs 26%, respectively, based on a British Medical Research Council dyspnea scale score of 1).

Also, 89% of participants with a job prior to the pandemic returned to their original work 2 years later, regardless of symptoms. Those who did not return cited decreased physical function, unwillingness to return, and unemployment.

Adjusted analyses found that those with long-COVID symptoms were more likely to experience the following versus those without long-COVID symptoms:

  • Anxiety or depression: adjusted odds ratio (aOR) 7.46 (95% CI 4.12-13.52)
  • Pain or discomfort: aOR 4.42 (95% CI 3.14-6.21)
  • Mobility problems: aOR 3.81 (95% CI 1.62-8.93)

Cao's group then examined 1,172 matched pairs of COVID survivors and those without COVID infection (controls). Compared with the latter, a significantly higher proportion of COVID survivors experienced problems with pain or discomfort, anxiety or depression, and had a significantly lower median of self-assessment scores of quality of life, they reported.

Among the COVID-19 survivors who took part in the three assessments, there were 230 participants who completed pulmonary function tests 2 years later. There was no significant difference among those with lung diffusion impairment versus those who completed the test at 6 months and 12 months, except among those with severe disease, according to the authors. Compared to matched controls, a significantly higher percentage of survivors with a disease scale of 5-6 experienced lung diffusion impairment (65% vs 36%, P=0.0009), reduced residual volume (62% vs 20%, P<0.0001), and total lung capacity (39% vs 6%, P<0.0001).

Adjusted analyses found that women had higher odds of fatigue or muscle weakness, anxiety or depression, and lung diffusion impairment versus men. Corticosteroid therapy was also associated with higher risks of fatigue or muscle weakness, they added.

Study limitations included the lack of a control group of hospital survivors with a respiratory infection other than COVID, so there was no way to tell if these abnormalities are specific to COVID. There may have also been participation bias, where participants with fewer symptoms might have been less likely to participate. Finally, the data came from a single center early in the pandemic, which may limit its generalizability.

"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 [programs] for recovery," said Cao in a statement. "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."
Source: www.medpagetoday.com/infectiousdisease/covid19/98664?xid=nl_covidupdate_2022-05-12&eun=g1659124d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_051222&utm_term=NL_Gen_Int_Daily_News_Update_active

 

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