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Tag: Pandemic
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Connecticut school district avoids pandemic impact on grades by changing math class
Connecticut school district avoids pandemic impact on grades by changing math class – CBS News
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Heart Disease Deaths Spiked During COVID
Nov. 29, 2022 – Deaths from heart disease and stroke among adults living in the United States have been on the decline since 2010. But the COVID-19 pandemic reversed that downward trend in 2020, new research shows.
It was as if COVID had wiped out 5 years of progress, pushing rates back to levels seen in 2015, the researchers say.
Non-Hispanic Black people and those who were younger than 75 were affected more than others, with the pandemic reversing 10 years of progress in those groups.
Rebecca C. Woodruff, PhD, presented these study findings at the American Heart Association 2022 Scientific Sessions.
The rate of death from heart disease had been falling for decades in the United States due to better detection of risk factors, such as high blood pressure, and better treatments, such as statins for cholesterol, she said.
The decrease in deaths from heart disease from 1900 to 1999 “has been recognized as a top public health achievement of the twentieth century,” said Woodruff, who is an epidemiologist for the CDC.
The reversal of this positive trend shows that it is important that people “work with a health care provider to prevent and manage existing heart disease, even in challenging conditions like the COVID-19 pandemic,” she said.
Woodruff advised that “everyone can improve and maintain their cardiovascular health and reduce the risk of cardiovascular disease by following the American Heart Association’s Life’s Essential 8 – eating better, being more active, quitting tobacco, getting healthy sleep, managing weight, controlling cholesterol, managing blood sugar, and managing blood pressure.”
“COVID-19 vaccines can help everyone, especially those with underlying heart disease or other health conditions, and protect people from severe COVID-19,” she stressed.
Andrew J. Einstein, MD, PhD, from Columbia University Irving Medical Center in New York City, who was not involved with this research, says the results show “very disturbing changes” to the decline in deaths from heart disease over the past decade.
The study findings underscore that “as a society, we need to take efforts to ensure that all people are engaged in the health care system, with one aim being improving heart health outcomes, which worsened significantly in 2020,” he says.
“If you don’t actively see a primary care provider, it’s important to find one with whom you can have a good relationship and can discuss with you heart-healthy living; check your blood pressure, sugar, and cholesterol; ask you about symptoms and examine you to detect disease early; and refer you for more specialized heart care as needed,” he says.
Some Study Findings
The researchers analyzed data from the CDC’s WONDER database.
They identified adults ages 35 and older with heart disease as cause of death.
They found that the number of people who died from heart disease in every 100,000 people (heart disease death rate) dropped each year from 2010 to 2019, but it increased in 2020, the first year of the pandemic.
This increase was seen in the total population, in men, in women, in all age groups, and in all race and Hispanic ethnicity groups.
In the total population, the heart disease death rate dropped by 9.8% from 2010 to 2019. But this rate increased by 4.1% in 2020, going back to the rate it had been in 2015.
Among non-Hispanic Black people, the heart disease death rate fell by 10.4% from 2010 to 2019, but it increased by 11.2% in 2020, going back to the rate it had been in 2010.
Similarly, among adults ages 35 to 54 and those ages 55 to 74, the rates of heart disease deaths decreased from 2010 to 2019 and increased in 2020 to rates higher than they had been in 2010.
In 2020, about 7 years of progress in declining heart death rates was lost among men and 3 years of progress was lost among women, the researchers said.
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U.S. Flu Activity Already at Mid-Season Levels
Nov. 29, 2022 – Reports of respiratory illness continued to rise as the 2022-23 flu season maintained its early surge through mid-November, according to the CDC.
Nationally, 6% of all outpatient visits were because of flu or flu-like illness for the week of Nov. 13-19, up from 5.8% the previous week, the CDC’s Influenza Division said in its weekly FluView report.
Those figures are the highest recorded in November since 2009, but the peak of the 2009-10 flu season occurred even earlier – the week of Oct. 18-24 – and the rate of flu-like illness had already dropped to just over 4.0% by Nov. 15-21 that year and continued to drop thereafter.
Although COVID-19 and respiratory syncytial virus (RSV) are included in the data from the CDC’s Outpatient Influenza-like Illness Surveillance Network, the agency did note that “seasonal influenza activity is elevated across the country” and estimated that “there have been at least 6.2 million illnesses, 53,000 hospitalizations, and 2,900 deaths from flu” during the 2022-23 season.
Total flu deaths include 11 reported in children as of Nov. 19, and children ages 0-4 had a higher proportion of visits for flu like-illness than other age groups.
The agency also said the cumulative hospitalization rate of 11.3 per 100,000 population “is higher than the rate observed in [the corresponding week of] every previous season since 2010-2011.” Adults 65 years and older have the highest cumulative rate, 25.9 per 100,000, for this year, compared with 20.7 for children 0-4; 11.1 for adults 50-64; 10.3 for children 5-17; and 5.6 for adults 18-49 years old, the CDC said.
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College Students Found Help in Personal Pandemic Stories
Nov. 28, 2022 – The COVID-19 pandemic was hard on everyone, especially during the early months of the lockdown. But college students had particularly high stress levels, with mental health effects that have remained in some people even 2 years later.
During spring semester of 2020, many college students had to go home and live with their families – “which was a big adjustment after being more autonomous – deal with remote instruction, figure out plans such as summer internships, worry about their health and the health of others,” all at a critical time when teens and young adults are “gaining independence, developing a central identity, and figuring out where they fit into the world,” says Jordan Booker, PhD, an assistant professor of psychological sciences at the University of Missouri.
Olivia McKenzie is an example. Now 23 and working as a paralegal in New York City, she was a sophomore at the University of Michigan when the pandemic struck.
“We were sent home because of COVID, and I did my classes and coursework online,” she says. “College was awesome for me because I like being around friends and in the company of many people, so being at home and away from my friends wasn’t good for me or for my mental health.”
McKenzie feels “lucky” because her parents recognized her needs and supported her return to Ann Arbor, where she shared a living space with a few other students and continued online classes from there.
Booker and his colleagues wanted to understand how college students were coming to terms with shutdowns and quarantines.
He was part of a team effort, including researchers from private and public universities around the U.S. with expertise in studying how people use life stories to organize and make sense of their lives. The team came together very quickly as colleges were shutting down during spring semester, Booker says. “We wanted to see the implications of the shutdown and how these students were making sense of how COVID was impacting their lives early on.”
Different Styles for Different Folks
Over 600 first-year college students were asked to write about the impact of the pandemic on them in response to a computerized questionnaire with narrative prompts.
The researchers expected the crisis to be short. But as the pandemic continued, it became clear that, unlike shorter events (like natural disasters), the pandemic never had a “clean break,” signaling its end. So the researchers followed these students for a year to see if they could detect themes in their narratives that might predict their adjustment to the issues posed by COVID-19 and the return to campus.
The students also filled out questionnaires about their psychological adjustment, sense of belonging, well-being, identity development, and mental health concerns.
“There are different ways that folks come to terms with their experiences and talk about the impact on their lives,” Booker observes. “Storytelling, in and of itself, is a widespread human activity. We use it all the time to share insights and make sense, day-to-day.”
But how people tell their stories differs, based on their personalities, cultural norms, and social standards.
“For example, some people provide more structure, organization, and detail; some people focus on major goals, such as personal success and connecting with others; and some bring in more integration and personal growth,” he says.
Personal Growth
“We found that how the young people tended to emphasize personal success and focus on [independent] values tended to be tied to relatively fewer reports of COVID-related stressors,” Booker reports.
“Another big theme was the expression of personal growth – ways that students were talking about and recognizing challenges from COVID-related experiences that actually changed their lives for the better,” he says.
Students who identified ways that COVID-19 helped their personal growth had fewer reports of COVID-related stresses, better mental health in the moment, and more advanced identity development, he says.
These findings extended to the 1-year follow-up, “where we continued to see valuable insights and ways that growth was tied to most areas of development and adjustment.” The students “were able to incorporate personal reasoning, ways that they could move forward, even with a lot of uncertainty in the world, and we saw initial and lasting positive ties with other areas of development and adjustment.”
McKenzie says the pandemic “forced me to grow because there were all sorts of emotions I wasn’t used to dealing with full-on when I was distracted by being with friends or going to classes.”
She’s learned from the pandemic. “I think there was a lot I took for granted instead of feeling gratitude. Now, it’s way easier for me to look back and be grateful or intentional about how I spend my time, seeing people, or being able to go outdoors, which I couldn’t do during the freezing winter in Michigan.”
Another long-term area of growth has been self-care. “The pandemic caused me to be in tune with myself, perhaps in more ways than I would be at this stage in my life if I hadn’t gone through that.”
She also has learned to value spending time alone and is more “intentional” about whom she spends her time with.
But there were downsides. “Anxiety in particular is a lingering effect – unsureness about general things and being a lot more sensitive to news and world events, because you never know what might happen next,” she says. “I see this not only with me, but with my peers as well. There’s more harsh reality in our lives now, a sense of unease in my generation. Nothing will ever be the same.”
Sharing Stories
McKenzie didn’t directly describe her perceptions of the pandemic in writing during the lockdown, although she was a creative writing student and taking two writing classes. But “how the pandemic was influencing me as a human being got woven into my writing in other ways.”
She kept a journal and talked about common experiences with friends. “I found a job in a restaurant, which felt like my saving grace during the pandemic because it was an excuse to leave the house,” she says. “For over a year, we were fully masked and limited to outdoor seating, but still quite busy. We exchanged a lot of stories in that space.”
Sharing stories of common stressors and coping helped forge a “different kind of friendship” with fellow waitstaff and created a “sense of community and comradery during a time when ordinary ways of communing with others were discouraged.”
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Is It Long COVID, or Dementia, or Both?
Nov. 28, 2022 – In early September, about a week after recovering from COVID-19, Barri Sanders went to the bank to pay a bill. But by mistake, she transferred a large amount of money from the wrong account.
“I’m talking about $20,000,” she says. “I had to go back [later] and fix it.”
Sanders, 83, had not had confusion like that before. Suddenly, the Albuquerque, NM, resident found herself looking up from a book and not remembering what she had just read. She would stand up from her chair and forget what she meant to do.
“I kind of thought it was just the aging process,” she says. Combined with sudden balance issues, insomnia, and a nagging postnasal drip, the overall effect was “subtle, but scary,” she says.
After 5 days of this, she went to bed and slept the whole night through. She woke up in the morning to find her balanced restored, her sinuses clear, and the mental fog gone. What she’d had, she realized, wasn’t a rapid start of dementia, but rather a mercifully short form of long COVID.
Somewhere between 22% and 32% of people who recover from COVID-19 get “brain fog,” a non-scientific term used to describe slow or sluggish thinking. While this is disturbing at any age, it can be particularly upsetting to older patients and their caregivers, who fear they’re having or witnessing not just an after-effect of a disease, but the start of a permanent loss of thinking skills. And some scientists are starting to confirm what doctors, patients, and their families can already see: Older patients who have had COVID-19 have a higher risk of getting dementia or, if they already have mental confusion, the illness may worsen their condition.
British scientists who studied medical records from around the world reported in the journal The Lancet Psychiatry in August that people who recovered from COVID-19 had a higher risk of problems with their thinking and dementia even after 2 years had passed.
Another 2022 study, published in the journal JAMA Neurology, looked at older COVID-19 patients for a year after they were discharged from hospitals in Wuhan, China. Compared with uninfected people, those who survived a severe case of COVID-19 were at higher risk for early onset, late-onset, and progressive decline in their thinking skills. Those who survived a mild infection were at a higher risk for early onset decline, the study found.
Eran Metzger, MD, an assistant professor of psychiatry at Beth Israel Deaconess Medical Center in Boston, says he’s noticed that COVID-19 makes some older patients confused, and their brains don’t regain their former clarity.
“We see a stepwise decline in their cognition during the COVID episode, and then they never get back up to their baseline,” says Metzger, medical director at Hebrew SeniorLife.
New research is beginning to back up such findings.
People who got COVID-19 were twice as likely to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID, according to a study published in the journal Nature in September, which analyzed the health care databases of the U.S. Department of Veterans Affairs.
Joshua Cahan, MD, a cognitive neurologist at Northwestern University, advises caution about applying such a specific label simply from a patient’s medical chart. After all, he notes, few patients get tested to confirm that they have the proteins linked to Alzheimer’s.
“Probably the most appropriate conclusion from that is that there’s an increased risk of dementia after a COVID infection,” he says, “but we don’t know whether it’s truly Alzheimer’s disease or not.”
There could be a number of reasons why COVID-19 triggers a decline in thinking skills, says Michelle Monje, MD, a neuroscientist and neuro-oncologist at Stanford University.
In a paper published in October in the journal Cell, Monje and her co-author, Akiko Iwasaki, PhD, a professor of immunobiology at Yale University, propose six possible triggers for brain fog caused by COVID: inflammation in the lungs and respiratory passages that leads to inflammation and dysregulation of the central nervous system; autoimmune reactions that damage the central nervous system; brain infection directly caused by the coronavirus (though, they note, this appears rare); a re-activation of a Epstein-Barr virus, which can lead to neuro-inflammation; triggered by the coronavirus; and/or complications from severe cases of COVID-19, possibly involving periods of low blood oxygen and multi-organ failure.
Scientific understanding of brain fog is “part of an emerging picture that inflammation elsewhere in the body can be transmitted to become inflammation in the brain,” Monje says. “And once there’s inflammation in the brain … that can dysregulate other cell types that normally support healthy cognitive function.”
One issue with the concept of brain fog is that, like the term itself, the condition can be tough to define for doctors and patients alike and hard, if not impossible, to capture on common cognition tests.
These days, patients often arrive at the Center of Excellence for Alzheimer’s Disease, in Syracuse, NY, complaining that they “don’t feel the same” as they did before contracting COVID-19, says Sharon Brangman, MD, the center’s director and the chair of the Geriatrics Department at Upstate Medical University.
But the evidence of diminished cognition just isn’t there.
“There’s nothing that we can find, objectively, that’s wrong with them,” she says. “They’re not severe enough to score low on mental status testing.”
But specialized, directed testing can find some probable signs, says Cahan, who evaluates patient cognition in a long COVID clinic at Northwestern University.
He often finds that his long COVID patients score in the low normal range on cognitive testing.
“Patients do have a complaint that something’s changed, and we don’t have prior testing,” he says. “So it’s possible that they were maybe in the high normal range or the superior range, but you just don’t know.”
He says he has seen very high-performing people, like lawyers, executives, PhDs, and other professionals, who have tests that might be interpreted as normal, but given their level of achievement, “you would expect [higher scores].”
Like Sanders, many of those who do have muddled thinking after a COVID infection return to their former mental status. A study published in the journal Brain Communications last January found that people who had recovered from COVID-19, even if they had a mild illness, were significantly more likely to have memory and other cognition issues in the months after infection. But after 9 months, the former COVID patients had returned to their normal level of cognition, the team at Britain’s University of Oxford reported.
Notably, though, the average age of the people in the study was 28.6.
At the Northwestern clinic, Cahan treats patients who have struggled with COVID-induced cognition issues for months or even years. A rehabilitation program involves working with patients to come up with ways to compensate for cognitive deficits – such as making lists – as well as brain exercises, Cahan says. Over time, patients may achieve a 75% to 85% improvement, he says.
Monje hopes that one day, science will come up with ways to fully reverse the decline.
“I think what is likely the most common contributor to brain fog is this neuro-inflammation, causing dysfunction of other cell types,” she says. “And, at least in the laboratory, we can rescue that in mouse models of chemotherapy brain fog, which gives me hope that we can rescue that for people.”
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Face The Nation: Johnson, Fauci, Polis
Face The Nation: Johnson, Fauci, Polis – CBS News
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11/27: Face The Nation
11/27: Face The Nation – CBS News
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Open: This is
Open: This is “Face the Nation with Margaret Brennan,” Nov. 27 – CBS News
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Threat of
Threat of “tripledemic” looms over holidays – CBS News
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Chinese factory workers protest harsh COVID rules
Chinese factory workers protest harsh COVID rules – CBS News
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Battlefield 2042’s Season 3 Makes A Good Game Slightly Better
Image: EA The last time we took a look at Battlefield 2042, the belagured online shooter had just released its second major update and was, finally, starting to feel like something approaching a finished video game. With Season 3 out this week, it’s now even closer.
Note that I don’t make that statement as a criticism. Battlefield 2042 was released in the middle of the pandemic, with almost two whole years of its development affected, and as a long-time series fan—but also a video game journalist familiar with how this stuff works—I’ve made peace with the fact the game was clearly rushed out the door by executives to meet a short-term financial goal, regardless of the damage it has done to the brand’s long-term standing.
So I’m just not exactly reaching when I say—as anyone who was playing the game at launch will know—it just wasn’t ready for release in November 2021. Those of us who still found something to love in the game and kept playing were, for months, essentially playing and publicly testing an unfinished video game, one that was only ever going to feel “complete” (at least compared to its predecessors) after months of updates.
Well, we’re now at that “months of updates” point, which in previous Battlefields would have been the stage where the game had been added to substantially, but in 2042’s case is just where it’s within touching distance of par.
This week saw the release of Season 3, which adds a huge new map (set in Sweden around two boxy robot arms factories), a new anti-tank vehicle, a railgun and a new specialist, whose unique weapon is a miniature air-bursting explosive rifle.
Battlefield 2042 | Season 3: Escalation Gameplay Trailer It’s all good! The map, Spearhead, is a big one, and like Stranded before it is cleanly differentiated by having two big indoor playgrounds for close-quarters combat, surrounded by wide-open spaces for snipers and vehicles. I’ve been having a great time with it, as its long design and rocky terrain between the two buildings means games often turn into meatgrinders over the central control points, leading to huge, explosive battles.
The new Specialist, Rasheed Zain, is also something the game has needed; his air-bursting rifle is able to kill enemy forces bunkered down in cover or around corners, giving infantry the kind of space-clearing ability that was previously only available to vehicles or the rare few who can actually use grenades properly.
I’m not quite as sold on the other two main additions, the railgun and anti-armour tank. The latter, the EMKV90-TOR, plays like StarCraft’s Siege Tank; you can drive it around for a bit with limited firepower but when you really want to mess stuff up, you can lower its suspension and snipe enemy tanks from across the map.
The railgun, meanwhile, is all about timing; it’s useful as both a medium and long-range weapon, but only if you can master the way it charges itself then discharges automatically when ready. Nearly all of the game’s current roster of weapons and vehicles feel somewhat contemporary, with gentle concessions made to the fact this game is set 20 years in the future; these two additions look, sound and feel more like Halo weapons.
Image: EA When you look back at all the work and updates the game has received since launch—not just new stuff but revisions of old maps and tweaks to things like Specialist appearance and their soundbytes, giving the game a more cohesive tone—it’s clearly a much-improved experience!
I think when the unpopular Specialist system is reworked next month to revert to traditional Battlefield classes, that year-long effort to make this the game it should have been will be done. Which, given how disastrous the game’s launch was, will be one hell of an achievement.
And yet, it also can’t have us help but wonder: what could this game have been if the last 12 months had been free to add to the game, rather than just perform emergency repairs? I really like the setting of 2042, one of the few blockbusters to ever take the threat of climate change seriously, and its near-future arsenal has been so much more fun to use than the historical gear available in the last few games.
We’ll never know! A pandemic and the investor class conspired to curse this game, and so if all we can look forward to is one last Season 4 update before the whole thing gets binned and everyone moves onto the next Battlefield, then that’s what I’ll be looking forward to. Me and the other people who have been enjoying the game since launch. There are dozens of us! Dozens!
Image: EA Luke Plunkett
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Fauci Urges Americans ‘One Last Time’ to Get COVID Shots
Nov. 22, 2022 – White House officials on Friday urged Americans – again – to get their COVID-19 vaccines and boosters, as the latest booster shot has a better immune response to the evolving COVID-19 variants BA.4 and BA.5.
“Recent data that has come out indicate that, in fact, if you are vaccinated and boosted, compared to an unvaccinated person, there is a 14 times lower risk of dying in the most recent BA.4-5 era, compared to unvaccinated, and at least a three times lower risk of testing positive, compared to unvaccinated individuals,” said Anthony Fauci, MD, who stood at the White House press briefing podium “one last time” as he bid farewell to reporters on Tuesday.
The physician-scientist will be stepping down from his position as director of the National Institute of Allergy and Infectious Diseases and chief medical adviser to President Joe Biden next month.
Fauci has made it clear that he is not retiring, but rather, pursuing “the next chapter” of his career. During his more than 5 decades of service to the federal government, he has spearheaded the fights against HIV and AIDS, Ebola, and COVID-19, among other health crises.
White House COVID-19 Response Coordinator Ashish Jha, MD, joined Fauci on the podium and highlighted the latest developments in COVID-19 vaccinations and disease prevention.
On Monday, 12 of America’s top medical and clinical societies, including the American Medical Association and the American College of Physicians, released a statement with a clear message: Go get your updated COVID-19 vaccine and annual flu shot, which is the best way to save lives this holiday season – particularly the lives of older Americans.
Other announcements included a “6-week sprint” to help Americans get their updated COVID shot by the end of December. Three hundred and fifty million dollars in funding will go toward community health centers, mobile vaccine clinics, and religious organizations to assist in vaccine education and distribution. There will also be $125 million in funding for aging and disability networks to get more vulnerable and disabled Americans vaccinated.
Jha also said that most Americans will need one shot each year to stay safe, similar to the flu shot.
“We need to make protecting our loved ones an important part of the conversation we have around the Thanksgiving table and an important part of the conversation that we have in the days and weeks ahead,” he said.
“If folks get their updated vaccines, and they get treated if they have a breakthrough infection, we can prevent essentially every COVID death in America.”
For more information on COVID-19 vaccines, click here.
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A Growing List of Musicians Sidelined Due to Long COVID
SOURCES:
Lungi Naidoo, singer songwriter, South Africa.
Twitter.com: @carseatheadrest, Oct. 18, 2022.
David Putrino, PhD, director, Rehabilitation Innovation for the Mount Sinai Health System, New York City.
Jason Maley, MD, director, Beth Israel Deaconess Medical Center’s Critical Illness and COVID-19 Survivorship Program.
CDC: “Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID””.
StatPearls: “Post Acute Coronavirus (COVID-19) Syndrome.”
Danny Zelisko, former chairman, Live Nation Southwest; owner, Danny Zelisko Presents.
Lucas Sacks, director of booking, Brooklyn Bowl Williamsburg, Brooklyn Bowl Philadelphia.
Joel Fram, Broadway conductor.
Grace McComsey, MD, leader, Long COVID RECOVER study, University Hospitals Health System, Cleveland.
Terry Bell, singer songwriter, Nashville.
Jason Maley, MD, director, Beth Israel Deaconess Medical Center’s Critical Illness and COVID-19 Survivorship Program.
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Without Guidelines, Docs Make Their Own Long COVID Protocols
SOURCES:
American Academy of Physical Medicine and Rehabilitation: “PASC Dashboard.”
Janna Friedly, MD, executive director, Post-COVID Rehabilitation and Recovery Clinic, University of Washington.
National Institutes of Health: “Coronavirus Disease 2019 (COVID-19) Treatment Guidelines,” “RECOVER: Researching COVID,” “RECOVER Program Takes First Steps in Advancing Toward Clinical Trials to Better Understand Long COVID.”
Cancer: “Prevalence and Characteristics of Moderate to Severe Fatigue: A Multicenter Study in Cancer Patients and Survivors.”
National Institute for Health Care and Excellence: “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management.”
Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine, director, COVID-19 Recovery Clinic, University of Texas Health Science Center at San Antonio.
PM&R: “Multidisciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Fatigue in Postacute Sequelae of SARS-CoV-2 infection (PASC) Patients.”
The Journal of Head Trauma Rehabilitation: “Effectiveness of Amantadine Hydrochloride in the Reduction of Chronic Traumatic Brain Injury Irritability and Aggression.”
CNS Drugs: “Modafinil: A Review of its Pharmacology and Clinical Efficacy in the Management of Narcolepsy.”
Frontiers in Neurology: “Methylphenidate Treatment of Cognitive Dysfunction in Adults After Mild to Moderate Traumatic Brain Injury: Rationale, Efficacy, and Neural Mechanisms.”
PM&R: “Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Cognitive Symptoms in Patients With Post-Acute Sequelae of SARS-CoV-2 Infection (PASC).”
Annals of Clinical and Translational Neurology: “Persistent Neurologic Symptoms and Cognitive Dysfunction in Non-Hospitalized Covid-19 Long Haulers.”
Alba Miranda Azola, MD, co-director, Post-Acute COVID-19 Team, Johns Hopkins University School of Medicine, Baltimore.
U.S. National Library of Medicine: “SARS-CoV-2 Viral Persistence Study (PASC) – Study of Long COVID-19.”
PolyBio: “LongCovid Research Consortium.”
Gary H. Gibbons, MD, director, National Heart, Lung, and Blood Institute.
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Myocarditis After COVID Vaccine Still Rare, But Risks Remain
Nov. 22, 2022 – The overall risk of myocarditis after a COVID-19 vaccination remains rare, according to a new study published in the Canadian Medical Association Journal.
At the same time, developing inflammation of the heart muscle appears to be more common in men ages 18-29 who receive the Moderna shot. The researchers recommended the Pfizer shot for this group.
“Although observed rates of myocarditis were higher than expected, the benefits of the vaccine in reducing the severity of COVID-19, hospital admission, and deaths far outweigh the risk of developing myocarditis,” says Naveed Janjua, MBBS, the senior study author and executive director of data and analytic services at the British Columbia Centre for Disease Control.
Still, the number of people who developed myocarditis after vaccination is “somewhere between three to six times less than what we see after COVID disease,” says C. Buddy Creech, MD, director of the Vanderbilt Vaccine Research Program. Creech, who wasn’t involved with this study, has led COVID-19 vaccine clinical trials throughout the pandemic.
Janjua and colleagues looked at data from the people in British Columbia who were vaccinated for COVID-19 from December 2020 to March 2022. They looked for hospital admissions or emergency department visits for myocarditis or myopericarditis (inflammation of the sac-like tissue layer that surrounds the heart) within 7-21 days after vaccination. The research team also compared the number of observed cases to the cases expected if there were no link between a COVID-19 vaccine and myocarditis.
Overall, more than 10.2 million doses of Pfizer or Moderna vaccines were given to people ages 12 and older in British Columbia during that time, including nearly 7 million Pfizer doses and 3.2 million Moderna doses. Nearly 4 million were first doses, about 3.9 million were second doses, and 2.3 million were third doses.
The researchers found 99 cases of myocarditis within 7 days after vaccination, as compared with seven expected cases. The rate of myocarditis was 0.97 cases per 100,000 vaccine doses, as compared with an expected rate of 0.23 per 100,000 population. The observed rate was about 15 times higher than expected.
Also, they found 141 cases within 21 days, as compared with 20 expected cases. The rate of myocarditis was 1.37 cases per 100,000 vaccine doses, as compared to an expected rate of 0.39 per 100,000 population. The observed rate was about 7 times higher than expected.
Analyzing by age, myocarditis cases were highest among ages 12-17 and 18-29, and lowest among ages 70-79. By sex, myocarditis cases were higher for men than women.
“The numbers are small [for Moderna versus Pfizer], and therefore may not be entirely precise, but this has been a common theme,” Creech says. “This may be due to the slightly higher amount of antigen in the Moderna vaccine compared to Pfizer.”
The study confirmed what other researchers are seeing in the U.S. and around the world, Creech says.
“At the end of the day, the absolute number of myocarditis cases after vaccination are very low, though higher than we would expect. Both Pfizer and Moderna, as well as NIH, CDC, and others, have launched large-scale studies in order to understand why this is happening,” he says.
Finally, Creech says, the cases of myocarditis after vaccination have been mild.
“This should provide parents a measure of confidence as they seek to protect their families from COVID disease, including the often not mild cases of myocarditis following COVID disease,” he says.
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How Real Estate Agents Are Using QR Code Technology To Simplify The Home-Buying Experience
Going digital: QR codes have seen a sharp increase in usage over the past two years.
The popularity of QR codes have seen many ups and downs over the course of its almost 30-year existence, but with the need for contact-less menus and transactions during the pandemic, barcode technology is coming back in a big way. From 2018-2020, QR code usage has increased by 96% and many of the top real estate brokerages across the globe have taken notice.
With internet listings now being the primary means for home searches, the ease of use and speed of QR codes have made this once-forgotten technology more valuable than ever.
Here’s how top agents are using this simple yet effective tool to connect with clients.
Despite its complicated image, QR codes are both ubiquitous and simple, making it a fine candidate … [+]
Straightforward Listings
Previously, one of the main drawbacks of QR codes was entire segments of the population unaware of how the technology worked, but that has drastically changed since the pandemic says Chris Morrison, co-founder of RETSY. “I went to a restaurant with my mother, who is not a tech-savvy person, and I watched her easily scan a QR code to order a drink. I realized then that a lot more people must know how to use this technology than before.”
It was this realization that helped lead Morrison to start RETSY and develop the proprietary technology that would define the Scottsdale-based brokerage. “We use QR codes on almost every listing. What it does is give the consumer easy access to the information they want without all the extra trouble. No agents nagging you for months, no 1-800 recordings, no empty flier boxes. Just scan and you’ve got everything you need.”
For Tracey Atkins, a director at Private Property Global, QR codes not only make listings easier to access but also more enticing. By removing unnecessary text from listing advertisements, Atkins says that “we look less like we’re selling a home on the market and more that we’re telling a home to the market.”
The Melbourne-based marketing specialist added, “all we use is the image, the address and a QR code, and that leads them to a video where they can get a deeper level of understanding and engagement.”
Often, the search for a home is a digital one.
Tried and True Methods Meet Modern Technology
Most agents have learned that sometimes traditional means of connecting with clients, like newspaper ads, billboards and cards, can work the best. However, for Catherine Bassick of Bassick Real Estate Advisors, adding a little update to these methods can make all the difference.
“I send out postcards about properties coming to the market and also those recently sold and I include a QR code to enable folks to get right to the property website instead of having to find it through several steps.”
Atkins says that PPG utilized QR codes alongside more classic advertising strategies when marketing the renowned Melbourne mansion Namarong. “We did a large campaign that included using QR codes through a national newspaper which was a powerful way to leverage that media and an opportunity for further storytelling.”
Real estate listings at storefront are just one way to reach potential clients. The addition of QR … [+]
Agent Intel, With Ease
The ease of QR codes doesn’t just apply to home buyers but to agents as well, says Morrison. “When someone sees a property they like, they can scan the real estate sign and now we, as agents, can show them not only that property but others similar to it. We’re trying to make the perfect ecosystem for our agents.”
By using technology like QR codes, Morrison says that RETSY has been able to draw in some of “the top performing luxury agents who know that the tools we provide give us an advantage over any type of competition.”
The head of the Morrison Team added that the data gathered from QR codes is used for real estate and real estate only.
“A lot of companies give out QR codes so they can scrape your information, but with our system, it’s a closed loop, and it’s designed just for the real estate agents.”
CDR San Miguel uses QR codes as both a listing tool and a local resource for residents. A company … [+]
Creating A Personnel Connection
In addition to connecting home buyers with listings, Jim Dolan, owner of CDR San Miguel, says the scannable technology also aids in marketing his brokerage and himself.
“We put QR codes on the back of our cell phones. It’s great, I’ll be at a conference or socializing and someone will ask for a business card and all I have to do is flip my phone over and they instinctively know what to do.”
The luxury broker continued that, unlike physical business cards, digital cards are more likely to remain in the hands, or phones, of potential clients. “Most of the time you get these cards and they end up in a stack in your closet. But with QR codes, my information goes directly into their phones, and that’s a big thing for us.”
CDR San Miguel, Private Property Global and RETSY are exclusive members of Forbes Global Properties, a consumer marketplace and membership network of elite brokerages selling the world’s most luxurious homes. Search the latest luxury listings here.
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Spencer Elliott, Contributor
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Symptoms as Clues: Is It RSV, COVID, the Flu or the Common Cold?
Editor’s note: See cold and flu activity in your location with the WebMD tracker.
Nov. 17, 2022 – The overlapping symptoms of respiratory viruses with household names – COVID-19, the flu, the common cold, and RSV (respiratory syncytial virus) – can make it challenging to tell them apart.
But how quickly the symptoms come on, how long they last, and even which symptom(s) you have can be important clues. Some treatments are available, and they’re most effective when taken early, so it’s worth figuring out which infection is hitting you, a friend, or a loved one.
The American Academy of Pediatrics came up with a helpful chart of which symptoms are most likely with which respiratory illnesses. “I think that’s a really good chart. And I do think that It is mostly the same for children and adults,” says Patricia (Patsy) A. Stinchfield, a registered nurse and president of the National Foundation for Infectious Diseases (NFID).
One exception she offered is that children with COVID-19 report less loss of taste and smell, compared to adults.
“It is extremely, extremely difficult to differentiate our symptoms between influenza, RSV, and COVID-19 … for parents and physicians for that matter,” says Mobeen Rathore, MD, a member of the American Academy of Pediatrics’ Committee on Infectious Diseases.
Stinchfield agrees that these viruses cause many of the same symptoms, such as congestion, coughing, and the potential for fever. But that does not mean it’s impossible to tell them apart.
The Fast and the Furious
“After 44 years as an infectious disease nurse practitioner, one of the things I would ask people trying to figure out how sick they are is about the onset.” For both children and adults, the flu often comes on very quickly. “It’s like one minute a child is playing or an adult is working – and the next minute … it’s that feeling like you got hit by a Mack truck.”
In contrast, the other viral illnesses tend to come on more slowly, she says. “People will say they feel like they’re coming down with something, they have chills, a sore throat, or feel ‘blah.’”
GI symptoms can be another clue. Vomiting and diarrhea are more common with COVID-19, and to some extent the flu, compared to RSV. This happens in part because the COVID-19 virus attaches to ACE2 receptors found in both the lungs and the gut, so it can affect both parts of the body.
In addition, it is well accepted that loss of taste and smell is a unique sign of COVID-19 infection. So that can help you tell COVID-19 from other viral illnesses.
Symptoms That Point to RSV
More sneezing, “copious amounts” of nasal mucus – snot – coming from a runny nose, and wheezing are some hallmark symptoms of RSV. Wheezing is when a child or adult makes a whistling sound while breathing. Stinchfield says, “You don’t see wheezing as much in COVID or influenza as you do with RSV.”
“With RSV, it’s more of the upper respiratory type of infection, and people tend to have more of what we call bronchiolitis,” Rathore says. Bronchiolitis is inflammation and congestion in the small airways of the lungs, which in turn can cause the wheezing sound.
In addition, some people with RSV have so much trouble breathing normally that they recruit other muscles to help, including muscles right above and below the breastbone.
The Common Cold Is Still Around
“People are talking a lot about RSV right now – and rightly so – but at least what we are seeing is quite different,” Rathore says. The latest internal figures from the American Academy of Pediatrics’ Committee on Infectious Diseases suggest that the common cold is predominant virus at the moment, followed by influenza, RSV, and COVID-19.
Rathore estimates that about 35% of patients coming in with a viral illness test positive for the rhino enterovirus causing the common cold.
“So it is probably much more common than any of the other infections we are talking about,” he says. And yes, the cold is more common, “but it’s also relatively less likely to cause more severe illness.”
Testing Remains Essential
Stinchfield shared two main messages. Testing is the only reliable way to diagnose a viral illness. “So if someone says: ‘This is definitely RSV’ and your child hasn’t been tested, you really don’t know.”
Testing very young children is important because they cannot describe their aches and pains, says Rathore, who is also chief of the Division of Pediatric Infectious Diseases and Immunology at the University of Florida in Jacksonville.
Testing can also confirm flu or COVID. “The nice thing is that there are some combination rapid tests that we use in clinics that can look at COVID-19, the flu, and RSV all in one,” Stinchfield says. She hopes that similar combination home tests will be available in the future.
Another reason to test is “there’s treatment for COVID-19 and there’s treatment for influenza, so it is important to know what is it that you have so that you could potentially benefit from early treatment.”
Stinchfield also says there are effective vaccines for COVID-19 and influenza, and a vaccine to protect against RSV is in development.
Don’t Hesitate to Get Help
Trust your instinct if you feel a viral illness is getting worse, Stinchfield says. “Just listen to your gut. If you are afraid, if you’re like, ‘This is not right,’ ‘my husband doesn’t look good,’ ‘my baby doesn’t look good,’” get medical help.
“That’s what we’re here for,” she says.
Stinchfield acknowledges there can be longer than usual waits to see a pediatrician or infectious disease doctor because of the RSV outbreak. Also, consider a virtual appointment if you are concerned about exposure to other people in a medical setting, she says.
Are We in for a Worrisome Winter?
With multiple noteworthy viruses in circulation, some experts are warning about a “twindemic” or “tripledemic” this coming winter. Rathore took it a step further. “I’m actually calling a possibility of a quaternary-demic.” In addition to COVID-19, RSV, and the flu, the common cold virus is widespread as well.
In fact, in his area of northeast Florida, RSV rates seem to be going down, flu is going up, and with COVID-19, “there is a concern that it may come back as it did in previous seasons.” At the same time, rates for the common cold are holding steady.
“There is nothing you can say for sure” about which viruses will dominate over the coming winter,” Rathore says. But the flu season in the Southern Hemisphere was relatively severe, and that often predicts what happens in the United States and other parts of the Northern Hemisphere, he says.
On a positive note, the flu vaccine this past season was a good match for protecting against the flu strain that circulated in Australia and elsewhere, which could be reassuring here. “So that is one more reason that all those eligible for the influenza vaccine should get it.”
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‘A Huge Deal’: Millions Have Long COVID, and More Are Expected
SOURCES:
Zachary Schwartz, MD, medical director, Vancouver General Hospital’s Post-COVID-19 Recovery Clinic.
Rainu Kaushal, MD, senior associate dean for clinical research, Weill Cornell Medicine, New York City; co-lead, National Institutes of Health RECOVER Initiative study on long COVID in adults and children.
Alexander Charney, MD, PhD, lead principal investigator, RECOVER adult cohort, Mount Sinai, New York City; assistant professor of psychiatry, genetics and genomic sciences, neuroscience, and neurosurgery, Icahn Mount Sinai.
Katie Bach, senior fellow, Brookings Institution.
David Cutler, PhD, professor of economics, Harvard University.
CDC: ”Long COVID, Household Pulse Survey.”
U.S. Census Bureau: “U.S. Adult population grew faster than nation’s total population from 2010 to 2020.”
U.S. Government Accountability Office: Science & Tech Spotlight: Long COVID
The Journal of the American Medical Association: “Prevalence and correlates of long COVID symptoms among U.S. adults,” “Association Between BNT162b2 Vaccination and Long COVID After Infections Not Requiring Hospitalization in Health Care Workers.”
The Lancet: “Persistence of somatic symptoms after COVID-19 in the Netherlands: an observational cohort study.”
Health Canada: “Frequency and impact of longer-term symptoms following COVID-19 in Canadian adults.”
U.K. Office for National Statistics: “Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 3 November 2022.”
World Health Organization: “At least 17 million people in the WHO European Region experienced long COVID in the first two years of the pandemic; millions may have to live with it for years to come.”
The Guardian: “The data is clear: long Covid is devastating people’s lives and livelihoods,” ”Trajectory of long covid symptoms after covid-19 vaccination: community based cohort study.”
Nature: “Outcomes among confirmed cases and a matched comparison group in the Long-COVID in Scotland study” (updated with correction).
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COP27’s Soil Reckoning: How Agriculture Is Returning To Its Roots
Lee Jones is a farmer in Huron, Ohio. He’s also a devotee of John Steinbeck, whose depression-era masterpiece “Grapes of Wrath” sang to him of soils robbed of value and people robbed of homes and livelihoods.
1938: A farm in the dustbowl of Colorado. (Photo by MPI/Getty Images)
Today, Jones and his 400-acre “Chef’s Garden” farm and state of the art culinary school on the banks of Lake Erie are the toast of Michelin star chefs. But around 40 years ago, when he was just shy of age 20, the Jones family experienced how climate and the economy can destroy a business. In 1983, hundreds of acres of Jones Farm fresh market vegetables were crushed in an unprecedented rain of hail. The avalanche of debt that followed at 22 percent interest rates smothered the business almost to death. The bank took their home and land and they moved into a 150-year-old house with a leaky ceiling and curtains for doors. They rebuilt their growing acreage in small rented parcels, selling goods from the back of farm trucks and station wagons. Farm life is tough, but this was next-level.
Farmer Lee Jones has set a high standard for regenerative farming with his 400-acre “Chef’s Garden” … [+]
It was at that point that Lee Jones understood firsthand how the ravages of climate, bad agricultural practices, unrelenting monoculture – in this case, cotton crops – and systemic financial depression made life hell on the 1930’s American prairies.
“The rain crust broke and the dust lifted up out of the fields and drove gray plumes into the air like sluggish smoke…The finest dust did not settle back to earth now, but disappeared into the blackening sky.” John Steinbeck, 1939, Grapes of Wrath.
The Dust Bowl with its searing droughts, blinding black storms of not rain but mocking dry dusty soil is almost a hundred years in the rear-view mirror. Ultimately, the story of American agriculture was re-set through aggressive New Deal conservation and agriculture programs of President Franklin D. Roosevelt, who famously told American governors in 1937, “the nation that destroys its soil destroys itself.” Also helpful, a changing climate cycle.
(Original Caption) 10/24/1932 -Atlanta, GA- Governor Franklin D. Roosevelt of New York has stressed … [+]
What gives us hope about nature is that there are cycles. And what makes us fearful about nature is that there are cycles. And while the science, machinery, and now technology of farming have leapt into the 21st century, so have the brutal environmental realities. These are the challenges of planet earth in 2022. The vise of rapacious farming practices, climate change, a deadly pandemic, inflation, and war has hundreds of millions of people on the planet in a chokehold.
People wait for water with containers at a camp, one of the 500 camps for internally displaced … [+]
That is why agriculture is in hot focus at this juncture in history and the degraded condition of soils globally is sharing the stage as political leaders, environment ministers, advocates, and climate-focused organizations of all kinds convene in Egypt for the COP27 summit.
President Joe Biden speaks at the COP27 U.N. Climate Summit, Friday, Nov. 11, 2022, in Sharm … [+]
The United Nations World Food Program (WFP) and the UN Food and Agriculture Organization (FAO) reports the world faces its greatest crisis in modern history, with as many as 50 million people on the verge of famine.
Global organizations agree that feeding the hungry is the shared moral responsibility of affluent nations. At the same time these nations themselves are facing a reckoning of climate extremes and radically depleted soil quality, says Ronald Vargas, Secretary of the FAO’s Global Soils Partnership.
Ronald Vargas, Global Soil Partnership Secretariat, FAO
When governments and activists talk about environmental quality, Vargas observes, they refer to air quality and water quality. But rarely will they include soil quality or soil health. Yet, he says, “the interface between air and water is soils. With the Dust Bowl, for example, the soil rose to the atmosphere. If your soil is polluted with heavy metals, or the remnants of pesticides, or other materials, these contaminants will also be found in the air. And water quality depends on the soils.”
Astoria, N.Y.: Photo of PPE gloves and surgical masks improperly disposed of on sidewalks and … [+]
Today, aggravating an already bad situation is the onslaught of Covid19 pandemic-era plastics for a multitude of health equipment. At the same time, the food packaging that has kept restaurants alive has kept microplastics percolating in the atmosphere. “These contaminants are everywhere,” says Vargas. “Where are the masks and packaging ending up? In the soils. And in many countries, waste management is not adequate. Those particles of microplastic go into the soil, from there they go to the air, and then they go to the water. “
Sustainable farming practices that give to, rather than take from, the soil are critically in demand, says Vargas. And the question, will there be enough calories to consume? is very different from the question: will there be enough healthy food to eat?
The 400-acre regeneratively farmed Chef’s Garden in Huron, Ohio,
What is in the soil is the difference between boom and bust for Lee Jones, a purveyor
Miniature root vegetables cultivated exclusively for five-star tables.
of top quality vegetables to best-of-the-best restaurants, and now to consumers online. Emerging from the near ruin of their farm business almost four decades ago, the Jones family learned there was an opportunity to do better by nature and, as a result, better by consumers. Since then, Jones has engaged a staff of farmworkers, packagers, managers, scientists and a resident chef to curate his crops. He’s cultivated a network of demanding star chefs who have inspired him to develop unique,
Executive Chef Jamie Simpson, Culinary Vegetable Institute, The Chef’s Garden.
regeneratively grown produce: golden zucchini blossoms, miniature squash, delicate carrots of multiple colors, tomatoes and cucumbers of myriad colors, sizes and flavors, cauliflowers, lettuces and root vegetables in a rainbow of colors, and much more.
“It’s the farmer’s goal to leave the land in better condition for future generations,” says Jones. “We’ve added to that. We believe that a farm needs to have healthy soil, grow healthy food, feed healthy people, in a healthy environment. My dad had a saying – ‘We’re just trying to get as good at what we’re doing as the growers were a hundred years ago.’”
The Chef’s Garden fields are fertilized through strips of clover and other small growth, established between rows of plants, drawing nutrients from the sun and pulling them into the soil for the larger harvest. Composted plants and grasses protect the base of plants along each row. And the rhythm of farming is geared to restoring the soils, as opposed to the ravages of big-business mono-culture.
Leafy harvest, The Chef’s Garden.
On his 400-acre farm, Jones keeps 200 acres planted with undemanding cover crops to harvest the sun’s energy. The other half is for crops to take to market. The two segments are rotated every year. Jones won’t say his produce is organic, strictly, because – even though chemical fertilizers and pesticides are avoided at most costs – if a chemical product can save a crop, it will be used.
In his signature daily outfit of blue overalls, white oxford shirt, and red bow tie, Lee Jones is expressing a solidarity with farmers who struggle and endure, and saluting those who have gone before, like the working people Steinbeck depicted in “Grapes of Wrath.”
Baby lettuces ready for planting, The Chef’s Garden, Huron, Ohio.
Jones knows he is just one farmer working a few hundred acres on a planet where only 38 percent of the land can be farmed. For him, it is “one step” in the shared human agricultural “journey of a thousand miles,” but well worth the passion.
Louise Schiavone, Contributor
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Long COVID Patients Find Aid and Risk in Online Support Groups
Editor’s note: Find the latest long COVID news and guidance in Medscape’s Long COVID Resource Center.
Nov. 9, 2022 — Jill Sylte wrote that she would not have made it through long COVID without her Facebook support group, Survivor Corps.
“It has helped me so much, by being able to be in touch with other long hauler members,” the Pensacola, FL, woman wrote in a comment on a group post in March. “Everyone in this group understands each other. Unless you are a long-hauler you don’t completely feel what we are going through.”
The listing of hundreds of Facebook long COVID communities goes on for page after page. Some have a few members. Survivor Corps has nearly 200,000.
“This space has absolutely exploded in the past 2 years,” says Fiona Lowenstein, a journalist who started the group called Body Politic that has become a COVID support group.
The public Facebook COVID and long COVID groups are studded with posts and comments like this among the hundreds that can come in a day.
On a single day in late October, Survivor Corps posters were trying to find out if anyone else had hair loss, rashes, sleep apnea issues, migraines, bladder problems, neck pain, vertigo, allergies, or double vision. An October post on increasing cholesterol levels drew more than 50 comments within 17 hours.
The support groups provide advice and encouragement that patients often are not getting from their medical providers, friends, and family. They’re also a source of valuable data for researchers. But some doctors worry that they are not always entirely benign, even as they gain popularity.
From hospital Meeting Rooms to Online
Patient support groups have moved out of the hospital community room and onto Facebook, Reddit, WhatsApp, and other online spaces. Before long COVID was recognized, these forums were a lifeline for patients with chronic conditions.
After having lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, long COVID seemed familiar to JD Davids, a chronic disabilities activist in Brooklyn who works with a group called Long COVID Justice. He thinks patient groups are important for otherwise healthy people with unexplained post-infection symptoms like extreme fatigue.
“One of the problems is that these often-volunteer-based patient support groups are all that people have,” Davids says. The groups are essential to patients but need to be part of a comprehensive care plan, he says.
While offering support, online groups can be sources of misinformation and unproven remedies. Advocates and doctors say some group members come to them asking about miracle cures and supplements.
Alexander Truong, MD, a doctor at Emory University in Atlanta who works with long COVID patients, says many of his patients have bought expensive but useless vitamins and supplements they learn about online.
“A lot of these patients are grasping at straws to try to figure out anything that can make them feel better and they are very vulnerable to this kind of scam,” he said during a live online forum hosted by SciLine, a project of the American Association for the Advancement of Science.
Privacy can be another issue. Tens of thousands of people post details about their health and lives in public Facebook groups. Anyone signed on to Facebook can read the posts.
A Treasure Trove of Data
Analysis of these private patient conversations can also produce useful data for researchers. The organization Patients Like Me, founded in 2005 to support families with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) is built around the concept.
Researchers at Yale and elsewhere are already working with long COVID patient groups. Facebook’s Data for Good program offers three COVID databases based on posting on the platform. The Patient-Led Research Collaborative provided data for a study published in The Lancet that was among the first the characterize long COVID.
For Facebook groups, the site’s rules requiregroup moderators to “obtain user consent for your use of the content and information that you collect.” But the platform has been fighting “unauthorized scrapers” who lift data off Facebook and republish it.
The Survivor Corps group, the largest long COVID Facebook group with nearly 200,000 members, is public. Anyone can read any of the posts. Those signed into Facebook can click on the “People” tab and see any group members who have a single mutual contact.
Diana Berrent, a New York photographer who caught COVID-19 early in the pandemic, is the founder of and a contributor to the Survivor Corps Facebook group and its sister website. She thinks the choice of support group might be a matter of where someone already spends their time online.
“And I don’t see it’s a privacy issue,” she says. “It’s really whatever platform you’re most comfortable in.”
Berrent also runs polls and had worked with researchers at Yale, the National Institutes of Health, and elsewhere.Although the data on her site can be valuable, Berrent says she has turned down offers from buyers.
At the same time, she says she received grant money from the Bill & Melinda Gates Foundation and the Chan Zuckerberg Initiative when she started her work, but it has run out. She doesn’t want to ask for donations from support group members. She says she has funds to pay for one full-time employee and one part-time employee.
Group moderators say money for this cause is hard to come by. And this need for funding can be a vulnerability. Some well-established patient groups specializing in a range of conditions get money from the pharmaceutical industry. But with no marketable treatment for long COVID, corporate sponsors are scarce.
That can lead to please for cash.“To be blunt, our financial situation is dire. We estimate Body Politic, including our Slack space, will cease to exist by early 2023 without funding (GOAL: $500k),” Body Politic said in an Instagram post early in November.
“Our team is pursuing private donors, foundations, and strategic partners, and we could use more connections and insights on potential partners.”
Groups like Body Politic say they need money to hire more moderators, pay for increasingly robust software subscriptions, advocate for patients, offer public education, and work with government and health leaders.
The Struggle to Keep Up
Hosting a group can be a big commitment. Florida nurse Laney Bond says when COVID-19 emerged, she set up a Facebook group to help fellow nurses. Bond, who had been treated previously for mast cell activation syndrome — which can cause allergic reactions – started to develop long COVID symptoms like heart problems and brain fog.
Bond says she noticed online discussions about long COVID patients with similar symptoms and wanted to share the evidence-based medicine she had been gathering about post-viral illness.
“I just threw a group out there for people in hopes that the information and my experience would shorten their journey,” she says.
Now Bond has trouble keeping up with the 95,000 members signed up for her COVID-19 Long Haulers Support group. She also hosts a web page where she posts simplified information on COVID-19 she gets from the National Institutes of Health.
Bond is a volunteer with a day job. She says she makes about $10 a month from Google ads on the website she runs in addition to the Facebook page, but otherwise, has no funding source. So she’s backed up on the moderation.
“It’s too much, but I do my best,” she says. Facebook has provided some moderator tools to help.
A New Age of Advocacy
The internet has spawned the engaged patient – people who do their own research and plan care along with their doctors. The engaged long COVID patient is bringing in “a new age of advocacy,” David Putrino, PhD, a physical therapist and professor at the Icahn School of Medicine at Mount Sinai in New York City, writes in a Perspective for Medscape, WebMD’s sister site for medical professionals.
“Such organizations are driving incredibly comprehensive biomedical and clinical research, and doing so at an unprecedented pace,” he writes.
Support from other patients is essential for people with chronic conditions, but it need to be paired with solid medical care and support services, advocates say.
Davids says he is most active in the Body Politic channel on the online tool Slack, where 11,000 members meet privately. He appreciates that a human, not an algorithm, chooses which posts he sees. And he thinks Body Politic is well moderated, something he and others suggest patients consider when joining a group.
“Support groups should be moderated. You could ask as a support group member — how are our moderators trained? How do you know are they equipped to manage the space?” he asks.
The Survivor Corps page is “heavily, heavily, moderated,” Berrent says. Users “cannot state a scientific fact unless they link to a legitimate source,” she says. They can talk about what has helped them, but they can’t give medical advice or talk politics.
Conflict among group members may be a source of agitation and that could be a drawback, Davids cautions. He suggests that patients try out a few groups and see what happens when conflicts emerge.
“How is it handled? Does it sit right with you? Does it get your heart racing — which you certainly don’t need?” he says. Davids offers a list of recommended groups on his Long COVIDJustice page.
The Body Politic group was founded as a wellness collective before the pandemic but morphed into a long COVID group in 2020 when Lowenstein and another member got sick. They say they couldn’t find help anywhere else.
Lowenstein, who now has mild symptoms and no longer runs the group, agrees that patient support groups should be well-moderated. Lowenstein also thinks they should be limited to those with long COVID and worries that journalists and people curious about COVID dwell on the public sites.
“It’s not a particularly private or safe-feeling space for people with long COVID,” Lowenstein says.
Facebook has taken some action on COVID communities, including an effort to look for members in distress. Bond, who runs the COVID Care Group, says she was vetted by Facebook earlier this year and they shared some moderator tools, including a red flag for postings that suggest suicide. Bond says she did 20 suicide interventions last year for long COVID patients.
Meta, the parent company of Facebook and Instagram, has COVID and vaccine misinformation policies. The company reports that it has removed 27 million pieces of content from Facebook and Instagram feeds and more than 3,000 accounts, pages, and groups for violations.
But the stream of posts and comments continues. Christian Sandrock, MD, director of critical care at University of California Davis, says many of his long COVID patients get information on Facebook.
“What we really say is — almost as an absolute — is if anyone is saying this definitely works, this is awesome, it is a quick fix … don’t go with,” he said during the SciLine briefing. “We know this disease is complex. We know we don’t have good answers.“
