Declining antibodies and immunity to COVID-19 – why the worry?

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Most people are aware that testing for antibodies in a person’s blood can show if someone has had a specific disease, such as COVID-19. Those antibodies provide protection from getting the disease again.

But in a paper published in the New England Journal of Medicine, researchers found that antibody levels decline in individuals who have recovered from COVID-19, dropping by half every 36 days. Does that mean people who have recovered from COVID-19 have lost their immunity?

I am a geneticist interested in innate immune response – the part of the immune system that we have at birth – and how the innate immune cells “educate” antibody-producing cells about a pathogen and how to identify and destroy it. As I’ll explain, antibodies are important for immunity, but they aren’t the only factor that counts.

Two arms of the immune system

The immune system is made up of two parts: innate immunity and adaptive – or acquired – immunity.

The innate immune system, which includes white blood cells called dendritic cells, monocytes and neutrophils, is present at birth and responds instantly to invaders. This group of white blood cells bombard pathogens with destructive chemicals and swallow and destroy viruses and bacteria. The innate immune system provides an instantaneous reaction to a pathogen. The problem is that it’s a blunt instrument – it responds the same way to all perceived threats.

The adaptive immune system, which is made up of B cells and T cells, must learn about a pathogen and its characteristics from the innate immune cells. This system takes longer to kick in, but the up side is that it is very specific and in many cases lasts a lifetime.

The immune system’s memory

The history of pathogen exposure is carried in so-called memory T cells and memory B cells. When an infection is defeated and gone, these cells reside in the peripheral tissues of the body such as lymph nodes or spleen and serve as a memory of the disease-causing virus. This immunological memory is responsible for the host defense and kicks into action in case of the second wave or attack of the pathogen.

It is normal for antibody levels to decline after a person has recovered from a disease. But the New England Journal of Medicine paper raised concerns because it suggests that we are losing our immunological memory – which is as bad as losing a real memory.

What role do T cells play in immunity?

B cells and antibodies are only part of the immune response. T cells help B cells produce antibodies – which are proteins that can bind to a specific pathogen and destroy it.

The way this happens is that first the B cells swallow the virus and start producing antibodies.

T cells cannot swallow the virus. But a type of white blood cell called an antigen-presenting cell can. After it does, it “shows” different parts of the virus to the T cells. The T cells then learn about the virus which they can now seek and destroy.

T cells also stick to the B cells and send them the activation signals that help B cells ramp up antibody production.

If antibodies decline, what does this mean for COVID-19 immunity?

It suggests that when there are fewer antibodies in the blood, there is a greater chance that a number of individual virus particles, called virions, will survive and escape destruction. Therefore, the remaining virions will continue to proliferate and cause disease.

What do declining antibody levels mean for establishing herd immunity?

Herd immunity refers to a population and occurs when a sufficiently high number of people within a community are immune to the virus and incapable of transmitting it. That provides protection for those who are still vulnerable. For example, if 60% of people are protected against COVID – because they have survived the infection and carry antibodies – it might protect (via less frequent interactions) the remaining 40% from getting sick.

But the results in the New England Journal of Medicine suggest that people with lower levels of antibody may still have the virus and may not have symptoms of the disease.

That means that if these people with low antibody levels hang around healthy, uninfected people, they present a danger to them because they can transmit the virus.

When antibody levels fall, does immunity disappear?

In general, the answer is no. If the virus attempts to cause a second infection, the memory B and T cells are able to recognize it, multiply million of times and defend the body against the virus, preventing it from triggering another full-blown infection.

The protection provided by memory T and B cells is the reason that vaccine-based protection works.

However, there are exceptions. A lifelong vaccine against the flu does not work because flu’s genetic code changes rapidly, altering the appearance of the flu, and therefore requires a new vaccine every season.

But with SARS-CoV-2, the problem as I see it, seems to be that those memory T cells and B cells seem to be wiped out.

Antibodies are proteins and last for only between three and four weeks in the blood circulation. To keep antibody levels high, B cells need to replenish them with a fresh supply. But in COVID-19, the declining antibody levels suggest that the cells that produce these antibodies are not present in sufficient numbers, which would explain the drop in antibody levels. Studies of how long immunity from COVID-19 last may shed more light, but for now we do not know the reason why.

 

 

 

 

Fake vs genuine people: 10 ways to spot the difference

Posted on by • Posted in 2020 Election Issues, Attention, Authentic, Consistent, Deception, Ego, Honesty, Leadership, Leadership Cares, Leadership Culture, Leadership Integrity, Leadership Intent, Leadership Trust, Lies, Mislead, Misleading, Mistrust, Mixed Message, Trust, Truth, Unrealistic Expectations • Leave a comment

Fake vs genuine people: 14 ways to spot the difference

Check Out 10 Ways To Identify Fake People - EKSUOLOFOFO

Not sure who you’re dealing with?

Fake vs genuine people may look the same, but with a little bit of knowledge, you can spot the difference.

Fake people are ingenuine and often hypocritical. They do things for their own gain but hide behind altruism.

Genuine people are true to themselves. They do things because they want to, not because they have to. Plus, they enjoy helping people.

Fake people aren’t just frustrating—they can even be damaging to your health.

In this article, I’ll break down the key difference between fake and genuine people, explain how to tell if someone is a genuine person, and share some tips on standing up for yourself.

Let’s begin.

Fake vs genuine people

The key difference between fake and genuine people is honesty.

Fake people aren’t honest with themselves and the people around them. They do things based on lies and deceit.

Genuine people are honest with themselves and others. Their actions are aligned with what they believe.

The problem is that fake people often don’t know they’re being fake. They may be acting based on lies without knowing how hypocritical they are being.

Fake people don’t know they’re fake because of self-deception.

How can you recognize someone is being fake?

5 things fake people often do

1) Lead people on

Fake people often lead people on because they are trying to please everyone. They spend so much time trying to please everyone else that a lot of people get let down in the process.

2) Cancel plans

Whether they never invite you out to do things in the first place or they cancel at the last minute, they’re fake. They’re probably so busy trying to please the other people that they made plans with that they have to cancel yours.

3) Talk about you behind your back

This is what’s really annoying about fake people. To your face, you’re their best friend. But as soon as you’re away, you’re nothing. They sit and gossip about you to make themselves look better to whoever it is they’re trying to impress.

4) Never get mad

You know who gets mad? Real people! Those who claim that they hardly ever get mad or frustrated about things are fake. Everyone is passionate about something, and everyone gets mad.

5) Disappear when you need them

Need help moving? Going through a difficult breakup? Fake people disappear right when you need them. As soon as you ask them for help, they are gone.

How to tell if someone is genuine

It can be hard to tell if someone is a genuinely nice person or if they are only being nice to you because they need something from you.

Unfortunately, many people are only out to help themselves, but there are still lots of genuine people walking around on the planet.

Here’s how you can spot a genuine person from a fake person.

1) Have a few close friends

Those who are authentic to their selves know that they can’t do everything. They can’t commit to dozens of people, so they have a few close friends that they really commit to.

2) Show up

When a true, genuine person makes plans with you, they’re going to show up. They don’t cancel on you last minute, and they aren’t going to make you wait for a “date” that’s never going to happen. They enjoy your company.

3) Admire people

Genuine people don’t gossip. Instead, they admire the positive qualities that they find in people around them. They talk about the positive, not the negative, and like to share good things.

4) Get angry and feel hurt

Real people feel things. They aren’t going to sugarcoat and act as though nothing bothers them. When genuine people are passionate about something, they’re here to show it. They invest their time and energy into their passions, and they’ll make it known.

5) There for you

When you’re hurting, genuine people hurt with you. They aren’t going to make you feel like you have no one. You can rely on them, and when something happens or you need a helping hand, they’ll be there.

Standing up to fake people

If you have fake people in your life, it’s essential to build the courage to stand up for yourself.

It’s not just about not being pushed around by this particular fake person, though this is important.

It’s also important because it teaches you to set boundaries.

This will make a big difference the next time someone fake enters your life.

I learned the importance of boundary-setting in Rudá Iandê’s free masterclass on embracing your inner beast. It’s a brilliant masterclass and completely changed how I see myself.

I used to think it was a bad idea standing up for myself. I would worry so much about what other people think.

By the time I finished watching Rudá Iandê’s masterclass, my perspective had completely shifted.

Are fake people bad for you?

Fake people are annoying, but are they actually bad for your health? Well, yes, they can be.

It takes time and energy to invest in a relationship, and when that investment is in something fake, it’s hurtful. But it goes beyond that.

Plenty of studies have found that there is a link between our relationships and our well-being. When our social relationships are complicated or one-sided, we feel worse. The strength of our connection to people is what really matters.

So, what does this mean?

Basically, if you have 20 friends, but none of them would come and pick you up after you’ve blown a tire, then your relationships aren’t that great.

But if you had just one or two friends that you could count on, that would show up when needed, the strength of that connection is great. This helps you to feel whole and connected to others, which is beneficial to your health.

Why are there so many fake people?

In today’s world, it seems like there are a lot more fake people than ever before. And it may be true. Thanks to social media and the notoriety that a person can gain from it, it seems like everyone wants to be famous.

To be famous, at least some people have to like you. So, a lot of people will act fake in hopes of getting a following and more people to like them. There are a lot of people who use the internet as a means to stop their loneliness, but it can just make it worse for them.

Why do people act fake?

People act fake because:

  • They aren’t happy with who they truly are
  • They want to feel better about themselves
  • They want people to follow them
  • They want to control others
  • They don’t like their life

Everyone is fake sometimes

The truth is when it comes to fake vs genuine people, everyone is fake sometimes. Whether you’re fake to your coworkers or your so-called friends is up to you. But being fake isn’t something that is good for us.

The opposite, being authentic, is what makes us better people. And while I’m going to talk a bit more about authenticity in a moment, I just want to say that anyone who is fake and putting on a show, isn’t worth your time. You make strong connections with others, and those are the friendships to keep.

How do you really know you’re dealing with a fake person? Well, I’m glad you asked. There are 10 easy ways to test whether the person you’re dealing with is fake or genuine.

10 ways to know you’re dealing with a fake person

Every fake person has 10 tell-tale signs that they’re fake. No matter how hard they try to hide how unauthentic they are, these signs say otherwise:

1) Full of themselves

It probably doesn’t come as a surprise, but fake people are full of themselves. They think that they’re better than everyone around them, and they love to brag. If you find that you have that one friend who is always trying to brag about their own accomplishments, they’re not being genuine.

2) Are manipulative

Fake people have a sort of “mob mentality.” They manipulate others and want everyone to believe what they believe. To do this, they will appeal to others’ emotions. Sometimes, they’ll bandwagon behind a “hot issue” or something that will give them the most notoriety.

3) Jaded with emotions

Like I mentioned before, fake people don’t do emotions well. Most of the time, they think that they’re a waste of time. Since it doesn’t get them ahead, they don’t do them.

Sure, they can fake emotions here and there to get a rise out of people and hope for more people to follow them. But, that’s about as far as they get. Their emotions are jaded, and when you come to them for help, they’re going to be emotionally there for you.

4) Judge you

Do you have a friend that is always judging you? A lot of times, fake people are insecure about what they have. They think that if you don’t believe the same things they do, then you’re wrong. To counteract their own insecurity, they judge you.

It doesn’t feel good. They even use this judgment as a way to try and get back control. Since they want to build their own egos up, they think that by putting you down, it makes them look better. This is where all of their energy is focused.

5) Have hostile humor

Though they may plaster on a kind smile and say nice things, when their humor comes out, it’s clear to see that they’re fake. Many people use hostile humor to try and hide the shame that they feel with their own selves.

Since fake people aren’t happy with their true, authentic selves, they use hostile humor to make them feel better. By putting you down, it builds them up. Then when you get mad about their hostile humor, they blow you off or act like it isn’t a big deal. Remember, they don’t “do” emotions.

6) Aren’t consistent

It’s that friend who always has a new idea. One moment they’re investing in stocks, the next moment their opening up an online store, and finally, they’ve found their dream of being a realtor.

Sound familiar?

Those friends who lack consistency and can’t stay still aren’t true to themselves. They’re as fake as they come, and they don’t care if they leave a big mess behind them.

7) Don’t learn lessons

Fake people don’t get a free pass when it comes to their mistakes, but they think that they do. When they do make a mistake, they aren’t going to admit to it. Or even if they do admit to it, they aren’t going to learn from it.

Genuine people recognize their mistakes and learn from them. Fake people would rather act like it never happened in the first place.

8) Unrealistic expectations

Not only do they put you down and try to control you, but fake people also have unrealistic expectations. They expect people to drop everything for them last-minute, but they wouldn’t do the same for you.

On top of that, they expect to have the best of everything. Often times, fake people are constantly buying new things, especially expensive ones. They want to showcase the success that they have, and they believe that their belongings are how they can do that.

9) Always need the attention

Having your engagement party? Well, your fake friend is about to announce a huge promotion. If they have the chance to steal the spotlight, they will. These people want to be the star of the show, and they don’t care what show it is.

Attention always has to be focused on this person because they demand it. They want to be noticed, and they need that praise from others to feel good about themselves. Unfortunately, it leads to a lot of hurt people when they do something toxic like this.

10) Don’t respect your boundaries

Maybe the biggest sign of fake people? They don’t respect your boundaries.

Once you talk to them, they blow you off. This can be if you bring up hurt feelings or some time where they made a mistake. Boundaries are nonexistent to them unless they were the ones that set them.

Because of this, these friendships can be hard to sever, and they can lead to a lot of pain. But anyone who doesn’t respect your boundaries is not worth keeping around in your life.

Be authentic and attract authenticity

When it comes to fake vs genuine people, it can be hard to know which is which. However, the 10 ways I’ve outlined is a great start. Because fake people usually look for people who will follow them or people who are easily controlled, the best way to get rid of fake people is by being authentic yourself.

As Rudá Iandê says, “Our world is full of fake perfection and happiness, but craving for authenticity.” It is by being your authentic self that you will find deep, lasting connections that will help you to lead a happy and healthy life.

Our lives are too short to spend investing in fake people. Choose to be yourself and be authentic, and you’ll find genuine people to share your life with.

 

 

 

 

FDA chief apologizes for overstating plasma effect on virus

Posted on by • Posted in 2020 Election Issues, Centers for Disease Control & Prevention (CDC), Coronavirus, Coronavirus Treatment, Credibility, Economic Crisis, False Hope, False Narrative, Food and Drug Administration (FDA), Honesty, Integrity, Misinformation, Misinterpret, Mislead, Misleading, Mistake, Mistrust, Mixed Message, Scientists, Trust, Truth, Unproven, Vaccine, Wishful Thinking • Leave a comment

https://abcnews.go.com/Health/wireStory/fda-commissioner-overstated-effects-virus-therapy-72595122?fbclid=IwAR3Um3rVuom9rJNCOvccmmTBDOrrRePEu1BX1VgRvAzYbpL2NATGjY2-1IY

FDA chief apologizes for overstating plasma effect on virus

Food and Drug Administration Commissioner Stephen Hahn is apologizing for overstating the life-saving benefits of using convalescent plasma to treat COVID-19 patients.

Responding to an outcry from medical experts, Food and Drug Administration Commissioner Stephen Hahn on Tuesday apologized for overstating the life-saving benefits of treating COVID-19 patients with convalescent plasma.

Scientists and medical experts have been pushing back against the claims about the treatment since President Donald Trump’s announcement on Sunday that the FDA had decided to issue emergency authorization for convalescent plasma, taken from patients who have recovered from the coronavirus and rich in disease-fighting antibodies.

Trump hailed the decision as a historic breakthrough even though the treatment’s value has not been established. The announcement on the eve of Trump’s Republican National Convention raised suspicions that it was politically motivated to offset critics of the president’s handling of the pandemic.

Hahn had echoed Trump in saying that 35 more people out of 100 would survive the coronavirus if they were treated with the plasma. That claim vastly overstated preliminary findings of Mayo Clinic observations.

Hahn’s mea culpa comes at a critical moment for the FDA which, under intense pressure from the White House, is responsible for deciding whether upcoming vaccines are safe and effective in preventing COVID-19.

The 35% figure drew condemnation from other scientists and some former FDA officials, who called on Hahn to correct the record.

“I have been criticized for remarks I made Sunday night about the benefits of convalescent plasma. The criticism is entirely justified. What I should have said better is that the data show a relative risk reduction not an absolute risk reduction,” Hahn tweeted.

The FDA made the decision based on data the Mayo Clinic collected from hospitals around the country that were using plasma on patients in wildly varying ways — and there was no comparison group of untreated patients, meaning no conclusions can be drawn about overall survival. People who received plasma with the highest levels of antibodies fared better than those given plasma with fewer antibodies, and those treated sooner after diagnosis fared better than those treated later.

Hahn and other Trump administration officials presented the difference as an absolute survival benefit, rather than a relative difference between two treatment groups. Former FDA officials said the misstatement was inexcusable, particularly for a cancer specialist like Hahn.

“It’s extraordinary to me that a person involved in clinical trials could make that mistake,” said Dr. Peter Lurie, a former FDA official under the Obama administration who now leads the nonprofit Center for Science in the Public Interest. “It’s mind-boggling.”

The 35% benefit was repeated by Health and Human Services Secretary Alex Azar at Sunday’s briefing and promoted on Twitter by the FDA’s communication staff. The number did not appear in FDA’s official letter justifying the emergency authorization.

Hahn has been working to bolster confidence in the agency’s scientific process, stating in interviews and articles that the FDA will only approve a vaccine that meets preset standards for safety and efficacy.

Lawrence Gostin of Georgetown University said Hahn’s performance Sunday undermined those efforts.

“I think the integrity of the FDA took a hit, if I were Stephen Hahn I would not have appeared at such a political show,” said Gostin, a public health attorney.

Hahn pushed back Tuesday morning against suggestions that the plasma announcement was timed to boost Trump ahead of the Republican convention.

“The professionals and the scientists at FDA independently made this decision, and I completely support them,” Hahn said, appearing on “CBS This Morning.”

Trump has recently accused some FDA staff, without evidence, of deliberately holding up new treatments “for political reasons.” And Trump’s chief of staff, Mark Meadows, said over the weekend that FDA scientists “need to feel the heat.”

The administration has sunk vast resources into the race for a vaccine, and Trump aides have been hoping that swift progress could help the president ahead of November’s election.

At Sunday’s briefing Hahn did not correct Trump’s description of the regulatory move as a “breakthrough.” He also did not contradict Trump’s unsupported claim of a “deep state” effort at the agency working to slow down approvals.

Former FDA officials said the political pressure and attacks against the FDA carry enormous risk of undermining trust in the agency just when it’s needed most. A vaccine will only be effective against the virus if it is widely taken by the U.S. population.

“I think the constant pressure, the name-calling, the perception that decisions are made under pressure is damaging,” said Dr. Jesse Goodman of Georgetown University, who previously served as FDA’s chief scientist. “We need the American people to have full confidence that medicines and vaccines are safe.”

Convalescent plasma is a century-old approach to treating the flu, measles and other viruses. But the evidence so far has not been conclusive about whether it works, when to administer it and what dose is needed.

The FDA emergency authorization is expected to increase its availability to additional hospitals. But more than 70,000 Americans have already received the therapy under FDA’s “expanded access” program. That program tracks patients’ response, but cannot prove whether the plasma played a role in their recovery.

Some scientists worry the broadened FDA access to the treatment will make it harder to complete studies of whether the treatment actually works. Those studies require randomizing patients to either receive plasma or a dummy infusion.

 

 

 

Cartoon – Pandemic Stages of Grief

Posted on by • Posted in 2020 Election Issues, Angry, Cartoon, Clinical Testing, Contact Tracing, Coronavirus, Denial, Depression, Economic Crisis, Economic Recovery, False Hope, False Narrative, Infection Control, Infection Control Plan, Infectious Virus, Misinformation, Misinterpret, Mislead, Misleading, Mistake, Mistrust, Mixed Message, Mortality, National Strategy, Pandemic, Personal Protective Equipment (PPE), Public Health, Public Opinion, Public Perception, Public Safety, Public Schools, Quarantine, School Reopening, Scientists, Social Distancing • Leave a comment

Cartoon by Sally-Covid 19 Pandemic Stages of Grief |

Contact tracing stopped at the country club gates

Posted on by • Posted in Asymptomatic Transmission, Clinical Testing, Contact Tracing, Coronavirus, Pandemic, Privacy, Public Health, Public Safety, Public Schools, Quarantine, Social Distancing, Superspreader, Superspreader Event, Superspreading Events • Leave a comment

https://mailchi.mp/0e13b5a09ec5/the-weekly-gist-august-21-2020?e=d1e747d2d8

Neo Classical Country Club Estate - $8,300,000 | Entrance gates ...

From downtown New Orleans to the tony suburbs of New York, post-graduation parties and summer gatherings drawing dozens of teens have become loci of COVID infections around the country.

Taking a look inside one prep-school-party COVID cluster, an article in the New Yorker recounts the reverberations from graduation parties turned superspreader events at an exclusive Atlanta private school.

Spurred by a false sense of security (“We don’t live in New York,” one dad said) and Georgia’s early reopening orders, several families at the Lovett School held graduation parties, some with as many as 50 attendees.

The school received its first report of a student testing positive four days after attending the graduation festivities. A growing cluster of infections became evident as more cases came to light, including among students who posted TikTok videos to announce their positive test results. Lovett’s school nurse began ad-hoc contact tracing, finding 23 positive cases on her first day of searching.

But Fulton County contact tracers were met with fierce resistance from parents, with the vast majority of those contacted declining to talk. The school provided students’ contact information, but said it couldn’t cooperate with tracers further due to privacy regulations.

There are many reasons that individuals might be reticent to participate in contact tracing, such as fear of losing a job, or worries about immigration status. But the resistance of wealthy, highly educated “prep school parents” to contact tracing is shocking. Public health efforts will continue to be stymied as long as the instinct to protect individual and school reputations from the perceived stigma of infection outweighs the greater good—the health of the community.

 

 

 

 

Long-Haulers Are Redefining COVID-19

Posted on by • Posted in Antibodies, Chronic Care Management, Chronic Conditions, Chronic Diseases, Coronavirus, Coronavirus Long-Term Complications, Infection Control, Infection Control Plan, Infectious Virus, Long COVID, Mortality, Pandemic • Leave a comment

https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/

Long-Haulers Deal With Symptoms Weeks After Coronavirus Infection ...

Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.

Lauren nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale.

Tens of thousands of people, collectively known as “long-haulers,” have similar stories. I first wrote about them in early June. Since then, I’ve received hundreds of messages from people who have been suffering for months—alone, unheard, and pummeled by unrelenting and unpredictable symptoms. “It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today,’” says David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers.

Of the long-haulers Putrino has surveyed, most are women. Their average age is 44. Most were formerly fit and healthy. They look very different from the typical portrait of a COVID-19 patient—an elderly person with preexisting health problems. “It’s scary because in the states that are surging, we have all these young people going out thinking they’re invincible, and this could easily knock them out for months,” Putrino told me. And for some, months of illness could turn into years of disability.

Our understanding of COVID-19 has accreted around the idea that it kills a few and is “mild” for the rest. That caricature was sketched before the new coronavirus even had a name; instead of shifting in the light of fresh data, it calcified. It affected the questions scientists sought to ask, the stories journalists sought to tell, and the patients doctors sought to treat. It excluded long-haulers from help and answers. Nichols’s initial symptoms were so unlike the official description of COVID-19 that her first doctor told her she had acid reflux and refused to get her tested. “Even if you did have COVID-19, you’re 32, you’re healthy, and you’re not going to die,” she remembers him saying. (She has since tested positive.)

Long-haulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia and myalgic encephalomyelitis, also known as chronic fatigue syndrome. A British group—LongCovidSOS—launched a campaign to push the government for recognition, research, and support.

All of this effort started to have an effect. More journalists wrote stories about them. Some doctors began taking their illness seriously. Some researchers are developing treatment and rehabilitation programs. Representative Jamie Raskin of Maryland introduced a bill that would allow the National Institutes of Health to fund and coordinate more research into chronic illnesses that follow viral infections.

It’s not enough, argues Nisreen Alwan, a public-health professor at the University of Southampton who has had COVID-19 since March 20. She says that experts and officials should stop referring to all nonhospitalized cases as “mild.” They should agree on a definition of recovery that goes beyond being discharged from the hospital or testing negative for the virus, and accounts for a patient’s quality of life. “We cannot fight what we do not measure,” Alwan says. “Death is not the only thing that counts. We must also count lives changed.”

Only then will we truly know the full stakes of the pandemic. As many people still fantasize about returning to their previous lives, some are already staring at a future where that is no longer possible.

A few formal studies have hinted at the lingering damage that COVID-19 can inflict. In an Italian study, 87 percent of hospitalized patients still had symptoms after two months; a British study found similar trends. A German study that included many patients who recovered at home found that 78 percent had heart abnormalities after two or three months. A team from the Centers for Disease Control and Prevention found that a third of 270 nonhospitalized patients hadn’t returned to their usual state of health after two weeks. (For comparison, roughly 90 percent of people who get the flu recover within that time frame.)

These findings, though limited, are galling. They suggest that in the United States alone, which has more than 5 million confirmed COVID-19 cases, there are probably hundreds of thousands of long-haulers.

These people are still paying the price for early pandemic failures. Many long-haulers couldn’t get tested when they first fell sick, because such tests were scarce. Others were denied tests because their symptoms didn’t conform to a list we now know was incomplete. False negatives are more common as time wears on; when many long-haulers finally got tested weeks or months into their illness, the results were negative. On average, long-haulers who tested negative experienced the same set of symptoms as those who tested positive, which suggests that they truly do have COVID-19. But their negative result still hangs over them, shutting them out of research and treatments.

Several studies have found that most COVID-19 patients produce antibodies that recognize the new coronavirus, and that these molecules endure for months. Their presence should confirm whether a long-hauler was indeed infected. But there’s a catch: Most existing antibody studies focused on either hospitalized patients or those with mild symptoms and swift recoveries. By contrast, Putrino told me that in his survey of 1,400 long-haulers, two-thirds of those who have had antibody tests got negative results, even though their symptoms were consistent with COVID-19. Nichols, for example, tested negative for antibodies after twice testing positive for the coronavirus itself. “Just because you’re negative for antibodies doesn’t mean you didn’t have COVID-19,” Putrino said.

Organizations and governments have been slow to recognize what long-haulers call “long COVID.” In July, the U.K. allocated $11 million (£8.4 million) for research into the long-term consequences of COVID-19, but “to be eligible, you have to have been admitted into hospital,” says Trisha Greenhalgh, a primary-health-care professor at the University of Oxford. “That makes no sense.” Meanwhile, the CDC’s website still does not mention this phenomenon, and its list of symptoms barely reflects the full range of neurological problems. As late as June 25, the agency’s deputy director for infectious diseases said “we don’t yet know” whether COVID-19 “could persist for more than a few months.” By then, thousands of long-haulers already did know, and had been talking about it.

Without clear information from official sources, many long-haulers have found answers from one another. Support groups on Facebook have thousands of members. One Slack group, founded within a wellness organization called Body Politic, has almost doubled in size since June to more than 7,000 active participants from 25 countries. There are channels for discussing every organ system in the body. There are lists of sympathetic medical providers, and tips for convincing those who aren’t listening. Eerily, the group’s membership morphs as the pandemic spreads: “When Brazil had a huge spike, we had a massive influx of Brazilian patients,” said Nichols, who is an administrator.

The Body Politic group has its own team of researchers, whose survey of 640 long-haulers remains the most illuminating study of the long COVID experience. More than any formally published study, it cataloged the full range of symptoms, and explored problems with stigma and testing.

Many long-haulers start feeling better in their fourth or fifth month, but recovery is tentative, variable, and not guaranteed. Hannah Davis, an artist in New York City, still has fever, facial numbness, brain fog, and rapid heartbeats whenever she stands up, but she’s sleeping better, at least; at the end of July, she had her first relatively normal day since mid-March. Margot Gage, a social epidemiologist at Lamar University, has only now regained the ability to read without shooting pain, but still has debilitating headaches and fatigue. Hannah Wei, a product designer based in Ottawa who is a Body Politic researcher, has recovered from her neurological symptoms but not the scars the coronavirus left on her lungs. “Will I be living with this lasting damage, or will it eventually go away?” she says. “I don’t have the answers, and no one can tell me.”

The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief. Employers have told long-haulers that they couldn’t possibly be sick for that long. Friends and family members accused them of being lazy. Doctors refused to believe they had COVID-19. “Every specialist I saw—cardiologist, rheumatologist, dermatologist, neurologist—was wedded to this idea that ‘mild’ COVID-19 infections last two weeks,” says Angela Meriquez Vázquez, a children’s activist in Los Angeles. “In one of my first ER visits, I was referred for a psychiatric evaluation, even though my symptoms were of heart attack and stroke.”

This “medical gaslighting,” whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color. “Doctors not taking our conditions seriously is a common issue, and now we have COVID-19 on top of it,” says Gage, who is Black. When she sought medical help for her symptoms, doctors in two separate hospitals assumed she was having a drug overdose.

Such gaslighting still occurs, but has been reduced by the recent spate of media attention. Davis was stunned when she met with a cardiologist who used the term long-hauler without needing an explanation. Vázquez burst into tears after her new primary-care provider instantly believed her. “I went into that appointment armed with my notebook, ready to do battle,” she says. “Just having a doctor who believed that my symptoms were directly related to COVID-19 was transformative.”

Putrino, the Mount Sinai doctor, came to recognize long COVID on his own. Back in March, he realized that some patients who were referred to his hospital were in bad shape but weren’t sick enough to be admitted. His team created an app to keep track of these people remotely. By late May, they realized that “around 10 percent just weren’t getting better,” he told me. He has since started a program at Mount Sinai that’s dedicated to caring for long-haulers.

But such programs are still scarce, creating large geographical deserts where long-haulers cannot find help. Putrino cannot see patients who live outside New York State. Igor Koralnik, a neurologist at Northwestern Medicine who runs a similar operation, was booked solid through April 2021; he has since brought extra staff members so he could accept more patients. Canadian long-haulers “have just one clinic, in Toronto, and that’s it,” Wei says.

Putrino thinks that many long-haulers have symptoms that resemble dysautonomia. This is an umbrella term for disorders that disturb the autonomic nervous system, which controls bodily functions such as breathing, heart rate, blood pressure, and digestion. Damage to this system, whether inflicted by the virus itself or by an overly intense immune response, might explain why many long-haulers struggle for breath when their oxygen levels are normal, or have unsteady heartbeats when they aren’t feeling anxious. Things that were once automatic are now erratic.

More than 90 percent of long-haulers whom Putrino has worked with also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome. For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms.

These symptoms defeat intuitions that people have about work and rest, sickness and recovery. “You have to get away from this idea that you can do more each day, or that you can push through,” says Caroline Dalton of Sheffield Hallam University in England, who works for a COVID-19 rehabilitation program. Many long-haulers push themselves because they miss their lives, or need to return to work. But as her colleague Robert Copeland, a sport psychologist, explains, “managing your fatigue is now your full-time job.”

The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate. A nutritionist fashions personalized meal plans to compensate for any dietary deficiencies. A neuropsychologist—Gudrun Lange, who has long worked with ME/CFS patients and is helping the group pro bono—uses relaxation and somatic-awareness techniques to help long-haulers manage their feelings about their condition.

Putrino insists on seeing and caring for all the long-haulers that he can. His colleagues at Mount Sinai’s newly launched center for post-COVID-19 care have to follow guidelines that permit them to admit only patients with positive tests. Anyone the center can’t admit is referred to Putrino’s team, which also keeps in touch with the Body Politic group to track patients who fall through the cracks.

I asked him why he is so inclined to believe long-haulers when so many other medical professionals dismiss them. First, he said, “these people are telling us the same things over and over again.” But also, his wife has Ehlers-Danlos syndrome—a group of genetic disorders that affect the body’s connective tissues, and that commonly lead to dysautonomia. “I watched her go through the same thing: ‘You must have anxiety, or panic attacks, or every-excuse-under-the-sun,’” he told me. “Finally, after three years of searching, someone said, ‘Oh, you have dysautonomia and EDS.’ They put her on a treatment protocol, and she could live her life again.”

“If you listen to the population you’re trying to help, they’ll tell you what’s wrong,” he said.

Nichols is a few weeks away from meeting the CDC’s criteria for ME/CFS. She has post-exertional malaise. She has brain fog. On September 9, she’ll mark her sixth month of extreme fatigue. “Am I happy about it? No,” she said. “But I have to face reality. If this is what I have, this is what I have.” Lots of long-haulers are in the same boat. Many (but not all) cases of ME/CFS are triggered by viral infections, and new clusters have historically emerged after outbreaks. “When COVID-19 started to happen, I said to my husband, ‘Oh God, there’s going to be an avalanche of ME/CFS,’” Lange told me.

Some long-haulers are skeptical—and even angry—about the ME/CFS connection. They won’t countenance the prospect of being chronically disabled. They don’t want to be labeled with a condition that has long been trivialized. Nichols sympathizes; she used to trivialize it herself. “I falsely thought it was just people being too tired—and I feel terrible about that,” she said. Her plan is to use her imminent diagnosis as fuel for advocacy, “as a way of paying back the ME community for my disbelief.”

But COVID-19 is still a new disease, and ME/CFS is just one of several possible outcomes. Some long-haulers recover before the six-month threshold. Some don’t have post-exertional malaise. Some have lung damage and breathing problems that aren’t traditional ME/CFS symptoms. Some have symptoms that more closely fit with other chronic illnesses, including dysautonomia, fibromyalgia, or mast cell activation syndrome.

Putrino doesn’t want to assign any labels. “Let’s just start helping them,” he said, while simultaneously collecting data that will eventually show how much long COVID overlaps with other known syndromes. (Several other teams are conducting similar studies.) Even when symptoms such as fatigue are shared, their biological roots might differ—and those differences matter. Exercise might be devastating for someone with ME/CFS, but might benefit a patient with something else. Many long-haulers, meanwhile, are treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them. Vázquez, for example, was diagnosed with MCAS, and although it’s not a perfect match for her symptoms, “it’s close enough,” she says.

No matter the exact diagnosis, the COVID-19 pandemic will almost certainly create a substantial wave of chronically disabled people. It might be hard to ignore this cohort because of the sheer number of them, the intense attention commanded by the pandemic, and the stories from celebrities such as the actor Alyssa Milano and the journalist Chris Cuomo. Then again, they might face the same neglect that people with ME/CFS have long endured. “We’ve been demanding for decades that people do something,” says Terri Wilder, who has ME/CFS and is an activist with #MEAction. “I’ve met with [NIH Director] Francis Collins. I’ve called Tony Fauci, and state senators. We still have no FDA-approved drugs, no systems of care. We only have 10 to 15 ME/CFS medical experts in the country. We all want our lives back, and we want this broken system fixed.”

The uncertainty that long-haulers are experiencing results from that long-standing neglect. But so does the help they’re getting from people with chronic illnesses, who have already walked the same path. When the pandemic began, “it was like watching the roller coaster go up the hill, and only people like us knew that the track was broken,” says Alison Sbrana, who has ME/CFS and dysautonomia. She now spends her few productive weekly hours moderating the Body Politic support group. She has invited ME/CFS and dysautonomia specialists to give seminars, and has directed people to credible resources on aspects of disabled life, including care and benefits.

That frontier, in which long-haulers attempt to access social support, “is about to be a shit show,” Sbrana says. Some want their employers to make accommodations, such as reduced hours or long-term sick leave, so they can keep working at a time when their medical bills are mounting. Others cannot work, but are pressured to do so by bosses who don’t understand what long COVID is. “We keep seeing that people who don’t have a positive test result struggle to get paid time off work,” says Fiona Lowenstein, who founded Body Politic. Yet others “don’t want people to see them as complainers, push themselves, and then get sicker,” says Barbara Comerford, a New Jersey–based attorney who specializes in disability law and has represented many people with ME/CFS.

If they lose their jobs, “they’re in really bad shape,” she adds. Other sources of disability benefits and care, including private insurance and Social Security, are notoriously hard to access. Long-haulers would need to provide a history of being unable to do substantial gainful employment, and ample medical documentation of their disability to prove that it’s expected to last at least a year. Many have neither.

Being a long-hauler in August is very different from being one in February. The first wave, who were infected early in the year, endured months of solitude and confusion. While the national narrative shifted from physical distancing to reopenings, their realities were pinned in place by fever or fatigue. Many had no idea that others were going through the same ordeal. They wondered why they were still sick, or how long they’d be sick for. “We didn’t know what tomorrow would bring,” Nichols said.

Long-hauler support groups act as windows in time. In the Body Politic community, “the earliest person we know got sick in January,” Davis says. “She posts from the future, two months ahead of everyone else.” Conversely, as veteran long-haulers watch new generations pass the same monthly milestones, some are struck by a strange sense of solidarity, validation, and jealousy. The newer long-haulers already know what to call themselves, have bustling communities to learn from, and have better access to tests and medical care. The older ones are battle-worn and weary. “There’s something about having got sick in March and April that’s a unique experience, almost like post-traumatic stress disorder,” Vázquez says.

Throughout the pandemic, systemic failures have been portrayed as personal ones. Many people ignored catastrophic governmental choices that allowed the coronavirus to spread unchecked, and instead castigated individuals for going to beaches or wearing masks incorrectly. So, too, with recovery. The act of getting better is frequently framed as a battle between person and pathogen, ignoring everything else that sways the outcome of that conflict—the disregard from doctors and the sympathy from strangers, the choices of policy makers and the narratives of journalists. Nothing about COVID-19 exists in a social vacuum. If people are to recover, “you have to create the conditions in which they can recover,” Copeland, the sport psychologist from Sheffield Hallam, says.

If those conditions don’t exist, they can be at least partly willed into existence. Here, too, the long-hauler story is a microcosm of the pandemic. In the U.S., citizens chose to physically distance themselves, take precautions, and wear masks long before leaders urged or ordered them to do so. Likewise, the long-haulers have taken matters into their own hands, pushing for respect, research, and support when none were offered.

But such effort comes at a cost. Long-haulers are precariously perched on a physiological precipice—a difficult position from which to fight for their future. “A lot of people who don’t have the energy to educate the world are educating the world,” Nichols said.

 

 

 

When COVID infection becomes a chronic disease

Posted on by • Posted in Asymptomatic Transmission, Chronic Care Management, Chronic Conditions, Chronic Diseases, Chronic Fatigue, Coronavirus, Economic Crisis, Infection Control, Infection Control Plan, Infectious Virus, Mortality, Pandemic, Post-Covid Care, Post-Covid Syndrome, Public Health, Public Safety, Quarantine, School Reopening, Scientists, Social Distancing • Leave a comment

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Long COVID-19' a reality; 75 per cent patients suffer from ...

The minimal evidence of serious impact of COVID infection on young healthy individuals has been one of the bright spots of this pandemic. Overall, only a small percentage of those infected, mostly the elderly or those with pre-existing conditions, get very sick, and an even smaller number die.

But a new piece in The Atlantic lays out mounting evidence that many younger patients don’t spring back to good health after a few weeks, as common wisdom suggests; instead, they experience debilitating long-term effects, months after infection. The profile of the average patient with “Long-COVID” is just 44 years old, and previously fit and healthy.

She (the condition is much more common in women) likely suffered a mild initial infection. But now, months later, she still faces a wide range of symptoms. Some patients have significant chronic pulmonary or cardiac function abnormalities (like Georgia State’s star freshman quarterback recruit, sidelined for the year with post-COVID myocarditis).

But others are dealing with a different, but just as debilitating, set of symptoms resembling chronic fatigue syndrome (CFS).

And like CFS patients, many COVID “long-haulers” find their symptoms minimized by their doctors. Early studies show that large numbers of patients may be affected: in a series of 270 non-hospitalized patients, the CDC found a full third hadn’t returned to their usual health after two weeks (as compared to just 10 percent of influenza patients).

A handful of centers have taken the first step toward better understanding “Long-COVID”, establishing dedicated clinics to study and treat the growing number of patients for whom COVID-19 is turning out to be a chronic disease, leaving a wave of people with long-term disabilities in its wake.