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What the Long Covid Numbers Aren’t Telling Us

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Nearly two years ago, as the first confirmed Covid-19 cases in the United State began trickling in, before scientists understood how SARS-CoV-2 affected and infected humans, numbers were all we had. Our grasp on the magnitude of what was becoming a global pandemic came from state and national statistics, like the numbers of new Covid-19 cases, hospitalizations, and deaths. 

Not long after, in spring of 2020, some of the first people diagnosed with Covid-19 began speaking publicly about how their symptoms lasted longer than the two weeks public health experts said was the standard duration of infection. Since then, they — along with estimates of millions of other Americans living with Long Covid — have been met with disbelief from family members, employers, and the medical profession, and constant requests to prove that they are legitimately sick. 

Because numbers have been integral to people’s understanding of the severity of the pandemic since it began, it’s not surprising that Long Covid skeptics often ask questions about how many people “actually” have the condition, and what percentage of people with Covid-19 end up with Long Covid. 

At the moment, there are statistics that appear to answer these questions, most of which indicate that between 10 and 30 percent of people who get Covid-19 end up with Long Covid. But these are only estimates emerging from academic research and referenced in news coverage — not the kind of population-level data that exists for other conditions, and that people expect to be readily available for Long Covid. In fact, those statistics are likely still years away.

One of the main reasons coming up with definitive Long Covid statistics is such a lengthy process is the same reason the current estimates are frequently misunderstood: Long Covid has yet to be adequately defined. And while the broad, vague definitions from organizations like the Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) were a necessary step in the recognition of Long Covid as a legitimate medical condition, in reality, Long Covid encompasses multiple categories of patients with vastly different symptoms, experiences, and outcomes. 

Here’s what to keep in mind about the current numbers — including why estimates range so widely — as well as what needs to be done in order to get population-level statistics.

The type of Long Covid statistics people expect are the kind that result from large-scale studies conducted by the National Institutes of Health (NIH) that follow a group of people over a long period of time, says Natalie Lambert, PhD, a biostatistician and associate research professor of biostatistics and health data sciences at the Indiana University of School of Medicine. In this case, she says, that would involve enrolling participants when they test positive for Covid-19 and keeping track of their health long after — even if they don’t immediately develop Long Covid. “That’s the gold standard, but those tests take a very long time,” Lambert tells Rolling Stone

As new research on Long Covid is published, it’s important to keep in mind that the studies were conducted with the populations and knowledge that were available at a particular time — and not necessarily with the aim of coming up with national Long Covid statistics. Early on, physicians and researchers were trying to learn whatever they could about this new type of post-viral illness, and at times, that meant working with a narrow sample of participants — like ones who had been hospitalized, for example. 

“But that’s leaving out the majority of people [with Long Covid] who don’t end up in the hospital,” Lambert explains. “We could try to do better by trying to follow up with people who went to their primary care provider and seeing how many of them became long-haulers, but most of them aren’t going to the doctor.”

Although the current definitions of Long Covid are incredibly broad, before they existed, there was even less certainty about what “counted” as Long Covid among patients, researchers, and medical professionals. “Long Covid means different things to different people,” says Jaime Seltzer, director of medical and scientific outreach for #MEAction, an advocacy organization for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — including the estimated 10 to 12 percent of those with Long Covid who will develop the condition. “Studies are measuring Long Covid at different intervals and capturing different populations within Long Covid, which may explain the discrepancy in the statistics.” 

For example, a study that includes a large number of people who were hospitalized, may be capturing a segment of people who are dealing with post-intensive care syndrome, Seltzer explains. Or, data gathered soon after a person’s acute Covid-19 infection may identify people with post-viral fatigue that is recoverable, while missing people who develop ME/CFS months later. 

Lambert estimates that it will take years to get accurate and reliable population-level data on Long Covid, but notes that “the more funding there is, and the more researchers that can be involved, the faster we’ll have the answers.” And before anything else, she says, Long Covid needs to be defined.

Nearly a year into the pandemic, David C. Lee, MD, began noticing a new subset of patients in the emergency department of NYU Langone Health. Their symptoms ranged from chest pain with shortness of breath, to abdominal pain, to one or more abnormal skin problems, and either started, or never went away after they had Covid-19. But in early 2021, what stood out the most to Lee, who is also an assistant professor at NYU School of Medicine, was that “the overwhelming majority of patients had already seen several doctors, often including multiple specialists,” he tells Rolling Stone.

Treating Long Covid patients who came to the ER, Lee also saw that the chronic condition isn’t equally debilitating for everyone. “There is varying severity of these persistent symptoms from person-to-person,” he explains. “Some people are completely disabled and have been sick since 2020, but then there are a lot of people who don’t have it as badly.”

And while the lack of a clear definition of Long Covid makes getting accurate statistics a challenge, Lee points out that’s to be expected when dealing with an illness that’s been around for fewer than two years, and isn’t something that should be rushed. “For a new condition like Long Covid, we need to be careful about deciding what it is or isn’t before we have all the evidence worked out,” he says.

For context, the WHO’s definition of Long Covid (announced in October 2021) — which the organization refers to as “Post-Covid-19 Condition” — notes that it typically begins around three months after the onset of a Covid-19 infection, lasts at least two months, and can’t be explained by another diagnosis. And while the CDC provides a similarly broad introduction to Long Covid on its website, it goes on to identify three types of “post-Covid conditions”: new or ongoing symptoms; multi-organ effects of Covid-19; and effects of Covid-19 illness or hospitalization. 

While breaking Long Covid down into categories, rather than approaching it as a catch-all condition, is an important (and necessary) step towards defining the condition — and ultimately, getting closer to accurate Long Covid statistics — it has yet to be seen whether this will change the underwhelming approach the CDC and government have taken so far.

When Lambert partnered with Survivor Corps, an online support group for people with Long Covid, in April 2020 and began researching Long Covid, she and her colleagues essentially had to start from scratch. “At the very beginning, we were interested in talking to people that had Covid, and two months later still had not recovered,” she explains. “We asked them about their symptoms to get a basic understanding. However, not recovering from something isn’t a good definition of a disease.”

This is something that as a biostatistician, Lambert knows from experience. “To do a rigorous scientific study where you’re studying a population of people who have a disease, you first have to define the population,” she explains. “And you can’t say how many people have Long Covid unless you know that whatever sample of people you ask about their recovery or non-recovery after infection is representative of everyone who got Covid.”

In order to identify someone who has a disease (as well as someone who doesn’t), scientists first need to fully understand that condition, its characteristics, and the mechanisms of how it occurs, Lambert says. But much of the research into the various symptoms that can continue or begin after a Covid-19 infection is either underway, or has yet to start — meaning that the deep understanding of Long Covid necessary to define it is still a way off. For now, though, thinking of Long Covid split into distinct categories, like the ones researchers have proposed and the CDC lists, can help provide a clearer picture of what the chronic condition entails, and how it affects people differently.

And unlike many diseases, there’s no clear signal, like a diagnostic lab test, that is seen as sufficient evidence that a person has Long Covid. Plus, as Seltzer explains, when there aren’t clear diagnostic tools and/or adequate medical knowledge on a condition, “stigma takes a stranglehold on moving the field forward,” she notes. “Instead of medical providers showing uncertainty, they misdiagnose the patient as having a psychiatric disorder like depression, anxiety or conversion disorder, or dismiss the patient entirely as attention-seeking.” 

Given that, as Lambert points out, “our cultural mindset about health is that we have to prove we’re sick,” not having statistics on how many people are living with Long Covid makes the task of getting people to believe the condition exists even harder.

Long Covid has a numbers problem — but not necessarily the one most people think. For those who have been following the trajectory and gauging the severity of the Covid-19 pandemic through daily reports of the new cases and infection rate in their area, not having a definitive Long Covid statistic may be frustrating, or make it easy to simply dismiss the condition.

But what if part of the problem is the weight given to Long Covid numbers, and the pervasive idea that population-level statistics are the only legitimate way not only to study a condition, but even prove that it exists? 

“I think we need to go to the other end of the spectrum, talking directly with as many patients as possible to learn about their range of experiences in detail, and using that [knowledge] to help  inform clinical studies,” Lambert explains, noting that this would ensure that researchers are asking the right questions, as well as considering factors like stress levels, environment, and other social determinants of health. “There are many different fields of research that do incredible work that is valid and trustworthy, and many methods of inquiry that can find really important patterns about the world that are very useful to us. And we need all hands on deck.”

This isn’t to say that having accurate, reliable Long Covid statistics resulting from robust, longitudinal clinical studies isn’t important. But a lack of these numbers shouldn’t be used as an excuse not to take Long Covid — and the people living with the condition — seriously. 

“At the end of the day, we need to listen to patients better, help them in the ways that we can, and keep searching for better treatment options,” Lee says. “Each person affected [by Long Covid] is meaningful, and maybe the statistics don’t matter as much as the individuals do.”

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‘My Daughter Had a Life’: Family of Lauren Smith-Fields Protest on What Would Have Been Her 24th Birthday

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What would’ve been Lauren Smith-Fields’ 24th birthday celebration was instead a day of protest to demand answers and justice in her mysterious death. Today, approximately 100 family, friends, and activists gathered together in front of the Bridgeport, Connecticut, police department to march to the Margaret E. Morton Government Center, where they chanted “Happy Birthday, Lauren” and “Black Women Matter.” 

“My daughter was a daddy’s girl,” Smith-Fields’ father, Everett Smith, said to the crowd. “To lose your daughter, your only daughter, your baby girl at the ripe age of 23 years old and to be treated the way we were treated by the Bridgeport police department is unacceptable. My daughter had a life, she traveled the world, she went to college and did tutorials on how to do hair and nails. She had a voice and that voice was stripped and the Bridgeport police station ain’t doing shit about it.” 

On Dec. 12, following a Bumble date at her apartment, Smith-Fields was found unresponsive by a white man named Matthew Lafountain. Lafountain called police, reporting that Smith-Fields was unresponsive and had been bleeding from her nose. Smith-Field’s family — who learned of her death days later, after finding a note from the landlord on the door — found a used condom with semen and an unidentified pill in her apartment. They still have not received answers regarding her cause of death and describe communication with detectives as unprofessional and scarce. (Lafountain has not been charged with any crimes, and is not a suspect in the case. Rolling Stone has been unable to reach him for comment.)

The family is demanding answers from Bridgeport Police Department and are upset that they have not heard from city officials regarding the circumstances of Smith-Fields’ death. They also want an apology. The family says their frustration is rooted in the fact that the last person who saw Smith-Fields, Lafountain, was let go without further questioning and or investigation from police. They say the officers on the case have not been responding to their phone calls, and didn’t adequately examine evidence found at the scene of their daughter’s death. As of Friday, the family’s lawyer Darnell Crosland issued a letter to the Bridgeport City Clerk regarding their intent to sue. 

“The police department has been racially insensitive to this family and has treated this family with no respect and has violated their civil rights,” wrote Crosland. “They have failed to investigate this matter, and they refuse to view the last person with Lauren Smith-Fields before she died as a person of interest. This behavior is unacceptable.”

Bridgeport Police Department has not responded to multiple requests for comment from Rolling Stone, but has previously issued a statement to NBC News: This investigation remains open and active. The Detective Bureau is awaiting the final report from the Chief Medical Examiner’s Office for cause and manner of death of Ms. Smith-Fields. The Bridgeport Police Department offers it’s sincerest condolences to the family and friends of Ms. Lauren Smith-Fields. We encourage anyone with information regarding this incident to contact either Detective-Sergeant Joseph Morales at 203-581-5219 or the Bridgeport Police TIPS line at 203-576-8477.”

Another family at the protest — that of Brenda Lee Rawls, 53, who died the same weekend as Smith-Fields — claim they were met with indifference by the Bridgeport PD after the untimely loss of a loved one. 

“They treated my sister like a Jane Doe, like they found her on the side of the road with no identification,” said Dorothy Washington, Rawls’s sister. Similar to the Smith-Fields’ family, Rawls’s family say they received no notice or help from the Bridgeport police department. 

“My family is very close and we don’t go a day without talking to each other. The last day we talked to Brenda was on Dec. 11,” Washington said. “On the 12th, she said she was going to a friend’s home to visit after that, we heard nothing from her.” 

After days of calling and texting, the sister went to the man’s home that Rawls said she was visiting. “The guy said ‘Brenda? Oh, she died Sunday,’” said Washington. “‘A police officer and one coroner came to pick her up.’ My family called the hospitals, the police department and they knew nothing about her death.” 

It wasn’t until the family contacted the Farmington Connecticut State Medical Examiner, that they found out where she was. Rawrs died Sunday and the family says they were informed on Tuesday. By the time they were aware, an autopsy had been conducted. 

“They never called us for identification,” said Washington. “We went down there on Friday of that week and the guy at the window gave us the wrong detective’s name. That detective called me back and gave me the right detective’s name. They never started on the investigation. They never quarantined that guy’s house or questioned him. Never quarantined my sister’s apartment. I called [the detective] four or five times, he never reached out.” (Bridgeport PD did not immediately respond to a request for comment.) 

Smith-Fields’ mother wants to create a bill in Smith-Fields’ name that will create police accountability and for families to be notified within 24 hours of the death of a loved one. 

Following the protest, Smith-Fields family and friends who were dressed in her favorite color, pink, released pink balloons into the sky as a celebration for her birthday. The crowd was then invited for cake at a local restaurant in the area. 

“Today would’ve been her 24th birthday. In a couple of days she would have been leaving to go to Greece to celebrate but now that was taken away from her,” said her mother, Shantell Fields. “No one is going to disparage my daughter like she’s rubbish.”

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Fashion Designer Thierry Mugler Dead at 73

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Thierry Mugler
French Fashion Designer Dead at 73

1/23/2022 3:29 PM PT

Thierry Mugler — an iconic French fashion designer — has died … this according to his team.

An Instagram on Mugler’s official page went up Sunday with the tragic news. It was a photo of nothing but a blank square, with the caption … “#RIP We are devastated to announce the passing of Mr Manfred Thierry Mugler on Sunday January 23rd 2022. May his soul Rest In Peace.” The same message was repeated in French as well.

Waiting for your permission to load the Instagram Media.

No word on a cause of death, but his passing sees sudden and unexpected — as he didn’t appear to be ill or battling any known ailments.

As you can imagine, the tributes started to pour almost instantly … especially from folks in the fashion world, who knew Mugler well from his decades-long work and influence in the industry.

It goes without saying … Mugler has dressed some of the biggest names in the game, including Kim Kardashian — whom he actually graced with an outfit of his during the 2019 Met Gala, this after he’d officially retired — plus a plethora of other models and stars.

His extravagant designs have been fan-faves among celebs like Lady Gaga, Cardi B, Jerry Hall, Beyonce, Katy Perry, Rihanna, David Bowie, George Michael, Linda Evangelista, Demi Moore, Megan Fox, Miley Cyrus, Madonna, Cindy Crawford, Tyra Banks, Sharon Stone, Diana Ross, Nicole Kidman, Reese Witherspoon, Robin Wright, Bella Hadid … and many others.

All of them have donned Mugler-designed getups at one point or another, be it on the red carpet, on the runway … or on stage. The guy’s work touched at least 3 different decades of fashion — and he was absolutely beloved among Hollywood’s finest.

In addition to his clothing contributions, Mugler also left his mark in the fragrance biz … with a diverse line of perfumes that are still best sellers to this day.

He was 73.

RIP

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O.J. Simpson Hits Florida Bar to Catch NFL Playoff Game, Post-Parole

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The Juice is Loose in FL, Post-Parole …
Watching TB Get Clobbered

1/23/2022 3:04 PM PT

O.J. Simpson‘s post-parole life is starting out in the Sunshine State, it seems, because there’s been a Juice sighting in Florida … and wouldn’t you know it, the guy’s at a bar!

The disgraced NFL-er caught the Bucs-Rams matchup Sunday at a place called Bo’s Pub in Ft. Lauderdale … where he was taking in the game, and apparently some drinks too. In photos obtained by TMZ, you see O.J. chillin’ near a group of folks and having a good time.

We’re told O.J. appeared to be with these people — so he wasn’t just randomly there lone-wolfing it. And, per usual, he was getting recognized and approached for photos and the like … which eyewitnesses say he was happy to accommodate.

It actually looks like a young group of ladies might’ve been ooh-ing and ah-ing over O.J. as well — as one pic shows them near his crew, and O.J. not too far with a big grin on his face.

No shock here that O.J.’s keeping up with football — we know he likes to comment on the state of the game and standout moments during the season … including Antonio Brown‘s ungraceful exit from the Buccaneers franchise.

So yea, the fact he’s peeping a big game in public might not be too much of a news flash.

What is interesting, however, is the fact that this seems to be one of the first public outings O.J.’s had since being released early from his parole in Nevada — where he’s been confined for the better part of 5  years now … following his release from prison in 2017.

At least he’s far away from California … where we know he’s not all that welcome, especially from the Brown family.

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