Post-COVID Clinics / Long Haulers

This forum is to discuss general things concerning TSOI.
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

For Covid ‘Long Haulers,’ Battling for Disability Benefits Adds Aggravation to Exhaustion

3/10/21


https://khn.org/news/article/for-covid- ... xhaustion/


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

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

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

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

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

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

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster. Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

“Most are people calling to say, ‘I thought I could do it. I can’t. My mind doesn’t function for more than really brief periods of time,’” Comerford said. She gave a presentation to the New Jersey State Bar Association in mid-February on how to develop evidence for such cases.

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I knew all of it was completely exhausting, so it wasn’t something I thought I could do on my own,” Andersen said.
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Long Covid isn’t as unique as we thought

The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine.

3/11/21


https://www.vox.com/22298751/long-term- ... r-symptoms


Dr. Craig Spencer, an emergency room doctor in New York City, was no stranger to dangerous viruses when a brush with one landed him in Bellevue Hospital for 19 days. But it was only after he was discharged, and declared virus-free, that the really bizarre symptoms set in.

Back at home, he noticed he couldn’t taste anything for several days. For months, he was tired all the time and his joints felt heavy and painful. When he woke up in the morning, his back was “stiff like a bamboo rod.” His weight dropped, and clumps of hair fell out. Though the physical effects eventually faded, cognitive complications persist to this day — what he describes as “a subtle but noticeable difference in concentration and ability to form new memories.”

If Spencer’s constellation of ongoing symptoms — fatigue, muscle and joint pain, memory issues — sounds familiar, it’s because it has become a frightening feature of some coronavirus infections, an epidemic of long-term illness within the pandemic. For the Covid-19 “long-haulers,” symptoms can persist for weeks or even months, long after being discharged from the hospital or testing positive for the virus, if they even saw a doctor or got diagnosed at all.

But Spencer never had Covid-19. His persistent aches, pains, and memory problems arose after contracting Ebola in late 2014, when he was working with Doctors Without Borders in Guéckédou, Guinea, the epicenter of the West Africa Ebola epidemic. The experience led him to join the growing chorus of health professionals, patient advocates, and researchers who argue we need to reframe how we think about coronavirus long-haulers.

The dominant narrative about long Covid has been that it’s a uniquely perplexing feature of Covid-19. Reports of “Covid brain fog” or “Covid dementia,” for example, suggest a disturbing and extraordinary ability of the coronavirus to destroy the lives of survivors. Even a year later, some patients are still struggling to return to work or have their illness recognized, let alone access disability benefits.

While there’s no doubt long Covid is a real condition worthy of diagnosis and treatment, “this isn’t unique to Covid,” Akiko Iwasaki, an immunologist at the Yale School of Medicine, said. Covid-19 appears to be one of many infections, from Ebola to strep throat, that can give rise to stubbornly persistent symptoms in an unlucky subset of patients. “If Covid didn’t cause chronic symptoms to occur in some people,” PolyBio Research Foundation microbiologist Amy Proal told Vox, “it would be the only virus that didn’t do that.”

Even with growing awareness about long Covid, patients with chronic “medically unexplained” symptoms — that don’t correspond to problematic blood tests or imaging — are still too often minimized and dismissed by health professionals. It’s a frustrating blind spot in health care, but one that can’t be as easily ignored with so many new patients entering this category, said Megan Hosey, assistant professor at the Johns Hopkins Department of Physical Medicine and Rehabilitation.

“It has always been [and] is the case that patients who get sick experience high levels of symptoms like those described by long-Covid patients,” she said. “We have just done a terrible job of acknowledging [and] treating them.”

Doctors have noticed long-term illnesses after an infection since at least 1889

For a while after the coronavirus began spreading in China in late 2019, many doctors viewed it as a “viral pneumonia” that mainly threatened the lives of elderly people. The virus seemed to cause only a short list of symptoms, including fever, dry cough, and difficulty breathing. According to a February 2020 World Health Organization report, mild cases recovered within two weeks, while it took up to six weeks for those with severe or life-threatening illness to get better.

By March, patients on social media started drawing attention to a longer list of persistent symptoms, which sometimes appeared after mild cases in young, otherwise healthy people. In April, Fiona Lowenstein, a Covid-19 advocate and founder of the long-Covid support group Body Politic, penned one of the first widely circulated long hauler accounts, sharing her experience of symptoms like gastrointestinal issues and loss of smell. The 27-year-old presciently warned that a “wave of chronically ill and slow-healing survivors is an inevitability we can and must prepare ourselves for.”

Today, doctors are more aware that Covid-19 can affect every system in the body. There’s still no official name for long Covid — which also goes by chronic Covid syndrome, post-Covid-19 syndrome, and post-acute Covid-19. There’s also no official medical definition. Researchers generally use time to make a diagnosis: patients who experience at least three or four weeks of symptoms that develop during or following a confirmed or suspected coronavirus infection.

What is now coming into focus: the true spectrum of long-Covid symptoms. A recent preprint (non-peer-reviewed) paper, from a Covid-19 patient-led research collaborative, surveyed 3,762 patients from 56 countries who were sick for at least four weeks. They documented an array of 205 symptoms involving 10 organ systems, from tremors, tingling and skin burning, to sleep disturbances, nausea, chest tightness, and hearing loss.

Most common were fatigue, cognitive dysfunction, and post-exertional malaise, defined as a “worsening or relapse of symptoms after physical or mental activity” during Covid-19 recovery. More than 90 percent of those in the study hadn’t been admitted to a hospital. Most (nearly 80 percent) were women. One in five reported severe symptoms persisting after six months.

The nagging symptoms, though unnerving, aren’t unprecedented. Chronic symptoms, especially fatigue, have lingered after the typical recovery periods for viruses as varied as West Nile, Polio, Dengue, Zika, seasonal flu, and H1N1 as well as the new coronavirus’s cousins MERS and SARS-1. Run-of-the-mill strep throat can develop into rheumatic fever, which causes similarly painful and stubborn after-effects as long Covid. While reporting this story, I realized I was once a long hauler. I lost a summer in college to mononucleosis, caused by the Epstein-Barr virus; for weeks, I had no appetite and could hardly muster the energy to get out of bed.

The phenomenon, sometimes called “post-viral syndrome,” has been documented for more than a century, as far back as the 1918 Spanish flu, when there were Spanish flu long-haulers — scores of people who survived the deadly virus but had long-term symptoms, including depression, sleeplessness, “loss of muscular energy,” and “nervous complications.”

Even “Covid dementia” isn’t really new: According to a recent historical review, early reports of the “common symptom of altered cognition” surfaced during the Russian flu pandemics of 1889 and 1892.

“I can’t find a single thing that the SARS-CoV-2 virus can do, that other viruses cannot,” Proal said. “It’s well understood and it’s been understood for decades that every major pathogen capable of infecting people has a syndrome associated with it in which a certain number of patients who get that pathogen,” she continued, “will develop chronic symptoms that never go away.”

The Ebola long-hauler, Craig Spencer, only began to contemplate this pattern after the initial pandemic emergency in his New York City hospital abated late last spring. No longer filled to capacity, a broader spectrum of patients — not just the deathly ill — started seeking care.

The “tide reced[ed] and you’re there to observe the damage,” he told me recently. “I saw a lot of people saying they’d been to a bunch of different doctors. They know they had Covid. [The doctors told them] they didn’t know how to help them or that it was all in their head and that they probably needed to see a psychiatrist.”

In September, Spencer wrote about the parallels between his experience with long-haul Ebola and what he was hearing from these Covid-19 patients. “That’s when I started recognizing that this toll was going to be a lot bigger than anyone had recognized,” he said.

The wave of patients is still growing. Of the more than 118 million coronavirus cases around the world, at least 10 percent of those affected may have long-term symptoms. That means that in the US alone, there could already be 3 million long-haulers — nearly six times the official US Covid-19 death toll. With numbers this large, Spencer said, maybe those with other little-understood chronic conditions, who have been “cast aside or undermined, disbelieved by the medical community” for decades, will finally get the recognition they’ve been waiting for.

It’s not just viruses that can trigger long-haul illnesses

Myalgic encephalomyelitis/chronic fatigue syndrome is one of those persistently under-recognized, underfunded, chronic conditions. ME/CFS, as it’s known, afflicts up to 2.5 million Americans every year, mostly women, with persistent symptoms ranging from fatigue and dizziness to sore throat and muscle pain. Recently, ME/CFS patients and their doctors have been pointing to the overlap with long Covid, conditions that US health official Anthony Fauci has called “very strikingly similar.”

Diagnoses of ME/CFS are made on the basis of symptoms, and some long-Covid patients meet the diagnostic criteria for the syndrome. Post-exertional malaise, for example, is considered “the cardinal symptom” of ME/CFS, said Jaime Seltzer, director of scientific and medical outreach at the ME/CFS advocacy group ME Action. It’s also something nearly 75 percent of long-Covid patients reported in the recent long-hauler preprint. In another recent paper, researchers called on physicians to familiarize themselves with ME/CFS as the pandemic could “at least double” the number of cases.

There’s debate about what causes ME/CFS. The dominant view among researchers is that it’s a genetic disease triggered by an immunological stressor, like a viral infection. A 2006 study followed 253 patients who’d been diagnosed with Epstein-Barr virus (the cause of mono), Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis) for a year and found 12 percent were diagnosed with ME/CFS within six months.

Post-viral syndrome and ME/CFS also parallel other contested and little-understood chronic disorders, including chronic Lyme disease, which is thought to occur after infection with the tick-borne Borrelia bacterium. Johns Hopkins’s Megan Hosey opened the long-haul umbrella even wider, beyond viruses and bacteria, to illnesses like cancer, multiple sclerosis, Type 1 and 2 diabetes, and lupus.

“A proportion — usually around 30 percent — of survivors of any medical condition report high rates of fatigue, sleep disturbance, brain fog, pain, depression, and anxiety that interfere with their ability to live fully,” she said. Diseases like cancer and Covid-19 may have different causes, but they share something in common when symptoms persist: If doctors can’t find a biological explanation for what’s troubling their patients, patients have trouble being believed. “I think a lot of patients [feel], ‘This physician doesn’t get it,’ or, ‘This physician thinks it’s all in my head.’”

The idea that long-Covid symptoms have a psychological basis came up at a recent research meeting Proal attended. A colleague noted the fact that more women than men present with the condition. “[What] was really thrown out as one of the top scenarios: Women are very anxious,” Proal recalls. Researchers who’ve investigated psychiatric and psychosomatic triggers for chronic conditions like ME/CFS, for example, haven’t found a consistent link. “So maybe that really would not be the first direction you would go in with long Covid. ... These are biological diseases driven by biological causes and they really don’t seem to be diseases of the psyche.”

Other chronic illnesses make long Covid less mysterious

Seeing long Covid in this context makes the condition less mysterious. Other long-haul illnesses also shed light on what might be sickening coronavirus long-haulers.

We’ve learned from other viral infections that, in some cases, pathogens do not fully clear the body. “It’s out of the blood but gets into tissue in a low level — the gut, even maybe the brain in some people who are really sick — and you have a reservoir of the virus that remains,” Proal explained. “And that drives a lot of inflammation and symptoms.”

These reservoirs have been documented following infections with many other pathogens. During the 2014-2016 Ebola epidemic, studies emerged showing the Ebola virus could linger in the eye and semen. There were similar findings during the 2015-2016 Zika epidemic when health officials warned about the possibility that Zika could be sexually transmitted. (Viral reservoirs are why the moniker “post-viral” can be problematic, Proal added.)

A related explanation for what might be happening with long-Covid patients is what Yale’s Iwasaki calls “viral ghosts.” While the intact virus may have left the body, “there may be RNA and protein from the virus that’s lingering and continuing to stimulate the immune system,” Iwasaki said. “It’s almost like having a chronic viral infection — it keeps stimulating the immune system because the virus or viral components are still there, and the body doesn’t know how to shut it off.”

Recent studies in Nature and The Lancet documented coronavirus RNA and protein in a variety of body systems, including the gastrointestinal tract and brain.

In autopsies of people with chronic fatigue syndrome, researchers have also found enterovirus RNA and proteins in patients’ brains, including, in one case, in the brain stem region. The brain stem controls sleep cycles, autonomic function (the largely unconscious system driving bodily functions, such as digestion, blood pressure, and heart rate), and the flu-like symptoms we develop in response to inflammation and injury. “If that area of the brain signaling becomes dysregulated [by viruses],” Proal said, “[that] can result in sets of symptoms that meet a diagnostic criteria for [chronic fatigue syndrome], or even for long Covid.”

Other pathogens already lurking in the body prior to a coronavirus infection might also exacerbate symptoms. For example, viruses in the herpes family — such as Epstein-Barr (the cause of mono) or varicella zoster (the cause of chickenpox and shingles) — stay dormant in the body forever. Under normal conditions, the immune system can keep them in check. But when we’re under stress or fighting off another disease, the herpes viruses may activate again. In this case, part of what’s causing the long-Covid symptoms could be the body’s immune response to non-coronavirus pathogens that have reawakened.

Another key hypothesis: Long-Covid patients have developed an autoimmune disorder. The virus interrupts normal immune function, causing it to misfire, so that the molecules that normally target foreign invaders — like viruses — turn on the body itself. These “rogue antibodies,” known as autoantibodies, “attack either elements of the body’s immune defences or specific proteins in organs such as the heart,” according to Nature. The assault is thought to be distinct from cytokine storm, an acute immune system disorder that appeared as a potential threat early on in the pandemic.

For coronavirus patients who had to be admitted to intensive care units, there’s yet another explanation: Long before the pandemic, the intensive care community coined a term for the persistent symptoms people frequently experience following stays in an ICU for any reason, from cancer to tuberculosis. These symptoms included muscle weakness, brain fog, sleep disturbances, and depression.

The term “post-intensive care syndrome” was “created to raise awareness and education, because so many of our ICU survivors were going to their primary care doctor saying they were fatigued,” said Dale Needham, who has been treating Covid-19 patients in the ICU at Johns Hopkins. “They had trouble remembering, and they were weak. Their primary care doctor would do some lab tests and say, ‘Oh, there’s nothing wrong with you.’ The patient might walk away and feel like the doctor was saying, ‘It’s all in your head. You’re making it up.’”

The Covid-19-inspired medical revolution


Needham was getting at something I heard again and again from the many patients, researchers, and health professionals I spoke to for this story: If long Covid changes anything, it has to be this knee-jerk reaction in medicine to discount and give up on patients with symptoms that have no identifiable biological basis. The experience is so pervasive that researchers at the Mayo Clinic in Minnesota gave it a name: “undercared-for chronic suffering.”

There are certainly many systemic explanations for under care — from a lack of access to health care or medical insurance to the mere minutes that now characterize the length of the average medical appointment. But it’s also true that something more basic is exacerbating the problem. Simply put, medicine hasn’t cracked how to deal with patients who have chronic syndromes, like ME/CFS or long Covid, that don’t have one-size-fits-all treatment regimens.

People “want disease to kill you, or they want you to return to miraculous good health,” said Seltzer. “When you stay sick, compassion can fade. And that is not just friends and family. That is your clinicians as well; they want somebody fixable.”

Instead, long-haulers of any chronic condition can exist in a space between sickness and health for years, sometimes without a diagnosis. Their unexplainable symptoms can elicit skepticism in health professionals, Proal said, who are trained to consider patient feedback the “lowest form of evidence on [the evidence hierarchy], even under research on mice.”

With wartime levels of long-Covid patients now flooding health systems around the world, “it’s time for medicine to be rooted in just believing the patient,” Proal added. And not only believing patients, but also acknowledging and having compassion for the uncertainty they’re facing, Hosey said. Even without understanding the cause of someone’s suffering, “We can immediately start talking about treatment of symptoms and returning to life that’s full and meaningful because I think that that’s really what patients are asking for in the long run.”

This means doctors partnering with experts in other disciplines, such as rehabilitation psychologists or physical therapists, to tackle the unique problems a patient is experiencing.

It also means tailoring treatment. “It would be silly to assume that every patient that gets [long Covid] label has the exact same thing going on,” Proal said. For example, some long-Covid patients may have an ongoing infection while others, lung damage. The first group might benefit from “pacing,” a concept borrowed from the ME/CFS community that advises patients to listen to their bodies and avoid over-exerting themselves. The second group might benefit from physical therapy.

For now, many long-haulers report being gaslit and disregarded by medical professionals, especially if they don’t have a positive PCR test confirming the diagnosis. Of the dozens of medical appointments one Covid-19 long-hauler, Hannah Davis, had for her persistent symptoms — which include memory loss, muscle and joint pain, and headaches a year after her initial disease — one of her best experiences involved a doctor who simply said, “I don’t know.”

“The doctor [told me], ‘We are seeing hundreds of people like you with neurological symptoms. Unfortunately, we don’t know how to treat this yet. We don’t even understand what’s going on yet. But just know you’re not alone,’” she recounted. “And that’s the kind of conversation that needs to be happening. Because we can wait, but we can’t have the doctor’s anxiety being projected onto us as patients.”
curncman
Posts: 905
Joined: Fri Jun 26, 2020 8:27 am

Cardio Vascular cell therapy

Post by curncman »

I feel that TSOI's next BIG invention will be centered around the Cardiovascular system as BIG PHARMA is figuring out the VIRUS effects...

Since early in the pandemic, COVID-19 has been associated with heart problems, including reduced ability to pump blood and abnormal heart rhythms. But it's been an open question whether these problems are caused by the virus infecting the heart, or an inflammatory response to viral infection elsewhere in the body. Such details have implications for understanding how best to treat coronavirus infections that affect the heart.

A new study from Washington University School of Medicine in St. Louis provides evidence that COVID-19 patients' heart damage is caused by the virus invading and replicating inside heart muscle cells, leading to cell death and interfering with heart muscle contraction. The researchers used stem cells to engineer heart tissue that models the human infection and could help in studying the disease and developing possible therapies.

"Early on in the pandemic, we had evidence that this coronavirus can cause heart failure or cardiac injury in generally healthy people, which was alarming to the cardiology community," said senior author Kory J. Lavine, MD, PhD, an associate professor of medicine. "Even some college athletes who had been cleared to go back to competitive athletics after COVID-19 infection later showed scarring in the heart. There has been debate over whether this is due to direct infection of the heart or due to a systemic inflammatory response that occurs because of the lung infection.

"Our study is unique because it definitively shows that, in patients with COVID-19 who developed heart failure, the virus infects the heart, specifically heart muscle cells."

Lavine and his colleagues -- including collaborators Michael S. Diamond, MD, PhD, the Herbert S. Gasser Professor of Medicine, and Michael J. Greenberg, PhD, an assistant professor of biochemistry and molecular biophysics -- also used stem cells to engineer tissue that models how human heart tissue contracts. Studying these heart tissue models, they determined that viral infection not only kills heart muscle cells but destroys the muscle fiber units responsible for heart muscle contraction.

They also showed that this cell death and loss of heart muscle fibers can happen even in the absence of inflammation.

"Inflammation can be a second hit on top of damage caused by the virus, but the inflammation itself is not the initial cause of the heart injury," Lavine said.

Other viral infections have long been associated with heart damage, but Lavine said SARS-CoV-2, the virus that causes COVID-19, is unique in the effect it has on the heart, especially in the immune cells that respond to the infection. In COVID-19, immune cells called macrophages, monocytes and dendritic cells dominate the immune response. For most other viruses that affect the heart, the immune system's T cells and B cells are on the scene.

"COVID-19 is causing a different immune response in the heart compared with other viruses, and we don't know what that means yet," Lavine said. "In general, the immune cells seen responding to other viruses tend to be associated with a relatively short disease that resolves with supportive care. But the immune cells we see in COVID-19 heart patients tend to be associated with a chronic condition that can have long-term consequences. These are associations, so we will need more research to understand what is happening."

Part of the reason these questions of causation in heart damage have been hard to answer is the difficulty in studying heart tissue from COVID-19 patients. The researchers were able to validate their findings by studying tissue from four COVID-19 patients who had heart injury associated with the infection, but more research is needed.

To that end, Lavine and Diamond, are working to develop a mouse model of the heart injury. To emphasize the urgency of the work, Lavine pointed to the insidious nature of the heart damage COVID-19 can cause.

"Even young people who had very mild symptoms can develop heart problems later on that limit their exercise capacity," Lavine said. "We want to understand what's happening so we can prevent it or treat it. In the meantime, we want everyone to take this virus seriously and do their best to take precautions and stop the spread, so we don't have an even larger epidemic of preventable heart disease in the future."

Reference: Bailey AL, Dmytrenko O, Greenberg L, et al. SARS-CoV-2 infects human engineered heart tissues and models COVID-19 myocarditis. J Am Coll Cardiol Basic Trans Science. 2021. doi:10.1016/j.jacbts.2021.01.002

The so-called "long-hauler" syndrome now has an official name: PASC, which stands for post acute sequelae of Covid. It's become a top search term. Symptoms of PASC include fatigue, gi problems, impaired lung capacity, mental health/sleep difficulties, and neurologic problems such as loss of smell or "brain fog" (known to afflict some posters on this board). PASC can affect all ages, including children. It will impact us for some time. A lot of room for remestemcel-L to shine as the recovery of a group of the sickest C-19 patients is analyzed.
curncman
Posts: 905
Joined: Fri Jun 26, 2020 8:27 am

US health agency will invest $1 billion to investigate ‘long COVID’ The National Institutes of Health will fund research

Post by curncman »

US health agency will invest $1 billion to investigate ‘long COVID’
The National Institutes of Health will fund researchers to track people’s recovery, and will host a biospecimen bank.

https://www.nature.com/articles/d41586-021-00586-y

The National Institutes of Health will fund researchers to track people’s recovery, and will host a biospecimen bank.

The United States has announced that it will spend big on research into ‘long COVID’ — the long-lasting health effects of a SARS-CoV-2 infection. The funding comes as the scientific community is just starting to recognize the impact of the condition and unravel why it occurs. On 23 February, the US National Institutes of Health (NIH) announced an initiative worth US$1.15 billion over four years to fund investigations of the condition, and listed some first priorities.

Symptoms of long COVID are wide-ranging and include fatigue, fevers and shortness of breath, as well as neurological conditions such as anxiety and depression, and an inability to concentrate. They can appear weeks after a SARS-CoV-2 infection and linger for months. The NIH has begun referring to the collection of after-effects as post-acute sequelae of SARS-CoV-2 infection, or PASC.

Some of the NIH PASC Initiative’s main goals are to better understand the biological basis of PASC, and what makes some people more vulnerable to the condition than others — with a view towards eventually finding treatments.

“We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound,” NIH director Francis Collins said in a statement announcing the effort. A study1 of 177 people published last month determined that 9 months after infection with SARS-CoV-2, one-third of them were still reporting symptoms such as fatigue. This shows that with more than 115 million COVID-19 infections worldwide so far, the number of people with PASC could be massive.


PDF version
Francis Collins holds up a model of the virus SARS-CoV-2.
US National Institutes of Health director Francis Collins has announced an initiative to study the effects of COVID-19 that can last for weeks or months.Credit: Saul Loeb/CNP via Zuma Wire

The United States has announced that it will spend big on research into ‘long COVID’ — the long-lasting health effects of a SARS-CoV-2 infection. The funding comes as the scientific community is just starting to recognize the impact of the condition and unravel why it occurs. On 23 February, the US National Institutes of Health (NIH) announced an initiative worth US$1.15 billion over four years to fund investigations of the condition, and listed some first priorities.

Symptoms of long COVID are wide-ranging and include fatigue, fevers and shortness of breath, as well as neurological conditions such as anxiety and depression, and an inability to concentrate. They can appear weeks after a SARS-CoV-2 infection and linger for months. The NIH has begun referring to the collection of after-effects as post-acute sequelae of SARS-CoV-2 infection, or PASC.


The lasting misery of coronavirus long-haulers
Some of the NIH PASC Initiative’s main goals are to better understand the biological basis of PASC, and what makes some people more vulnerable to the condition than others — with a view towards eventually finding treatments.

“We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound,” NIH director Francis Collins said in a statement announcing the effort. A study1 of 177 people published last month determined that 9 months after infection with SARS-CoV-2, one-third of them were still reporting symptoms such as fatigue. This shows that with more than 115 million COVID-19 infections worldwide so far, the number of people with PASC could be massive.

“Other than the general consensus that the phenomenon is real, all we really know are the questions,” says Steven Deeks, a physician and infectious-disease researcher at the University of California, San Francisco, who is leading a project to study people with long-lasting effects from COVID-19.

A fuller picture
One of the first projects the NIH has said it will fund is a recovery-tracking effort. Investigators will collaborate to record the recovery paths of at least 40,000 adults and children with SARS-CoV-2 in a ‘metacohort’, to observe who develops long-term effects and who doesn’t. The metacohort will cover people of all ages, including pregnant people, to help researchers pin down the range of effects that people experience while recovering from an infection.

Such long-term tracking is necessary to gain a fuller picture of the phenomenon, says Carlos del Rio, an epidemiologist and infectious-disease physician at Emory University in Atlanta, Georgia, who has called for lengthy longitudinal studies to improve understanding of the disease2.

A separate project will record the effects of COVID-19 on various organ systems by collecting evidence from autopsies. This type of analysis has so far indicated that the disease can destroy tissue in the lungs, as well as other organs — but researchers would like more detailed information. In another effort, the NIH will host a bank of biospecimens such as blood, urine, faeces and cerebrospinal fluid from people with PASC; researchers will be able to access the samples to inform future studies.


PDF version
Francis Collins holds up a model of the virus SARS-CoV-2.
US National Institutes of Health director Francis Collins has announced an initiative to study the effects of COVID-19 that can last for weeks or months.Credit: Saul Loeb/CNP via Zuma Wire

The United States has announced that it will spend big on research into ‘long COVID’ — the long-lasting health effects of a SARS-CoV-2 infection. The funding comes as the scientific community is just starting to recognize the impact of the condition and unravel why it occurs. On 23 February, the US National Institutes of Health (NIH) announced an initiative worth US$1.15 billion over four years to fund investigations of the condition, and listed some first priorities.

Symptoms of long COVID are wide-ranging and include fatigue, fevers and shortness of breath, as well as neurological conditions such as anxiety and depression, and an inability to concentrate. They can appear weeks after a SARS-CoV-2 infection and linger for months. The NIH has begun referring to the collection of after-effects as post-acute sequelae of SARS-CoV-2 infection, or PASC.


The lasting misery of coronavirus long-haulers
Some of the NIH PASC Initiative’s main goals are to better understand the biological basis of PASC, and what makes some people more vulnerable to the condition than others — with a view towards eventually finding treatments.

“We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound,” NIH director Francis Collins said in a statement announcing the effort. A study1 of 177 people published last month determined that 9 months after infection with SARS-CoV-2, one-third of them were still reporting symptoms such as fatigue. This shows that with more than 115 million COVID-19 infections worldwide so far, the number of people with PASC could be massive.

“Other than the general consensus that the phenomenon is real, all we really know are the questions,” says Steven Deeks, a physician and infectious-disease researcher at the University of California, San Francisco, who is leading a project to study people with long-lasting effects from COVID-19.

A fuller picture
One of the first projects the NIH has said it will fund is a recovery-tracking effort. Investigators will collaborate to record the recovery paths of at least 40,000 adults and children with SARS-CoV-2 in a ‘metacohort’, to observe who develops long-term effects and who doesn’t. The metacohort will cover people of all ages, including pregnant people, to help researchers pin down the range of effects that people experience while recovering from an infection.


Long COVID: let patients help define long-lasting COVID symptoms
Such long-term tracking is necessary to gain a fuller picture of the phenomenon, says Carlos del Rio, an epidemiologist and infectious-disease physician at Emory University in Atlanta, Georgia, who has called for lengthy longitudinal studies to improve understanding of the disease2.

A separate project will record the effects of COVID-19 on various organ systems by collecting evidence from autopsies. This type of analysis has so far indicated that the disease can destroy tissue in the lungs, as well as other organs — but researchers would like more detailed information. In another effort, the NIH will host a bank of biospecimens such as blood, urine, faeces and cerebrospinal fluid from people with PASC; researchers will be able to access the samples to inform future studies.

Patient perspectives
People who have experienced COVID-19 and its long-term aftermath, including some researchers, have mobilized to argue that better attention should be paid to post-COVID effects.

Such groups are worried about whether and how researchers will take their experience into consideration, says Shobita Parthasarathy, director of the science, technology and policy programme at the University of Michigan in Ann Arbor. “There is a concern among patients that their experience and knowledge won’t be taken seriously — that in the process of becoming a scientific inquiry, their experiences will not be used to guide the understanding of the condition.”

“It’s a confusing and difficult illness to describe if you haven’t had it,” says Hannah Davis, who is one of the leaders of Patient Led Research For COVID-19, an international group of researchers and advocates who themselves have long COVID. “I think that working with patients will facilitate understanding of long COVID much more quickly.” The NIH’s name for the condition, PASC, is more accurate than some others that researchers have proposed, says Davis, but it is a departure from ‘long COVID’, the name that people with the condition have themselves settled on.

So far, the NIH has received $3.6 billion from the US Congress to fund COVID-19-related work and research, in addition to the $1.15 billion for studies of PASC .

In February, the UK National Institute for Health Research announced it was investing £18.5 million (US$25.9 million) to fund four studies of long COVID.

“It is of course impossible to truly understand the long-term consequences of a disease that did not exist a year ago,” says Deeks. “We are doing our best, but this will take time.”
curncman
Posts: 905
Joined: Fri Jun 26, 2020 8:27 am

As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

Post by curncman »

As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

https://jamanetwork.com/journals/jama/f ... le/2771111

For 32-year-old Hanna Lockman of Louisville, Kentucky, it all started March 12. She was at work when she suddenly felt a stabbing pain in her chest.

“It just got worse and worse and worse, to the point I was crying from the pain,” she recalled in a recent interview. At 3 am, the pain sent her to the emergency department. “I had developed a dry cough, maybe a mild fever. I don’t remember.”

Image

Five months, 16 emergency department trips, and 3 short hospitalizations later, Lockman can’t remember a lot of things. She places the blame squarely on coronavirus disease 2019 (COVID-19).

“I joke, ‘Well, COVID has eaten my brain, because I can’t remember how to remember words, keep track of medication,’” she said. “My brain just feels like there’s a fog.”

Lockman considers herself to be a “long hauler,” someone who still hasn’t fully recovered from COVID-19 weeks or even months after symptoms first arose. She serves as an administrator of 2 “Long Haul COVID Fighters” Facebook groups, whose members now number more than 8000.

The longer the pandemic drags on, the more obvious it becomes that for some patients, COVID-19 is like the unwelcome houseguest who won’t pack up and leave.

“Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,” Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, said in July during a COVID-19 webinar organized by the International AIDS Society.

That appeared to be the case with the first severe acute respiratory syndrome (SARS), which emerged in 2002 and was also caused by a coronavirus. Some people who were hospitalized with SARS still had impaired lung function 2 years after their symptoms began, according to a prospective study of 55 patients in Hong Kong. But only 8096 people were diagnosed with SARS worldwide—a fraction of the COVID-19 cases reported each day in the US alone.

In a recent JAMA research letter, 125 of 143 Italian patients ranging in age from 19 to 84 years still experienced physician-confirmed COVID-19–related symptoms an average of 2 months after their first symptom emerged. All had been hospitalized, with their stays averaging about 2 weeks; 80% hadn’t received any form of ventilation.

Physicians at a Paris hospital recently reported that they saw an average of 30 long haulers every week between mid-May, when the COVID-19 lockdown ended in France, and late July. The patients’ average age was around 40 years, and women outnumbered men 4 to 1.

As with SARS, many COVID-19 long haulers are health care workers who had massive exposure to the virus early in the pandemic, neuroimmunologist Avindra Nath, MD, of the National Institute of Neurological Disorders and Stroke (NINDS), noted in a recent editorial.

Overall, approximately 10% of people who’ve had COVID-19 experience prolonged symptoms, a UK team estimated in a recently published Practice Pointer on postacute COVID-19 management. And yet, the authors wrote, primary care physicians have little evidence to guide their care.

Puzzling Persistence

Adults with severe illness who spend weeks in intensive care, often intubated, can experience long-lasting symptoms, but that’s not unique to patients with COVID-19. What’s unusual about the long haulers is that many initially had mild to moderate symptoms that didn’t require lengthy hospitalization—if any—let alone intensive care.

“Most of the patients that I see who are suffering from [post–COVID-19] syndrome were not hospitalized,” Jessica Dine, MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine, said in an interview. “They were pretty sick, but still at home.”

Why some previously healthy, often young, adults still haven’t recovered from the disease has stymied physicians.

“We in the medical field are very accustomed to taking care of respiratory syncytial virus and other pneumoviruses in young adults,” Wesley Self, MD, MPH, an emergency medicine physician at Vanderbilt University Medical Center, said in an interview. With those infections, “people feel pretty sick for 2 to 3 days, and then they feel markedly better.”

But COVID-19 is another matter, Self and his coauthors found in a recent study of 292 individuals with the disease who did not require hospitalization. “One of the goals of this particular study was to understand those with mild symptoms,” Self said. “This was an understudied group.”

More than a third of them hadn’t returned to their usual state of health 2 to 3 weeks after testing positive, the researchers wrote in the Morbidity and Mortality Weekly Report. The older the patients, the more likely they were to say they their pre–COVID-19 health hadn’t come back. But even a quarter of the youngest, those aged 18 to 34 years, said they had not yet regained their health.

“That certainly was a surprise to us,” Self’s coauthor and Vanderbilt colleague William Stubblefield, MD, an emergency medicine specialist, said in an interview.

Self and others say they suspect that severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection triggers long-lasting changes in the immune system. In some organs, especially the lungs, those changes persist far past the point at which patients have stopped shedding the virus, Self said. “Frankly, we don’t know how long that lasts.” To help answer that question, Self and his coauthors are conducting a follow-up study to assess outpatients’ health 6 months after their COVID-19 diagnosis.

Sorting Through Symptoms

Just as acute COVID-19 has been found to affect every part of the body, so, apparently, do its persistent symptoms.

In the study of Italian patients, the most common symptoms reported at follow-up were fatigue, shortness of breath, joint pain, and chest pain, in that order. None of the patients had a fever or other sign or symptom of acute illness, but about 44% of them had a worsened quality of life. As the authors pointed out, though, patients with community-acquired pneumonia can also have persistent symptoms, so the findings might not be exclusive to COVID-19.

Less formal surveys have also turned up wide-ranging lingering effects. When the Body Politic COVID-19 Support Group conducted an online survey in the spring, about 91% of 640 respondents said they hadn’t fully recovered and were on day 40 of symptoms, on average. Most reported ongoing fatigue, chills and sweats, body aches, headaches, brain fog, and gastrointestinal issues. Anecdotally, some people have reported feeling better for days or weeks before relapsing with old or new symptoms, according to the organization, which started as a small Instagram group chat and has grown to more than 14 000 members.

Francis Collins, MD, PhD, director of the National Institutes of Health (NIH), blogged about the survey in September. “Because COVID-19 is such a new disease, little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers,” Collins wrote, noting that the Body Politic and its international Patient-Led Research for COVID-19 group are now conducting a second survey of long haulers.

A recent survey by the grassroots group COVID-19 “Survivor Corps” found that fatigue was the most common of the top 50 symptoms experienced by the more than 1500 long haulers who responded, followed by muscle or body aches, shortness of breath or difficulty breathing, and difficulty concentrating.

Cough is the most common persistent symptom seen at the new COVID-19 Recovery Clinic (CORE) at Montefiore Medical Center in New York, codirector Aluko Hope, MD, MSCE, said in an interview. Between Hope, a pulmonary and critical care specialist, and the clinic’s other director, general internist Seth Congdon, MD, the clinic sees a wide range of patients, including some who were never hospitalized. What the CORE patients have in common is that they haven’t yet returned to their pre–COVID-19 health. At least a few of them have been sick for 4 or 5 months, Hope said. Besides the persistent cough, which can also occur with other viruses, loss of taste and smell lingers for many long haulers.

Many of the clinic’s patients are also still short of breath. This could be due to the deconditioning seen with any lengthy illness, Hope said, or to infection-specific conditions, such as postviral reactive airways disease, lung fibrosis, or viral myocarditis. Hope said that he’s seen at least one patient with no history of heart disease who developed postviral heart failure.

Dine first noticed that some patients weren’t getting better through Penn’s COVID Watch outreach program, which texts those who are home sick with the disease twice a day until they’ve been symptom-free for a week to 10 days. She now sees so many people with persistent issues that she’s developed a flowchart to try to narrow down the reasons for their ill health: Is this a new symptom unrelated to COVID-19? Is it a complication of the disease, like a blood clot? Or is it a side effect of treatment? If she rules those out, she said there are just 2 options left: Either the patient is still infected with SARS-CoV-2 or they have postviral syndrome.

When the Fog Doesn’t Lift

Lockman and many other long haulers describe their most debilitating persistent symptom as impaired memory and concentration, often with extreme fatigue.

The effects are different from the cognitive impairment patients might experience after a critical illness, according to Hope. When it comes to COVID-19, “I do think there’s a subset of patients [who] weren’t even in the hospital who have a postviral brain fog,” he said.

At the end of May, Lockman took a 6-week leave of absence from her job at a human resources management company. Since that ended, she has been working part-time—4 hours on a good day. She moved her home office to her living room so she can rest on the couch. After a recent trip to the emergency department, she was so exhausted that she slept all but 3 hours the next day.

An intriguing idea is taking shape. During the July webinar, Fauci noted that some long haulers’ symptoms like brain fog and fatigue are “highly suggestive” of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

New York–based psychiatrist Mady Hornig, MD, a member of Columbia University Medical Center’s epidemiology faculty, has long studied the role of microbial, immune, and toxic factors in the development of brain conditions such as ME/CFS, whose etiology and pathogenesis are unknown. Now she’s looking at these relationships not only as a physician and scientist but also as a long hauler.

Hornig wrote off a throat tickle and cough in March as allergies. And she assumed that walking around her home shoeless caused the chilblains that later developed on her toes. It wasn’t until a 4 am fever awoke her on April 24 that she suspected she had contracted COVID-19. Although she takes 650 mg of aspirin daily for another condition, the fever persisted for 12 days, a longer stretch than any she had experienced since she had her tonsils removed at age 14, nearly 50 years ago.

Despite all the indicators, Hornig’s April 27 nasal swab test was negative for SARS-CoV-2. That’s likely because it was performed either too soon or too late—depending on whether the late April fever or the earlier cough or “COVID toes” were the first sign.

Her doctors told her they didn’t have a better explanation than COVID-19 for her symptoms, which have also included oxygen saturation levels as low as 88% and 8- to 10-minute tachycardia episodes that still send her heart rate to 115 to 135 beats per minute at least once a day and leave her breathless, even if she’s sitting down. Before COVID-19, Hornig was used to working 12- to 14-hour days. For weeks after becoming ill, tachycardia would leave her so fatigued that “I felt like I could not do anything further—my brain was just empty,” she said in an interview.

About 3 out of 4 people diagnosed with ME/CFS report that it began with what appeared to be an infection, often infectious mononucleosis caused by Epstein-Barr virus (EBV), Hornig noted. One ME/CFS International Classification of Diseases diagnosis code even calls the condition “post-viral fatigue syndrome.” Although EBV is a herpesvirus, not a coronavirus, Hornig speculated that SARS-CoV-2 infection might reactivate latent EBV, triggering the fatigue.

To explore the idea, she has designed prospective studies with the Solve ME/CFS Initiative. The nonprofit in July launched a registry and biobank, funded in part by the NIH, to collect data from COVID-19 long haulers, as well as people diagnosed with ME/CFS and healthy controls.

“Because of the large number of COVID-19 cases occurring simultaneously, we have a unique scientific window and a huge responsibility to investigate any long-term consequences and disabilities that COVID-19 survivors may face,” Hornig said in a statement announcing the registry and biobank. “Doing so will provide clues and potential treatment candidates for the millions of Americans already diagnosed with ME/CFS.”

Hornig and other scientists point to autonomic nervous system dysregulation as the possible explanation for long-haulers’ tachycardia, extreme fatigue, and other persistent symptoms. The system controls involuntary physiologic processes such as heart rate, blood pressure, respiration, and digestion.

Stanford University neurologist Mitchell Miglis, MD, who specializes in autonomic nervous system disorders such as postural orthostatic tachycardia syndrome (POTS), recently coauthored a case report about a previously healthy, 26-year-old emergency department nurse who developed classic POTS symptoms—fatigue, tachycardia—that hadn’t resolved 5.5 months after she was diagnosed with COVID-19 in March.

“One of the most common symptoms of POTS is brain fog,” Miglis noted. “It’s not clearly related to blood flow to the brain. It’s something else.”

With Lauren Stiles, JD, president of Dysautonomia International and research assistant professor of neurology at Stony Brook University School of Medicine, Miglis has developed an online survey that is being shared with COVID-19 survivor social media groups to gather more information about autonomic symptoms. He plans to resurvey respondents every 3 months for the next year to see how they progress. Miglis speculated that POTS, ME/CFS, and persistent COVID-19 may be different names for the same disorder, and patients’ diagnoses depend on their physicians’ subspecialty.

Nath, chief of the Section of Infections of the Nervous System at NINDS, is planning a prospective study of persistent ME/CFS-type symptoms among people who’ve had COVID-19. “I think we need to assure the public that we are aware of the syndrome,” he said in an interview. “We’re very keen to understand what it’s about.”

“Medical Gaslighting”

Many long haulers never had laboratory confirmation of COVID-19, which, they say, adds to some health care professionals’ skepticism that their persistent symptoms have a physiological basis.

Only about a quarter of the Body Politic survey’s respondents had tested positive for COVID-19, while nearly half were never tested—often because their request was denied. But everyone’s answers were included in the analysis. The main difference between those who received a positive or negative result was how early in their illness they were tested. “We believe future research must consider the experiences of all people with COVID-19 symptoms, regardless of testing status, in order to better understand the virus and underscore the importance of early and widespread testing,” the report’s authors wrote.

Lockman was not one of the survey respondents, but she exemplifies the Body Politic’s point. At her first trip to the emergency department, she was diagnosed with pneumonia and admitted to the hospital, where she received supplemental oxygen and intravenous antibiotics for 3 days. She suspected it was COVID-19 from the beginning. But she was told she wasn’t sick enough or old enough to get one of the then-scarce tests for SARS-CoV-2.

Three weeks after her symptoms began, and after testing negative for influenza and respiratory syncytial virus, Lockman was finally given a SARS-CoV-2 nasal swab test. She tested negative, likely because she had low virus levels by then, she said. In June, she was hospitalized again, this time with pulmonary emboli. A physician who reviewed her chart said she had no doubt that COVID-19 explained her symptoms.

Body Politic has acknowledged that its survey sample wasn’t representative of all people with COVID-19. But the organization expressed hope that the findings would inform public health professionals and future research. Toward that end, the founders of the Long Haul COVID Fighters recently launched a Medical and Scientific Collaboration group on Facebook, giving patients and researchers a place to exchange information.

One thing that’s clear, Miglis said, is that “these mystery diagnoses are real, and they’re not just in patients’ heads.”

Long haulers say they aren’t always taken seriously, though, especially if they’re women, harkening back to the era when “female troubles” were written off as hysteria.

“There is definitely gender bias,” Dine said. Women with persistent symptoms are more likely than men to be viewed as “dramatic and anxious,” she said. “One of the first steps is believing them and making them feel heard. That alone helps.”

“We’ve experienced so much medical gaslighting, basically doctors telling us, ‘That’s not what you have. It’s just anxiety,’” Lockman said. Despite her frustrations, she remains hopeful that her health will continue to improve, although she recognizes that there likely will be bumps along the way.

“I definitely feel better than I did a month ago,” she said in early August. “But I still wake up not knowing what I’m going to deal with today.”
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

New review of post-acute COVID-19

3/23/21

https://www.news-medical.net/news/20210 ... ID-19.aspx


The first year of the COVID-19 pandemic has taken the lives of millions of people around the world but has also left hundreds with lingering symptoms or completely new symptoms weeks after recovery.

Much is unknown about what causes these symptoms and how long they last. But with nearly 740,000 cases of COVID reported in New York City since last March--and 28 million in the United States--physicians are increasingly seeing these "long-haulers" in their practices.

" Over the course of the summer, we started getting a sense of what issues these people were having. We felt that a review of all these possible issues would be important not only for health care providers but also for patients. It's important for patients to know that what they're experiencing may be a consequence of COVID-19 infection and that they are not alone in experiencing lingering effects of COVID-19 infection."

- Ani Nalbandian, MD, Study First Author and Cardiology Fellow, Vagelos College of Physicians and Surgeons, Columbia University

Nalbandian is the study author of a new review of post-acute COVID-19.

Nalbandian, along with co-first author Kartik Sehgal, MD, medical oncologist at Harvard Medical School and Dana Farber Cancer Institute, spearheaded the review effort, bringing together more than 30 experts from Columbia and other medical centers hit by the initial wave.

The review summarizes what the physicians were seeing in their own patients and what others had reported in the literature. The experts represented a wide range of fields, including neurology, cardiology, and nephrology.

Nalbandian and Elaine Y. Wan, MD, the Esther Aboodi Assistant Professor of Medicine in Cardiology and Cardiac Electrophysiology at Columbia University, the review's senior author, discuss the symptoms that patients and providers should know about COVID-19 long haulers.

It's not just "brain fog"

Chest pain has been reported in up to 20% of COVID-19 survivors two months after recovery from the infection, COVID-19 can unveil previously unrecognized cases of diabetes, and a few percentage of patients experience strokes, pulmonary embolisms, and other complications from blood clots.

Wan's speciality is electrophysiology, and during the pandemic she and her colleagues published more than 10 articles about COVID and heart arrhythmias.

"Arrhythmias can lead to stroke, heart failure, and long-lasting damage to the heart," says, "and that's something that patients may not be aware of."

In addition, multiple organs may be affected simultaneously. "If you go to a cardiologist, the cardiologist may just focus on the heart," Nalbandian says. "But we need to think of the whole person since COVID is potentially affecting many organs, especially in those who have been hospitalized."

Everyone is vulnerable

Most people who experience long-term symptoms may have had health issues before contracting the virus or they developed very severe illness during COVID-19 infection.

"But really, any of these issues can happen to any patient who had COVID-19," says Wan. "For example, we've seen young patients without prior medical illness who developed autonomic dysfunction and fast heart rates after COVID-19. It's not just the most vulnerable who have issues after COVID."

"There really is a post-COVID syndrome and it doesn't always correlate with the severity of the acute COVID infection itself," says Nalbandian.

The majority of COVID patients never come to the hospital for treatment. "We may not be checking in on these patients with the same urgency, but they shouldn't be forgotten," she adds.

Symptoms can appear weeks, months after recovery


"I have seen young patients, weeks even months after COVID-19 infection, and they've suddenly developed new onset of heart racing, palpitations, and chronic fatigue," says Wan.

Other patients complain weeks later of new chest discomfort or difficulty with decision making, memory, and concentration.

"When we think of COVID-19, we think of mostly a respiratory illness," Wan says. "But even after they've recovered from their respiratory illness, they may still have other clinical symptoms due to issues with other organ systems."

Patients need dedicated "COVID-19 clinics"

"COVID-19 is the first infectious disease that I've come across that has such an effect on a wide variety of organs," Wan says. "It's changed my clinical practice. No matter what the patient comes in for, I now ask if they ever had COVID-19 infection. It changes the possible range of diagnoses."

"Based on this review, all of us recognized that there needs to be interdisciplinary care to treat patients longitudinally," says Nalbandian. "Care for patients with COVID-19 should not conclude at the time of hospital discharge."

To provide interdisciplinary care, health care systems should establish dedicated "COVID-19 clinics," similar to those now found in Italy.

Nalbandian says setting up such clinics in the United States has been difficult since physicians are still busy taking care of new COVID patients as subsequent waves come in. "Clinics could prioritize follow-up care for those at high risk for post-acute COVID-19 and those with the highest burden of persistent symptoms."

Patients should be vocal


Nalbandian says many patients have complained that their doctors don't recognize that their symptoms may be related to COVID, and that's one reason she and her co-authors organized the review.

"Here in New York, we're seeing patients who have been struggling for weeks and months looking for doctors who are knowledgeable," Nalbandian says. "Physicians should be attentive, legitimize patient concerns, and thoroughly document the symptoms."

Patients should not be afraid to be vocal about their symptoms. "Get in touch with your doctors even if you're not sure if your symptoms are lingering from your COVID infection," she says. "The situation is still fluid and we're learning more every month."

Join patient advocacy groups and clinical trials

The work of new patient advocacy groups has helped identify persistent symptoms and was instrumental in highlighting the persistence of symptoms among those who didn't require hospitalization.

"Active engagement with these groups is crucial," Nalbandian says, "along with participation in clinical trials for longitudinal assessment."

Though the medical community now has a better grasp of the constellation of the long-term symptoms that occur after COVID, "we don't know the duration and the long term complications," Nalbandian adds.

"In order to learn more, we need to refer patients to trials, and we've listed many active research studies in our review.

"Health care providers are still overburdened taking care of patients with acute COVID, but that's a collective responsibility of the medical community at large."

Source:

Columbia University Irving Medical Center

Journal reference:

Nalbandian, A., et al. (2021) Post-acute COVID-19 syndrome. Nature Medicine. doi.org/10.1038/s41591-021-01283-z.
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Long-term complications are common among COVID-19 recovered individuals

3/24/21


https://www.news-medical.net/news/20210 ... duals.aspx


A team of scientists from the United Kingdom has recently conducted a multicenter, prospective cohort study to investigate long-term consequences of coronavirus disease 2019 (COVID-19), caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The findings reveal that a significant proportion of COVID-19 recovered individuals present with persistent complications, including severe fatigue, breathlessness, development of new disability, and diminished quality of life. The study is currently available on the medRxiv* preprint server.

Background

Since the emergence of the COVID-19 pandemic, many studies have been done to characterize the clinical consequences of SARS-CoV-2 infection. Ample evidence is now available to demonstrate the wide-range of symptoms observed in mild, moderate, or severe COVID-19 patients. Moreover, with the progression of the pandemic, it is becoming more evident that many COVID-19 recovered patients develop long-term symptoms, which is commonly known as long-COVID.

Regarding active SARS-CoV-2 infection, it is now well-established that although most COVID-19 patients remain asymptomatic or mildly symptomatic, the risk of developing serious complications is high among older adults and those with pre-existing comorbidities. However, sufficient information is not available to identify at-risk individuals who are more likely to develop long-COVID.

In the current study, the scientists have characterized the long-term symptoms reported by COVID-19 recovered individuals who had been hospitalized during the course of active SARS-CoV-2 infection.

Study design

The study was conducted on a total of 327 hospitalized COVID-19 patients who were discharged from the hospitals at least 90 days before the commencement of the study. The enrolled patients were from 31 hospitals in the UK. A questionnaire-based survey was conducted wherein the patients self-reported their recovery status at least 90 days after the onset of the first COVID-19 symptom.

The primary parameter assessed in the survey was patient-reported recovery at 3 – 12 months after the onset of initial COVID-19 symptom. In addition, the patients were asked to mention persistent or newly developed symptoms, newly developed disabilities, fatigue level, breathlessness, and overall quality of life.

Important observations

Among the participants, the majority were male and of white ethnicity. The most commonly reported comorbidities were asthma and diabetes.

According to the survey data, about 55% of all participants reported not feeling recovered at follow-up time. The participants who had severe COVID-19 were found to be more likely to feel not fully recovered.

Importantly, the majority of participants (93%) reported persistent or new symptoms, with fatigue being the most frequently reported symptom. Other reported symptoms were breathlessness and sleep disturbance. Specifically, two major groups of symptoms were identified in the study: 1) fatigue, myalgia, and sensorineural deficits; and 2) olfactory, appetite, and urinary problems.

About 47% of participants mentioned experiencing higher breathlessness compared to their pre-COVID baseline. In general, female participants and those admitted to critical care units were found to be more susceptible to develop breathlessness during follow-up.

Although most participants reported experiencing fatigue during follow-up, no correlation was observed between the intensity of fatigue and the in-hospital COVID-19 severity. However, the susceptibility of developing fatigue was found to be higher among females than males.

The most commonly reported post-COVID disabilities were walking and mobility, followed by memory and concentration. In general, visual, memory, and walking disabilities were found to be more common among females than males.

An overall reduction in quality of life was observed among study participants. In this context, the most commonly reported contributing factors were anxiety and/or depression, pain and/or discomfort, and impaired daily activities. All these complications were found to be higher among females than males.

Factors contributing to long-COVID

A series of statistical analyses were conducted in the study to identify the contributing factors for long-COVID. The findings revealed that female participants under the age of 50 years were less likely to feel completely recovered during follow-up. A similar trend was observed for participants who received invasive mechanical ventilation in hospitals. Importantly, no correlation was observed between participant’s age and their post-COVID long-term symptoms. However, participants with comorbidities were found to be more likely to experience fatigue, disability, and reduced quality of life.

Study significance

The study reveals that a significant proportion of COVID-19 patients are at higher risk of experiencing persistent symptoms even several months after recovery. In general, females and critically ill patients are more likely to develop long-term complications, such as fatigue, breathlessness, disability, and reduced quality of life.

*Important Notice

medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.

Journal reference:


Sigfrid L. 2021. Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol. MedRxiv. doi: https://doi.org/10.1101/2021.03.18.21253888, https://www.medrxiv.org/content/10.1101 ... 21253888v2
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

COVID-19 long haulers report persistent neurological symptoms

3/26/21


https://www.news-medical.net/news/20210 ... ptoms.aspx


As the coronavirus disease 2019 (COVID-19) pandemic spreads worldwide, some people who had the infection report persistent symptoms. Others experience neurological symptoms like brain fog, headaches, and dizziness.

Most severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infected individuals never require hospitalization. However, some of those who recovered develop prolonged and persistent symptoms.

Researchers at Northwestern University, USA, analyzed "long hauler" patients whose symptoms lasted at least six weeks. They found persistent neurological symptoms, including brain fog and headache.

The study, published in the Annals of Clinical and Translational Neurology, sought to characterize the spectrum of neurological symptoms in COVID-19 long haulers who were not hospitalized during the infection.

What are long-haulers?


Long haulers are those who have recovered from COVID-19 but experience persistent symptoms. Some report prolonged cough and difficulty breathing, while others have neurological symptoms.

Neurological manifestations have been reported in 36.4 to 82.3 percent of hospitalized COVID-19 patients globally. Apart from neurological symptoms, pulmonary, cardiac, and gastrointestinal dysfunction may persist after acute infection, constituting a "long COVID" syndrome. It is also known as the syndrome of "post-acute sequelae of SARS-CoV-2 infection (PASC)".

Further, more than 80 percent of infected patients have limited respiratory symptoms and do not require hospitalization. Despite this, some patients develop persistent and debilitating symptoms.

The study

The study included the first 100 consecutive patients, wherein 50 are SARS-CoV-2 positive, and 50 are negative. These patients presented to the Neuro-COVID-19 clinic from May to November 2020.

The researchers noted the frequency of neurologic symptoms lasting more than six weeks and analyzed the patient-reported quality of life measures.

The team found that after the acute SARS-CoV-2 infection resolved, 85 percent reported at least four ongoing neurological issues, which impacted their daily lives.

The most common symptom was brain fog, which involves memory problems, a lack of mental clarity, and an inability to focus. About 81 percent of the participants reported ongoing issues with memory and thinking, followed by 68 percent reporting headaches. Over half of the respondents reported problems with smell, taste, tingling or numbness, and muscle ache.

The less common symptoms include dizziness (47%), pain (43%), blurred vision (30%) and tinnitus (29%). The team also revealed that most of the study's long haulers were women, with an average age of 43.

The study highlights the need for future research, showing that multiple distressing neurological symptoms may happen and persist after the acute phase of SARS-CoV-2 infection, even in those with mild symptoms who do not require hospitalization.

Journal reference:

Graham, E., Clark, J., Orban, Z. et al. (2021). Persistent neurologic symptoms and cognitive dysfunction in non‐hospitalized Covid‐19 "long haulers." Annals of Clinical and Translational Neurology. https://doi.org/10.1002/acn3.51350, https://onlinelibrary.wiley.com/doi/10.1002/acn3.51350
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Long-COVID-19 is a significant risk in recovered patients post-hospitalization

4/2/21


https://www.news-medical.net/news/20210 ... ation.aspx


The ongoing coronavirus disease 2019 (COVID-19) pandemic, caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pathogen, has claimed the lives of over 2.79 million people worldwide. However, the long-term effects of the virus on human health and lifespan are less well known.

A new study, which appeared in the British Medical Journal, reports on a retrospective study to examine the incidence and risk factors for ‘long COVID-19’, the term used to describe the long-term effects of COVID-19 on affected individuals.

According to the National Institute for Health and Care Excellence (NICE), long COVID, also known as ‘post-COVID-19 syndrome’, comprises “signs and symptoms that develop during or after an infection consistent with covid-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis.” Beyond six weeks, in fact, it recommends that the patient be referred for assessment.

The current study aimed to estimate the excess number of illnesses persisting in recovered COVID-19 individuals, using national electronic health records and death registration records.

Study details

The study included patient data from the General Practice Extraction Service Data for Pandemic Planning and Research (GDPPR) up to 30 September 2020, and Hospital Episode Statistics Admitted Patient Care records for England up to 31 August 2020, besides death registrations from the Office for National Statistics, for deaths up to September 30, 2020.

All participants were hospitalized with COVID-19 between January 1 to August 31, 2020. Information on comorbidities such as respiratory disease, cardiovascular disease, diabetes and chronic kidney disease was collected. Controls were also matched to the patients.

The study thus included about 48,000 patients, of whom about one in ten required intensive care unit admission. They were followed up for a mean of 140 days and 150 days, for cases and controls, respectively. The mean age for cases was 65 years, and about 55% were men.

Risk factors for COVID-19 included being male, aged 50 years or above, inidicators of socioeconomic deprivation, a history of smoking, and an excessive body mass index. The presence of pre-existing illnesses also predisposes one to COVID-19.

What were the results?

The findings show that between one in three and four individuals hospitalized with COVID-19 required a repeat admission, while a little over one in ten died after being discharged. This corresponds to a rate of about 770 and 320 readmissions and deaths, respectively, per 1,000 person-years.

These rates are 3.5 and 7.7 times higher in cases relative to controls.

Respiratory disease was diagnosed in over 14,000 patients, comprising about 30% of the total, and a little less than half of these lung conditions were newly diagnosed. This yields a rate of 770 and 540 per 1,000 person-years, which is six- and 27-fold greater than that seen in controls.

The rates of major comorbidities were between 1.5 to 3 times greater in cases than in controls. Even after being discharged from the hospital, the rates of death, readmission and multiorgan damage remained much higher in cases.

Among those who required ICU care, the rates of respiratory disease and diabetes were higher after discharge, but they had lower mortality, readmission and major adverse cardiovascular events (MACE) than other hospitalized COVID-19 patients.

Age plays a role in the rates of death, readmission and organ dysfunction, all of which were higher in hospitalized cases aged 70 or more, relative to younger patients. Compared to controls, however, cases below 70 showed a higher increase in rates than older patients.

The increases were observed to be highest for death, which was 14 times more common in patients below 70 years vs. eight times higher for those aged 70 or more, compared to controls. Respiratory disease rates went up 11-fold and 5-fold, respectively, relative to controls.

Most of these rates were lower in Whites, except for diabetes. The highest difference in the rates was seen with respiratory disease, at 11-fold higher rates in non-Whites compared to 5-fold in the White group.

What are the implications?


The study shows that hospitalization with COVID-19 is linked to a higher risk of readmission and of death after discharge, compared to non-COVID-19 individuals of the same ethnicity, age and sex.

The rates of multiorgan dysfunction were markedly higher in people with COVID-19 compared to controls, indicating that the virus attacks tissues outside the lungs, causing damage.

The most commonly observed diseases were diabetes and MACE, both pre-existing and new cases.

Finally, those aged 70 years or above were at a greater absolute risk of death, readmission and multiorgan damage, compared to those who were younger, and for Whites compared to Black or other ethnicities. When compared to controls, those younger than 70, and minority-origin individuals, showed higher relative increases in these rates.

Those who were in the ICU before discharge showed higher risks of death and readmission. Perhaps this is because those not admitted (due to advanced age, multiple illnesses, or irreversible progressive organ damage) were more severely ill but were not admitted to the ICU because of the local hospital codes.

It is noteworthy that 53% of those admitted to the ICU emerged alive from hospital, but 63% of those were admitted to the ICU. This might be a form of survivorship bias, suggest the researchers.

The rates of readmission and death in this study agree with earlier reports, but extends their findings to reflect the occurrence of multiorgan dysfunction after discharge in a significant proportion of hospitalized COVID-19 patients.

The UK has been hit hard by the virus, with over three million COVID-19 cases so far. Many more cases have undoubtedly been missed because they went untested. The findings of this study indicate that a large number of post-COVID syndrome cases can be expected to rise, putting a heavy burden on healthcare infrastructure and staff.

Again, this study evaluated only multiorgan dysfunction, but other less critical symptoms of this condition may well sap the quality of life of these individuals, adding to the burden on GPs and other primary healthcare practitioners.

The known inequities in healthcare access, healthcare provision across the country, and blocks inpatient care pathways, are obstacles that could make the management of this condition even more difficult. However, integrated care pathways are essential to handle this risk.

" Our findings across organ systems suggest that the diagnosis, treatment, and prevention of post-covid syndrome requires integrated rather than organ or disease specific approaches.”

With increased risk observed across age groups, and relatively higher risk among ethnic minorities, more studies are urgently required to understand the risk factors and target at-risk groups for necessary management.

Journal reference:

Ayoubkhani, D. et al. (2021). Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. BMJ 2021; 372. doi: https://doi.org/10.1136/bmj.n693, https://www.bmj.com/content/372/bmj.n693
trader32176
Posts: 2522
Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

They Tested Negative for Covid. Still, They Have Long Covid Symptoms.

4/9/21


https://khn.org/news/article/they-teste ... republish/


Kristin Novotny once led an active life, with regular CrossFit workouts and football in the front yard with her children — plus a job managing the kitchen at a middle school. Now, the 33-year-old mother of two from De Pere, Wisconsin, has to rest after any activity, even showering. Conversations leave her short of breath.

Long after their initial coronavirus infections, patients with a malady known as “long covid” continue to struggle with varied symptoms such as fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain, and neurological issues. Novotny has been contending with these and more, despite testing negative for covid-19 seven months ago.

Experts don’t yet know what causes long covid or why some people have persistent symptoms while others recover in weeks or even days. They also don’t know just how long the condition — referred to formally by scientists as Post-Acute Sequelae of SARS-CoV-2 infection, or PASC — lasts.

But the people who didn’t test positive for covid — due either to a lack of access to testing or a false-negative result — face difficulty getting treatment and disability benefits. Their cases are not always included in studies of long covid despite their lingering symptoms. And, sometimes as aggravating, many find that family, friends or even doctors have doubts they contracted covid at all.

Novotny, who first became ill in August, initially returned to work at the beginning of the school year, but her symptoms snowballed and, one day months later, she couldn’t catch her breath at work. She went home and hasn’t been well enough to return.

“It is sad and frustrating being unable to work or play with my kids,” Novotny said via email, adding that it’s devastating to see how worried her family is about her. “My 9-year-old is afraid that if I’m left alone, I will have a medical emergency and no one will be here to help.”

Data about the frequency of false-negative diagnostic covid tests is extremely limited. A study at the Johns Hopkins School of Medicine and Bloomberg School of Public Health, which focused on the time between exposure and testing, found a median false-negative rate of 20% three days after symptoms start. A small study in China conducted early in the pandemic found a high rate of negative tests even among patients sick enough to be hospitalized. And given the dearth of long-hauler research, patients dealing with lingering covid symptoms have organized to study themselves.

The haphazard protocols for testing people in the United States, the delays and difficulties accessing tests and the poor quality of many of the tests left many people without proof they were infected with the virus that causes covid-19.

“It’s great if someone can get a positive test, but many people who have covid simply will never have one, for a variety of different reasons,” said Natalie Lambert, an associate research professor at the Indiana University School of Medicine and director of research for the online covid support group Survivor Corps.

Lambert’s work with computational analytics has found that long haulers face such a wide variety of symptoms that no single symptom is a good screening tool for covid. “If PCR tests are not always accurate or available at the right time and it’s not always easy to diagnose based on someone’s initial symptoms, we really need to have a more flexible, expansive way of diagnosing for covid based on clinical presentations,” she said.

Dr. Bobbi Pritt, chair of the division of clinical microbiology at Mayo Clinic in Minnesota, said four factors affect the accuracy of a diagnostic test: when the patient’s sample is collected, what part of the body it comes from, the technique of the person collecting the sample and the test type.

“But if one of those four things isn’t correct,” said Pritt, “you could still have a false-negative result.”

Timing is one of the most nebulous elements in accurately detecting SARS-CoV-2. The body doesn’t become symptomatic immediately after exposure. It takes time for the virus to multiply and this incubation period tends to last four or five days before symptoms start for most people. “But we’ve known that it can be as many as 14 days,” Pritt said.

Testing during that incubation period — however long it may be — means there may not be enough detectable virus yet.

“Early on after infection, you may not see it because the person doesn’t have enough virus around for you to find,” said Dr. Yuka Manabe, an infectious-disease expert and a professor at the Johns Hopkins University School of Medicine.

Novotny woke up with symptoms on Aug. 14 and got a covid test later that day. Three days later — the same day her test result came back negative — she went to the hospital because of severe shortness of breath and chest pressure.

“The hospital chose not to test me due to test shortages and told me to presume positive,” Novotny wrote, adding that hospital staffers told her she likely tested too early and received a false negative.

As the virus leaves the body, it becomes undetectable, but patients may still have symptoms because their immune responses kicked in. At that point, “you’re seeing more of an inflammatory phase of illness,” Manabe said.

An autoimmune response, in which the body’s defense system attacks its own healthy tissue, may be behind persistent covid symptoms in many patients, though small amounts of virus hiding in organs is another explanation.

Andréa Ceresa is nearing a year of long covid and has an extensive list of symptoms, topped by gastrointestinal and neurological issues. When the 47-year-old from Branchburg, New Jersey, got sick last April, she had trouble getting a covid test. Once she did, her result was negative.

Ceresa has seen so many doctors since then that she can’t keep them straight. She considers herself lucky to have finally found some “fantastic” doctors, but she’s also seen plenty who didn’t believe her or tried to gaslight her — a frequent complaint of long haulers.

A couple of doctors told her they didn’t think her condition had anything to do with covid. One told her it was all in her head. And after a two-month wait to see one neurologist, he didn’t order any tests and simply told her to take vitamin B, leaving her “crying and devastated.”

“I think the negative test absolutely did that,” Ceresa said.

Fortunately, among a growing number of physicians specifically treating patients with long covid, positive test results aren’t vital. In the patient-led research, symptoms patients reported were not significantly different between those who had positive covid tests and those who had negative tests.

Dr. Monica Verduzco-Gutierrez, a rehabilitation and physical medicine doctor who leads University Health’s Post-COVID Recovery program in San Antonio, said about 12% of the patients she’s seen never had a positive covid test.

“The initial test, to me, is not as important as the symptoms,” Gutierrez said. “You have to spend a lot of time with these patients, provide education, provide encouragement and try to work on all the issues that they’re having.”

She said she tells people “what’s done is done” and, regardless of test status, “now we need to treat the outcome.”
Post Reply