Post-COVID Clinics / Long Haulers

This forum is to discuss general things concerning TSOI.
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Long COVID-19 symptoms not associated with reduced cell-mediated immunity, finds study

2/3/21 ... study.aspx

The emergence of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) triggered the coronavirus disease 2019 (COVID-19) pandemic, which has caused over 104 million cases and well over 2.2 million deaths so far. While most infections are asymptomatic or very mild, there is a sizable minority of symptomatic infections which can become severe or life-threatening.

Some patients recover quickly and completely, while others develop persistent illness, requiring hospitalization or medical care for weeks or even months. While such features often reflect immune dysregulation, it is not clear if this is the case with persistent COVID-19. A new preprint on the medRxiv* server deals with this condition, aiming to identify the underlying immunologic status in such patients.

Prolonged COVID-19 symptoms

Persistent COVID-19 is more common in older patients, especially those with coexisting illnesses, but has also been frequently reported in those with mild infection. About a fifth of young adult patients also report long-haul symptoms after confirmed SARS-CoV-2 infection, indisposing them to return to their daily activities even at three weeks from the onset of symptoms or a positive test.

Such symptoms are usually not compatible with the isolation of infectious virus, but SARS-CoV-2 RNA continues to be shed in the nose and stool for weeks after the diagnosis. The persistence of the viral antigen is also suggested by the presence of specific maturing memory B cells.

The immune dysregulation that is associated with such phenomena as antigen persistence or inflammation consequent upon infection – as in chronic hepatitis B or C infection, and in HIV – is most clearly seen in the cellular immunity compartment. The main features are a steady loss of T cell effector function and loss of specific cellular immunity.

Study details

The current study aimed to explore the associations between cell-mediated immunity and the period over which COVID-19 symptoms persisted. The researchers focused on patients who were convalescing after recovering from mild to moderate COVID-19.

Among 33 patients, 14 and 19 had a short and long period of symptoms, respectively, indicating a duration of 0-8 days and 18-61 days, respectively.

Magnitude of SARS-CoV-2 specific cellular immunity

The level of SARS-CoV-2 specific cell-mediated immunity was gauged using an IFN-γ ELISPOT (Interferon-gamma enzyme-linked immune absorbent spot) assay. The results showed that prolonged symptomatology in this condition was not linked to significant changes in specific cellular immunity, overall, relative to those who had rapid symptom resolution.

Pattern of reactivity

The overall cellular immune response as well as the level of reactivity against the SARS-CoV-2 Spike, nucleoprotein (N), and membrane (M) antigens showed no difference with duration of symptoms. However, short-duration patients typically showed reactivity against these three proteins, while long-duration patients also had reactivity to ORF3a.

Prolonged symptoms were associated with a small increase in cellular immunity against SARS-CoV-2 ORF3a and ORF7a. The magnitude of the response, in terms of specific CD4+ and CD8+ T cells directed against the spike antigen of the virus, was also similar in both ordinary and long-haul patients. The transcriptome of these CD4 T cells also appeared unchanged.

No correlation with seasonal coronavirus reactivity

Cellular immunity against seasonal coronaviruses also reached significant levels and correlated with each other but did not show any change in magnitude with duration of symptoms. Older patients had lower cross-reactive immune cells, however.

There was no correlation between SARS-CoV-2 Spike protein reactivity and reactivity to seasonal coronavirus spike protein. The level of anti-spike immunity to the seasonal coronaviruses did, however, show a correlation with reactivity to the SARS-CoV-2 N antigen.

What are the implications?

The findings of this study suggest that the presence of persistent COVID-19 symptoms in mild to moderate disease has no significant effect on cell-mediated immunity against SARS-CoV-2, nor is it associated with cellular immunity against seasonal human coronaviruses. The researchers suggest that this may indicate different immune processes underlying severe COVID-19 relative to prolonged mild disease.

On the other hand, previous infection with seasonal betacoronaviruses may affect the development of anti-SARS-CoV-2 N immunity. “In addition to providing insight into the mechanisms driving the development of SARS-CoV-2 specific cellular immunity, this observation may provide guidance as to which antigens may be most amenable in the development of a universal coronavirus vaccine.”

*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:

Fang, HS, et al. (2021). Persistent COVID-19 symptoms minimally impact the development of SARS-CoV-2 specific cellular immunity. medRxiv preprint. doi:, ... 21250771v1
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Long covid: WHO calls on countries to offer patients more rehabilitation

(Published 10 February 2021

The World Health Organization has urged countries to prioritise rehabilitation for the medium and long term consequences of covid-19 and to gather information on “long covid” more systematically.

WHO has produced a standardised form to report clinical data from individual patients after hospital discharge or after their acute illness to examine the medium and long term consequences of covid-19.1 It has also set up technical working groups to build a consensus on the clinical description of what WHO now calls “the post-covid-19 condition” and to define research priorities.

Speaking at the first of a series of seminars, WHO’s director general, Tedros Ghebreyesus, highlighted the “three Rs”—recognition, research, and rehabilitation. Recognition of the post-covid-19 condition was now increasing, he said, but still not enough research was carried out. He added that countries needed to show commitment to including rehabilitation as part of their healthcare service. “Long covid has an impact on the individual, on society, and on the economy,” he warned.


Danny Altmann, an immunologist at Imperial College London, told the seminar that the NHS needed to have long covid clinics but that these raised a number of questions, including how patients would be referred and which clinical specialties would staff the clinics. He said that, in the same way as lupus, a patient may need input from many specialties including neurology, cardiology, endocrinology, and respiratory teams.

Altmann added that it was not clear whether the condition would last for months or years and that there was a “large hidden iceberg” of people who self-isolated while unwell at home but had no formal health record evidence of covid-19, as they became ill before widespread testing. “If 10-20% of the globe’s covid-19 infections lead to long covid, we have a legacy of 10-20 million long term cases to manage. This has massive ramifications for the lives of the affected and for healthcare planning,” he said.

The seminar heard about the wide range of symptoms associated with the post-covid condition, which can continue for six months or more and is most commonly found in patients who were not admitted to hospital.

Hannah Davis, a patient researcher,2 told the seminar that her study with colleagues had identified 205 symptoms in 10 organ systems among patients with long covid. The survey, which was published as a preprint at the end of December,3 included 3762 respondents from 56 countries. Most patients (91.6%) had not been admitted to hospital.

The most frequent symptoms reported after six months were fatigue, post-exertional malaise, and cognitive dysfunction. The survey found that 21% of patients were still experiencing severe symptoms after six months. Two thirds required a reduced work schedule or were no longer working owing to their illness.

Davis told the seminar, “Most patients were not hospitalised, and many did not have low oxygen levels.” She said that it was important to ask about the right symptoms, as doctors often missed neurological symptoms including cognitive dysfunction and post-exertional malaise.


↵World Health Organization. Global covid-19 clinical platform case report form (CRF) for post covid condition (Post COVID-19 CRF). 9 Feb 2021. ... d-19-crf-).
↵Patient Led Research for Covid-19. About patient-led research.
↵Davis H, Assaf G, Corkell L, et al. Characterizing long covid in an international cohort: 7 months of symptoms and their impact. medRxiv [preprint] 2020. doi:10.1101/2020.12.24.20248802.
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Some COVID-19 patients experience persistent chronic fatigue six months after infection, finds study

2/10/21 ... study.aspx

A team of scientists from Germany has recently revealed that almost 50% of patients present with moderate to severe chronic fatigue syndrome six months after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. The study is currently available on the medRxiv* preprint server.


Infection with SARS-CoV-2 is associated with a wide variety of symptoms, ranging from mild fever and cough to severe pulmonary and cardiovascular complications. Although almost 80% of coronavirus disease 2019 (COVID-19) patients remain asymptomatic or mildly symptomatic, a growing pool of evidence indicates that a significant fraction of COVID-19 patients present with persistent symptoms referred to as ‘long COVID’. Most commonly reported symptoms of long COVID are fatigue, cognitive impairment, and post-exertional malaise (worsening of symptoms after minor physical or mental exertion).

In the current study, the scientists have investigated mild to moderate COVID-19 patients who present with persistent fatigue and other related symptoms. They have also investigated whether these patients meet the diagnostic criteria for chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), which is a neurological disease characterized by severe mental and physical fatigue, chronic pain, and sleep disorder.

Study design

A total of 42 COVID-19 patients presented with moderate to severe intensity chronic fatigue, exertion intolerance, cognitive dysfunction, and pain six months after SARS-CoV-2 infection were investigated in the study. All participants were diagnosed with mild to moderate COVID-19. A team of experienced clinical immunologists, rheumatologists, neurologists, and cardiologists was involved for an accurate diagnosis of ME/CFS in these patients based on the Canadian Consensus Criteria. The intensity and duration of post-exertional malaise (symptoms lasting for more than 14 hours) was considered to be the main diagnostic criterion for ME/CCFS.

Important observations

Of all enrolled patients, 32 had mild COVID-19 and 10 had moderate COVID-19 because of pneumonia. The numbers of male and female patients were 29 and 13, respectively, and the average age of the patients was 36 years (age range: 22 – 62 years).

Of 42 enrolled patients, 19 met the diagnostic criteria for ME/CFS and were found to have severe fatigue and functional impairment, severe stress intolerance, and hypersensitivity to noise, light, and temperature. The scientists categorized these patients as Chronic COVID-19 Syndrome/Chronic Fatigue Syndrome (CCS/CFS). The rest of the patients who were not diagnosed with ME/CFS mainly because of the relatively shorter duration of post-exertional malaise (2 – 10 hours) were referred to as CCS. The patients with ME/CFS showed significantly reduced hand grip strength than those without ME/CFS.

After 6 months of SARS-CoV-2 infection, all participants were found to have fatigue with different intensities. The most commonly observed symptoms were post-exertional malaise, cognitive impairment, and muscle pain. Although patients without ME/CFS exhibited less severe symptoms, most of them had severely impaired daily life activities. The majority of enrolled patients (n=28) were either unable to work or required a reduced work schedule because of post-COVID-19 symptoms.

In the study cohort, autonomic dysfunction was observed in most of the patients, with no significant difference in symptom intensity between patients with and without ME/CFS. The increase in systolic and diastolic blood pressure at standing position was significantly lower in patients with ME/CFS than those without it. Among patients with ME/CFS, four were diagnosed with postural tachycardia syndrome.

Regarding biochemical parameters, only two patients in the entire study cohort showed mildly elevated C-reactive protein levels, indicating the absence of robust inflammatory response. Almost 50% of patients showed increased levels of interleukin 8 (IL-8), which is a clinical feature of severe COVID-19 patients. Moreover, a low level of mannose-binding lectin was observed in 22% of patients, indicating impaired immune functioning. An indication of autoimmune disorder was noticed in the study cohort as elevated levels of antinuclear antibody were found in 3 ME/CFS patients and 6 non-ME/CFS patients.

Study significance

The study reveals that even mildly affected COVID-19 patients can develop a severe chronic syndrome characterized by moderate to severe fatigue and exertion intolerance. Because most of the post-COVID symptoms considered in this study did not differ significantly between patients with and without ME/CFS, the scientists suggest that chronic COVID-19 syndrome is a more appropriate terminology than ME/CFS in defining long-term symptoms related to SARS-CoV-2 infection.

*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:

Kedor C et al. 2021. Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study. MedRxiv. doi:, ... 21249256v1
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Coronavirus Leaves Fall River Mother With Long Road To Recovery

2/15/21 ... umagualle/

BOSTON (CBS) — Denisse Pumagualle of Fall River just had her last at-home physical therapy session on Monday. She has been recovering from her battle with coronavirus for months.

After testing positive for COVID-19 in November, Pumagualle lost feeling in her legs. Doctors diagnosed her with Guillain-Barre syndrome.

“I recovered from corona, and then my excessive antibodies attacked my nervous system,” Pumagualle explained.

At first, Pumagualle thought she thought she had the flu. “The first week I had chills, I had a fever, a runny nose. I finally went to the doctor’s on Thursday, the 19th because the night before I had a high fever, my whole body was aching, I couldn’t even touch my forehead without wanting to cry,” she said. “The doctor right away said to do a COVID test because of all the symptoms I was showing and the fact that my daughter was already sick [with COVID].”

“It was hard for me to just sit up in the morning without having to catch my breath. It was like I applied things that I had learned through when I pregnant, I couldn’t get up right away because morning sickness would hit so with this, I had to do the same open my eyes, stay there for a little bit, sit up and I had to gasp for air. I couldn’t walk up a few steps without being out of breath.”

Pumagualle dealt with symptoms for a month. She had gone to the emergency room twice and ended up in a hospital because she was having trouble walking.

Beyond it being difficult to walk, Pumagualle was concerned by her exhaustion and a pinching feeling in her lungs. The virus took a mental toll as well.

“I was frustrated. I was overwhelmed. I felt trapped because it’s not only physically that this messes with you but also mentally so I felt I couldn’t take care of myself and my daughter at the same time. I felt I was just about getting better and then going backwards.”

Pumagualle said physical therapy has helped but doctors said she could feel GBS symptoms for two to three months.
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Opera singers help COVID-19 patients learn to breathe again

2/16/21 ... the-again/

LONDON — On a recent afternoon, the singing coach Suzi Zumpe was running through a warmup with a student. First, she straightened her spine and broadened her chest, and embarked on a series of breath exercises, expelling short, sharp bursts of air. Then she brought her voice into action, producing a resonant hum that started high in a near-squeal, before sinking low and cycling up again. Finally, she stuck her tongue out, as if in disgust: a workout for the facial muscles.

The student, Wayne Cameron, repeated everything point by point. “Good, Wayne, good,” Zumpe said approvingly. “But I think you can give me even more tongue in that last bit.”

Although the class was being conducted via Zoom, it resembled those Zumpe usually leads at the Royal Academy of Music, or Garsington Opera, where she trains young singers.

But Cameron, 56, isn’t a singer; he manages warehouse logistics for an office-supplies company. The session had been prescribed by doctors as part of his recovery plan after a pummeling experience with COVID-19 in March.

Called ENO Breathe and developed by the English National Opera in collaboration with a London hospital, the six-week program offers patients customized vocal lessons: clinically proven recovery exercises, but reworked by professional singing tutors and delivered online.

While few cultural organizations have escaped the fallout of the pandemic, opera companies have been hit especially hard. In Britain, many have been unable to perform in front of live audiences for almost a year. While some theaters and concert venues managed to reopen in the fall for socially distanced shows between lockdowns, many opera producers have simply gone dark.

But the English National Opera, one of Britain’s two leading companies, has been trying to redirect its energies. Early on, its education team ramped up its activities, and the wardrobe department made protective equipment for hospitals during an initial nationwide shortage. In September, the company offered a “drive-in opera experience,” featuring an abridged performance of Puccini’s “La Bohème” broadcast over large screens in a London park. That same month, it started trialing the medical program.

In a video interview, Jenny Mollica, who runs the English National Opera’s outreach work, explained that the idea had developed in the summer, when “long COVID” cases started emerging: people who have recovered from the acute phase of the disease but still suffer effects such as chest pain, fatigue, brain fog and breathlessness.

“Opera is rooted in breath,” Mollica said. “That’s our expertise. I thought, ‘Maybe ENO has something to offer.’”

Tentatively, she contacted Dr. Sarah Elkin, a respiratory specialist at one of the country’s biggest public hospital networks, Imperial College NHS Trust. It turned out that Elkin and her team had been racking their brains, too, about how to treat these patients long term.

“With breathlessness, it can be really hard,” Elkin explained in an interview, noting how few treatments for COVID exist, and how poorly understood the illness’s aftereffects still were. “Once you’ve gone through the possibilities with drug treatments, you feel you don’t have a lot to give people.”

Elkin used to sing jazz herself; she felt that vocal training might help. “Why not?” she said.

Twelve patients were initially recruited. After a one-on-one consultation with a vocal specialist to discuss their experience of COVID-19, they took part in weekly group sessions, conducted online. Zumpe started with basics such as posture and breath control before guiding participants through short bursts of humming and singing, trying them out in the class and encouraging them to practice at home.

The aim was to encourage them to make the most of their lung capacity, which the illness had damaged, in some cases, but also to teach them to breathe calmly and handle anxiety — an issue for many people working through long COVID.

When Cameron was asked if he wanted to join, he was bemused. He recalled: “I thought, ‘Am I going to be the next Pavarotti?’”

But COVID-19 had left him feeling battered, he said; after he was discharged from hospital, he had had to make several visits to the emergency room, and was prescribed months of follow-up treatment for blood clots and respiratory issues. “Everything I did, I was struggling for air,” he said.

He added that even a few simple breathing exercises had quickly made a huge difference. “The program really does help,” he said. “Physically, mentally, in terms of anxiety.”

Almost as important, he added, was being able to share a virtual space and swap stories with other sufferers. “I felt connected,” he said.

Alongside the weekly classes, he and the other participants were given access to online resources including downloadable sheet music, refresher videos — filmed on the English National Opera’s main stage — and calming Spotify playlists.

For the singing element, the tutors had the idea of using lullabies drawn from cultures around the world — partly because they are easy to master, said Zumpe, partly because they’re soothing. “We want to build an emotional connection through the music, make it enjoyable,” she said. “It’s not just physical.”

And how was Cameron’s singing now? He laughed. “I’m more in tune,” he said. The program had helped him reach high notes when singing along in the car, he added. “Having learned the technique, you can manage much better,” he said.
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

30-year-old woman describes a year of living with COVID-19

updated 2/17/21 ... -covid-19/

Kaitlin Denis, on approaching Year 2 of living with COVID-19.

I caught this virus before anyone had even died in Illinois. That was like a century ago, right? Now we’re talking about Year 2, vaccines, new variants, a new administration, but for me it’s still exactly the same. I’m always in this bed. I’m always in this room. I’ve been sick for the last 330 days. I force myself to keep track because otherwise time doesn’t move. I feel like I’m in jail and putting tally marks on the wall.

I used to go to sleep thinking: Tomorrow. Tomorrow I’ll start to feel better. I don’t really do that as much anymore. I’m trying to come to terms with the fact that this virus isn’t something I’m about to get over. This might be it. Maybe this is who I am.

I wake up every morning, and I brace myself. What’s it going to be today? I’m what they call a “long-hauler,” where COVID-19 takes over your body and won’t go away. Doctors think there might be tens of thousands of us, but nobody really knows. It’s a medical mystery. It’s like a random grab bag of symptoms. You reach in, and you never know what you’re going to get. How about some nausea and severe dizziness? Or would you prefer a migraine with a side of joint pain? Some issues are constant, like body aches and head-to-toe fatigue, but the weirder ones seem to randomly come and go: ringing ears, sore ribs, heart palpitations, ear popping, numbness in my fingers, excessive mouth watering, lightheadedness, brain fog. My memory loss is so bad sometimes that it’s like I have amnesia. The other day, I woke up and wanted to put on running clothes. In my head, I thought I was going for a jog and then heading in to work, but as soon as I stood up, my heart rate started spiking, and it was like: Oh yeah. I can’t even walk around the block by myself. I don’t have a job anymore. I’m on disability. What am I thinking?

A lot of times I hardly get out of bed. The day never starts or the night never ends. It’s a black hole. I wait for the hours to pass.

I’ve withdrawn from pretty much everyone. I get the feeling sometimes that people think I’m being dramatic. I can’t really explain what’s happening to me, and neither can doctors. Some of them want to put me on antidepressants or send me to counseling because medically, none of this makes sense. I’m barely 30. I just got married. Ten years ago, I was playing Division I college soccer, and now I can’t go to the grocery store unless I ride around in one of those scooters. It’s like: Really? Really? It seems pathetic to people. It seems pathetic to me.

COVID-19 was barely on my radar when I first got sick in early March. Nobody wore masks. Chicago hadn’t locked down yet. I got a headache and a sore throat, but I tried to gut through it. I work in finance, and it’s that Wall Street culture of hand-to-hand combat. You’re either at work or you’re on your deathbed, and that suits me. I’m competitive. My husband jokes that I have that killer mentality. I don’t like to slow down. I practically go crazy waiting in line at Starbucks behind people who don’t know what to order. “Seriously? Let’s go! The menu is always the same!” I like a fast pace. I kept working the usual long hours until my fever spiked, then my husband started having symptoms, too. I called the Northwestern University COVID-19 hotline. They told me to go to the ER, but the ER said they didn’t have any tests. They told me to assume that I had it. They gave me painkillers and sent me home.

It was rough for my husband and me. We needed a steroid inhaler to help with our breathing. We ordered tons of Gatorade, and we didn’t leave the apartment for the first 20 days. We’d argue about who had to get out of bed to feed the dogs. But then after a few weeks, my husband started to feel better. He was going for runs again. He said: “Come on. At least come for a walk with me.” I tried. I tried to fake my way through. You get sick and you’re supposed to get better. That’s what happens. There was no other possibility in my mind. I went back to working remotely, but I couldn’t focus. I was so tired that I’d lie in bed and move my mouse so it looked like my computer screen was active. I’ve had concussions playing soccer, and it was that same kind of fogginess where your mind drifts off and you just stare at the wall. There was so much pressure in my head that it felt like I was hanging upside down. I was making a ton of silly mistakes in my job. Sometimes, when I would place large trades over the phone, I would forget what I was doing in the middle of the call. I’d mix up the day of the week. I was like: “OK. Something’s seriously wrong. Why am I not getting better?”

I’ve seen more doctors these last six months than I did for the first 30 years of my life. There’s hardly anybody that specializes in these symptoms yet. I have to be my own advocate, and it’s exhausting. I do my own research in COVID-19 forums online. I think I might have something called dysautonomia, where your brain stops telling the body how to do normal functions, but only a few doctors study that, and the wait-list for an appointment is more than two years. I managed to get in to see an internist in Chicago, but he sent me back to the emergency room, so that didn’t help. I found a rheumatologist, and she referred me to another rheumatologist, who sent me to a specialist out of state, and then he referred me to a cardiologist instead. I’m going around in circles looking for any kind of answer, but mostly it seems like they’re guessing. I’ve been told I might have Lyme disease, or something called POTS syndrome, or chronic fatigue, or fibromyalgia, or anxiety and depression. I have this big pillbox now, and a lot of the medications are still experimental, so we have to pay for them out of pocket. I take two antidepressants, vitamin D and a whole bunch of other stuff. My husband keeps track of the medications because it’s too much for me. He worked a connection to get me in to see a neuroinfectious-disease doctor. He assessed me and gave me a cognitive test, which I failed. He said 10% of people who get COVID-19 might end up having long-lasting neurological effects from this virus. He said: “It might be years before we fully understand it.”

If nobody knows what’s wrong, how do I get better? My vitals are usually normal. My lung scans look fine. My bloodwork turns out to be OK.

It sounds crazy, right? Am I crazy? I definitely have that psychological battle where I start to doubt everything. Could it all be in my head? I’ll tell myself I need to try harder. I’ll force myself out of bed, but then I get in the shower and the hot water turns my hands purple. My heart rate spikes. I get so dizzy I have to sit down.

I need help with everything. I can’t really drive. My husband and I moved out to the suburbs to be near my parents, and I have this great support system, but honestly, I feel like a burden. My husband is the full-time worker, full-time caretaker, full-time housekeeper. He’s been amazing, but we’re supposed to be starting our lives together, and now he has a little walkie-talkie to remind me about my medicine. He checks on me every hour, and meanwhile, I’m like this helpless 10-year-old just lounging in bed. The boredom is constant. I play some video games. I look online at house décor. One doctor told me arts and crafts could be a good way to keep my hands active, so that’s how I got through the holidays. On Halloween, I sat in bed and decorated paper pumpkins. I drew little scarecrows and taped them up on the wall. “Good work, Kaitlin! You’re using your brain. You should be so proud!”

It’s guilt. It’s anger and self-loathing. I have therapy once a week, and it helps. We’ve talked a lot about acceptance. I’m trying to accept that I’m not going to wake up one day feeling all better. I’m trying to let go of my expectations, but there’s grief in that. It feels like surrender.
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Learning to live again: A Lazarus tale from the Covid front lines

2/26/21 ... lines.aspx

The twinkle in his eyes, the delight in his smile, the joyous way he moved his disease-withered frame. They all proclaimed a single, resounding message: Grateful to be alive!

"As my care team and my family tell me, 'You were born again. You have to learn to live again,'" said Vicente Perez Castro. "I went through a very difficult time."

Hell and back is more like it.

Perez, a 57-year-old cook from Long Beach, California, could barely breathe when he was admitted on June 5 to Los Angeles County's Harbor-UCLA Medical Center. He tested positive for Covid-19 and spent three months in the intensive care unit, almost all of it hooked up to a ventilator with a tube down his throat. A different tube conducted nutrients into his stomach.

At a certain point, the doctors told his family that he wasn't going to make it and that they should consider disconnecting the lifesaving equipment. But his 26-year-old daughter, Janeth Honorato Perez, one of three children, said no.

And so, on a bright February morning half a year later, here he was — an outpatient, slowly making his way on a walker around the perimeter of a high-ceilinged room at Rancho Los Amigos National Rehabilitation Center in Downey, one of L.A. County's four public hospitals and the only one whose main mission is patient rehab.

Perez, who is 5-foot-5, had lost 72 pounds since falling ill. His legs were unsteady, his breathing labored, as he plodded forward. But he kept moving for five or six minutes, "a huge improvement" from late last year, when he could walk only for 60 seconds, said Bradley Tirador, one of his physical therapists.

Rancho Los Amigos has an interdisciplinary team of physicians, therapists and speech pathologists who provide medical and mental health care, as well as physical, occupational and recreational therapy. It serves a population that has been disproportionately affected by the pandemic: 70% of its patients are Latino, as are 90% of its Covid patients. Nearly everyone is either uninsured or on Medi-Cal, the government-run insurance program for people with low incomes.

Rancho is one of a growing number of medical centers across the country with a program specifically designed for patients suffering the symptoms that come in the wake of Covid. Mount Sinai Health System's Center for Post-Covid Care in New York City, which opened last May, was one of the first. Yale University, the University of Pennsylvania, UC Davis Health and, more recently, Cedars-Sinai Medical Center in Los Angeles are among the health systems with similar offerings.

Rancho Los Amigos treats only patients recovering from severe illness and long stays in intensive care. Many of the other post-Covid centers also tend to those who had milder cases of Covid, were not hospitalized and later experienced a multitude of diffuse, hard-to-diagnose but disabling symptoms — sometimes described as "long Covid."

The most common symptoms include fatigue, muscle aches, shortness of breath, insomnia, memory problems, anxiety and heart palpitations. Many health care providers say these symptoms are just as common, perhaps more so, among patients who had only moderate Covid.

A survey conducted by members of the Body Politic Covid-19 Support Group showed that, among patients who'd experienced mild to moderate Covid, 91% still had some of those symptoms an average of 40 days after their initial recovery.

Other studies estimate that about 10% of Covid patients will develop some of these prolonged symptoms. With more than 28 million confirmed cases in the U.S. and counting, this post-Covid syndrome is a rapidly escalating concern.

"What we can say is that 2 [million] to 3 million Americans at a minimum are going to require long-term rehabilitation as a result of what has happened to this day, and we are just at the beginning of that," said David Putrino, director of rehabilitation innovation at Mount Sinai Health.

Health care professionals seem guardedly optimistic that most of these patients will fully recover. They note that many of the symptoms are common in those who've had certain other viral illnesses, including mononucleosis and cytomegalovirus disease, and that they tend to resolve over time.

"People will recover and will be able to get back to living their regular lives," said Dr. Catherine Le, co-director of the Covid recovery program at Cedars-Sinai. But for the next year or two, she said, "I think we will see people who don't feel able to go back to the jobs they were doing before."

Rancho Los Amigos is discussing plans to begin accepting patients who had mild illness and developed post-Covid syndrome later, said Lilli Thompson, chief of its rehab therapy division. For now, its main effort is to accommodate all the severe cases being transferred directly from its three public sister hospitals, she said.

The most severely ill patients can have serious neurological, cardiopulmonary and musculoskeletal damage. Most — like Perez — have lost a significant amount of muscle mass. They typically have "post-ICU syndrome," an assortment of physical, mental and emotional symptoms that can overlap with the symptoms of long Covid, making it difficult to tease out how much of their condition is a direct impact of the coronavirus and how much is the more general impact of months in intensive care.

The large, rectangular rehab room where Perez met with his therapists earlier this month is half-gym, half-sitcom set. Part of the space is occupied by weights, video-linked machines that help strengthen hand control and high-tech treadmills, including one that reduces the pull of gravity, enabling patients who are unsteady on their feet to walk without falling. "We tell patients, 'It's like walking on the moon,'" Thompson said.

At the other end of the room sits a large-screen TV and a low couch, which helps people practice standing and sitting without undue stress. In a bedroom area, patients relearn to make and unmake their beds. A few feet away, a small office space helps them work on computer and telephone skills they may have lost.

Because Perez was a cook at a hotel restaurant before he fell ill, his occupational therapy involves meal preparation. He stood at the sink, rinsing lettuce, carrots and cucumbers for a salad, then took them over to a table, where he sat down and chopped them with a sharp knife. His knife hand trembled perilously, so occupational therapist Brenda Covarrubias wrapped a weighted band around his wrist to steady him.

"He is working on getting back the skills and endurance he needs for his work, and just for routine daily activities like walking the dogs and walking up steps," Covarrubias said.

Perez, who immigrated to the U.S. from Guadalajara, Mexico, nearly two decades ago, was upbeat and optimistic, even though his voice was faint and his body still a shell of its former self.

When his speech therapist, Katherine Chan, removed his face mask for some breathing exercises, he pointed to the mustache he'd sprouted recently, cheerfully exclaiming he had trimmed it himself. And, he said, "I can change my clothes now."

Weeks earlier, Perez had mentioned how much he loved dancing before he got sick. So they made it part of his physical therapy.

"Vicente, are you ready to bailar?" Kevin Mui, a student physical therapist, asked him, as another staff member put on a tune by the Colombian cumbia band La Sonora Dinamita.

Slowly, shakily, Perez rose. He anchored himself in an upright position, then began shuffling his feet from front to back and side to side, hips swaying to the rhythm, his face aglow with the sheer joy of being alive.
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

Children’s Hospitals Grapple With Young Covid ‘Long Haulers’

3/3/21 ... hospitals/

A slumber party to celebrate Delaney DePue’s 15th birthday last summer marked a new chapter — one defined by illness and uncertainty.

The teen from Fort Walton Beach, Florida, tested positive for covid-19 about a week later, said her mother, Sara, leaving her bedridden with flu-like symptoms. However, her expected recovery never came.

Delaney — who used to train 20 hours a week for competitive dance and had no diagnosed underlying conditions — now struggles to get through two classes in a row, she said. If she overexerts herself, she becomes bedridden with extreme fatigue. And shortness of breath overcomes her in random places like the grocery store.

Doctors ultimately diagnosed Delaney with COPD — a chronic lung inflammation that affects a person’s ability to breathe — said Sara, 47. No one has been able to pinpoint the cause of her daughter’s decline.

“There’s just no research there,” she said. “Kids are not supposed to have this kind of condition.”

While statistics indicate that children have largely been spared from the worst effects of covid, little is known about what causes a small percentage of them to develop serious illness. Doctors are now reporting the emergence of downstream complications that mimic what’s seen in adult “long haulers.”

In response, pediatric hospitals are creating clinics to provide a one-stop shop for care and to catch any anomalies that could otherwise go unnoticed. However, the treatment offered by these centers could come at a steep price tag to patients, health finance experts warned, especially given that so much about the condition is unknown.

Nonetheless, the increasing number of patients like Delaney is leading to a more structured follow-up plan for kids recovering from covid, said Dr. Uzma Hasan, division chief of pediatric infectious diseases at St. Barnabas Medical Center in New Jersey.

“The cost of missing these children means a horrible event,” she said.

Unanswered Questions

More than 3 million children and young adults had tested positive for covid in the United States as of Feb. 18, the American Academy of Pediatrics and the Children’s Hospital Association report. Most of these kids experience mild, if any, symptoms.

Over the course of the pandemic, though, it has become apparent that some children develop serious and potentially long-term problems.

The most well-known of these complications is called “multisystem inflammatory syndrome in children,” or MIS-C. Symptoms — which include high fever, a skin rash and stomach pain — can appear up to a month after getting covid. Around 2,000 cases have been identified in the United States. Black and Hispanic children make up a disproportionate share: 69%.

But clinicians also said they’re increasingly hearing of children seeking help for different complications, such as fatigue, shortness of breath and loss of smell, that don’t go away.

Clinics for Child Long Haulers

At Norton Children’s Hospital in Louisville, Kentucky, clinicians set up a clinic in October after receiving calls from area pediatricians who had patients with long-haul symptoms.

No one knows how often children develop these symptoms, how many already have the illness or even what to name it, said Dr. Kris Bryant, president of the Pediatric Infectious Diseases Society, who works at the hospital.

The children see an infectious diseases doctor who then refers them or orders tests as necessary.

So far, the clinic has seen about 25 patients with a wide range of symptoms, said Dr. Daniel Blatt, a pediatric infectious diseases specialist involved with the clinic. Because covid mimics symptoms associated with a variety of other illnesses, he said, part of his job is to rule out any other possible causes.

“Because the virus is so new,” Blatt said, “there’s a presumption that everything is covid.”

Similarly, an ad hoc clinic for other young patients has been set up within the cardiology department at the Children’s Hospital & Medical Center in Omaha, Nebraska. Patients are screened to assess the heart’s structure and how it functions. She said they’ve been seeing six to eight patients per week.

“The question I can never answer for the parents,” said Dr. Jean Ballweg, a pediatric cardiologist at the hospital who also works at the clinic, “is why one child and not another?”

So far, Ballweg said, she’s seen no published literature on the heart health of children who develop these symptoms after recovering from covid. By standardizing how doctors in the clinic collect data and treat patients, Ballweg said, she hopes the information will provide some clues as to how the virus affects a child’s heart. “Hopefully, we can look at the collective experience and recognize patterns and provide better care.”

University Hospitals Rainbow Babies & Children’s Hospital in Cleveland is involved in creating a multidisciplinary clinic that will consolidate care by giving patients access to specialists and integrative medicine like acupuncture.

Clinicians saw a need for the unit after teenagers with post-covid symptoms began arriving at the hospital system’s clinic for adults with long-haul symptoms, said Dr. Amy Edwards, a pediatric infectious diseases specialist at the hospital involved with the project. So far, she said, she’s heard of about eight to 10 children who could need care.

The clinic, yet to open, intends to recruit more children through announcements, said Edwards. Identifying the right patient for the clinic will be complicated, she added. There’s no test to check for post-covid symptoms and there’s no agreed-on definition for the condition. Doctors also don’t know whether some symptoms can be cured, she said, or last a lifetime.

“The question is if we’re going to be able to do anything about it,” Edwards said.

‘I Don’t Know’ Is a Difficult Answer

Even Dr. Abby Siegel, a 51-year-old pediatrician who works in Stamford, Connecticut, couldn’t find answers for her daughter. Siegel tested positive for the virus last March after being exposed at work. She believes she passed on the virus to her husband and their then-17-year-old daughter, Lauren.

The family recovered by early April, but then both Siegel’s daughter and husband took a turn for the worse. Lauren — who played rugby — started feeling fatigued, shortness of breath and a racing heart rate. Siegel took her to multiple specialists — including a friend who is a cardiologist — all of whom doubted her.

Lauren, now 18, receives care at Mount Sinai Hospital’s adult covid care center and is improving. Siegel said the clinic has affirmed her daughter’s experience and helped her get more information about this condition. She wishes the doctors they had visited earlier had been more honest about the unknowns surrounding post-covid health problems.

“It’s amazing how we’re met with the denial rather than the ‘I don’t know,’” she said.

There’s another wrinkle that often comes with the I-don’t-know response.

The uncertainty swirling around these symptoms in children will likely require clinicians to run a battery of tests — procedures that could potentially cost their families a lot of money, said Glenn Melnick, a health economist and professor at USC Sol Price School of Public Policy. Pediatric hospitals usually have little regional competition, he said, allowing them to charge more for their specialized services.

For families without comprehensive health insurance or who face high deductibles, many tests could mean big bills.

Gerard Anderson, a professor of health policy and management at Johns Hopkins University, said these clinics’ potential profitability hinges on several factors. If a clinic serves a large enough area, it could attract enough patients to earn substantial dollars for the affiliated pediatric hospital. A child’s health care coverage plays a role as well — those who are privately insured are more lucrative patients than those covered by public programs like Medicaid, but only as long as the family can shoulder the financial burden.

“If I had a kid who had this problem,” said Anderson, “I’d be very concerned about my out-of-pocket liability.”
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Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

How common are post-acute sequelae of SARS-CoV-2 infection?

3/13/21 ... ction.aspx

The coronavirus disease 2019 (COVID-19) pandemic has taken a heavy toll on human lives, with over two million casualties so far. Equally devastating has been its economic toll. Now, a new study, which was released on the medRxiv* preprint server, describes the features and frequency of long-haul symptoms in COVID-19.

Prolonged sequelae of COVID-19

The percentage of patients who suffer prolonged symptoms, also called post-acute sequelae of SARS-CoV-2 infection (PASC), is unclear. The most common symptoms include severe tiredness, shortness of breath (SOB), persistent anosmia and dysgeusia, and cognitive impairment. However, diagnostic criteria have not yet been developed, leading to prevalence estimates from 13% to 87%.

The first figure includes cases with symptoms persisting for four weeks or more from the time of diagnosis. The second comes from hospitalized patients who continue to have symptoms after 60 days from the onset of symptoms.

Other unknowns include the association between increasing age, female sex, severity of disease, the presence of specific comorbidities, and PASC.

The current study aims to address population-based estimates of PASC in Michigan, with its demographic and clinical risk factors.

Study details

The study subjects were in the Michigan COVID-19 Recovery Surveillance Study (MI CReSS). All had been diagnosed with COVID-19 following a positive polymerase chain reaction (PCR) test. The scientists sampled about 600 subjects with disease onset on or before April 15, 2020, as determined by the onset of symptoms, a positive PCR, or referral to the health department.

Over half the subjects were females, while almost 70% were aged 45 years or older. Almost half were non-Hispanic whites, and just over a third were Black.

Obesity was reported in over half, with 43% having high blood pressure, a quarter diabetes, 17% asthma, and just over a tenth cardiovascular disease.

About 40% had severe disease, while over a quarter had very severe illness. About a third had mild to moderate disease; a third required hospitalization, and a tenth intensive care.

What were the results?

Over half (53%) and one-third (35%) of patients had symptoms at 30 and 60 days post-onset, respectively. Older patients and those with more severe illness had a higher prevalence of PASC, but even those aged 18-34 years had significant prevalence, at 35% and 20%, after 30 and 60 days, respectively.

About a third and a quarter of patients with mild COVID-19 also had PASC at 30 and 60 days, respectively. Among non-hospitalized patients, the figures were 44% and 27%, respectively.

Among those with persistent symptoms by 60 days post-onset, over half had tiredness, and 44% reported SOB.

Risk factors for long-haul symptoms

In unadjusted models, advancing age, Hispanic ethnicity, and low annual household income (less than $75,000 a year) seemed to be associated with a higher prevalence of PASC at 30 and 60 days. For instance, subjects aged 55-64 years appeared to have twice the prevalence of PASC at 60 days compared to those aged 18-34 years.

When adjusted for demographic factors, other illnesses and the severity of illness, some of these apparent risk factors lost their significance. However, those with a psychological illness had a 42% higher prevalence at 60 days. In addition, those with a lower household income had a 40% higher risk at 30 days.

The most important risk factor was severity of illness. Those with very severe symptoms were 2.25 times more likely to have PASC at 30 days and 1.7 times more likely to have symptoms at 60 days, compared to those with mild symptoms.

Hospitalization conferred an increased risk of about 40% at 30 and 60 days. Among non-hospitalized patients, those with cardiovascular disease had a 54% higher prevalence of PASC at 30 days, though this was not obvious in the whole sample.

Among the non-hospitalized cohort, some substantial differences in 60-day PASC risk factors were observed. For one, psychological illness was not a risk factor at this point, but a history of chronic obstructive pulmonary disease (COPD) increased PASC prevalence. In addition, symptom severity was not a marker for the risk of PASC at this point.

What are the implications?

The study pioneers prevalence estimates among a geographically defined cohort, including all cases of COVID-19. Its finding of a 53% PASC prevalence at 30 days reflects the reported prevalence among Faroe Islanders at 125 days post-onset (in a non-hospitalized cohort).

However, the prevalence at 60 days in the current study is much lower, at 35%, perhaps because of the difference in the study cohorts.

Severity of illness was a major predictor of PASC risk. Surprisingly, a quarter of those with mild to moderate illness had a significant risk of such symptoms on day 60 post-onset.

Symptomatic but non-hospitalized cases also have a high risk of PASC at both 30 and 60 days. The higher risk among Black individuals would appear to be primarily because they are at higher risk of COVID-19 in the first place and not because they develop more severe disease. The higher rates of disease would drive a more adverse outcome overall.

Increased disease severity due to a higher viral load may drive the development of PASC. Individuals from low-income settings are more often exposed to a higher dose of the virus, as they are more likely to be essential workers who cannot work from home, live in crowded homes, use public transit, and often do not have access to suitable personal protective equipment. This could explain why these individuals are at a greater risk of PASC.

With increasing severity of illness, the patient is more likely to be experiencing dysregulated and severe inflammation. This prolongs the period of recovery and worsens the damage to various tissues and organs. The relationship between the viral load, the immune response, the severity of disease and the risk of PASC needs to be explored in greater detail.

COVID-19 continues to affect millions each day. “Although we are still attempting to control COVID-19 spread and treat acute illness, we cannot postpone developing robust efforts to characterize and treat PASC, which may potentially affect millions of COVID-19 survivors worldwide.”

*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:

Hirschtick, J. L. et al. (2021). Population-based estimates of post-acute sequelae of SARS-CoV-2 infection (PASC) prevalence and characteristics: A cross-sectional study. medRxiv preprint. doi:, ... 21252905v1
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Joined: Fri Jun 26, 2020 5:22 am

Re: Post-COVID Clinics / Long Haulers

Post by trader32176 »

COVID-19 survivors experience symptoms up to 10 months after infection, study finds

3/15/21 ... finds.aspx

Coronavirus disease (COVID-19) symptoms are increasingly recognized to persist among a subset of individuals following acute infection, but features associated with this persistence are not well-understood.

Previous reports showed that some patients who recover from COVID-19 report chronic symptoms, including headaches, fatigue, cough, and weakness. Some individuals report neurological and psychiatric effects, such as memory problems, brain fog, and depression.

Researchers at the Massachusetts General Hospital and Harvard Medical School aimed to identify individual features that predicted the persistence of symptoms over at least two months.

The study findings, which appeared on the pre-print server medRxiv*, showed that COVID-19 survivors experience symptoms up to 10 months after infection.

Background of the study

Postviral syndromes after outbreaks have been noted for more than a century. COVID-19 appears to be no exception, as many survivors report persistent symptoms even after recovering.

Some people report symptoms that persist for more than two months, with some reporting symptoms at least six months later.

In a study conducted, 87 percent of people with COVID-19 had at least one persistent symptom. In contrast, at six months after hospitalization, another study found that 63 percent of the patients experienced weakness or fatigue, and 26 percent had sleep disturbance.

The researchers of the current study aimed to determine the extent of persistent symptoms in people who have recovered from COVID-19. They also want to determine how long these symptoms persist.

The study

To arrive at the study findings, the researchers used data from a multi-wave United States survey that includes questions about COVID-19.

“We aimed to identify individual features that predicted persistence of symptoms over at least two months at the time of survey completion,” the team explained.

The researchers used ten waves of an online survey between June 13, 2020, and January 10, 2021, across 50 states and the District of Columbia. The waves included about 124,962 individuals.

Of these, 6,211 people reported symptomatic COVID-19 illness confirmed by a positive test or clinical diagnosis. About 4,946 people have recovered within less than two months, while 7.9 percent experienced persistent symptoms for more than two months.

The team also found that of the entire group, 3.4 percent had symptoms for four months or more, while 2.2 percent had persistent symptoms for more than six months. The team revealed that older age was tied to a greater risk of persistence of symptoms based on the data analyses.

When a patient had headaches, it has been tied to a greater likelihood of symptom persistence.

The study findings provide additional evidence that some people who recover from COVID-19 experience long-lasting and persistent symptoms.

“Notably, persistent symptoms are not strongly associated with any individual sociodemographic group; however, individual symptoms and greater overall acuity identify individuals at greater risk for persistence,” the team explained.

They added that the study results might help in risk stratification to determine those who are more likely to have persistent symptoms. Clinicians and health workers may also monitor these patients for follow-up.
COVID-19 pandemic toll

The COVID-19 pandemic is far from over. Worldwide, over 119 million infections are reported, and over 2.63 million lives have been lost.

The United States reports the highest number of reported infections, topping 29.4 million, with a death toll of over 534,000.

The other countries with a skyrocketing number of cases include Brazil, with 11.48 million cases; India with 11.35 million; Russia with 4.34 million; the United Kingdom with 4.27 million; and France with 4.1 million.

*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.

COVID-19 Dashboard by the Center for Systems Science and Engineering (CSSE) at Johns Hopkins University (JHU) - ... 7b48e9ecf6

Journal reference:

Perlis, H., Green, J., Santillana, M. et al. (2021). Persistence of symptoms up to 10 months following acute COVID-19 illness. medRxiv. ... 21253072v1
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