Long Covid

Written by  //  March 15, 2024  //  Health & Health care, Public Policy, Québec  //  1 Comment

COVID Long-Haulers Support Group Canada (Facebook)
Body Politic COVID-19 support group
STAT – Reporting from the frontiers of health and medicine
Mayo Clinic: COVID-19 Long-term effects
CBC Covid Long haulers in news

Gov. of Quebec: Long COVID
The most common symptoms having a major impact on daily functioning include:
disabling, persistent fatigue
worsening of symptoms following exertion that was once well-tolerated – post-exertional malaise
memory impairment
difficulty thinking or concentrating
shortness of breath
Other reported symptoms that may be associated with long COVID (non-exhaustive list) include:
Cardiorespiratory symptoms: shortness of breath
Gastro-intestinal symptoms: abdominal pain (gut pain)
Musculoskeletal symptoms: muscle pain, joint pain
Neurological symptoms: disturbed sleep, impaired senses (sight, etc.), speech and language problems
13 October 2022
Q&A with a doctor in one of Canada’s long COVID clinics on the real dangers of the diagnosis
“I’ve seen marathon runners who can’t walk a block without being short of breath”
Tara De Boer
(Maclean’s) The lockdown era of the COVID-19 pandemic is—hopefully—over for good, but even as the last of the mask mandates are dropped, many Canadians are still in it for the long haul. Long COVID, which occurs when symptoms of the virus persist four to 12 weeks after infection, has been linked to everything from brain fog to insomnia and even organ damage. Doctors are only now beginning to understand the full scope of the condition.
Dr. Angela Cheung, a senior physician scientist with Toronto’s University Health Network, recently helped to establish 18 long-COVID clinics across five provinces to provide care for Canada’s long haulers—and to map out what they’re in for. Here, she explains the extent of long COVID’s damage, how it’s burdening the already inundated health-care system and why it’s not all in your head.
Referral clinic for Long COVID and Lyme disease
CIUSSS West-Central Montreal has opened a clinic for patients with persistent symptoms of COVID-19 and Lyme disease.
Most people who enter the acute phase of COVID-19 recover in two to four weeks. However, some experience persistent symptoms over a longer period (a few weeks to several months). … Research and knowledge about treating this illness—known as Long COVID syndrome—is emerging and rapidly evolving.
The clinic offers multidisciplinary care to patients with persistent symptoms of COVID-19 or Lyme disease. The complexity of these two diseases requires the expertise of those in several specialties. Therefore, medical and/or rehabilitation services based on each patient’s individual needs are provided by nurses, specialized physicians and allied health professionals (physiotherapy, social work) in a face-to-face or virtual setting. The specialized clinic allows for an integrated multidisciplinary follow-up to treat patients who have this new pathology or who have Lyme disease.
The clinic is located at the Jewish General Hospital, Pavilion H (5790 Côte-des-Neiges), room H-132.
Introducing the Canadian Covid Society – because we need it

15 March
Canadians with long COVID are struggling with myriad symptoms and patchwork treatments
(Globe & Mail) … There is still no known test for long COVID, also known as post-COVID-19 condition (PCC), so diagnosis is made following the World Health Organization’s definition of “symptoms and medical complications that persist, return, or emerge 12 weeks after the initial acute COVID-19 infection phase.”
Manali Mukherjee, an assistant professor in the department of medicine at Hamilton’s McMaster University, says “anybody who has persisting symptoms that they didn’t have before or that cannot be explained by any other diagnosis” has long COVID.
A February report from the federal Office of the Chief Science Advisor lays out the wide range of body systems affected by PCC – the respiratory, systemic, nervous, cardiovascular, gastrointestinal, skin, musculoskeletal and endocrine systems – and their related symptoms.
… The most commonly reported symptoms are fatigue, shortness of breath and cognitive dysfunction, but the list is long, ranging from hair loss and tinnitus to allergic reactions and feeling hot and cold sensations.
… The February report explains that the modest knowledge of the causes, prevention and treatment of post-COVID-19 condition affects the care people can access.
“Is there a one-size-fits-all treatment for long COVID at the moment? No,” says Dr. Mukherjee. So physicians are treating specific symptoms as they arise.
Some of the people who spoke with The Globe are getting treatment and support from long COVID clinics – and some who have been dismissed by them. Some are part of ongoing studies, and some have navigated their illness mostly on their own.
… A national non-profit group called the Canadian Covid Society also launched last week with co-founders saying the organization is needed as public health agencies have pulled back on COVID-19 prevention measures and awareness campaigns.

28 February
Long Covid May Lead to Measurable Cognitive Decline, Study Finds
People with long Covid symptoms scored slightly lower on a cognitive test than people who had recovered. But long Covid patients who eventually got better scored as well as those whose symptoms did not last long.
Long Covid may lead to measurable cognitive decline, especially in the ability to remember, reason and plan, a large new study suggests.
Cognitive testing of nearly 113,000 people in England found that those with persistent post-Covid symptoms scored the equivalent of 6 I.Q. points lower than people who had never been infected with the coronavirus, according to the study, published Wednesday in The New England Journal of Medicine.
People who had been infected and no longer had symptoms also scored slightly lower than people who had never been infected, by the equivalent of 3 I.Q. points, even if they were ill for only a short time.
The differences in cognitive scores were relatively small, and neurological experts cautioned that the results did not imply that being infected with the coronavirus or developing long Covid caused profound deficits in thinking and function. But the experts said the findings are important because they provide numerical evidence for the brain fog, focus and memory problems that afflict many people with long Covid.

22 February
Long Covid ‘brain fog’ may be due to leaky blood-brain barrier, study finds
If barrier controlling substances entering and exiting brain is off balance, it can drive changes in neural function
(The Guardian) From forgetfulness to difficulties concentrating, many people who have long Covid experience “brain fog”. Now researchers say the symptom could be down to the blood-brain barrier becoming leaky.
The barrier controls which substances or materials enter and exit the brain. “It’s all about regulating a balance of material in blood compared to brain,” said Prof Matthew Campbell, co-author of the research at Trinity College Dublin.
“If that is off balance then it can drive changes in neural function and if this happens in brain regions that allow for memory consolidation/storage then it can wreak havoc.”


15 December
Many Canadians have had long COVID for almost four years. Researchers say there’s hope
A recent Statistics Canada report estimated 3.5 million people in Canada, or 11.7 per cent of the adult population, reported “long-term symptoms” lasting at least three months after COVID-19 infection as of June 2023.
Many of those meet the World Health Organization’s definition of long COVID – also called post-COVID-19 condition – which is “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.”
Long COVID Web, a research network of close to 600 health-care practitioners, scientists and patients across Canada, aims to not only help manage symptoms, but also find “solutions to get rid of long COVID,” said Dr. Angela Cheung, the network’s lead and a senior physician-scientist at University Health Network in Toronto.
Long COVID affects many different systems in the body, Cheung said, with the most common symptoms including fatigue, brain fog, cardiovascular problems and shortness of breath.
Cheung has seen many patients improve, and “quite a few” have even returned to their “baseline” functioning before COVID.

8 December
Experiences of Canadians with long-term symptoms following COVID-19
A new study released today, Experiences of Canadians with long-term symptoms following COVID-19, examines COVID-19 infections including reinfections, long-term symptoms and their impact on the Canadian adult population more than three years since the beginning of the pandemic.
1 in 9 Canadian adults have had long-term symptoms from COVID infection: StatCan
(CTV) About one in nine Canadian adults have had long-term symptoms from COVID-19 infection, according to a Statistics Canada report issued Friday.
That amounts to 3.5 million Canadians, it said.
Almost 80 per cent of those people with long-term symptoms have them for six months or more, the report said, including 42 per cent who had them for a year or more.
“(These patients) have compromised daily productivity. So it’s affecting their quality of life and therefore has a direct effect on the socioeconomic situation in Canada,” said [Manali Mukherjee, an assistant professor of medicine at McMaster University who specializes in respiratory diseases and immunology,] who is a long COVID researcher and also spent about 18 months recovering from her own symptoms.
Long COVID, also known as post COVID-19 condition, is defined by the World Health Organization as symptoms that persist for three months or longer after infection and that can’t be explained by anything else.
Chronic fatigue syndrome is more common than some past studies suggest, CDC says
Chronic fatigue is characterized by at least six months of severe exhaustion not helped by bed rest. Patients also report pain, brain fog and other symptoms that can get worse after exercise, work or other activity. There is no cure, and no blood test or scan to enable a quick diagnosis.
experts believe only a fraction of the people with chronic fatigue syndrome are diagnosed, said Dr. Daniel Clauw, director of the University of Michigan’s Chronic Pain and Fatigue Research Center.
“It’s never, in the U.S., become a clinically popular diagnosis to give because there’s no drugs approved for it. There’s no treatment guidelines for it,”
The tally likely includes some patients with long COVID who were suffering from prolonged exhaustion, CDC officials said.
Long COVID is broadly defined as chronic health problems weeks, months or years after an acute COVID-19 infection. Symptoms vary, but a subset of patients have the same problems seen in people with chronic fatigue syndrome.

6-8 November
Long COVID is ‘not rare’ and can develop after mild illness, says Montreal specialist
(CJAD) The Quebec government is setting up 15 clinics across the province to treat people with long COVID and Lyme disease. The first one to open in Montreal is located at the Jewish General Hospital.
CTV News Montreal’s chief anchor Mutsumi Takahashi spoke with MUHC infectious disease specialist Dr. Donald Vinh about long COVID, the clinics and ongoing research on post-COVID conditions.
COVID long-haulers can get help at new Montreal clinic aimed at research and care
Lucie Tremblay, associate CEO of the Montreal’s west-central health authority, says people are suffering debilitating symptoms that prevent them from living a normal life
(CBC) A new clinic at Montreal’s Jewish General Hospital is taking up the fight against long COVID, and within a week of opening, 40 patients have came through its doors in search of help.
… Patients at the new clinic have persistent symptoms like shortness of breath, fatigue and brain fog. Part of the clinic’s mission is to learn about the condition while helping patients get through it.
Dr. Karl Weiss, chief of infectious diseases at the Jewish General, says most people recover fully within a few weeks of getting COVID, but some — even those with mild versions of the disease — might have symptoms…which can vary in intensity from day to day, can be disabling, making it difficult to perform daily activities or to return to work or school.

24 October
Long COVID brain fog may originate in a surprising place, say scientists
(NPR) Scientists have uncovered a possible explanation for one of COVID-19’s most vexing legacies: the stubborn neurological symptoms of long COVID, such as brain fog, memory loss and fatigue.
The first clue emerged when researchers scoured the blood of long COVID patients: It was serotonin – specifically, a lack of the neurotransmitter circulating in the body — that grabbed their attention.
Their analysis revealed that having low levels of that chemical predicted whether or not someone was suffering from persistent symptoms following an infection.
Next, the team of researchers at the University of Pennsylvania carefully recreated the chain of events that might be depleting serotonin and causing downstream consequences that could line up with some of the symptoms characteristic of long COVID.
Their findings, published in the journal Cell, point to an intriguing hypothesis that winds its way from the gut up through the vagus nerve and ultimately into the brain.
“Basically, we can explain some of the neurocognitive manifestations of long COVID through this pathway that leads to serotonin reduction,” says Christoph Thaiss, a senior author on the study and an assistant professor of microbiology at the University of Pennsylvania.
The work has made an impression on those studying long COVID, a condition that still has no validated treatment or widely accepted biomarker that doctors can use to diagnose the condition.
The brain connection
Here, the detective work moved away from the gut to the vagus nerve, which essentially acts like the brain’s monitoring system of the body and connects to the gastrointestinal tract and many other organs.
Levy says they found this reduction in serotonin impairs communication between the vagus nerve and the brain, which then reduces some activity in a region of the brain known as the hippocampus.
What’s promising, though, is that the cognitive symptoms the Penn researchers documented in mice could be reversed.
“We can make the animals remember perfectly again by just reactivating their vagus nerve or by restoring their serotonin signaling,” says Thaiss, referring to a cognitive behavioral test they performed on their mouse models of long COVID.

25 September
People With Long COVID Have Specific Blood Biomarkers, Study Says
(WebMd) People with long COVID have specific biomarkers in their blood, a study published Monday in Nature said.
The findings may be a step toward creating blood tests to positively identify people with long COVID so specialized treatments can be employed, researchers said.
“This is a decisive step forward in the development of valid and reliable blood testing protocols for long COVID,” said David Putrino, PhD., lead author and Professor of Rehabilitation and Human Performance and Director of the Abilities Research Center at Icahn Mount Sinai Health System.

23 August
New study suggests people who tested negative for Covid-19 can still develop long Covid
(STAT) Of the 103 million confirmed cases of Covid-19 in the U.S., an estimated one-third have led to long Covid — a condition that ranges in severity, but can be debilitating. A new study suggests that even more people may be suffering from the post-viral syndrome without having ever received an official diagnosis of Covid-19.
The findings of the study suggest that a positive diagnosis for Covid-19 should not be a requirement for treating people whose symptoms are in line with long Covid….

31 July
Brain fog and other long COVID symptoms are the focus of new small treatment studies
(AP) — The National Institutes of Health is beginning a handful of studies to test possible treatments for long COVID.
Monday’s announcement from the NIH’s $1.15 billion RECOVER project comes amid frustration from patients who’ve struggled for months or even years with sometimes-disabling health problems — with no proven treatments and only a smattering of rigorous studies to test potential ones.
27 July
Fatigue Can Shatter a Person
Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience. Between long COVID, ME/CFS, and other energy-limiting chronic illnesses, millions of people in the U.S. alone experience debilitating fatigue.
By Ed Yong
(The Atlantic) Fatigue is among the most common and most disabling of long COVID’s symptoms, and a signature of similar chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS). But in these diseases, fatigue is so distinct from everyday weariness that most of the people I have talked with were unprepared for how severe, multifaceted, and persistent it can be.
For a start, this fatigue isn’t really a single symptom; it has many faces. It can weigh the body down: Lisa Geiszler likens it to “wearing a lead exoskeleton on a planet with extremely high gravity, while being riddled with severe arthritis.” It can rev the body up: Many fatigued people feel “wired and tired,” paradoxically in fight-or-flight mode despite being utterly depleted. It can be cognitive: Thoughts become sluggish, incoherent, and sometimes painful—like “there’s steel wool stuck in my frontal lobe,” Gwynn Dujardin, a literary historian with ME, told me.
Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,”

21 July
‘Brain fog’ of long Covid comparable to ageing 10 years, study finds
Symptoms of infection can last two years, but researchers find no lasting cognitive impairment after individuals fully recover
(The Guardian) In a study by King’s College London, researchers investigated the impact of Covid-19 on memory and found cognitive impairment highest in individuals who had tested positive and had more than three months of symptoms.
The study, published on Friday in a clinical journal published by The Lancet, also found the symptoms in affected individuals stretched to almost two years since initial infection. … Commonly reported symptoms included fatigue, difficulty concentrating, shortness of breath and muscle aches.

2 June
Canadian researchers find brain inflammation in patients with long COVID
(CTV) Researchers have been trying to understand what causes the many symptoms of long COVID, including neurological issues suffered by an estimated hundreds of thousands of Canadians like Coles.
Now, a team led by the Centre for Addiction and Mental Health (CAMH) has found physiological evidence of brain inflammation in people with cognitive and depressive symptoms months after their COVID-19 infections.
Autopsies of people who died in the midst of severe COVID-19 infection have previously shown they had brain inflammation, said Dr. Jeffrey Meyer, head of the neuroimaging program in mood and anxiety at CAMH and senior author of the study published Thursday in JAMA Psychiatry.
The current study shows brain inflammation in people who have recovered from acute COVID-19 but go on to have lasting neurological problems — even though their initial infection wasn’t severe, he said.

2 February
Three important studies shed light on long covid
Dr. Leana S. Wen
(WaPo) A recent paper published in Nature Medicine attempts to divide the spectrum of symptoms into four groups: cardiac and renal abnormalities; sleep and anxiety problems; musculoskeletal and nervous system concerns; and digestive and respiratory system consequences.
Based on medical record reviews of long covid patients, researchers found patterns in these groups.
A second paper, published in the Lancet, shows the incidence of long covid was lower during the omicron surge than in the delta surge. The difference was striking: People who contracted the coronavirus in the omicron wave were about half as likely to develop post-covid symptoms compared with those in the delta wave.
I’ve saved the most illuminating study for last: A nationwide study from Israel, published a few weeks ago in the British Medical Journal, found that among both children and adults who had post-covid symptoms, most were resolved within a year of diagnosis.
The researchers discovered this by comparing patients infected with the coronavirus with a matching group of individuals who shared their demographic characteristics but did not have covid. They found that those who recently recovered from covid reported more symptoms such as loss of taste and smell, cough, shortness of breath, palpitations, muscle aches and concentration problems.
Those differences between the two groups were prominent over the first six months, affirming the existence of post-covid symptoms. But by 12 months after diagnosis, the differences were mostly gone — meaning that most people who developed post-covid symptoms were back to their pre-covid health within a year.
To be sure, there are many patients who are suffering consequences from long covid years after their initial diagnosis. Often, these individuals have found little relief. Far more must be done to identify treatments — and, one day, a cure.

18 January
New evidence on what causes brain fog in long COVID
Brain fog after a virus isn’t new, but the COVID-19 pandemic has taken this post-viral symptom to an entirely new level.
by Emma Jones
“It’s terrifying,” says Ash Dobbin-Mohammed, NP, Medical Director of the RT Medical post-COVID clinic , a virtual clinic offering support for Canadians coping with lingering effects of a COVID-19 illness. “… The best analogy I can use for it is it feels as if you’re in an awake coma. You’re unable to really process your environment.”
Symptoms of brain fog , which include poor concentration, feelings of confusion or “fuzzy thoughts,” trouble finding words, poor memory and mental fatigue, have been known to occur after viral illnesses before the COVID-19 pandemic. However, the extent to which patients experience brain fog after COVID-19 is deeply concerning, says Dobbin-Mohammed.
Researchers have found evidence of damage in the brains of patients with long COVID, such as changes in the brain’s white matter , elevated levels of protein in the cerebrospinal fluid , and poor heart and lung function that could impact the brain.
One of the primary culprits behind brain fog is believed to be inflammation. A study published early in the pandemic noted blood markers of inflammation correlated with poor cognitive test scores.


19 October
Addiction drug shows promise lifting long COVID brain fog, fatigue
Researchers chasing long COVID cures are eager to learn whether the drug can offer similar benefits to millions suffering from pain, fatigue and brain fog months after a coronavirus infection.
The drug has been used with some success to treat a similar complex, post-infectious syndrome marked by cognitive deficits and overwhelming fatigue called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Drawing on its use in ME/CFS and a handful of long COVID pilot studies, there are now at least four clinical trials planned to test naltrexone in hundreds of patients with long COVID, according to a Reuters review of Clinicaltrials.gov and interviews with 12 ME/CFS and long COVID researchers.
Unlike treatments aimed at addressing specific symptoms caused by COVID damage to organs, such as the lungs, low-dose naltrexone (LDN) may reverse some of the underlying pathology driving symptoms, they said.
Naltrexone has anti-inflammatory properties and has been used at low doses for years to treat conditions such as fibromyalgia, Crohn’s disease and multiple sclerosis.

12 October
WHO chief urges immediate action to tackle ‘devastating’ long Covid
Exclusive: Dr Tedros Adhanom Ghebreyesus calls for ‘sustained’ efforts to help people still experiencing ‘prolonged suffering’
Read the Guardian’s new series, Living with long Covid
Dr Anthony Fauci: long Covid is an ‘insidious’ public health emergency
… Less predictably, several studies indicate that long Covid is more common among women than men. Noting that diseases such as lupus have a similar gender bias, Fauci speculates that some of aspect of dysregulation of the immune system is more common in women than in men.

30 July
Long COVID may now be less common than previously thought
Immunity from vaccination appears to lower risk over time, according to new data
Newer research suggests long COVID is occurring at a much lower rate than estimates from early in the pandemic, before widespread vaccination. PHAC is now working to better understand the true number of cases — while acknowledging their data is outdated.
“Long COVID is real. There are a lot of people suffering from it,” said Bill Hanage, an epidemiologist at Harvard University’s T.H. Chan School of Public Health in Boston.
“But you don’t serve those people by pretending that 40 per cent of the population is in that boat. In my view, it’s actually a bit disrespectful to the people who are genuinely suffering from long COVID to pretend that that is the case.”
Akiko Iwasaki, a professor of immunobiology at Yale School of Medicine in New Haven, Conn., said it’s not entirely clear yet how much vaccination helps in preventing long COVID. Some studies have shown it can reduce the risk by half and others showed significantly less benefit, but emerging research suggests they lower the rate significantly.
21 June
Two Years Later, We Still Don’t Understand Long Covid. Why?
Dr. Lekshmi Santhosh parses what research has illuminated about long Covid, and what questions remain.
(NYT Ezra Klein show) …depending on the data you look at, between 10 percent and 40 percent of people who get Covid will still have inexplicable symptoms months later. For some people, that’s going to be modest — a cough, some fatigue. For others, it can be life-altering — debilitating brain fog, constant exhaustion, cardiovascular problems, blood clotting.
This is what we call long Covid. It’s this one term for this vast range of experiences of symptoms, of outcomes. This one term may be hiding a lot of different conditions, maybe even a lot of different causes. We’ve known long Covid is a thing for years now, but to try to dive into the literature here is to realize very quickly how little we actually know.

16 June
Specialized clinics to treat long COVID are in demand and physicians say they can’t keep up
Wait times for clinics have jumped from weeks to months, doctors say
(CBC) Doctors say demand is growing for specialized clinics to treat post-COVID condition, also known as long COVID, in part due to increased awareness of what symptoms are. While clinics have opened in a number of locations, the wait lists are also growing. With a lack of funding and staffing, physicians say they can’t keep up.
“Our colleagues in different provinces are reporting up to six months wait time to get into these clinics and then around the world, the reported wait times in places like Italy, the U.K. and the United States — these clinics are often seven to nine month wait times,” [Dr. Kieran Quinn, a clinician scientist at Sinai Health and the University of Toronto] said.

10 June
Solving the mysteries of long COVID (audio)
(CBC Front Burner) Shortness of breath, fatigue and brain fog. Those are just some of the symptoms that many COVID long-haulers are still facing, even months after they first caught the virus.
According to studies on the condition, one-third of people who’ve had COVID-19 could develop long-term problems related to the virus.
Today, Dr. Priya Duggal, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health, talks about the research she’s doing into the impacts of long COVID, who’s most likely to get it and why some people don’t take it seriously.

19 May
Most Common Symptoms of Long COVID
Plus, what to do when the effects of a coronavirus infection won’t go away
(AARP) The phenomenon, dubbed long COVID, has puzzled experts since near the start of the pandemic. And while research is starting to come up with some answers, Greg Vanichkachorn with Mayo Clinic says, “we don’t really have [long COVID] nailed down yet.” A big reason is because “it looks like more and more symptoms can be associated with this condition,” says Vanichkachorn, M.D., an occupational and aerospace medicine specialist and medical director of Mayo Clinic’s COVID Activity Rehabilitation Program.
In fact, the list of the most commonly reported long COVID symptoms maintained by the Centers for Disease Control and Prevention (CDC) includes nearly 20, ranging from neurological complications to digestive disorders. Some studies have uncovered more than 50 long-term effects of COVID-19, adding issues such as hair loss and vision loss to the mix. Others estimate that number is much higher — closer to 200.
Still, some of these symptoms seem to be more prevalent. Fatigue is the most common complaint that Vanichkachorn sees among his long COVID patients. “And that’s often coupled with some breathing problems, either coughing or shortness of breath,” he adds. Almost equal to that are patients coming in with neurological issues — headaches, tingling or numbness in the arms and legs, ringing in the ears, changes in their vision, “as well as a lot of trouble with thinking,” Vanichkachorn says.

16 May
Half of patients hospitalized with COVID-19 still experiencing at least one symptom two years later: study
(CTV) The research, published last week in the scientific journal The Lancet Respiratory Medicine, follows 1,192 patients who were hospitalized with COVID-19 in Jin Yin-tan hospital in Wuhan, China between early January 2020 and late May 2020.
Since the research looks at participants infected at the very start of the pandemic, it represents some of the longest data we have on the lasting effects of COVID-19, shedding more light on how this pandemic could leave huge swathes of the population with lingering issues for years.

6 May
Public health agency trying to find out how many Canadians are struggling with ‘long COVID’
‘We probably anticipate that the impact of long COVID is going to be quite substantial,’ says Theresa Tam
(CBC) Federal agencies are trying to get a handle on how many Canadians are suffering from “long COVID” as researchers learn more about the mysterious after-effects of the virus.
The Public Health Agency of Canada and Statistics Canada have launched a survey to get a broad idea of how common it is for people to feel lingering effects after COVID-19 infection — something which can be difficult to identify and even harder to track.
“We probably anticipate that the impact of long COVID is going to be quite substantial,” Chief Public Health Officer Dr. Theresa Tam told a media briefing Friday.
Relatively little is known about the effects of long COVID, also known as post-COVID-19 condition — including how to diagnose it.
The public health agency says there have been reports of more than 100 symptoms associated with the condition.
The most common ones, according to PHAC, are fatigue, memory problems, anxiety, depression and even post-traumatic stress disorder.
The wide array of symptoms, coupled with the fact that few jurisdictions provide documented COVID-19 tests, make it difficult to know how many people are still suffering the effects of an infection.
Early reports from the World Health Organization showed 10 to 20 per cent of people infected with the virus would go on to have symptoms of long COVID. Tam said more up-to-date research indicates that figure could actually be as high as 50 per cent.

The Current Wednesday April 27, 2022
Long COVID sufferers struggle to find medical help
Some Canadians who caught COVID 19 long ago have yet to get well. Their symptoms can be debilitating, and they linger for weeks, months, even years. And for people living with what is called long COVID, it can be difficult to find the right doctors to treat those symptoms. That is starting to change, though, in some parts of this country. Earlier this month, a specialised clinic opened up in Victoria, the first one on Vancouver Island and the fifth long COVID clinic in British Columbia. And back in January, Dr. Neeja Bakshi launched a similar clinic in Edmonton.
Matt Galloway talks to Elise Cote, who hopes a new clinic in Victoria, B.C., could help her; and long COVID researcher Dr. Angela Cheung.

8 April
How did COVID-19 affect Americans’ well-being and mental health?
(Brookings) Our analysis, based on many different datasets and indicators of despair, does not contradict other studies in that despair is an ongoing problem in the U.S., as reflected by both mental health reports and trends in EMS activations. However, we do find that the effects of the COVID-19 pandemic are mixed, and that while some trends, such as opioid overdose deaths, worsened in 2020 compared to 2019, others, such as in some mental health reports and in suicide rates, improved slightly. Our work does not speak to the longer-term mental health consequences of the pandemic, but it does suggest that there were deep pockets of both despair and resilience throughout it. It also suggests that caution is necessary in drawing policy implications from any one study.

27 March
How covid brain fog may overlap with ‘chemo brain’ and Alzheimer’s
Researchers say the brain inflammation in long covid is similar to that in cancer patients
(WaPo) when Stanford University neuroscientist Michelle Monje began studies on long covid, she was fascinated to find similar changes among patients in both groups, in specialized brain cells that serve as the organ’s surveillance and defense system.
Monje’s project is part of a crucial and growing body of research that suggests similarities in the mechanisms of post-covid cognitive changes and other long-studied brain conditions, including “chemo brain,” Alzheimer’s and other post-viral syndromes following infections with influenza, Epstein-Barr, HIV or Ebola.
Pre-covid, much of the medical research into brains (as well as other organs) was siloed by disease. But during the pandemic, as diverse scientists banded together to understand a complex, multi-organ disease, commonalities among the conditions began coming to light.
… Most of the studies so far are so small and preliminary that they raise more questions than answers. But they also underscore the potential seriousness of covid-19 in producing short- and long-term brain effects, and provide hope that treatments to reverse or reduce those may be developed more quickly.

16 March
For Canadians with long COVID-19, recovery remains a heavy burden
Two years after the pandemic hit, Canadians with long COVID say they often feel frustrated as they grapple with the long-term effects of the virus. Experts, meanwhile, say Canada lacks a centralized system of data collection that could help study and treat the condition.
“For two years, the mother of four has been living with the post-COVID-19 condition known as long COVID, which has limited her abilities to engage in physical activity, process information and work long hours.
If she walks too fast, she starts gasping for breath. Headaches are frequent and her vision turns blurry at times.
She suffers from brain fog, fatigue, memory loss and a chronic sore throat.”

4 February
The Debilitating Puzzle Box of Long COVID
The persistence of symptoms in many people who get COVID-19 demands answers, but studying long COVID proves to be quite the scientific challenge
(McGill OSS) “Long COVID” is a term coined by the very people affected by it. Meanwhile, the scientific community is still trying tortuous alternatives on for size. Post-acute sequelae of SARS-CoV-2 infection or PASC. Switch two letters and you get post-acute COVID-19 syndrome or PACS. Move the words “post,” “chronic,” “condition,” and “syndrome” around “COVID-19” and you get other suggestions that populate scientific papers.
The symptoms that those who experience long COVID (known as COVID long-haulers) have to put up with are legion. When nearly 4,000 long-haulers with laboratory-confirmed or suspected COVID-19 filled out a thorough survey of their long COVID symptoms, the results were gobsmacking. It painted a portrait of a fiendishly complex disease that seemingly affects every organ system in the body. The long-haulers reported fatigue, sweats, extreme thirst, menstrual issues, loss of smell and taste, heart palpitations, tightness in the chest, joint pain, new allergic reactions, sore throat, dry eyes, shortness of breath, diarrhea, peeling skin, and a long list of other physical symptoms. On the mental health front, the inventory was no less overwhelming, including anxiety, memory loss, and brain fog.
Researchers who have summarized the growing literature on long COVID are not shy about listing the many, many limitations of the studies out there, chief among them the frequent lack of a control group. … Another issue is how problems like pain and fatigue, which we’ve never been great at measuring, are reported from one study to the next, making comparisons difficult. Long COVID has put so many of the problems of scientific research front and centre, including many researchers’ reluctance to involve actual patients in designing their projects.
… Many of the symptoms of long COVID partly overlap with conditions like chronic fatigue syndrome (ME/CFS), fibromyalgia, mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), and “chemo brain,” the brain fog that a third of patients struggle with following chemotherapy for cancer. Unfortunately for long-haulers, these “cousin” conditions tend to be poorly studied. The hope is that the crisis of long COVID helps shed light on these other conditions as well.

1 February
A cause of America’s labor shortage: Millions with long COVID
(CBS News) Millions of Americans are struggling with long-term symptoms after contracting COVID-19, with many of them unable to work due to chronic health issues. Katie Bach, a nonresident senior fellow at the Brookings Institution, said she was “floored” when she started crunching the numbers on the ranks of workers who have stepped out of the job market due to long COVID.
Her analysis found that an equivalent of 1.6 million people are missing from the full-time workforce because of the disease, which can leave people incapacitated for months with persistent symptoms including fatigue, brain fog, headaches, memory loss and heart palpitations.

19 January
Mild COVID-19 can cause attention, memory issues for up to 9 months: study
(Global news) People with mild COVID-19 who do not suffer any other traditional “long COVID” symptoms can still exhibit deteriorated attention and memory six to nine months after infection, a study by Britain’s Oxford University has found.
Cognitive issues impacting concentration levels, along with forgetfulness and fatigue, are features of long COVID – a condition that afflicts some after an initial bout of infection – but it has not been established how widespread issues with attention span might be following COVID-19 infection.
In the study, participants who had tested positive for COVID-19 previously but did not report other traditional long COVID symptoms were asked to complete exercises to test their memory and cognitive ability.
The researchers found that participants were significantly worse at recalling personal experiences, known as episodic memory, up to six months after infection. They also had a bigger decline in their ability to sustain attention over time than uninfected individuals up to nine months after infection.
“What is surprising is that although our COVID-19 survivors did not feel any more symptomatic at the time of testing, they showed degraded attention and memory,” said Dr Sijia Zhao of the Department of Experimental Psychology, University of Oxford.

10-11 January
Long COVID: For the 1 in 10 patients who become long-haulers, COVID-19 has lasting effects
Manali Mukherjee, Assistant Professor of Medicine, and Zain Chagla, Associate Professor, Division of Infectious Diseases, Department of Medicine, McMaster University
(The Conversation) We know it generically as “long COVID,” though it’s hardly generic, and we still know very little about it, including what it is, who, when or how badly it will strike, how long it might take to recover or whether complete recovery is possible for all.
… It appears to affect about one in 10 people who have recovered from a COVID-19 infection. In Canada, a conservative estimate is that long COVID has affected 100,000 to 150,000 people so far, although the studies assessing prevalence have serious methodologic flaws.
The medical and research community first became aware of long COVID as a sometimes debilitating post-viral syndrome that first appeared to affect patients who’d had severe COVID-19, particularly those who had been treated in intensive care.
What’s challenging about identifying long COVID is that the symptoms are broad and can be associated with other conditions, and that some, such as anxiety, depression and fatigue, cannot be confirmed with lab tests.
… Among the questions that demand urgent answers is whether long COVID is a typical post-viral syndrome that follows a predictable pattern, or whether it has a unique immune fingerprint. Are there clinical, X-ray or other markers of long COVID? Is there evidence of persistent low-level infection or unrelenting inflammation?
When it comes to long COVID, the treatment playbook is constantly evolving
About 20 clinics across Canada are specifically helping the so-called long haulers
(CBC) Long-COVID patients — sometimes called long haulers — are defined as those who have at least one unexplained symptom lasting longer than 12 weeks.
According to studies, long COVID is associated with more than 200 symptoms across 10 organ systems, including the brain, heart, lungs and blood vessels. A large Canadian survey released in June found the top reported long-COVID symptoms included fatigue, shortness of breath, brain fog and muscle and joint pain.
Doctors working with long-COVID patients are already employing some additional investigational tools, such as the use of a special MRI, which allows doctors to dilate the brain’s capillaries and see how slow they respond to stimuli. It may help explain brain fog in some patients.
“We have already learned a few things,” said Dr. Angela Cheung, a senior scientist-clinician at the University Health Network in Toronto, which includes the Toronto Rehabilitation Institute. She is also co-lead investigator for the Canadian COVID-19 Prospective Cohort Study (CANCOV), which is looking at the one-year outcomes in patients with COVID-19.
Resting and pacing yourself, for example, helps with recovery. Deep breathing can also help patients get rid of shortness of breath. Steroid puffers can be used for wheezing and cough, as well as steroid nasal sprays for runny noses and sinus congestion.


9 December
Long covid is destroying careers, leaving economic distress in its wake
Suffering from debilitating exhaustion and pain for months, patients find themselves on food stamps and Medicaid
(WaPo) Hard data is not available and estimates vary widely, but based on published studies and their own experience treating patients, several medical specialists said 750,000 to 1.3 million patients likely remain so sick for extended periods that they can’t return to the workforce full time.
Long covid is testing not just the medical system, but also government safety nets that are not well suited to identifying and supporting people with a newly emerging chronic disease that has no established diagnostic or treatment plan. Insurers are denying coverage for some tests, the public disability system is hesitant to approve many claims, and even people with long-term disability insurance say they are struggling to get benefits.
Many people with long covid, often referred to as “long haulers,” experience mild symptoms to begin with, then get stuck with months of chronic fatigue, shortness of breath, confusion and memory loss, erratic and racing heartbeats, radical spikes in blood pressure, painful rashes, shooting pains and gastrointestinal problems.

26 November
What are the causes and symptoms of emotional distress?
Emotional distress is a state of mental anguish that can take a wide variety of forms. It may result from a mental health issue or particular circumstances, such as relationship difficulties or financial strain. However, anyone can experience emotional distress, even if they do not meet the criteria for any psychological disorder.
Some symptoms of emotional distress include:
feeling overwhelmed, helpless, or hopeless
feeling guilty without a clear cause
spending a lot of time worrying
having difficulty thinking or remembering
sleeping too much or too little
having changes in appetite
relying more heavily on mood-altering substances, such as alcohol
isolating from people or activities
experiencing unusual anger or irritability
experiencing fatigue
having difficulty keeping up with daily tasks
experiencing new, unexplained pain

8 November
For COVID-19 ‘long-haulers,’ the new normal will be wildly different
Judy King, a physiotherapist who specializes in recovery for those with long-term respiratory and cardiac conditions, advises people with long-term COVID symptoms to write everything down — from fatigue, losing senses, to brain fog — to understand their symptoms.
She says it’s important to pace yourself, prioritize the activities you need to do, plan your day, and also prioritize pleasure. People with chronic symptoms need to plan their days so they’re not exhausted by the end of the day — and that can mean limiting activities and prioritizing some over others.
She recommends people try to keep their heart rate within 15 beats per minute of their weekly average, or else it could aggravate symptoms and exhaustion.
King says those suffering from long COVID need unique, targeted treatment and support, and hopes there will be resources developed soon specific to that group.

24 September
Much about ‘long COVID’ remains a mystery, 18 months into the pandemic
Over 18 months after the pandemic was declared, there are still gaps in what we know about people who are suffering with long-term symptoms of COVID-19, says the medical director of the disease’s recovery clinic at Vancouver General Hospital.
Schwartz says at this point doctors are more able to identify what long COVID symptoms look like, the four most common ones being fatigue, breathlessness, cognitive dysfunction and mental health deterioration.
But, he said, “we still don’t have a great sense of what’s causing these prolonged symptoms.”

15 October 2020 – Updated 1 March 2021
The tragedy of the post-COVID “long haulers”
(Harvard Medical School) Suppose you suddenly are stricken with COVID-19. You become very ill for several weeks. On awakening every morning, you wonder if this day might be your last.
And then you begin to turn the corner. Every day your worst symptoms — the fever, the terrible cough, the breathlessness — get a little better. You are winning, beating a life-threatening disease, and you no longer wonder if each day might be your last. In another week or two, you’ll be your old self.
But weeks pass, and while the worst symptoms are gone, you’re not your old self — not even close. You can’t meet your responsibilities at home or at work: no energy. Even routine physical exertion, like vacuuming, leaves you feeling exhausted. You ache all over. You’re having trouble concentrating on anything, even watching TV; you’re unusually forgetful; you stumble over simple calculations. Your brain feels like it’s in a fog.
Your doctor congratulates you: the virus can no longer be detected in your body. That means you should be feeling fine. But you’re not feeling fine.
How common are lingering COVID symptoms?
Tens of thousands of people in the United States have such a lingering illness following COVID-19. In the US, we call them post-COVID “long haulers.” In the United Kingdom, they are said to be suffering from “long COVID.”
Published studies (see here and here) and surveys conducted by patient groups indicate that 50% to 80% of patients continue to have bothersome symptoms three months after the onset of COVID-19 — even after tests no longer detect virus in their body.
Which lingering symptoms are common?
The most common symptoms are fatigue, body aches, shortness of breath, difficulty concentrating, inability to exercise, headache, and difficulty sleeping. Since COVID-19 is a new disease that began with an outbreak in China in December 2019, we have no information on long-term recovery rates.

Learning to breathe: German clinic helps COVID long haulers
(AP) Therapists at the clinic initially focus on stabilizing patients’ breathing. Then they work to restore stamina and motor coordination with the help of occupational therapy and posture training. Cognitive therapy and psychological support are also part of the program.
Similar clinics for “long haulers” have sprung up around the world over the past year, including in the United States. In Germany, such treatment is increasingly being offered by the country’s network of more than 1,000 medical rehabilitation centers, 50 of which specialize in pulmonary diseases.
“That doesn’t exist in many other countries yet,” Frommhold said.
It is unclear how many people suffer from long-term COVID-19, partly because the condition isn’t clearly defined yet. Scientists are still trying to understand what is behind the wide range of symptoms patients report.

5-7 April
People are losing their taste and smell to covid-19. Now there’s a cookbook to help.
Ryan Riley is a British chef who has spent the past several months concocting an array of science-based recipes to help covid “long-haulers,” whose sense of taste and smell disappears for nearly a full year because of the disease caused by the coronavirus.
Study suggests vaccines may improve symptoms for some COVID-19 long-haulers
Small U.K. study says 23% of vaccinated ‘long COVID’ patients saw symptoms reduce post-vaccination
(CBC) More than a year into the pandemic, it’s not clear how many people are experiencing long-term health issues after having COVID-19, but their numbers are growing.
Researchers think around 10 per cent of people who get sick with COVID-19 continue to live with lasting symptoms — some suggest the number could be as high as 30 per cent — which could mean millions worldwide are coping with some lingering issues from the disease.
Dr. Daniel Griffin, an infectious diseases physician at Columbia University in New York, said around 40 per cent of the patients he is treating for lingering health issues from COVID-19 are reporting either complete, or significant, improvement in their symptoms after being fully vaccinated.
He said the numbers in the U.K. study were “pretty on-target” with what he initially observed in his own patients, but that the impact seemed to bump up a couple weeks after people got their second dose.
Some COVID-19 Long Haulers Say Symptoms Improved After Getting Vaccine
(CBS Boston) Dr. Mallika Marshall says there are anecdotal reports that persistent symptoms in patients who have had COVID-19 get better within a few weeks of getting a vaccine, including fatigue, brain fog, shortness of breath, rashes, and diarrhea.
Right now, there isn’t enough scientific evidence to say that the vaccines are, in fact, responsible for the improvements, but this will be studied more closely.
The theory is that some patients with long-haul symptoms haven’t been able to completely clear the virus and that the vaccine gives them the immune boost needed to do so.

1 April
A year into pandemic, long-haul COVID-19 sufferers still struggle to get care
(CBC) Researchers have estimated that about 10 per cent of people who contract COVID-19 develop long-haul symptoms — some believe the number could be as high as 30 per cent —  but they still don’t understand why.
As provincial and federal governments focus on urgent pandemic priorities — from prevention and vaccination to caring for acutely ill patients in hospitals — people suffering debilitating symptoms in the aftermath of their COVID-19 infections are being left behind when it comes to pandemic-related planning and spending, some experts say.

8 March
Unlocking the Mysteries of Long COVID
A growing number of clinicians are on an urgent quest to find treatments for a frighteningly pervasive problem. They’ve had surprising early success.
(The Atlantic April edition) …more than 90 percent of the patients the center has seen—was a puzzling group “where we couldn’t see what was wrong,” Chen said. These tended to be the patients who had originally had mild to moderate symptoms. They were overwhelmingly women, even though men are typically hit harder by acute COVID‑19. (Acute COVID‑19 refers to the distinct period of infection during which the immune system fights off the virus; the acute phase can range from mild to severe.) And they tended to be young, between the ages of 20 and 50—not an age group that, doctors had thought, suffered the worst effects of the disease. Most of the patients were white and relatively well-off, raising concern among clinicians that many people of color with ongoing symptoms were not getting the care they needed.
… If there is any reason for hope in the growing epidemic of long COVID, it is that some academic medical centers are taking these patients seriously and tailoring treatment to them. Medicine’s history with hard-to-identify chronic illnesses, particularly those that mainly affect women, has not been a good one. For decades now, marginalized patients who have felt mysteriously unwell—with ME/CFS, with post-treatment Lyme disease syndrome, with Ehlers-Danlos syndrome, and more—have banded together into activist groups to try to legitimize their suffering. The same is happening online in the long-hauler groups, which are full of patients who have been met with disbelief by local physicians. But the Mount Sinai doctors (along with collaborative teams in various other academic centers) have responded promptly to the problem. Recently, the NIH and the World Health Organization recognized long COVID as a syndrome that warrants more research.

25 February
WHO urges actions for ‘long COVID’ sufferers
(AP) The World Health Organization’s Europe unit is reporting that about one in 10 people who contracted COVID-19 continue to show “persistent ill health” 12 weeks after infection.
Dr. Hans Kluge, the head of WHO Europe, says much about so-called “long COVID” remains unknown, but the “burden is real, and it is significant.”
In a policy brief released on Thursday, WHO Europe urged policymakers to do more to acknowledge and treat long COVID, which can bring severe fatigue, chest pain, heart inflammation, headache, forgetfulness, depression, loss of smell, recurrent fever, diarrhea and ringing in the ears.
It said available data showed that about one in four people with COVID-19 show symptoms about a month after testing positive, while one in 10 experience symptoms after 12 weeks.
Don’t call us ‘recovered’: COVID long-haulers say official stats ignoring them
‘A large percentage of this cohort of “recovered” people is still suffering. Calling them “recovered” is inaccurate, misleading and insensitive’

19-22 February
The hidden face of COVID-19: A growing number in it for the long haul
Those left suffering ask: Why is this happening? When will it end? Where can I get help?
(Montreal Gazette) Montreal’s first post-COVID clinic opened last week at the Montreal Clinical Research Institute on Pine Ave. (Those interested in booking an appointment can find information online at ircm.qc.ca/en/covid, by phone at 514-987-5581 or by email at cliniquepostcovid@ircm.qc.ca.) Another was started in Chicoutimi, just before the Christmas holidays.
Dr. Alain Piché opened a post-COVID clinic last May at the Hôtel-Dieu Hospital in Sherbrooke. The first of its kind in Quebec, it has received 250 patients to date, roughly 30 per cent of whom experienced persistent symptoms like fatigue, muscle soreness and shortness of breath a month after they first tested positive. Of that group, half still had symptoms after six months. Blood samples will be taken regularly for the next two years and stored with the Québec COVID-19 Biobank. The samples will be used to investigate why some patients develop long-term symptoms and what the risk factors are. The clinic in Montreal, too, is conducting a similar study.
Almost a third of people with ‘mild’ Covid-19 still battle symptoms months later, study finds
By Dr. Sanjay Gupta, Chief Medical Correspondent
(CNN) More than a year into the pandemic, what has become abundantly clear is that SARS-CoV-2 — the virus that causes Covid-19 — is a tricky virus: Some people aren’t aware they’re infected at all, while others are hospitalized and some die. And a growing group of people get sick and then never fully recover. In support groups, they sometimes refer to themselves as long-haulers; their condition is alternately called long Covid, continued Covid, post-Covid syndrome or post-acute Covid syndrome.
A new research letter published Friday in the journal JAMA Network Open is shedding new light on the condition. Researchers from the University of Washington followed 177 people with laboratory-confirmed SARS-CoV-2 infection for up to nine months — the longest follow-up to date. Notably, this group included 150 outpatients, who had “mild” disease and were not hospitalized.

17 February
Opera Singers Help Covid-19 Patients Learn to Breathe Again
A six-week program developed by the English National Opera and a London hospital offers customized vocal lessons to aid coronavirus recovery.
(NYT) Called E.N.O. 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.

11 February
English National Opera develops program to help COVID-19 long haulers (video)
(Global news) The English National Opera has developed a pilot program, ENO Breathe, to help COVID-19 survivors strengthen their damaged lungs. Crystal Goomansingh takes you to one of the virtual lessons to explain how it works.
ENO Breathe
A breathing and wellbeing programme developed specifically for people recovering from COVID-19, who are still suffering from breathlessness and associated anxiety.

8 February
London poised to lead research on toll facing COVID ‘long-haulers’
(London Free Press) London [ON] could become a leader in studying the long-term health impacts of COVID-19, the head of one of the city’s research institutes says, as focus intensifies on fallout of the disease in patients.
As the London area moves past the peak of the second wave, the city’s health research sector could play a major role in understanding the long-term impact of the disease and treating COVID-19 long-haulers, people who struggle with lingering symptoms, the head of Lawson Health Research Institute says.
“Where I think we really can make an impact is the long-term follow-up with patients who had COVID-19,” said David Hill, scientific director at Lawson, the research arm of London’s hospitals.
“There’s plenty of scope now for following these patients, probably for a number of years, to see what the long-term health implications are. . . . Because we have research groups in all of the chronic diseases, we’re well-positioned to do long-term follow-up with these patients.”

5 February
Why we haven’t cracked the mystery of COVID ‘long-haulers’ (video)
(PBS Newshour) “Long-haul” COVID, long COVID, post-COVID: it’s an illness still without an official name. But for people whose COVID-19 symptoms linger for months, the effects can be devastating and debilitating. Their symptoms range from the mundane to the bizarre: brain fog, shortness of breath, fatigue, tremors, tooth loss, racing heart, glaucoma, among others. In this episode of “America, Interrupted,” PBS NewsHour correspondent Stephanie Sy talks with three “long haulers” about their experiences battling this mysterious illness, and Dr. William Li, a vascular biologist who is trying to unravel this medical mystery through his research.
[Here’s What a Harvard Cancer Doctor Eats Daily to Prevent Disease
Dr. William Li spoke with us on what he eats every day to not only stay healthy but fight off chronic diseases like cancer and diabetes; also check out his Fb page https://www.facebook.com/drwilliamli/]

31 January
COVID-19 clinics for ‘long haulers’ aim to treat patients stuck in limbo
(CTV Vancouver) Researchers around the world are trying to unravel the mystery of so-called long COVID to help patients afflicted with an assortment of debilitating symptoms, though they are typically excluded from statistics related to COVID-19 or considered recovered. Some, like Graves, were diagnosed with COVID-19 by their family doctors based on symptoms, not a positive test, in the early days of the pandemic when testing was not offered widely.
“We didn’t recover. We survived,” said Graves, who was referred to a clinic where “long haulers” are treated and studied in order to better understand the cause of their ongoing illness while others recover within a few days or don’t have any symptoms at all.
Graves said she has so far had a virtual appointment with a general internist at a clinic at St. Paul’s Hospital, which is part of a network of three sites in the Vancouver area and is believed to be the only such provincially funded initiative in Canada.

30 January
Nearly $8 million donated to mental health as part of 11th annual Bell Let’s Talk Day
(National Post) This year’s campaign was different, and more critical, than ever because it had to take the impact of COVID-19 into account.
“40 per cent of Canadians feel that their mental health has worsened since COVID, and people who already had issues say their mental health has gotten worse. So, we’re seeing an increased demand for services in a system that was already struggling.”

28 January
‘The tip of the iceberg’: COVID long-haulers facing financial ruin
(Ottawa Citizen) By some estimates, there are tens of thousands of Canadians who suffer lingering after-effects from COVID-19. In some cases, they never knew they were initially infected, or had a mild infection, but suffer ongoing long-term symptoms. Sometimes,…the symptoms are severe enough to prevent them from functioning the way they did before the illness.
…the lack of government support for people in [this] situation is creating a socioeconomic crisis “and no one is paying attention.”
Canadian researchers are studying the long-haul phenomenon, but Renaud said Canada is behind some other countries in recognizing it and supporting patients. In the UK, there are dozens of post-COVID care clinics. Late last year, the UK produced official guidelines for the management of long COVID.
…long COVID can be difficult to diagnose, which can make it harder to get medical help or support.
…some long-haulers face obstacles getting diagnosed and there are no established protocols about how it should be treated.
Long COVID leaves patients and researchers in a maze of questions
Millions of COVID-19 survivors worldwide — even those who had mild illness — are reporting long-term symptoms months later, including brain fog, persistent exhaustion, and lung, heart or kidney damage, Axios’ Eileen Drage O’Reilly writes.
Why it matters: For too long, these long-haulers, as they call themselves, have not been taken seriously enough by providers and researchers, some doctors tell Axios, adding that there’s an urgent need for dedicated research in order to treat patients with lingering symptoms.
Doctors started to realize long COVID was a problem last spring, and yet “there’s little to show for it,” says cardiologist Eric Topol, founder and director of Scripps Research Translational Institute. “I’m very disheartened about how poor the attention has been to this.”
What’s happening: Many providers and health care systems initially dismissed the symptoms as related to something else, but growing evidence points to SARS-CoV-2 as the culprit in many cases.
• A study published in The Lancet looked at people who had severe COVID-19 illness in China and found that six months later, 75% continued to experience at least one symptom.
• A preprint study in medRxiv, not yet peer reviewed, surveyed 3,762 self-described long-haulers from 56 countries, with symptoms after the onset of what was likely COVID-19. Six months after first becoming sick, almost half were unable to work full time and 22% weren’t working at all. 88% had cognitive dysfunctions or memory loss, and most had multiple symptoms.
• Fragments of SARS-CoV-2 have been found in multiple organs, and the Mayo Clinic reports they’ve seen frequent complaints of long-term persistent headaches, loss of smell (anosmia) and taste (ageusia), and trouble sleeping.
• Mayo found some patients had organ damage, including injured heart muscle, causing myocarditis, palpitations and fast heartbeats; scarred lung tissue, leading to breathing problems; and neurological damage, causing brain fog, strokes, seizures and Guillain-Barre syndrome.
Between the lines: There are other viruses that either cause long-lasting symptoms, such as Epstein-Barr, or stay in the system where they can reactivate and trigger later complications, like varicella-zoster.
• It is unknown if SARS-CoV-2 can hide in the system, but a recent, early study of animals in the journal Viruses indicates this could be a possibility.
• The cause of long COVID needs to be discovered before targeted therapies can be made, says Neha Dangayach, director of neuroemergencies management and transfers for the Mount Sinai Health System.
• “Is it a reactivation of the virus? Is it an immunological response or a persistent immunological response to the initial viral exposure? Or is it a recirculation of the viral particles that trigger some of these symptoms?” Dangayach asks.
There are also many questions about why some people develop long COVID-19 and others don’t.
• “Why you, and not me? Why do [some] 80-year-old people who get COVID die, and some survive? Why do some 20-year-old people who get COVID need a double lung transplant, whereas 90% of all the others have no symptoms? We don’t know,” says Igor Koralnik, chief of neuro-infectious diseases and global neurology at Northwestern Memorial Hospital, who started a long COVID clinic in May.
• Topol says they need to figure out whether early treatments like monoclonal antibodies may help diminish the chance of long COVID.
What’s next: Long COVID is becoming a higher priority, and several longitudinal studies are expected to come out soon, Dangayach says.
• In the U.S., Congress has set aside some funding for research and NIH is studying the issue, NIH director Francis Collins says.
• Long-haulers are urged to seek specialized clinics, join support networks and consider sharing data in this patient-led survey.
• While there aren’t enough overall, there are a growing number of interdisciplinary clinics popping up around the country to try to address the myriad problems associated with long COVID.

27 January
10 months later, this COVID-19 ‘long-hauler’ is still experiencing symptoms
‘Are we going to get better eventually?’ Susie Goulding asks
Still today, 10 months after Susie Goulding fell ill with the first symptoms of what eventually could only be identified as COVID-19, she struggles to find the right words to complete her sentences.
As she pauses to think of the right term, Goulding explains that two recent neuroimaging tests on her brain found that some areas of her cognitive function are currently operating at only 5 per cent.
The once-active, on-the-go, Oakville resident said she also has issues performing any kind of physical activity, as the exertion is too much for her body to handle. But these are only two of many complications that have been lingering for months.
After months of receiving little to no answers, Goulding started a Facebook support group in June, now called COVID Long-Haulers Support Group Canada, which currently has over 11,000 members.
Since then, Goulding has been connecting with thousands of other Canadians who have experienced and continue to experience a long list of symptoms for which they cannot get a clinical diagnosis, as their window for COVID-19 testing has long passed.
Goulding said the symptoms run the gamut, from chronic fatigue to gastrointestinal issues, tingling and numbness in limbs, headaches and loss of vision and loss of appetite. Some long-haulers reported experiencing more serious issues, like strokes, micro brain bleeds, and liver and kidney issues.
One of the most frustrating aspects of dealing with these symptoms, Goulding said, is that medical professionals are only in the beginning stages of collecting data and do not have many answers for her. She also doesn’t know if any of this damage is permanent.

21 January
What If You Never Get Better From Covid-19?
Some patients could be living with the aftereffects for years to come. Recent research into another persistent, mysterious disease might help us understand how to treat them.
(NYT) Zijian Chen estimates that about 10 percent of Covid-19 patients end up developing symptoms that persist for months and months — a number that would equate to roughly 100,000 chronically sick people in New York State alone. Some surveys suggest the number is higher. A study from Ireland found that more than half of Covid patients, whether they’d been hospitalized or not, reported fatigue 10 weeks out; nearly a third hadn’t returned to work. In another study, from the Faroe Islands, about half the patients with mild cases had at least one symptom 18 weeks later. A third, much larger study, from China, reported that three-quarters of those patients who were hospitalized with Covid-19 and then discharged still experienced at least one symptom six months later.
My ‘Long Covid’ Nightmare: Still Sick After 6 Months
A Times reporter caught the coronavirus during the New York City outbreak last April. But the acute phase of the illness was just the beginning.

14 January
A possible model?
When it comes to mental health, now more than ever, every action counts.
Kids Help Phone is just one of the many beneficiaries of Bell Let’s Talk, a wide-reaching program designed to break the silence around mental illness and support mental health all across Canada.
Whether by phone, text, mobile app, Facebook messenger, or through the website, Kids Help Phone is always open, in any moment of crisis or need.
“Anxiety, stress and depression account for more than half of what people are reaching out to us about. We’re having big dialogues around isolation, and with that, comes dialogues around grief and loss of normal life,” said Hay.
“Family stress is rippling through all our conversations, and calls about abuse have gone up around 16 per cent, which makes sense, since a lot of the services where they might have gone before are now closed.”


29 December
The Problem of ‘Long Haul’ COVID
More and more patients are dealing with major symptoms that linger for months
(Scientific American) “Over the past few months evidence has mounted about the serious long-term effects of COVID-19,” said the World Health Organization Director-General, Tedros Adhanom, at an international long-COVID forum on December 9. At the same event, Danny Altmann, an immunologist at London’s Imperial College, said that his “guesstimate is that we probably have way more than five million people on the planet with long COVID.” The worldwide percentages of infection suggest that many of those people are living and suffering in the U.S.

22 December
Canadian researchers looking into COVID ‘long-haul’ effects
Angela Cheung and Margaret Herridge are co-leads of the study that aims to “try to understand what it means to be a long-hauler” – a COVID-19 survivor who is suffering long-term symptoms

14 December
Long-Haul COVID-19 May Be a Public Health Crisis After the Pandemic
The National Institutes of Health sponsored a meeting this month to discuss the long-term symptoms of the coronavirus.
Experts shed light on the millions of people around the world who have been affected by lingering symptoms from COVID-19.
Some patients have been exhibiting symptoms for more than 4 weeks, or even months, after “recovering” from COVID-19.

9 December
The Long Haul
Covid-19 was originally thought to be a quick disease. The virus came, did its damage, and, for those who survived, was gone in a month or so. But new research suggests that it can linger much longer than anyone thought. These seven survivors are living proof
(Toronto Life) Who she is: Amara Possian, 31
“I returned to work in mid-June, just two or three days a week, and quickly noticed some concerning symptoms. I was unable to come up with ideas or think straight. I’m a pretty good proofreader, but one time, I reviewed an email and thought it was ready to send. Then I reread it 10 minutes later and caught so many glaring mistakes. Sometimes I would read over something I just wrote and there would be an entire chunk of a sentence missing. Or I would message somebody on Slack about something pretty straightforward, and when it became clear they weren’t understanding me, I would read back what I wrote and realize it made no sense. It was really unsettling.”

29 October
Long-Hauler Syndrome: What We Know About Post-Covid Symptoms, Explained By a Top Disease Expert
by Rachael Ray Show Staff
One of the scariest aspects of Covid is that it seems to affect everybody differently. Some people get severe symptoms, others are asymptomatic and may never realize they have it — and now, doctors and scientists are seeing that some Covid patients who have seemingly recovered are experiencing lingering, long-term symptoms months later. Have you seen “Long-Hauler Syndrome” in the headlines? That’s what we’re talking about.
Here to answer our questions about the syndrome is Dr. William Li, internal medicine physician, research scientist and author of Eat To Beat Disease — who’s currently at the forefront of Covid research.

8 October
Ontario man who’s suffered months of COVID-19 symptoms: ‘I don’t even feel like I’m in my own body’
(Global) Lawson is one of a number of people who have experienced COVID-19 symptoms for weeks and months after testing negative for the novel coronavirus. … Lawson said he wants people to recognize the COVID-19 long-haulers. Since his diagnosis, he’s joined a Facebook group of Canadians who are still experiencing coronavirus symptoms weeks or months after they’ve been infected.

One Comment on "Long Covid"

  1. Diana Thebaud Nicholson February 26, 2021 at 2:34 am ·

    From Amara Possian: “I’ve found [the Body Politic COVID-19 support group] really helpful for understanding what’s happening and how to cope (in case you want to add a link to that too”
    Body Politic started the COVID-19 support group after Founder and EIC Fiona Lowenstein, and Creative Director Sabrina Bleich became sick with coronavirus in early March. After falling ill, we quickly realized that there was not enough online content or resources dedicated to people struggling with coronavirus. As we scrolled through Instagram feeds filled with tips on navigating boredom during quarantine, or how not to catch the virus, we felt increasingly isolated, misunderstood, and ignored. With news of infection rates rising, we knew a community of people like ourselves existed, and was growing – we just needed a way to reach each other. Since our launch, we’ve had over 18,000 people sign up to join the group, and have migrated platforms to Slack to accommodate the growth and allow for small discussion channels based on community or topic. Our group consists of people from all over the world who have tested positive, are experiencing symptoms, or are recovering from COVID-19. Our discussion groups includes 50+ channels for based around different communities and topics. Some of our channels include one for those symptomatic for 30+ days or 90+ days, caretakers of sick friends or relatives, those who have recovered from being on ventilators, those experiencing known and lesser known symptom groups such as respiratory, neurological, GI, and others, and forums to discuss mental health, financial and employment concerns, medical advocacy, along with many others.

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