Welcome to the latest issue of the Covid-Is-Not-Over newsletter! This one will be a little closer to what I was originally aiming at with this newsletter, more “what’s the latest news” versus the last couple of issues where it’s been more strongly thematic. This one is still organised around Long Covid, but the focus is more highlighting the latest news than trying to make some sort of larger point.
Long Covid is something we all really want to avoid, both individually and as a society. To put it rather starkly, Long Covid is a mass-disabling event (see the Chief Science Advisor of Canada link below). The best way to deal with Long Covid both individually and as a society is to simply avoid getting infected. As individuals, this means taking precautions. As a society it means working seriously towards lowering the overall burden of infection through a series of well-thought-out public health interventions.
Before getting to today’s links, I have to say that this Twitter thread from Conor Browne really resonated:
I've had the great privilege of speaking to a number of people over the past couple of weeks who are all trying to avoid infection / re-infection with SARS-CoV-2. People of all ages and all walks of life. I'm very well aware of the silo / echo chamber effect here but let me tell you something. By far, the most obvious commonality between all of these disparate individuals is a sense of utter incredulity at the messaging coming from public health agencies and governments worldwide combined with the dearth of critical thinking in the majority of the general public. Of course, the latter is informed by the former: that is to say, the general public are not being given the information they need to make informed decisions. Or, to put it another way the public are not being given the information they need to be able to give *informed consent* to the policies of their respective governments. As a politician I spoke to yesterday put it, it's all about 'feeding the vote machine'. This pervasive incredulity is directed at the fact that the vast majority of governments, public health agencies, and the general public now seem to believe that avoiding infection from a pathogen that can cause significant acute illness and serious long-term effects is at best futile or stupid (the 'it's just a cold' argument) to, at worst, falsely pathologised into evidence of a mental health disorder.
As mentioned above, most of the items I share will be recent at the time I’m sharing, but I’ll be using a fairly loose definition of “recent.” I’ll be aiming for 10 or so items, once or twice a week as a publishing schedule, but I’m also not going to worry about that. I tried something similar on my blog with a This Week in Covid series, but that didn’t seem to get that much traction. So time to try something new.
About a year ago, I did quite a long resource post about Long Covid on my blog. It’s a bit old at this point, but I think it's still very relevant.
Let’s get started.
Some General Resources
Post COVID-19 condition (long COVID) / Public Health Agency of Canada
Long COVID: Long-Term Effects of COVID-19 / Johns Hopkins Medicine
Long Covid / Wikipedia
Long COVID: major findings, mechanisms and recommendations / Nature Reviews Microbiology
Long COVID: major findings, mechanisms and recommendations by Hannah E. Davis, Lisa McCorkell, Julia Moore Vogel & Eric J. Topol / Nature Reviews Microbiology
Long COVID is a multisystemic illness encompassing ME/CFS, dysautonomia, impacts on multiple organ systems, and vascular and clotting abnormalities. It has already debilitated millions of individuals worldwide, and that number is continuing to grow. On the basis of more than 2 years of research on long COVID and decades of research on conditions such as ME/CFS, a significant proportion of individuals with long COVID may have lifelong disabilities if no action is taken. Diagnostic and treatment options are currently insufficient, and many clinical trials are urgently needed to rigorously test treatments that address hypothesized underlying biological mechanisms, including viral persistence, neuroinflammation, excessive blood clotting and autoimmunity.
We got some key things wrong about long COVID. Here are 5 things we've learnt by Peter Wark / The Conversation
1. It can take months to recover lung function – and some people never do
We now know full recovery of lung function is not guaranteed for people with long COVID: one in five still complain of severe breathlessness and 10% have severe functional impairment.
2. COVID can increase the risk of or worsen chronic diseases
Early on, we failed to understand COVID would increase the risk and worsen other chronic diseases.
Since then, large population studies have clearly documented people with long COVID are at increased risk of stroke and heart disease and an increased risk of diabetes.
3. Long COVID isn’t a single disorder
We initially thought of long COVID as a single disorder. We now know it’s a complex condition, caused by a number of different factors. Emerging evidence suggests this includes:
the development of autoantibodies (where the immune system attacks the self)
the persistence of the SARS-CoV-2 virus
microclots (small blood clots and/or damage to blood vessels).
4. We need to resource treatment adequately
In the past we had not devoted sufficient resources to treat post-infectious or immune syndromes such as myalgic encephalitis or chronic fatigue syndrome (ME/CFS). These syndromes are defined by excessive fatigue, which worsens after exertion, and include cognitive impairment or brain fog.
5. COVID shouldn’t be dismissed as a psychological problem
Finally, there has been the problem of attributing long COVID to poor mental health. While worsened mental health often accompanies chronic disease, this link for long COVID has been overstated and we are at risk of dismissing the physiological problem.
Post-COVID-19 Condition in Canada: What we know, what we don’t know, and a framework for action / Office of the Chief Science Advisor of Canada
Acute infection in around 10-20% of individuals leads to a complex and, at times, debilitating chronic condition in some individuals, known as post-COVID-19 condition or long COVID. Additionally, it is increasingly evident that acute COVID-19 increases the risk for several chronic cardio-metabolic diseases, including diabetes, hypertension and arrhythmia. The . long-term effect of COVID-19 on the nervous system is equally concerning with accumulating evidence that several common symptoms reported by individuals suffering from PCC, such as memory loss, blurred vision, mood disorders and neuropathies, may reflect irreversible cellular changes observed in aging or in some neurodegenerative disorders. Thus, PCC has the potential to become a mass-disabling event given the highly transmissible SARS-CoV-2 Omicron variant in circulation and the unpredictability of evolving future variants.
3 Years On, Why Don’t We Know the Extent of Long COVID? By Solarina Ho / WebMD
But what is clear is that even at the lowest estimates, the CDC says 1 in 13 Americans (7.5%, or nearly 26 million) have had or still have long COVID. But some research suggests that figure underestimates the actual number of Americans who are affected.
The World Health Organization estimates between 10% and 20% of people infected with COVID-19 end up with symptoms lasting 3 months or longer.
The U.S. Census Bureau’s most recent Household Pulse Survey puts the current figure at close to 11% – down from nearly 19% last summer, but up from 7% in October. More than a quarter of those had symptoms that made them less able to do day-to-day activities by “a lot.”
And research published in January by the Scripps Research Translational Institute in San Diego estimated at least 1 in 10 Americans with COVID continue to have long-term symptoms.
But some experts believe the World Health Organization, Census Bureau, and Scripps estimates are in fact conservative, even as others say the true number is likely closer to 5%.
Of those with long COVID at 4 months, 84% of hospital COVID patients in Sweden still had symptoms at 2 years by Mary Van Beusekom / CIDRAP
The vast majority—84.2%—of COVID-19 survivors in a Swedish cohort who had long-COVID symptoms at 4 months reported persistent symptoms affecting daily life 2 years after hospital release, according to a follow-up study published late last week in The Lancet Regional Health Europe.
Linkoping University researchers in Sweden interviewed COVID-19 patients about 37 symptoms 2 years after release from the hospital from Mar 1 to May 31, 2020. The group's initial 2021 study found that 185 of 433 hospital patients (42.7%) had lingering symptoms and activity limitations 4 months after discharge. So 32% (139 of 433) of the original group had long COVID at 2-year follow-up.
Long COVID more than doubles a person's risk of developing cardiovascular issues by Emily Henderson / News-Medical
The study - a systematic literature review and meta-analysis of 11 major studies involving a total of 5.8 million people - represents the most comprehensive effort to date to examine cardiovascular complications from long COVID. Estimates of the number of people affected by long COVID vary substantially, but recent surveys suggest about 1 in 7 people in the U.S. have experienced long COVID.
Researchers found consistent evidence that individuals with long COVID were significantly more likely than those who never had COVID-19 to experience symptoms associated with heart problems such as chest pain, shortness of breath, palpitations and fatigue, and more likely to show markers of heart disease or elevated cardiovascular risk in medical imaging and diagnostic tests.
The haunting brain science of long Covid by E. Wesley Ely / STAT
Autopsy studies show that the virus can persist in some people for many months even though they have no symptoms and test negative for the virus. Brains donated by people who died of Covid-19 also show widespread problems in the cells lining the blood vessels and exaggerated clotting, supporting the idea of Covid-19 as a blood flow disorder that brings on brain disease.
Perhaps the most harrowing thing I have done in 30 years as a physician-scientist has been to ask family members I’d never met, often in the middle of the night via telephone during the height of the Covid surges, if I and my colleagues could study their loved one’s brain. In a study we conducted of 20 of these priceless brain donations, we found brain swelling due to decreased blood flow and heightened activity in microglial cells, the so-called white matter in brains that support the neurons that transmit thoughts and help store information. We saw this even in young previously healthy individuals.
A study from the National Institutes of Health of 44 complete autopsies mapped and quantified the distribution of SARS-CoV-2 and showed it was widely distributed throughout the body, including in the hypothalamus and cerebellum in the brain and neurons in the spinal cord. Especially relevant to long Covid, viral fragments were detected in some of the brains of people who died many months after symptom onset.
Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments by Stephani Sutherland / Scientific American
The most common, persistent and disabling symptoms of long COVID are neurological. Some are easily recognized as brain- or nerve-related: many people experience cognitive dysfunction in the form of difficulty with memory, attention, sleep and mood. Others may seem rooted more in the body than the brain, such as pain and postexertional malaise (PEM), a kind of “energy crash” that people experience after even mild exercise. But those, too, result from nerve dysfunction, often in the autonomic nervous system, which directs our bodies to breathe and digest food and generally runs our organs on autopilot. This so-called dysautonomia can lead to dizziness, a racing heart, high or low blood pressure, and gut disturbances, sometimes leaving people unable to work or even function independently.
The SARS-CoV-2 virus is new, but postviral syndromes are not. Research on other viruses, and on neurological damage from the human immunodeficiency virus (HIV) in particular, is guiding work on long COVID. And the recognition that the syndrome may cause its many effects through the brain and the nervous system is beginning to shape approaches to medical treatment. “I now think of COVID as a neurological disease as much as I think of it as a pulmonary disease, and that's definitely true in long COVID,” says William Pittman, a physician at UCLA Health in Los Angeles, who treats Ghormley and many similar patients.
Three in five long COVID patients have organ damage a year after infection by Amitava Banerjee / The Conversation
The latest data from the Office for National Statistics suggests that more than 1.2 million people in the UK report living with long COVID for 12 months or more.
Several studies have confirmed that symptoms can persist in people with long COVID for more than a year after infection. And long COVID can occur regardless of whether or not people were very sick when they caught the virus.
Meanwhile, there is convincing evidence of organ impairment in people who were hospitalised with COVID. But what about organ damage in people who didn’t necessarily need to be admitted to hospital with the virus, but developed long COVID?
In a new study published in the Journal of the Royal Society of Medicine, my colleagues and I looked at organ damage in long COVID patients, most of whom were not severely affected when they had COVID initially. We identified organ damage in 59% of participants a year after their initial symptoms.
We are all playing Covid roulette. Without clean air, the next infection could permanently disable you by George Monbiot / The Guardian
We also know that, with every new exposure, we are more likely to suffer adverse effects. A massive study in the US found that the risk of brain, nerve, heart, lung, blood, kidney, insulin and muscular disorders accumulates with every reinfection. The impacts of long Covid, according to health metrics researchers, are “as severe as the long-term effects of traumatic brain injury”. Now that we know how the virus attacks our cells, “traumatic brain injury” looks less like an analogy than a description. The outcomes can be devastating, ranging from extreme fatigue and breathlessness to brain fog, psychotic disorders, memory loss, epilepsy and dementia.
We are all playing Covid roulette. The next infection could be the one that permanently disables you. I’ve been hit three times so far, and feel lucky still to be active. But I’ve lost a little every time: stamina, lung capacity, sleep, general fitness, however diligently I’ve exercised since. In all three cases, it seems, the infection has come from school. For families with school-age children, the chamber turns more often than for those without. Yet, three years after the pandemic began, the government still does almost nothing to make schools safe.
Long COVID Has Never Been Taken Seriously. Here’s Where It Left Us by Sophie Harrison / The Tyee
Before the pandemic, I was a law student who spent my weekdays studying for long hours and my weekends hiking or cycling. When I developed COVID-19 symptoms in late March 2020, my case was mild, initially, as was the case for most healthy young people.
But then I never got better. The sore throat never went away, and the shortness of breath and fatigue would get better only to get worse again. I spent the first year of the pandemic getting sicker and sicker, until I became mostly housebound, unable to walk around the block, and unable to sit up or think straight for long enough to hold down a job or continue my coursework.
Desperate for help, I was passed from doctor to doctor. I saw an ear, nose and throat specialist, multiple internists, a rheumatologist, a dermatologist and a neurologist, often waiting months between appointments. Each ruled out familiar illnesses within their specialty, then quickly passed me along to someone else. For the most part, they were sympathetic — but they also saw someone very sick who they didn’t know how to help.
Some Additional Links
‘It helps so much’: long Covid sufferers aided by sessions with opera singers / The Guardian
How has long COVID affected Canada’s workforce? - BNN Bloomberg
What happened to Dianna Cowern, aka Physics Girl | Boing Boing
An immunologist’s reflections on nine months of long COVID | Gavi, the Vaccine Alliance
Blackhawks captain Toews says he's still dealing with symptoms of long COVID / TSN
Effects of COVID-19 fatigue in elite athlete revealed in new study / CTV
Long COVID Takes Toll on Already Stretched Health Care Workforce / WebMD