Long Covid is real! Don't deny its existence! It’s disabling people and hurting the economy!
Bonus required Covid readings and Long Covid case studies
The 'long covid doesn't exist' stories show us how journalists and editors are playing the same role on covid as they did on climate change: useful stooges, platforming contrarian science to undermine the existence of a scientific consensus
Welcome to the latest issue of the Covid-Is-Not-Over newsletter!
Last issue inadvertently celebrated Long Covid Awareness day. Last issue also inadvertently landed at the same time as an absolutely horrible article in the Australian press about how Long Covid is no worse than the flu and that we should stop using the term “Long Covid.” It was covered extensively in the mainstream press basically as “Long Covid doesn’t exist” or “It’s all in your head.” I noticed this especially in the more conservative press outlets, but even those ostensibly on the more progressive side of things ran with it too.
Hence, this issue picks up on the same themes as last, just because it seems like right now we all need more quality Long Covid information. I am running some commentary about that Australian article and the study in covers as well as some more general information on Long Covid. Just before the musical interlude, I’m including some of the Long Covid personal narratives that I’ve run across in the last week or so.
The media won't cover high quality peer reviewed published evidence on the long-term impacts of COVID-19 on every single organ system, but rushes to cover 'expert opinion' on an unpublished non-peer reviewed abstract that contradicts everything we know about LC so far.
And of course no one can really critique because we know nothing about the actual nitty gritty of the study, as it doesn't exist, even as a preprint. How does one deal with a system like this?
It would be like if there was a whole body of empirical evidence that supported the earth being spherical, but one person conducted a study that they say showed the earth was flat (unpublished), but asked us on the basis of that to stop referring to the earth being a globe…
And MSM platforms that study, even though 99% of peer reviewed published work shows otherwise.... it's not naive. It's deliberate. We know that 'studies' and 'opinions' that minimise the impacts of COVID-19 get huge platforms, even when they don't represent consensus evidence.
So what the public sees, and often what medics who are not deeply immersed in looking at the evidence themselves see is an ideology presented to them, rather than the majority of scientific evidence.
And finally, I’m going to start collecting here a very short list of absolutely essential Covid articles -- the kinds of articles that you can absolutely always have in your back pocket for discussions and debates and consciousness-raising. I’m starting with two and hoping to expand to five to ten, and I imagine that it would be an evolving list with items both added and subtracted over time. I intend to include it in most issues. If you have any suggestions, let me know in the comments!
Top Two Articles You Should Read on Covid
Real Impact of COVID-19 Infection and Why We Should Care by Jeff Gilchrist, PhD
What SARS-CoV-2 Does to the Body (3rd Edition, December 2023) / Pandemic Accountability Index
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Why scrapping the term ‘long COVID’ would be harmful for people with the condition by Deborah Lupton / The Conversation
The assertion from Queensland’s chief health officer John Gerrard that it’s time to stop using the term “long COVID” has made waves in Australian and international media over recent days.
Gerrard’s comments were related to new research from his team finding long-term symptoms of COVID are similar to the ongoing symptoms following other viral infections.
But there are limitations in this research, and problems with Gerrard’s argument we should drop the term “long COVID”. Here’s why. …
The words we use to describe illnesses and conditions are incredibly powerful. Naming a new condition is a step towards better recognition of people’s suffering, and hopefully, better diagnosis, health care, treatment and acceptance by others.
The term “long COVID” provides an easily understandable label to convey patients’ experiences to others. It is well known to the public. It has been routinely used in news media reporting and and in many reputable medical journal articles.
Most importantly, scrapping the label would further marginalise a large group of people with a chronic illness who have often been left to struggle behind closed doors.
Media celebrated Long COVID Awareness Day by denying its existence by Julia Doubleday / The Gauntlet
Four days later, on March 15 aka Long COVID Awareness Day, outlets across the globe chose to elevate an unpublished, un-peer-reviewed, observational text-message based “study,” and its absurd claim that Long COVID is nothing new and everyone should stop talking about it.
This political choice- elevating a single unpublished study which examined a total of zero patients and ran a total of zero tests- when tens of thousands of others contradict its findings, is unsurprising. The political choice to do so on a day intended to draw attention to the suffering of tens of millions of people is cruel in the extreme.
Long COVID Awareness Day intended to do just that; create awareness through organized actions, many of them put on by disabled people struggling with day-to-day activities. Major media outlets ensured that the top “Long COVID” results on Google that day would be minimizing, unscientific propaganda instead of news about activists, their work, their message, and their illness.
It feels tiresome to continually relitigate those tens of thousands, if not hundreds of thousands, of studies demonstrating the existence of post-COVID health impacts and in particular the cluster of symptoms known as Long COVID. Viral persistence, microclots in the blood and endothelial dysfunction, immune system dysregulation, mitochondrial damage leading to severe fatigue and exercise intolerance, blood-brain barrier disruption have all been documented in Long COVID patients. The CDC’s most recent data found that 6.8% of Americans are currently suffering from Long COVID, or approximately 24 million people. There is no legitimate scientific debate, whatsoever, about whether Long COVID “exists.”
If it feels like a waste of time to debate every minimizer and grifter popping up to proclaim COVID, a novel virus that has killed tens of millions of people since 2020 in one of the deadliest pandemics in human history, can’t possibly harm “healthy” people (whatever that means), it is. It is the same propaganda playbook used by Big Tobacco and Big Oil. Deny, deny, deny. Get people arguing with you about their very existence; they won’t have time to argue about their rights.
Long Covid Is a Disabling Disease—And It’s Not Rare by Alison Escalante / Psychology Today
I understand why Americans generally want to treat the COVID-19 pandemic like it’s over. Even so, let’s not forget that funding treatment-related research for Long Covid treatments continues to be an urgent need. Whether we fund research for Long Covid or try to ignore it, society is still paying the costs. Unemployment due to disability from Long Covid has been estimated to cost the U.S. 1 percent of GDP, or between $168 and $230 billion a year. By comparison, funding research is relatively cheap. It just makes sense to keep researching treatments that allow people like me to return to our work and our lives.
One in 20 young people have Long Covid; 3% of adults / NL Times
Around 5 percent of young people between the ages of 12 and 25 got Long Covid after a coronavirus infection. The same is true for 3 percent of adults over 26, the National Institute for Public Health and the Environment (RIVM) reported on Monday.
Almost 20 percent of adults and 25 percent of young people with Long Covid said their symptoms are severe enough to limit them in their daily lives. They often report exhaustion, concentration and memory problems, and shortness of breath. 39 percent of adults have had symptoms for one to two years, and 32 percent for two to three years. Among young people, 30 percent said one to two years, and 9 percent said two to three years.
Nearly 7% of Americans struggle with Long COVID as infections surge by Priya Joi / Gavi, the Vaccine Alliance
Around 17.6 million American adults are grappling with Long COVID, according to a recent survey conducted by the US Centers for Disease Control and Prevention (CDC). The uptick comes as the CDC eases COVID-19 isolation guidelines, a decision that has divided experts.
The percentage of Americans with Long COVID now stands at 6.8% and has risen by 1.5% since the last estimate of 5.3% in October 2023. The rise follows the second-biggest surge of infections across the US this winter, in which some health facilities returned to mask and limited-visitation policies.
‘Alarming’ rise in Americans with long Covid symptoms by Melody Schreiber / The Guardian
Some 6.8% of American adults are currently experiencing long Covid symptoms, according to a new survey from the US Centers for Disease Control and Prevention (CDC), revealing an “alarming” increase in recent months even as the health agency relaxes Covid isolation recommendations, experts say.
That means an estimated 17.6 million Americans could now be living with long Covid.
“This should be setting off alarms for many people,” said David Putrino, the Nash Family Director of the Cohen Center for Recovery From Complex Chronic Illness at Mount Sinai. “We’re really starting to see issues emerging faster than I expected.”
When the same survey was conducted in October, 5.3% of respondents were experiencing long Covid symptoms at the time.
The 1.5 percentage-point increase comes after the second-biggest surge of infections across the US this winter, as measured by available wastewater data.
Up to 5.8 million kids have long COVID, study says. One mother discusses the "heartbreaking" search for answers by Sara Moniuszko, Michael George / CBS News
Up to 5.8 million young people have long COVID, according to a recent study — and parents like Amanda Goodhart are looking for answers.
She says her 6-year old son Logan caught COVID multiple times. But even months later, his symptoms didn't get better.
"To see him struggle to stay awake, or crying and saying he doesn't feel good, it's heartbreaking, it's demoralizing, because there's not a lot of treatment options," she told CBS News.
New economic analysis reveals Long Covid could be a long-term drag on economic growth and add pressure to already strained NHS / Cambridge Econometrics
A new report by global economics consultancy Cambridge Econometrics reveals that Long Covid could have wider economic ramifications for the UK causing a drag on economic growth and added pressure on the NHS if no long-term healthcare funding commitments are made.
Funded by direct giving fund Balvi, and in partnership with Professor Emeritus in Public Health Ruairidh Milne from the University of Southampton, the report used available evidence on the cost of Long Covid treatment, economic inactivity among those living with the condition, and prevalence in the UK population to consider the long-term macroeconomic impacts on wider UK society by 2030.
Based on the assumption that there are no long-term healthcare funding commitments to manage Long Covid, the results estimate that Long Covid is likely to reduce GDP by around £1.5bn and 138,000 jobs each year. Were prevalence to increase to 4 million people per year by 2030, the negative impacts would increase to a reduction of around £2.7bn in GDP and 311,000 job losses each year.
Long COVID Patients, Advocates Rally for More Research, Funding, and Attention by Joyce Frieden / MedPage Today
As to how many patients are currently suffering from long COVID, "officially, I believe it's 18 million, but that's a vast undercount," he said. "So many people don't even know that their post-COVID conditions are related to COVID, because we're being told that it's equivalent to a cold."
Some of the speakers at the rally were very passionate. "We need antibodies now -- not in a year, not in 10 months, not eventually, now," said Robyn "the Redd" Saldino, a patient who has had long COVID for 2 years and works with Pan End It! , an advocacy group for COVID-19 precautions led by disabled, ill, and immunocompromised patients. "We need N-95 mandates -- not for some people, not just for providers, for everyone. Now. We need universal healthcare that actually covers healthcare. Now."
Addressing Congress directly, she said loudly, "What the f*** is wrong with you? This has gone on long enough. People are dead. People are dying. ... Get your s*** together and do something about it."
What we know about long COVID — from brain fog to physical fatigue by Will Stone, Margaret Cirino, Regina G. Barber, Rebecca Ramirez, Brit Hanson / NPR Shortwave
Doctors, too, feel unmoored by the lack of answers. "You do sort of feel like you're out in the wilderness," says Rasika Karnik, the medical director of UChicago Medicine's post-COVID. "It's hard to look a patient in the eyes and say 'we're not quite sure yet' and to keep repeating that."
There are currently no validated treatments for long COVID. There is not a widely established biomarker that can be used to diagnose it. Care clinics are hard to get into — and even if you do get in, most scientists believe this isn't just one illness in the first place.
Canadians with long COVID are struggling with myriad symptoms and patchwork treatments by Caora McKenna / Globe and Mail (non-paywalled version)
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.
4 years later, experts are just beginning to 'scratch the surface' of understanding long COVID by Mary Kekatos / ABC News
Doctors say that one of the most difficult things about treating long COVID patients is not having an answer about why they're feeling the way they feel or how to best treat them.
"I would probably say that's one of the hardest things about being a physician that takes care of this patient population," Azola said. "Because as physicians, we want to help people, we want to get them better, we want to have those answers. But in the case of long COVID, it's quite frustrating. We don't have those answers."
"You really need to kind of get comfortable with not knowing ... but also being curious and partnering with my patients to try to find creative ways that can be beneficial to them or finding creative ways to make their quality of life better," she added.
Scientists link being 'double jointed' to long COVID by Stephanie Soucheray / CIDRAP
A new study based on surveys collected as part of the COVID Symptom Study Biobank in the United Kingdom suggests that generalized joint hypermobility (GJH), commonly known as being double jointed, may be linked to developing long COVID.
The connective tissue disorder is often thought of as a benign condition, but the authors said these findings suggest it may reflect a genotype more susceptible to fatigue and post-viral sequelae.
Long Covid Stories
Covid casts long shadow over New Zealand paddler Jones | CNN
'It is real:' An Ontario researcher speaks out about her 18-month struggle with long COVID
I'm living with long COVID like millions of Americans. Please, don't forget about us.
Rudy Gobert tested positive for COVID-19 three years ago today. The world has never been the same
Woman with long COVID and Hashimoto’s debilitated by symptoms | Miami Herald
Long Covid Is a Disabling Disease—And It’s Not Rare | Psychology Today
As most have probably noticed, there is no paid subscription option for this newsletter. However, Substack does have an option where subscribers can pledge to subscribe “just in case” and a few kind subscribers have made that pledge. I very much appreciated the vote of confidence in what I’m doing here. What I’ve decided to do on a trial basis is to set up a “tip jar” on the Ko-fi platform. I’m not anticipating a huge surge of income from using Ko-fi but whatever revenue I do end up with, I plan to spend on supporting artists on Bandcamp. Sadly, who knows how long that will seem like a good idea.
Big Time Sarah, The Thrill is Gone.
Any suggestions on where we can get Covid rapid tests for home testing now that all the earlier ones are expiring? Preferably in the Toronto area!
Many thanks.