To muddy the waters even further, most people at this point have had both Covid vaccines and Covid itself. Any lingering symptoms tend to be interpreted politically; some people will say they have Long Covid while others with identical symptoms will say they're suffering adverse side effects of the vaccine.
That is such a good point about the vaccine, and that makes me think of this study done in Japan on HPV vaccine side effects where any symptom from the long list of potential symptoms that showed up
over FOUR YEARS after the vaccine was counted. How can proper research be done with such vague parameters?
“Meanwhile, the first symptom appeared from October 2010 to October 2015, and the age at the appearance of the first symptoms ranged from 12 to 20 years old (mean ± SD: 14.3 ± 1.6 years old). Thus, the time from the first vaccine dose to symptom onset ranged from 0 to 1532 days (median: 199 days). The interval between the onset of symptoms and our initial examination ranged from 0 to 85 months (median: 31 months)”
This “study” is the equivalent of a journalist who wants to offer a certain opinion or interpretation of an event, so goes to a source he or she knows will say the “right” thing, and uses that quote to express said opinion. There are supposed to be checks against that kind of practice in science. Thanks to Jesse for continuing to bring these things to light.
>That seems like a pretty stunning and sad story, and I couldn't believe someone could die of Long Covid, wouldn't they simply have died of Covid? A little digging though... you realize she
died of suicide.
As someone touched by suicide, this struck a nerve, so I read her public blog https://girltomom.com/about which chronicles her fight against Long Covid which she got in May 2020 (she does note her Covid test was negative though, but she is certain what she is feeling is Long Covid).
This is a very, very sad blog as you go through the entries - especially once you realize she has suffered from Long Covid for close to 30 years, and despite dabbling with every pseudoscience out there (chiropractors, naturopaths, Reiki, acupuncture, etc) hasn't been able to cure it.
At no point though through any of the articles covering this tragic death did a single reporter note that she had Long Covid since the 90's and perhaps the people who suffer from Long Covid might be suffering from Somatic Symptom Disorder, Chronic Fatigue Syndrome, or any of the other possible post Viral Illnesses which have always been with us.
Nor does anyone at People seem to think perhaps beaming about the centerpieces while Heidi's Widower marries Heidi's best friend and founder of Long Covid Support might be in bad taste.
That blog is heartbreaking to read. It seems so clear that whatever was wrong wasn't covid, even as someone whose first covid symptom was back pain (followed by respiratory symptoms and a positive test).
Yea, this article made me think of fibromyalgia, which has a huge comorbidity with chronic fatigue, anxiety, etc. Fibromyalgia has its own history of “is it real? should we trust the women who diagnose themselves with this?”. I've met/worked with (massage therapy) many women with fibromyalgia. I don't doubt that they're experiencing *something*, but it's tough to pinpoint exactly what that is.
as soon as I saw “84% female,” this is exactly where my mind jumped. but I also thought of endometriosis and other very real female maladies that don’t get taken seriously because they *are* limited to women.
Like breast cancer? Sorry, I missed the study where male-specific maladies are all over the news while women's issues are swept under the rug. Post the link.
Until big pharma created drugs for Fybromyalgia and it became an easy way to fob off women (with a variety of complaints) by just handing them a prescription.
I was reading the latest issue of American Family Physician and in its Long Covid Rapid Evidence Review opens by citing that 10% - 30% of the hundreds of millions of people who have had Covid experience Long Covid. [1]
With a modicum of common sense, anyone should be able to spot this is as pure, unadulterated, bullshit*.
There is no way 30%, let alone 10%, or even 1% of people who had Covid will have Long Covid. For a moment I thought I must have picked up an old back issue from early 2020, but no, this was the most recent coverage. It’s just that in the 2.5 years since the pandemic, it continues to cite 2 year old surveys from the UK and pass that off as evidence.
I penned the lengthy essay below to go through this nonsense, though it is in a more measured tone than I am using now.
The TL;DR would be:
1) Incidence rates of Long Covid are based off of garbage surveys, and while that may have been the best we could offer in the first months of the pandemic, there is no excuse to not have rigor in defining, sampling, and addressing Long Covid today. That there isn’t the slightest bit of skepticism in mainstream thinking which is a huge red flag. If you were to use the same methodology to find incidence of Covid Vaccine Injury these same physicians would immediately (and rightfully) reject the claim due to faulty evidence collection. Yet you apply that sort of garbage to Long Covid and suddenly it’s valid Science. Ridiculous.
2) Simple thought experiments can demonstrate the ridiculousness of these claims. Take any definable public group, see how many have long Covid, and compare that to what the CDC says to expect. I started with the NBA (n = 450), and found zero. Repeat as needed. I think the highest I could find was Congress, 1 out of 535.
3) Post Viral Syndrome is a real thing. Every single infection, whether bacterial, fungal, or viral has a small but non-zero chance of causing lasting long-term ailments. The epidemiology to find the causal relationship between infection and unspecified long-term illness down the road is notoriously difficult which is why prior to 2020 was approached with humility of our limitations (and the hypothesis that some may be somatic was not heretical either). Any methodology to establish a link to the 14 possible Long Covid ailments and Covid-19 should also be applied to every single other pathogen to help us reduce risk of scrutiny and sampling bias. It also seems incidence of Long Covid varies by media coverage of Long Covid among different countries.
4) Fear of Long Covid is more harmful than Long Covid itself. The number of hypochondriacs trading their children’s’ limited years of childhood in exchange for a false sense of safety is thankfully dwindling, but there are still many continuing to sacrifice “once in a lifetime” events all because they have been convinced and reassured by the AAP and CDC that there is a major risk of their child getting Long Covid if they… go to lapsit storytime, go to school without a mask, have playdates, sleepovers, Proms, First Dates, Graduations, Birthday parties, amusement parks, weddings or funerals, etc
It is important not to dismiss Long Covid nor overstate it’s prevalence.
Long Covid is certainly real, but it is a disservice to those affected with Long Covid to inflate how many people suffer from Long Covid.
Unfortunately mainstream public health, including the CDC [1] as well as respected medical journals [2] continue to repeat incidence rates that likely overestimate frequency by several magnitudes. The CDC regularly cites “10%, 20%, and 30%” rates, I suspect it is likely much closer to 1 in 500 (.2%).
For many this sounds like an extraordinary claim, as the 10%-30% rates have become nearly embedded in the Covid Zeitgeist as a self-evident truth, but I think a simple examination of the source of the claim followed by some thought experiments can close the rate gap between perception and reality.
Source Claim Evaluation
First, let us review where these high incidence rates come from: surveys. Self reported surveys. The bottom tier of the scientific pyramid of evidence. While meta analysis of double blind RCTs is at the top, self reported surveys rest at the bottom.
From the earliest Long Covid studies [3] to the most recent [1], we keep finding that self reporting drives these incredibly high rates. Greenhalgh et al in “Management of post-acute covid-19 in primary care” (Aug 2020) writes “Around 10% of patients who have tested positive for SARS-CoV-2 virus remain unwell beyond three weeks” which was based on self reporting of an unknown set of patients in the UK who were hospitalized with acute covid early in the pandemic and then given an app from Zoe Health so they could log how they are feeling daily. [4]
I recently downloaded the Zoe app with the intention to log in daily and report symptoms of which there are 14 choice like hair loss (apparently then I have had Long Covid since 2016), lower back pain, depression, drowsiness, rashes, etc. By day 3 I forgot to login already, which is likely what everyone else who feels fine would do – forget to report to the app they feel fine. Sick people are far more likely to login.
The CDC writes “Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID” (Oct 2022), citing the ongoing Pulse census survey [5]. Reading through the technical notes of the Pulse survey, a more accurate title for the CDC report would be “Of the 1 in 25 people who responded to our survey, Nearly 1 in 5 people self reported long Covid”.
That exposes one of the simple flaws of a survey, selection bias. Of the roughly 40,000 people sent the Pulse survey, only 4% responded. Looking through the questionnaire [6], it is easy to see why there was such low response rate as you apparently have to go through a staggering 39 pages of questions to complete the survey. (And perhaps explains why in the Limitations they note: “The response rate for the Household Pulse Survey was substantially lower than most federally sponsored surveys.”)
Who has time or motivation to complete such a survey? People who want their voice to be heard which heavily biases those with Long Covid.
It is no different than the common Sales aphorism that “a happy customer tells 1 friend, an angry customer tells 10”. In this case if you had Covid and feel fine, you will be less inclined to wade through a 39 page questionnaire than someone who has been unable to work since their illness.
For those who believe they feel fine and still decide to complete the survey, it’s possible another problem of surveys - “response bias” - will capture people who didn’t even realize they had Long Covid until the survey phrasing lead them to affirm a positive response.
Consider the vagueness of symptoms of Long Covid the Pulse survey lists on page 12 (PASC2):
“tiredness or fatigue, difficulty thinking, concentrating, forgetfulness, or memory problems (sometimes referred to as "brain fog", difficulty breathing or shortness of breath, joint or muscle pain, fast-beating or pounding heart (also known as heart palpitations), chest pain, dizziness on standing, menstrual changes, changes to taste/smell, or inability to exercise.”
Who hasn’t felt those symptoms in the past 3 months? I would be shocked if you randomly chose 100 people in 2019 and forced them to complete this survey you wouldn’t get at least a 20% affirmative response to this binary “yes or no” question. Indeed, similar scrutiny has found “post viral syndrome” following pneumonia [7], “long strep” aka PANDAS following a streptococcal infection in children.
I am also unclear if later questions of the survey can trigger a “positive for long covid” flag, consider the health questions starting on page 26 such as ”Over the last 2 weeks, how often have you been bothered by... Feeling nervous, anxious, or on edge?” Would selecting “yes” also group in you Long Covid group? I am not sure (if anyone wants to put a second or third set of eyes on this, much appreciated).
This skepticism is no different than how I approach vaccine injury claims. If someone tells me that 1 in 5 children suffer an injury following varicella vaccination, and upon scrutinizing their claim I see that this was based on parents choosing to reply to a survey, I would immediately (and correctly) call out the massive selection bias. This is why I remain skeptical when people use VAERS self reporting to argue against Covid vaccination. That skepticism needs to be applied equally to all claims, even against he ones we favor.
Thought Experiments
Criticism of the “10% - 30%” claims can be measured against some stress tests beyond a critique of the self reporting surveys. While these high numbers seemed feasible early in the pandemic when the number of infections was in the thousands, we are now at a point where it is widely agreed nearly everyone has had Covid at least once [10]. Therefore, if Long Covid was this high, it would be readily tangible. For example, if your office employs 100 people, and none of the 100 have Long Covid, you would sense the 10%-30% rate feels incompatible with your experience. Applying this to the 120 staff at my children’s school, none appear to have long Covid. Nor do any of the 700 students. Of my immediate and extended family (n = 26), none have long Covid. Am I extremely lucky? Is there something about Cleveland which staves off depression? (Unlikely!)
These are personal anecdotes and certainly commentators, as they often do on Twitter, Reddit, and other social media platforms, can easily refute my positive anecdotes with their negative anecdotes, so instead I think we could agree on definable groups of high visible people and examine Long Covid in them.
For example, there are 450 players in the NBA, so if the CDC reference is correct, a minimum of 45 players should be out with Long Covid, or at the very least struggling to remain on the active roster. Yet I can find no report of any NBA player with Long Covid. Applying this methodology to NHL (n = 1100), WNBA (n = 168), the NFL (1696) or NCAAF (n = 71,000) I can only find 3 players reported to be struggling with Long Covid: Brandon Sutter of the NHL, Justin Foster in NCAAF, and AD Durr of the WNBA – 2 of which were vaccinated and still got Long Covid. That is 3 players out of a pool of roughly 74,000.
Perhaps elite athletes are less at risk of Long Covid? Then consider the US Congress, n = 539. I can only find one person with Long Covid, senator Tim Kaine. Long Covid skews towards middle aged women though, with 68% more women reporting Long Covid then men, so perhaps with less than 30% of congress being female this isn’t a representative sample?
Yet every definable high visible group I apply this stress test to I keep coming up with fractions of the Long Covid rates the CDC finds through surveys. Whether it’s the Rockettes, the cast of Hamilton, the New York Yankees, or the staff at my favorite Pub, I can never find 1% let along 30% or even 10%.
I believe this is one of many factors contributing to the erosion of trust from the CDC and public health – the common person - having no understanding of statistics or study methodology - is still able to deduce on their own that these rates are ridiculous based on personal experience. To me it no different than being to spot the bullshit of 12% of people having claimed to see a UFO [11] when XKCD already pointed out what it’s probably zero [12]
Another great experiment would be to measure the prevalence of Long Covid as a function of how much attention it receives in the media at the country level. I suspect a strong correlation between how much the news talks about Long Covid and how many people identify as having Long Covid. In theory incidence rates of Long Covid should be very similar between countries unless there are some genetic predispositions we are unaware of. It instead we find out that the US, which regularly see Long Covid in the newpaper has higher rates of Long Covid than Denmark, where it rarely gets mentioned, we can consider that the disorder may be a result of overdiagnosis, scrutiny, shared social contagion, generalized somatic disorder, or (likely) a combination of all.
The Risk of Overstating Long Covid
Beyond the erosion of trust in the CDC and public health officials uncritically passing along these outrageous prevalence rates, there are three other distinct harms from overstating the risk of Long Covid.
First, is that by expanding the definition and creating so nebulous of a symptom pool, we may delegitimatize those truly suffering from Long Covid. Consider how often someone who says they have gluten intolerance gets an eyeroll because it became an in vogue condition to have, and how that popularity of having gluten sensitivity harmed those who truly have the condition. Likewise I sense that people suffering from Long Covid in the coming months/years will be suspected of having a psychosomatic disorder rather than a real physical condition. And anyone who has gone down the rabbit of these types of Chronic Fatigue Syndromes/MEs knows that it took decades for clinical medicine to take them serious. This could be a massive setback.
Second, how much wasted money, research, and manpower will be misallocated towards Long Covid if we don’t first scrutinize how we are sampling and collecting those suffering from Long Covid? Research and money are limited, and it would be a shame if we misallocated that precious resource, Time.
Third, and I think most important, look how many parents have exchanged crucial years of their children’s finite childhood for avoidance of Long Covid which they did so because they were mislead on true risk. While we see fewer and fewer kids being restricted from enjoying their childhood, there are still a number of parents whose children continue to miss out on lapsit storytime, birthday parties, school dances, (school entirely), first dates, visits with Grandma, sports and other extracurricular activities, sleepovers, and on and on. All partly driven out of fear of Long Covid.
Last week when commenting on Your Local Epidemiologists "State of Affairs" I received a thoughtful reply that I think illustrates this fear, ADWH writes “…The toll that this sort of vigilance has taken on our family has been a whole other virus. And the evidence makes me feel as if we were duped. I am still very much afraid of Covid and long Covid, but we lost two years of a finite childhood.” [13]
In August of 2020, after I took my kids (then 10 and 4) to the indoor waterpark Kalahari, a very cautious friend rebuked my decision as they felt it was reckless to risk death or Long Covid, and I couldn’t help but reply “where was your fear of PANDAS when your kids had strep? Or post viral syndrome following the flu? Why weren’t you terrified of post viral syndrome before it started being discussed daily on CNN? It was always there. Every single virus, bacterial, fungal infection carries a non zero risk of causing long term symptoms.”
We should be presenting the absolute risk with a comparison of similar risks from the other thousand or million disease out there, to give proper context, and stop promoting a culture of fear.
Thank you for this. I've been skeptical of Long Covid as a thing because the numbers were so outlandish and the symptomalogy so vague that my bullshit meter has been blaring for two years. I can now at least buy into it being a real thing, even if The Science around it and the MSM are complete shitshows.
I want to point out that a lot of this patient-defined Long covid "research" has similarities with what are often referred to as "contested diagnoses" like chronic Lyme disease (as opposed to post-treatment sequelae) or adrenal fatigue (definitely a fake disease). A significant number of Long Covid activists were also active in these contested diagnosis activist groups.
Activists for these contested diseases have often employed the type of methodology you see in the paper you're critiquing. Self-diagnosis is sufficient, the person suffering from the symptoms is assumed to know the cause of their symptoms etc. Unfortunately, Long Covid claims aren't getting the kind of scrutiny they deserve because of the politicization of the pandemic.
At this point there is so much social value in being part of an “oppressed class” that people will believe whatever it takes to consider themselves part of one.
Oh that is so interesting. I remember the first time I heard about long covid, I was like "really? the symptoms look like a burnout to me" and the more we heard, the more it started to include like EVERY symptom of every aspect, so much that I once said "I cannot wait to get COVID to finally have answers to the shitty discomforts I have been having for years". People called me bigot. Anyway, it's fun how suddenly, you have to "have it" to explain it, a new social condition like you have to be Jewish to talk about jews, and you have to be not-white to talk about racism and you have to be trans for your opinion to have credibility. Thanks for this.
I predict "Long COVID" will be the Gulf War Syndrome of our times. Yes, there are side effects to trauma (war/severe disease) but there won't be enough direct causation to connect one with the other to call it a unique or special illness. For instance, I saw one paper that said up to 70% of Long COVID patients had a "severe" course of COVID. Do we have any studies on how many people suffer fatigue (because it's the most often cited symptom) after a severe case of flu? Cancer? It may just be that severe disease leads to long recovery times but is not a distinct condition on its own. After all, where are all the Gulf War Syndrome sufferers today?
There are so many what I think are simple Qs regarding Covid which should be answered by now.
Like:
Of the approx 1900 kids under the age of 18 who have died of Covid from March 2020 (per CDC tracker), how many were severely ill prior to contracting Covid?
Are surgical masks of any value in containing the spread of Covid?
Of people vacced for Covid, what are the numbers hospitalized for Covid (by age) as compared to non vacced?
Why aren't the answers to these Qs readily available?
The short answer is because we mere peasants can't be trusted with all the facts. We might start doing our own unauthorized risk/benefit calculations on things like masking & boosters.
I think it's something like 75% of kids who died of Covid had some sort of serious health condition. When you look at kids who died of Covid, but didn't have a serious health problem, they frequently had a risk factor for severe Covid like obesity.
When it comes to surgical masks, any effect on transmission is so small it's difficult to measure. Which is scientist-speak for basically no effect.
I agree that these are very important questions and the CDC et al aren't really doing much to provide answers. Part of this seems to be due to many health officials believing that accurate information will cause the public to behave in a manner they regard as irresponsible.
Do you know where the 75% number comes from. Honestly, with 1900 kids (approx) dead, it shouldn't be that hard for the CDC to get death certificates which should include secondary causes of death. Let me know if I am mistaken.
I think with the effect of masking, there are two separate questions. There's the individual question of if wearing a mask protects the wearer, which is basically a no, and the collective question of if everyone wearing a mask can minimize the spread of the disease, which I think might be a vague yes, but exact measurements are hard. I could be mistaken on this, though.
My big thing with long Covid is generally people also underwent massive life changes.
I for instance I (think I) got COVID in the initial large surge in MAR 2020, though I was never tested since there were no tests and recovered after a couple weeks of mild sickness. Except then in APR 2020 I got a serious lung infection and was hospitalized. The doctors thought the infection was directly related to COVID, but once again didn’t test me because they only got around to thinking about testing me after I had stabilized and by then I wasn’t dying and tests were scarce.
All that summer my cardio never felt close to fully recovered, and I had little access to my normal gym.
During thanksgiving I get COVID again, and am sick and overly tired and listless for a month or two, but maybe some of that is mixed with SAD as I live in the north.
Ok so then in 2021 (and this year) I continue to feel like my heart and lung capacity is shit and I feel like I have aged 5-10 years in 2020, and seem to struggle a bit more with health and day-to-day. Sounds like classic long COVID right?
Except I also put on 40 lbs during 2020, and did get a years older, and was generally wildly less active than I normally am. You don’t think that has something to do with it?
Anyway I think unless I actually lose that weight and get myself back into the shape I was in late 2019, it’s going to be pretty hard to know whether it is “long COVID” or “aging + lifestyle changes + increased weight”.
And even if I do lose that weight and get more active (I already workout a decent amount, but it used to be a lot more) by then I will be 42 instead of 38, and a lot of people’s well being is declining at that time.
Again, so much of the burden that journals are supposed to bear are regarding weeding out these poorly done papers. When people say that the institution of science is being torn apart from the inside, it isn't the fact that someone wrote this paper, it's that a journal as prestigious as PLOS ONE published it which is a problem.
I know there are practical realities around funding, but I really wish people would take rigorous scientific research seriously for its own sake. The more people see junk like this, the more likely they are to just shrug and say "well you can cook up a study to say any old thing" and dismiss out of hand any new information that conflicts with their priors.
My friend suffers from what was diagnosed as Chronic Fatigue Syndrome. She now just tells people that she has Long Covid so that they don't roll their eyeballs at her. I told her she probably does have a version of Long Covid because maybe CFS is in itself a side effect of getting a certain virus. We know that which viruses you get as a kid can influence which ailments you'll be susceptible to or immune from in the future. As a believer in the Wuhan Lab theory, who knows what this contrived virus will do long-term.
I subscribe to Psypost's regular digest of psyche 'science' and have concluded that a lot of this work is nothing more than group signalling, pursuit of political aims and PR. It works well on all 3 measures, judging by Google. This one's a treat though, for including the 'lived experience' of some in the team as somehow validating.
I’m really glad you’re covering this. I’ve been wondering about how the inclusion of more and more symptoms that can come and go in a longer and longer time frame is affecting the quality of research h and the meaningfulness of the diagnosis. What happens when the self-diagnose of long Covid becomes something that can’t be questioned and prevents people from getting the actual medical or mental healthcare they need?
To muddy the waters even further, most people at this point have had both Covid vaccines and Covid itself. Any lingering symptoms tend to be interpreted politically; some people will say they have Long Covid while others with identical symptoms will say they're suffering adverse side effects of the vaccine.
That is such a good point about the vaccine, and that makes me think of this study done in Japan on HPV vaccine side effects where any symptom from the long list of potential symptoms that showed up
over FOUR YEARS after the vaccine was counted. How can proper research be done with such vague parameters?
“Meanwhile, the first symptom appeared from October 2010 to October 2015, and the age at the appearance of the first symptoms ranged from 12 to 20 years old (mean ± SD: 14.3 ± 1.6 years old). Thus, the time from the first vaccine dose to symptom onset ranged from 0 to 1532 days (median: 199 days). The interval between the onset of symptoms and our initial examination ranged from 0 to 85 months (median: 31 months)”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8402449/
This “study” is the equivalent of a journalist who wants to offer a certain opinion or interpretation of an event, so goes to a source he or she knows will say the “right” thing, and uses that quote to express said opinion. There are supposed to be checks against that kind of practice in science. Thanks to Jesse for continuing to bring these things to light.
On the gender disparity, chronic fatigue also has a 5:1 F:M rate, and I think I saw that a lot of long covid people also have/had chronic fatigue.
Saw this headline two weeks ago and did a deep dive:
"Man Who Lost Wife to Long COVID Marries Activist Who Helped Him Grieve in Stunning Sunset Wedding"
https://people.com/human-interest/long-covid-activists-nick-guthe-diana-berrent-marry-real-life-love/
>That seems like a pretty stunning and sad story, and I couldn't believe someone could die of Long Covid, wouldn't they simply have died of Covid? A little digging though... you realize she
died of suicide.
As someone touched by suicide, this struck a nerve, so I read her public blog https://girltomom.com/about which chronicles her fight against Long Covid which she got in May 2020 (she does note her Covid test was negative though, but she is certain what she is feeling is Long Covid).
This is a very, very sad blog as you go through the entries - especially once you realize she has suffered from Long Covid for close to 30 years, and despite dabbling with every pseudoscience out there (chiropractors, naturopaths, Reiki, acupuncture, etc) hasn't been able to cure it.
At no point though through any of the articles covering this tragic death did a single reporter note that she had Long Covid since the 90's and perhaps the people who suffer from Long Covid might be suffering from Somatic Symptom Disorder, Chronic Fatigue Syndrome, or any of the other possible post Viral Illnesses which have always been with us.
Nor does anyone at People seem to think perhaps beaming about the centerpieces while Heidi's Widower marries Heidi's best friend and founder of Long Covid Support might be in bad taste.
What do I know though.
That blog is heartbreaking to read. It seems so clear that whatever was wrong wasn't covid, even as someone whose first covid symptom was back pain (followed by respiratory symptoms and a positive test).
Yea, this article made me think of fibromyalgia, which has a huge comorbidity with chronic fatigue, anxiety, etc. Fibromyalgia has its own history of “is it real? should we trust the women who diagnose themselves with this?”. I've met/worked with (massage therapy) many women with fibromyalgia. I don't doubt that they're experiencing *something*, but it's tough to pinpoint exactly what that is.
as soon as I saw “84% female,” this is exactly where my mind jumped. but I also thought of endometriosis and other very real female maladies that don’t get taken seriously because they *are* limited to women.
Like breast cancer? Sorry, I missed the study where male-specific maladies are all over the news while women's issues are swept under the rug. Post the link.
Until big pharma created drugs for Fybromyalgia and it became an easy way to fob off women (with a variety of complaints) by just handing them a prescription.
immune issues can be more common in female adults, aka, those who used to be called women.
I was reading the latest issue of American Family Physician and in its Long Covid Rapid Evidence Review opens by citing that 10% - 30% of the hundreds of millions of people who have had Covid experience Long Covid. [1]
With a modicum of common sense, anyone should be able to spot this is as pure, unadulterated, bullshit*.
There is no way 30%, let alone 10%, or even 1% of people who had Covid will have Long Covid. For a moment I thought I must have picked up an old back issue from early 2020, but no, this was the most recent coverage. It’s just that in the 2.5 years since the pandemic, it continues to cite 2 year old surveys from the UK and pass that off as evidence.
I penned the lengthy essay below to go through this nonsense, though it is in a more measured tone than I am using now.
The TL;DR would be:
1) Incidence rates of Long Covid are based off of garbage surveys, and while that may have been the best we could offer in the first months of the pandemic, there is no excuse to not have rigor in defining, sampling, and addressing Long Covid today. That there isn’t the slightest bit of skepticism in mainstream thinking which is a huge red flag. If you were to use the same methodology to find incidence of Covid Vaccine Injury these same physicians would immediately (and rightfully) reject the claim due to faulty evidence collection. Yet you apply that sort of garbage to Long Covid and suddenly it’s valid Science. Ridiculous.
2) Simple thought experiments can demonstrate the ridiculousness of these claims. Take any definable public group, see how many have long Covid, and compare that to what the CDC says to expect. I started with the NBA (n = 450), and found zero. Repeat as needed. I think the highest I could find was Congress, 1 out of 535.
3) Post Viral Syndrome is a real thing. Every single infection, whether bacterial, fungal, or viral has a small but non-zero chance of causing lasting long-term ailments. The epidemiology to find the causal relationship between infection and unspecified long-term illness down the road is notoriously difficult which is why prior to 2020 was approached with humility of our limitations (and the hypothesis that some may be somatic was not heretical either). Any methodology to establish a link to the 14 possible Long Covid ailments and Covid-19 should also be applied to every single other pathogen to help us reduce risk of scrutiny and sampling bias. It also seems incidence of Long Covid varies by media coverage of Long Covid among different countries.
4) Fear of Long Covid is more harmful than Long Covid itself. The number of hypochondriacs trading their children’s’ limited years of childhood in exchange for a false sense of safety is thankfully dwindling, but there are still many continuing to sacrifice “once in a lifetime” events all because they have been convinced and reassured by the AAP and CDC that there is a major risk of their child getting Long Covid if they… go to lapsit storytime, go to school without a mask, have playdates, sleepovers, Proms, First Dates, Graduations, Birthday parties, amusement parks, weddings or funerals, etc
*George Carlin
[1] https://www.aafp.org/pubs/afp/issues/2022/1100/long-covid.html#afp20221100p523-sort3A
Long Covid
It is important not to dismiss Long Covid nor overstate it’s prevalence.
Long Covid is certainly real, but it is a disservice to those affected with Long Covid to inflate how many people suffer from Long Covid.
Unfortunately mainstream public health, including the CDC [1] as well as respected medical journals [2] continue to repeat incidence rates that likely overestimate frequency by several magnitudes. The CDC regularly cites “10%, 20%, and 30%” rates, I suspect it is likely much closer to 1 in 500 (.2%).
For many this sounds like an extraordinary claim, as the 10%-30% rates have become nearly embedded in the Covid Zeitgeist as a self-evident truth, but I think a simple examination of the source of the claim followed by some thought experiments can close the rate gap between perception and reality.
Source Claim Evaluation
First, let us review where these high incidence rates come from: surveys. Self reported surveys. The bottom tier of the scientific pyramid of evidence. While meta analysis of double blind RCTs is at the top, self reported surveys rest at the bottom.
From the earliest Long Covid studies [3] to the most recent [1], we keep finding that self reporting drives these incredibly high rates. Greenhalgh et al in “Management of post-acute covid-19 in primary care” (Aug 2020) writes “Around 10% of patients who have tested positive for SARS-CoV-2 virus remain unwell beyond three weeks” which was based on self reporting of an unknown set of patients in the UK who were hospitalized with acute covid early in the pandemic and then given an app from Zoe Health so they could log how they are feeling daily. [4]
I recently downloaded the Zoe app with the intention to log in daily and report symptoms of which there are 14 choice like hair loss (apparently then I have had Long Covid since 2016), lower back pain, depression, drowsiness, rashes, etc. By day 3 I forgot to login already, which is likely what everyone else who feels fine would do – forget to report to the app they feel fine. Sick people are far more likely to login.
The CDC writes “Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID” (Oct 2022), citing the ongoing Pulse census survey [5]. Reading through the technical notes of the Pulse survey, a more accurate title for the CDC report would be “Of the 1 in 25 people who responded to our survey, Nearly 1 in 5 people self reported long Covid”.
That exposes one of the simple flaws of a survey, selection bias. Of the roughly 40,000 people sent the Pulse survey, only 4% responded. Looking through the questionnaire [6], it is easy to see why there was such low response rate as you apparently have to go through a staggering 39 pages of questions to complete the survey. (And perhaps explains why in the Limitations they note: “The response rate for the Household Pulse Survey was substantially lower than most federally sponsored surveys.”)
Who has time or motivation to complete such a survey? People who want their voice to be heard which heavily biases those with Long Covid.
It is no different than the common Sales aphorism that “a happy customer tells 1 friend, an angry customer tells 10”. In this case if you had Covid and feel fine, you will be less inclined to wade through a 39 page questionnaire than someone who has been unable to work since their illness.
For those who believe they feel fine and still decide to complete the survey, it’s possible another problem of surveys - “response bias” - will capture people who didn’t even realize they had Long Covid until the survey phrasing lead them to affirm a positive response.
Consider the vagueness of symptoms of Long Covid the Pulse survey lists on page 12 (PASC2):
“tiredness or fatigue, difficulty thinking, concentrating, forgetfulness, or memory problems (sometimes referred to as "brain fog", difficulty breathing or shortness of breath, joint or muscle pain, fast-beating or pounding heart (also known as heart palpitations), chest pain, dizziness on standing, menstrual changes, changes to taste/smell, or inability to exercise.”
Who hasn’t felt those symptoms in the past 3 months? I would be shocked if you randomly chose 100 people in 2019 and forced them to complete this survey you wouldn’t get at least a 20% affirmative response to this binary “yes or no” question. Indeed, similar scrutiny has found “post viral syndrome” following pneumonia [7], “long strep” aka PANDAS following a streptococcal infection in children.
cont>
I am also unclear if later questions of the survey can trigger a “positive for long covid” flag, consider the health questions starting on page 26 such as ”Over the last 2 weeks, how often have you been bothered by... Feeling nervous, anxious, or on edge?” Would selecting “yes” also group in you Long Covid group? I am not sure (if anyone wants to put a second or third set of eyes on this, much appreciated).
This skepticism is no different than how I approach vaccine injury claims. If someone tells me that 1 in 5 children suffer an injury following varicella vaccination, and upon scrutinizing their claim I see that this was based on parents choosing to reply to a survey, I would immediately (and correctly) call out the massive selection bias. This is why I remain skeptical when people use VAERS self reporting to argue against Covid vaccination. That skepticism needs to be applied equally to all claims, even against he ones we favor.
Thought Experiments
Criticism of the “10% - 30%” claims can be measured against some stress tests beyond a critique of the self reporting surveys. While these high numbers seemed feasible early in the pandemic when the number of infections was in the thousands, we are now at a point where it is widely agreed nearly everyone has had Covid at least once [10]. Therefore, if Long Covid was this high, it would be readily tangible. For example, if your office employs 100 people, and none of the 100 have Long Covid, you would sense the 10%-30% rate feels incompatible with your experience. Applying this to the 120 staff at my children’s school, none appear to have long Covid. Nor do any of the 700 students. Of my immediate and extended family (n = 26), none have long Covid. Am I extremely lucky? Is there something about Cleveland which staves off depression? (Unlikely!)
These are personal anecdotes and certainly commentators, as they often do on Twitter, Reddit, and other social media platforms, can easily refute my positive anecdotes with their negative anecdotes, so instead I think we could agree on definable groups of high visible people and examine Long Covid in them.
For example, there are 450 players in the NBA, so if the CDC reference is correct, a minimum of 45 players should be out with Long Covid, or at the very least struggling to remain on the active roster. Yet I can find no report of any NBA player with Long Covid. Applying this methodology to NHL (n = 1100), WNBA (n = 168), the NFL (1696) or NCAAF (n = 71,000) I can only find 3 players reported to be struggling with Long Covid: Brandon Sutter of the NHL, Justin Foster in NCAAF, and AD Durr of the WNBA – 2 of which were vaccinated and still got Long Covid. That is 3 players out of a pool of roughly 74,000.
Perhaps elite athletes are less at risk of Long Covid? Then consider the US Congress, n = 539. I can only find one person with Long Covid, senator Tim Kaine. Long Covid skews towards middle aged women though, with 68% more women reporting Long Covid then men, so perhaps with less than 30% of congress being female this isn’t a representative sample?
Yet every definable high visible group I apply this stress test to I keep coming up with fractions of the Long Covid rates the CDC finds through surveys. Whether it’s the Rockettes, the cast of Hamilton, the New York Yankees, or the staff at my favorite Pub, I can never find 1% let along 30% or even 10%.
I believe this is one of many factors contributing to the erosion of trust from the CDC and public health – the common person - having no understanding of statistics or study methodology - is still able to deduce on their own that these rates are ridiculous based on personal experience. To me it no different than being to spot the bullshit of 12% of people having claimed to see a UFO [11] when XKCD already pointed out what it’s probably zero [12]
Another great experiment would be to measure the prevalence of Long Covid as a function of how much attention it receives in the media at the country level. I suspect a strong correlation between how much the news talks about Long Covid and how many people identify as having Long Covid. In theory incidence rates of Long Covid should be very similar between countries unless there are some genetic predispositions we are unaware of. It instead we find out that the US, which regularly see Long Covid in the newpaper has higher rates of Long Covid than Denmark, where it rarely gets mentioned, we can consider that the disorder may be a result of overdiagnosis, scrutiny, shared social contagion, generalized somatic disorder, or (likely) a combination of all.
The Risk of Overstating Long Covid
Beyond the erosion of trust in the CDC and public health officials uncritically passing along these outrageous prevalence rates, there are three other distinct harms from overstating the risk of Long Covid.
First, is that by expanding the definition and creating so nebulous of a symptom pool, we may delegitimatize those truly suffering from Long Covid. Consider how often someone who says they have gluten intolerance gets an eyeroll because it became an in vogue condition to have, and how that popularity of having gluten sensitivity harmed those who truly have the condition. Likewise I sense that people suffering from Long Covid in the coming months/years will be suspected of having a psychosomatic disorder rather than a real physical condition. And anyone who has gone down the rabbit of these types of Chronic Fatigue Syndromes/MEs knows that it took decades for clinical medicine to take them serious. This could be a massive setback.
Second, how much wasted money, research, and manpower will be misallocated towards Long Covid if we don’t first scrutinize how we are sampling and collecting those suffering from Long Covid? Research and money are limited, and it would be a shame if we misallocated that precious resource, Time.
Third, and I think most important, look how many parents have exchanged crucial years of their children’s finite childhood for avoidance of Long Covid which they did so because they were mislead on true risk. While we see fewer and fewer kids being restricted from enjoying their childhood, there are still a number of parents whose children continue to miss out on lapsit storytime, birthday parties, school dances, (school entirely), first dates, visits with Grandma, sports and other extracurricular activities, sleepovers, and on and on. All partly driven out of fear of Long Covid.
Last week when commenting on Your Local Epidemiologists "State of Affairs" I received a thoughtful reply that I think illustrates this fear, ADWH writes “…The toll that this sort of vigilance has taken on our family has been a whole other virus. And the evidence makes me feel as if we were duped. I am still very much afraid of Covid and long Covid, but we lost two years of a finite childhood.” [13]
In August of 2020, after I took my kids (then 10 and 4) to the indoor waterpark Kalahari, a very cautious friend rebuked my decision as they felt it was reckless to risk death or Long Covid, and I couldn’t help but reply “where was your fear of PANDAS when your kids had strep? Or post viral syndrome following the flu? Why weren’t you terrified of post viral syndrome before it started being discussed daily on CNN? It was always there. Every single virus, bacterial, fungal infection carries a non zero risk of causing long term symptoms.”
We should be presenting the absolute risk with a comparison of similar risks from the other thousand or million disease out there, to give proper context, and stop promoting a culture of fear.
_______________________
[1] Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID” https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm
[2] Long COVID: Rapid Evidence Review
https://www.aafp.org/pubs/afp/issues/2022/1100/long-covid.html#afp20221100p523-sort3A
[3] Management of post-acute covid-19 in primary care
https://www.bmj.com/content/370/bmj.m3026.long
[4] https://covid-webflow.joinzoe.com/post/covid-long-term
[5] https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm
[6] https://www2.census.gov/programs-surveys/demo/technical-documentation/hhp/Phase_36_Household_Pulse_Survey_ENGLISH.pdf
[7] https://pmj.bmj.com/content/postgradmedj/64/753/559.full.pdf
[8] https://www.nimh.nih.gov/health/publications/pandas
[9] https://www.cdc.gov/me-cfs/about/index.html
[10] https://time.com/6170735/how-many-people-have-had-covid-19/
[11] https://www.answers.com/Q/How_many_people_have_seen_a_UFO
[12] https://xkcd.com/1235/
[13] https://yourlocalepidemiologist.substack.com/p/state-of-affairs-november-16-2022/comment/10520763
Thank you for a thoughtful summary of where we are now. Can I copy and send it out to friends and relations?
Of course, feel free to attach my contact info if anyone cares to offer feedback/critique. Email in my profile.
Wow- I've just looked at The Fear of a Microbial Planet substack. Really interesting! Thanks!
Thank you for this. I've been skeptical of Long Covid as a thing because the numbers were so outlandish and the symptomalogy so vague that my bullshit meter has been blaring for two years. I can now at least buy into it being a real thing, even if The Science around it and the MSM are complete shitshows.
a rate between 1 and 10% isn't going to be totally off, but how long is the "Long COVID"?
More than 4 weeks. Which is totally possible because a particularly bad chest infection can also linger for more than 4 weeks.
Thank you for this!
I want to point out that a lot of this patient-defined Long covid "research" has similarities with what are often referred to as "contested diagnoses" like chronic Lyme disease (as opposed to post-treatment sequelae) or adrenal fatigue (definitely a fake disease). A significant number of Long Covid activists were also active in these contested diagnosis activist groups.
Activists for these contested diseases have often employed the type of methodology you see in the paper you're critiquing. Self-diagnosis is sufficient, the person suffering from the symptoms is assumed to know the cause of their symptoms etc. Unfortunately, Long Covid claims aren't getting the kind of scrutiny they deserve because of the politicization of the pandemic.
Sigh. The overlap with ME/CFS and long COVID is also high.
That might be because they are post-viral conditions, and thus have a similar set of symptoms and patient profile, though.
At this point there is so much social value in being part of an “oppressed class” that people will believe whatever it takes to consider themselves part of one.
Oh that is so interesting. I remember the first time I heard about long covid, I was like "really? the symptoms look like a burnout to me" and the more we heard, the more it started to include like EVERY symptom of every aspect, so much that I once said "I cannot wait to get COVID to finally have answers to the shitty discomforts I have been having for years". People called me bigot. Anyway, it's fun how suddenly, you have to "have it" to explain it, a new social condition like you have to be Jewish to talk about jews, and you have to be not-white to talk about racism and you have to be trans for your opinion to have credibility. Thanks for this.
I predict "Long COVID" will be the Gulf War Syndrome of our times. Yes, there are side effects to trauma (war/severe disease) but there won't be enough direct causation to connect one with the other to call it a unique or special illness. For instance, I saw one paper that said up to 70% of Long COVID patients had a "severe" course of COVID. Do we have any studies on how many people suffer fatigue (because it's the most often cited symptom) after a severe case of flu? Cancer? It may just be that severe disease leads to long recovery times but is not a distinct condition on its own. After all, where are all the Gulf War Syndrome sufferers today?
There are so many what I think are simple Qs regarding Covid which should be answered by now.
Like:
Of the approx 1900 kids under the age of 18 who have died of Covid from March 2020 (per CDC tracker), how many were severely ill prior to contracting Covid?
Are surgical masks of any value in containing the spread of Covid?
Of people vacced for Covid, what are the numbers hospitalized for Covid (by age) as compared to non vacced?
Why aren't the answers to these Qs readily available?
The short answer is because we mere peasants can't be trusted with all the facts. We might start doing our own unauthorized risk/benefit calculations on things like masking & boosters.
I think it's something like 75% of kids who died of Covid had some sort of serious health condition. When you look at kids who died of Covid, but didn't have a serious health problem, they frequently had a risk factor for severe Covid like obesity.
When it comes to surgical masks, any effect on transmission is so small it's difficult to measure. Which is scientist-speak for basically no effect.
I agree that these are very important questions and the CDC et al aren't really doing much to provide answers. Part of this seems to be due to many health officials believing that accurate information will cause the public to behave in a manner they regard as irresponsible.
Do you know where the 75% number comes from. Honestly, with 1900 kids (approx) dead, it shouldn't be that hard for the CDC to get death certificates which should include secondary causes of death. Let me know if I am mistaken.
I think with the effect of masking, there are two separate questions. There's the individual question of if wearing a mask protects the wearer, which is basically a no, and the collective question of if everyone wearing a mask can minimize the spread of the disease, which I think might be a vague yes, but exact measurements are hard. I could be mistaken on this, though.
My big thing with long Covid is generally people also underwent massive life changes.
I for instance I (think I) got COVID in the initial large surge in MAR 2020, though I was never tested since there were no tests and recovered after a couple weeks of mild sickness. Except then in APR 2020 I got a serious lung infection and was hospitalized. The doctors thought the infection was directly related to COVID, but once again didn’t test me because they only got around to thinking about testing me after I had stabilized and by then I wasn’t dying and tests were scarce.
All that summer my cardio never felt close to fully recovered, and I had little access to my normal gym.
During thanksgiving I get COVID again, and am sick and overly tired and listless for a month or two, but maybe some of that is mixed with SAD as I live in the north.
Ok so then in 2021 (and this year) I continue to feel like my heart and lung capacity is shit and I feel like I have aged 5-10 years in 2020, and seem to struggle a bit more with health and day-to-day. Sounds like classic long COVID right?
Except I also put on 40 lbs during 2020, and did get a years older, and was generally wildly less active than I normally am. You don’t think that has something to do with it?
Anyway I think unless I actually lose that weight and get myself back into the shape I was in late 2019, it’s going to be pretty hard to know whether it is “long COVID” or “aging + lifestyle changes + increased weight”.
And even if I do lose that weight and get more active (I already workout a decent amount, but it used to be a lot more) by then I will be 42 instead of 38, and a lot of people’s well being is declining at that time.
Again, so much of the burden that journals are supposed to bear are regarding weeding out these poorly done papers. When people say that the institution of science is being torn apart from the inside, it isn't the fact that someone wrote this paper, it's that a journal as prestigious as PLOS ONE published it which is a problem.
I know there are practical realities around funding, but I really wish people would take rigorous scientific research seriously for its own sake. The more people see junk like this, the more likely they are to just shrug and say "well you can cook up a study to say any old thing" and dismiss out of hand any new information that conflicts with their priors.
My friend suffers from what was diagnosed as Chronic Fatigue Syndrome. She now just tells people that she has Long Covid so that they don't roll their eyeballs at her. I told her she probably does have a version of Long Covid because maybe CFS is in itself a side effect of getting a certain virus. We know that which viruses you get as a kid can influence which ailments you'll be susceptible to or immune from in the future. As a believer in the Wuhan Lab theory, who knows what this contrived virus will do long-term.
I subscribe to Psypost's regular digest of psyche 'science' and have concluded that a lot of this work is nothing more than group signalling, pursuit of political aims and PR. It works well on all 3 measures, judging by Google. This one's a treat though, for including the 'lived experience' of some in the team as somehow validating.
I’m really glad you’re covering this. I’ve been wondering about how the inclusion of more and more symptoms that can come and go in a longer and longer time frame is affecting the quality of research h and the meaningfulness of the diagnosis. What happens when the self-diagnose of long Covid becomes something that can’t be questioned and prevents people from getting the actual medical or mental healthcare they need?
One of the better studies on Long Covid seems to demonstrate that it is just the same old post-viral syndrome we've had forever: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2799116