On a new PLOS ONE study about “Long Covid stigma”
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.
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.
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. 
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
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.
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.
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?
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