A lesson in moral panics doing a disservice to all
I'm sending this to neighbors in Berkeley who are somewhat panicked by the article in question. What great reporting and analysis.
Also, spot on about placebo effect. Three years ago the good doctors of Beijing Hospital #3 gave me an injection to my left groin, which we all knew was almost certainly injury free -- but so real. (Spinal damage was real, but my groin was fine) The effect was amazing. Care from medical staff that are aware that our heads are in our body: don't leave home without it.
I believe we can say that a journalism degree alone does not prepare one to analyze the medical literature. But the study authors are also guilty of promoting poor science.
I really appreciate you bringing up, even momentarily, the mind-body dualism. I think this is the huge unstudied and ignored area of health sciences. I hope it's something we see a wide range of research efforts give attention to in the coming decades. After all, when I was growing up in the 1980s there was very little understanding of things like trauma and poverty and how the kinds of physiological effects they have throughout life. There is so much more now.
You touch on comparative scales of causes of deaths for a particular cohort and I can’t resist sharing my favourite visualization for this https://pbs.twimg.com/media/EPpEiIMUcAAqwsy?format=jpg&name=medium
Causes on the top left tend to have smaller counts as young people die less. And yet they are highly impactful and we don’t want to miss them.
Thanks for this excellent post. I've been following the Long Covid discussions since the beginning and trying to find hard data and this has definitely been one of the most frustrating topics to get clarity on - especially on reasonable estimates of how common it is. The media narrative seems to often completely ignore it (focusing only on deaths and hospitalizations) or make it into a massive problem (10-30% of cases!).
Obviously we are in the middle of a pandemic and longterm effects are of lower priority to study compared to dealing with death and hospitalizations but I'd still have expected to have better data on at after a year. My sense is Long Covid is very much real but that the high estimates (e.g. 20% of people who get COVID have some form of _serious_ lingering effects) are vastly overblown and that the absence of evidence is at least partially evidence of absence. If those numbers were true we'd be seeing in lots of places, e.g. the medical system overrun with such cases and many more stories. But I'd have hoped that I could cite some real studies rather than having to mostly rely on logic like that.
I do know that several studies are being run (e.g.
https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications) but I personally haven't seen anything that's actually far along and gives some reasonable estimates.
In the meantime a lot of it is anecdotal or based on heavily biased samples, with very scary sounding numbers and framing. I ran across another example yesterday in the Atlantic:
"Today, informal estimates suggest that 10 to 30 percent of those infected with the novel coronavirus have long-term symptoms. “What people need to know is the pandemic’s toll is likely much higher than we are imagining,” Craig Spencer, the director of global health in emergency medicine at New York–Presbyterian/Columbia University Irving Medical Center, told me. “It is an area that merits urgent attention. There will be people living with the impact of COVID long after the pandemic is over. This is not made up or in the minds of people who are sickly. This is real.”"
Your third argument might even be stronger than you say. My understanding is that your third argument is actually a critique of the study, not the coverage of it. You quote the study:
Symptoms that are prevalent among long-haulers include (descending order): chest pain, dyspnea, anxiety, abdominal pain, cough, low back pain, and fatigue (See Figure 2B)
And, if I understand correctly, you argue that the study itself does not include adequate baselines or comparison groups.
But, here is where there is an additional criticism of the Times article. The Times article at a key point chooses to list only four of the symptoms:
More than 60 days after their infection, 27 percent, or 382 people, were struggling with post-Covid symptoms like shortness of breath, chest pain, cough or abdominal pain.
By not mentioning anxiety and fatigue, which seem like symptoms even more non-specific to COVID (or to any pathogen), the Times article may be accentuating the problem you are calling attention to even beyond the problem in the study itself.
Additionally, in the study’s abstract, the 27% figure appears to include a much longer list of symptoms, which contains not only anxiety and fatigue, but also headaches, palpitations, and insomnia. Again, your point about the lack of baseline and comparison group seems even stronger given that this broad constellation of symptoms is in play.
[disclaimer: I didn't read the original study in its entirety; and I don’t claim any special ability to read the med lit].
By the way, yours is the only individual newsletter I pay money for. In fact, for news and commentary, I pay for the NYT, the WaPo, The Guardian (by donation), and you. Thanks for consistently great analysis.
Do we even know for certain that everyone in the study had a primary care physician whose notes would be in the electronic medical records? Any chance that the study analyzed only the partial medical records that were available to them?
I am somewhat new to your work and am so appreciative of how you are trying to improve on the ways science is communicated (both by scientists and the general media). I have a few random comments:
1) I agree that the power of the placebo does get nearly enough attention, either through research or in the popular press. This seems like such a fundamental aspect of interpreting many medical observations, i.e. ways in which our expectations influence so much about the outcome. Maybe that can be one of your articles!
2) Are you aware of any studies that have tried to calculate the percentage of "long-Covid sufferers" who experienced moderate to significant Covid sxs first. It is a different type of comparison than what you point out but seems an important piece of the puzzle.
3) You likely discuss this in some of your other work, but I wish there was more attention media paid to how variables are operationalized in research. For instance, "severe Covid" seems to mean different things, depending on the source. Because the word "severe" sounds scary, it seems important to be consistent and to really understand what this means. It seems the medical definition focuses on changes to breathing (both rate and oxygen saturation) alone. How does this correlate then with other significant symptoms and likelihood of recovery? I wish all journalists included how the important variables were defined and measured as part of their "translation" of the studies.
it is my contention that patients who turn up at a doctor’s office complaining of vague subjective symptoms (pain, mental fog, weakness/fatigue) that are not also supported by objective evidence (objective symptoms/blood in stool/rash/etc, abnormal labs, abnormal imaging/EMG/etc) are common at any clinic let alone even a “post-covid clinic.” i should hope that no doctor in their right mind would make it their practice to dismiss any of their patient’s symptoms without at first looking for a piece of evidence that could support their patient’s claims.
to me this is the real conundrum within a concept like “long covid” is that it will invariably include in many cases those whose symptoms at the end of the day could not be backed up by any actual findings (other than say a positive Covid test) and nothing was known about what the state of their health was pre-Covid, and what changes, if any, they made towards their health post-Covid?
to your question how do you propose one even begin to understand the cohort that doesn’t as you say select itself into the study group?
I didn't read the NYT article when it first appeared; I must have used something like Zeynep's "authoritarian muscle memory" to ignore something that if true and then applied to 25 million US cases would result in heretofore unrecognized millions of Americans with debilitating illnesses.
This pandemic has made obvious how much we rely on well functioning institutions, and since the NYT is one of them, it is important to know what went wrong and how to encourage the NYT to fix it.
It is easy to see what went wrong. The reporter, Pam Belluck, was not critical of her own work, referring to other small, flawed studies with overstated conclusions to support her article without making an equal effort to find contrary opinions. Her editor failed, perhaps being unwilling to aggressively challenge a Pulitzer prize winning reporter.
Maybe there is no fix. Maybe reporters and editors, like the rest of us, learn best from our mistakes and the the most useful thing we can do is to point them out.