(Reposting a comment I made to Jesse Singal earlier this week, this was a morbidly fascinating story I dug through, and I think highlights how the media is incurious when reporting on Long Covid)
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"
>That seems like a tragic 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 entire public blog https://girltomom.com/about which chronicles her fight against Long Covid which she got in May 2020 (never mind she notes her Covid test was negative, 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 his dead wife's close friend and founder of Long Covid Support might be in bad taste. That sunset was just so gorgeous!
When I recently began seeing ICD codes reading something like "unable to administer vaccine due to patient refusal", I realized it had become CMS administrative overkill.
When I saw the listing of "suspected exposure to someone infected with C19", I realized what nonsense this had become.
When I saw how hospitals are penalized and reimbursed based on coding, I realized this was a gov't funded $ scheme.
Another great example of the incurious press, this article from the NYT last month.
Here, a physician in NYC is puzzled on why after caring for so many minority patients hopstialized with Covid, the Long Covid Clinic she set up to address the expected deluge of Long Covid Minority patients instead is filled with white middle class women who self refer. Puzzling!
Mid quote of article:
"Still, of the more than 1,200 patients seen at our clinic between April 2021 and April 2022, nearly 80 percent were white and just over 70 percent were female. In contrast, it seemed those that we cared for in the hospital, particularly in the first pandemic wave, were disproportionately Black and Hispanic men. “Looking at the data, we know we’re not seeing the patients who bore the brunt of Covid hospitalizations,” Dr. Gay told me."
Gifted a link below, works for about 2 weeks, partial excerpts before link.
__________
"Where Are All Our Post-Covid Patients?"
9/26/22 - Guest Essay by Dr Daniela Lama
"Two years ago, during the worst of the Covid pandemic, my colleagues and I told ourselves what now seems like a naïve story.
In the wake of this virus, we would develop a robust system of follow-up care for the patients who had been sickest in our hospital, many of whom were from medically underserved communities. We knew that survivors of severe illness and lengthy hospitalization were likely to be affected by the unintended legacy of critical care, termed post-intensive care syndrome — anxiety, depression, post-traumatic stress and cognitive dysfunction. To say nothing of the scarred lungs and profound weakness that could come from weeks on a ventilator.
With this in mind, we developed the Covid Recovery Center, a clinic — like many others throughout the country — dedicated to serving patients who had been stricken with Covid-19 and its aftereffects. Surely those who bore the brunt of this illness would benefit from dedicated screening and follow-up that might not otherwise be accessible to them.
And yet when it opened, the clinic was deluged with self-referrals from patients who had not been hospitalized. Instead, they were experiencing what we now know as “long Covid” — a constellation of debilitating fatigue, shortness of breath, neurologic symptoms and more that can occur even after mild infection.
Still, of the more than 1,200 patients seen at our clinic between April 2021 and April 2022, nearly 80 percent were white and just over 70 percent were female. In contrast, it seemed those that we cared for in the hospital, particularly in the first pandemic wave, were disproportionately Black and Hispanic men. “Looking at the data, we know we’re not seeing the patients who bore the brunt of Covid hospitalizations,” Dr. Gay told me."
The biggest problem with "long COVID" is that it is one name for dozens of sequelae. Or, more appropriately, "one hashtag."
7-months post-exposure, I can finally say conclusively that I have kicked my own round of "long COVID." I actually tried to get into the INSPIRE study, but they did not take applicants from Hawaii. And yet, the fatigue I had was all-encompassing. As someone with ADHD, having zero energy was a brand new experience for me (to say the least). I was desperate for any advice that might help me recover anything at all. After about 2 months, I took a chance on some Zyrtec, and that seemed to help (I had the MCAS flavor of Long COVID - apparently). From there forward, I made a steady but very slow recovery. Today marks the 4th day in a row that I could walk 1 mile without being bedridden the next day.
I'm actually pleased that the results of this study came back in the way they did. It shows that the ME/CFS folks who were debilitated by the colds and flu of years gone by may finally get some attention. Many of those folks on Twitter have been rabidly jealous of the attention Long COVID was getting. I can hardly blame them after seeing the results of this study.
Thanks Vinay for making a point about ICD coding. This kind of "clinical information" is not infrequently used in various species of data-dredging studies that have been trotted out as legit epidemiology research. Many C.V.s have been embellished as a consequence. In the mid 1980s, as healthcare headed down the commode while it rapidly underwent anamorphosis to an "industry", the Grease & Grin boys who zealously were championing so-called "quality improvement science" started flooding literature with all sorts of easy-to-run, quick and dirty "studies" that spawned a menagerie of "demonstration projects" in which all sorts of Administrative Data (like ICD codes) had been garnered patient-wise for exploitation as independent variables that might "affect outcomes" (judged by presuming that mere associations in crude observational data sets equated with causal discoveries). Now these chickens have come home to roost as an irksome feature of the COVID pandemic. Using administrative data in ridiculous ways is a superbly keen tactic for "discovering" bullshit associations (or non-associations) that can and surely will mislead not only any rubes, hicks, yokels, or goobers among us. This silly stuff is pseudoscience. And it stinks.
Would love to read a patient and systematic take-down of the scare-mongering "studies" put out by Dr. Al-Aly and colleagues at the St. Louis VA. To experts well-versed in statistics, it may be obvious why this work can't be taken seriously. But to most ordinary citizens it comes off as compelling and often terrifying -- especially when breathlessly touted in news outlets (such as NPR, Washington Post etc.) they regard as high-quality and "pro-science."
The worst recent example was the study purporting to show that second and third Covid-19 infections were MORE serious than first-time infections. Not only did a prior case of Covid offer no protection in the event of a second case, it said -- the damage could be "cumulative" and your odds of serious illness would actually rise.
A few news outlets cautioned that "VA patients are unlike the general population" being older, sicker and more male. But this hardly scratched the surface of the problem. The study did nothing to compare, say, Ralph's first case of Covid with his second case. Instead, it compared Ralph (the guy with one VA-treated case) with his poor old Uncle Eddie (the guy with two or three VA-treated cases). Of course, Uncle Eddie is 20-30 years older than Ralph, suffers from emphysema and kidney failure and lives at the Veterans' Home downstate. If Eddie was more likely than Ralph to have a stroke or memory loss six months after his last case of Covid, that's no surprise!
Many of my friends are also terrified by estimates that "one in five" Covid infections will result in Long Covid. As near as I can tell, these are based on the numbers of people who report still having at least one Covid-related symptom one month after diagnosis. I suspect this lumps together a small, seriously impaired minority with a much larger group who may still have a nagging cough or feel a bit dragged out (problems that are unlikely to become chronic).
These studies are being used to rally support for re-imposing ineffective and damaging restrictions -- mask mandates, booster mandates, shutdowns of indoor gatherings, etc. In the process they worsen the political polarization that plagues us. I cannot question them without being accused of being both anti-compassion and anti-science. We really need credible scientists to step forward.
Thank you for that summary! Thank you for bringing light to it! Those of us that have been in practice a while could have told you those conclusions 3 years ago. This is not hard science.
(Reposting a comment I made to Jesse Singal earlier this week, this was a morbidly fascinating story I dug through, and I think highlights how the media is incurious when reporting on Long Covid)
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 tragic 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 entire public blog https://girltomom.com/about which chronicles her fight against Long Covid which she got in May 2020 (never mind she notes her Covid test was negative, 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 his dead wife's close friend and founder of Long Covid Support might be in bad taste. That sunset was just so gorgeous!
When I recently began seeing ICD codes reading something like "unable to administer vaccine due to patient refusal", I realized it had become CMS administrative overkill.
When I saw the listing of "suspected exposure to someone infected with C19", I realized what nonsense this had become.
When I saw how hospitals are penalized and reimbursed based on coding, I realized this was a gov't funded $ scheme.
Another great example of the incurious press, this article from the NYT last month.
Here, a physician in NYC is puzzled on why after caring for so many minority patients hopstialized with Covid, the Long Covid Clinic she set up to address the expected deluge of Long Covid Minority patients instead is filled with white middle class women who self refer. Puzzling!
Mid quote of article:
"Still, of the more than 1,200 patients seen at our clinic between April 2021 and April 2022, nearly 80 percent were white and just over 70 percent were female. In contrast, it seemed those that we cared for in the hospital, particularly in the first pandemic wave, were disproportionately Black and Hispanic men. “Looking at the data, we know we’re not seeing the patients who bore the brunt of Covid hospitalizations,” Dr. Gay told me."
Gifted a link below, works for about 2 weeks, partial excerpts before link.
__________
"Where Are All Our Post-Covid Patients?"
9/26/22 - Guest Essay by Dr Daniela Lama
"Two years ago, during the worst of the Covid pandemic, my colleagues and I told ourselves what now seems like a naïve story.
In the wake of this virus, we would develop a robust system of follow-up care for the patients who had been sickest in our hospital, many of whom were from medically underserved communities. We knew that survivors of severe illness and lengthy hospitalization were likely to be affected by the unintended legacy of critical care, termed post-intensive care syndrome — anxiety, depression, post-traumatic stress and cognitive dysfunction. To say nothing of the scarred lungs and profound weakness that could come from weeks on a ventilator.
With this in mind, we developed the Covid Recovery Center, a clinic — like many others throughout the country — dedicated to serving patients who had been stricken with Covid-19 and its aftereffects. Surely those who bore the brunt of this illness would benefit from dedicated screening and follow-up that might not otherwise be accessible to them.
And yet when it opened, the clinic was deluged with self-referrals from patients who had not been hospitalized. Instead, they were experiencing what we now know as “long Covid” — a constellation of debilitating fatigue, shortness of breath, neurologic symptoms and more that can occur even after mild infection.
Still, of the more than 1,200 patients seen at our clinic between April 2021 and April 2022, nearly 80 percent were white and just over 70 percent were female. In contrast, it seemed those that we cared for in the hospital, particularly in the first pandemic wave, were disproportionately Black and Hispanic men. “Looking at the data, we know we’re not seeing the patients who bore the brunt of Covid hospitalizations,” Dr. Gay told me."
____________
https://www.nytimes.com/2022/09/26/opinion/post-covid-care.html?unlocked_article_code=20TVq3dkldT1n-QvUK0mE9OILamfYXHBKDHwhYwFHwwziRZ5E7so3RKxfyy7o9vU7GrWrV5I2-5ZPDZjMPV8mjCqxB0XtBSVipOr533LsMw9IUIfxdvnY1c_Q9PnAW-anUChdSN-VQfdkrhrWG1AJw6Tkie08IrXvqXVeW9yaZOyoBb6o8NwBJRsSoTOElH7bdoOgBsiJ_PUJLpEJicXaoDosoWol4Aj4z5l-rkGrCbot-uidvjqxOpSUhZFDrWRT7vAPvq3T_eJ3-45F1Zak6GGC0ZfVlR-f2DPfB7pcQXgcjpYzt_aYdG59FtFcAoZqQlY9E9OfBaLsA&smid=share-url
The biggest problem with "long COVID" is that it is one name for dozens of sequelae. Or, more appropriately, "one hashtag."
7-months post-exposure, I can finally say conclusively that I have kicked my own round of "long COVID." I actually tried to get into the INSPIRE study, but they did not take applicants from Hawaii. And yet, the fatigue I had was all-encompassing. As someone with ADHD, having zero energy was a brand new experience for me (to say the least). I was desperate for any advice that might help me recover anything at all. After about 2 months, I took a chance on some Zyrtec, and that seemed to help (I had the MCAS flavor of Long COVID - apparently). From there forward, I made a steady but very slow recovery. Today marks the 4th day in a row that I could walk 1 mile without being bedridden the next day.
I'm actually pleased that the results of this study came back in the way they did. It shows that the ME/CFS folks who were debilitated by the colds and flu of years gone by may finally get some attention. Many of those folks on Twitter have been rabidly jealous of the attention Long COVID was getting. I can hardly blame them after seeing the results of this study.
Thanks Vinay for making a point about ICD coding. This kind of "clinical information" is not infrequently used in various species of data-dredging studies that have been trotted out as legit epidemiology research. Many C.V.s have been embellished as a consequence. In the mid 1980s, as healthcare headed down the commode while it rapidly underwent anamorphosis to an "industry", the Grease & Grin boys who zealously were championing so-called "quality improvement science" started flooding literature with all sorts of easy-to-run, quick and dirty "studies" that spawned a menagerie of "demonstration projects" in which all sorts of Administrative Data (like ICD codes) had been garnered patient-wise for exploitation as independent variables that might "affect outcomes" (judged by presuming that mere associations in crude observational data sets equated with causal discoveries). Now these chickens have come home to roost as an irksome feature of the COVID pandemic. Using administrative data in ridiculous ways is a superbly keen tactic for "discovering" bullshit associations (or non-associations) that can and surely will mislead not only any rubes, hicks, yokels, or goobers among us. This silly stuff is pseudoscience. And it stinks.
Would love to read a patient and systematic take-down of the scare-mongering "studies" put out by Dr. Al-Aly and colleagues at the St. Louis VA. To experts well-versed in statistics, it may be obvious why this work can't be taken seriously. But to most ordinary citizens it comes off as compelling and often terrifying -- especially when breathlessly touted in news outlets (such as NPR, Washington Post etc.) they regard as high-quality and "pro-science."
The worst recent example was the study purporting to show that second and third Covid-19 infections were MORE serious than first-time infections. Not only did a prior case of Covid offer no protection in the event of a second case, it said -- the damage could be "cumulative" and your odds of serious illness would actually rise.
A few news outlets cautioned that "VA patients are unlike the general population" being older, sicker and more male. But this hardly scratched the surface of the problem. The study did nothing to compare, say, Ralph's first case of Covid with his second case. Instead, it compared Ralph (the guy with one VA-treated case) with his poor old Uncle Eddie (the guy with two or three VA-treated cases). Of course, Uncle Eddie is 20-30 years older than Ralph, suffers from emphysema and kidney failure and lives at the Veterans' Home downstate. If Eddie was more likely than Ralph to have a stroke or memory loss six months after his last case of Covid, that's no surprise!
Many of my friends are also terrified by estimates that "one in five" Covid infections will result in Long Covid. As near as I can tell, these are based on the numbers of people who report still having at least one Covid-related symptom one month after diagnosis. I suspect this lumps together a small, seriously impaired minority with a much larger group who may still have a nagging cough or feel a bit dragged out (problems that are unlikely to become chronic).
These studies are being used to rally support for re-imposing ineffective and damaging restrictions -- mask mandates, booster mandates, shutdowns of indoor gatherings, etc. In the process they worsen the political polarization that plagues us. I cannot question them without being accused of being both anti-compassion and anti-science. We really need credible scientists to step forward.
Thank you for that summary! Thank you for bringing light to it! Those of us that have been in practice a while could have told you those conclusions 3 years ago. This is not hard science.
What is URI?