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We need to talk about #LongCovid.
Many who had #COVID19 continue to experience complications long after their initial illness.
In this
below, I expand on what @angie_rasmussen and I discussed in this @ASlavitt podcast to outline what we do know and what needs to come next... https://twitter.com/ASlavitt/status/1302943395174907905
Many who had #COVID19 continue to experience complications long after their initial illness.
In this
below, I expand on what @angie_rasmussen and I discussed in this @ASlavitt podcast to outline what we do know and what needs to come next... https://twitter.com/ASlavitt/status/1302943395174907905
In that episode, youâll notice how often we say âI think â instead of a definitive âwe knowâ.
But that doesn't mean we don't know a lot. We can draw from similar illnesses and the growing body of research, especially the patient-led work being done by #longhaulers themselves.
But that doesn't mean we don't know a lot. We can draw from similar illnesses and the growing body of research, especially the patient-led work being done by #longhaulers themselves.
So first, what ARE âlong-covidâ and chronic covid?
Thereâs no formally accepted definition, but post-covid ( #LongCovid) includes those who haven't returned to baseline ~3 weeks after the onset of first symptoms.
And chronic covid includes those months out with ongoing symptoms.
Thereâs no formally accepted definition, but post-covid ( #LongCovid) includes those who haven't returned to baseline ~3 weeks after the onset of first symptoms.
And chronic covid includes those months out with ongoing symptoms.
Itâs absolutely no surprise that many who survived an initial bout of covid19 - even if that illness was mild - continue to experience symptoms weeks and months out. Weâve seen this with many other viral illnesses, including covid19âs close coronavirus cousins, SARS and MERS.
In one study of SARS survivors, 24% had markedly diminished exercise capacity and health status compared to the general population at 12 months after illness onset.
https://www.hkmj.org/system/files/hkm0912sp8p21.pdf
https://www.hkmj.org/system/files/hkm0912sp8p21.pdf
Another showed that 2 years after SARS onset, more than 50% of SARS survivors had impairment in lung function tests and "their exercise capacity and health status were remarkably lower than that of the general population." https://onlinelibrary.wiley.com/doi/full/10.1111/j.1440-1843.2010.01720.x
Dozens of other studies outline how both SARS & MERS left many survivors with long-term health conditions.
Enduring fatigue, inability to return to work, and ongoing mental health challenges were incredibly common, in addition to the cardiac, respiratory & neurologic symptoms.
Enduring fatigue, inability to return to work, and ongoing mental health challenges were incredibly common, in addition to the cardiac, respiratory & neurologic symptoms.
We know what viruses can do to the immune system long-term. And we know that other coronaviruses have left survivors with similar symptoms.
So why are covid long-haulers having such a hard time being taking seriously?
So why are covid long-haulers having such a hard time being taking seriously?
As someone who treated hundreds of covid19 patients in NYC and sees them frequently in the ER, I know how this virus touched nearly every organ system, and how many still haven't recovered months after their initial illness.
But in a sense, I'm also a long-hauler my self.
But in a sense, I'm also a long-hauler my self.
In 2014 I fell ill with Ebola after taking care of patients in Guinea. I spent 19 days in the hospital, and thankfully ultimately survived.
But for months I had joint and muscle pains. It hurt to walk. My hair fell out in chunks. All of that got better.
But some things didn't.
But for months I had joint and muscle pains. It hurt to walk. My hair fell out in chunks. All of that got better.
But some things didn't.
To this date, nearly 6 years after my 'recovery', I continue to experience difficulty concentrating. My ability to create new memories is drastically reduced. I forget names and details of people I knew very, very well. And in the past 6 years, it hasn't gotten any better.
Honestly, it almost feels as if the virus indiscriminately pulled a razor blade through my brain, severing old memories at random, and on it's way out dropped glue in its tracks to make it hard to create new ones.
In discussions I've had with many covid long-haulers, both in the ER and online, I've heard so many describe symptoms similar to what I experienced in the months after my illness.
The fatigue, 'brain fog', and feeling better some days and worse the next.
The fatigue, 'brain fog', and feeling better some days and worse the next.
This @DavidLat piece outlines how many other long-covid patients feel:
"Recovering from a severe case of COVID-19 is not like switching a light on or off. Itâs more like a dimmer switch, where the light gets brighter, then darker, then brighter again." https://www.latimes.com/opinion/story/2020-07-09/op-ed-people-ask-me-if-ive-recovered-from-covid-19-thats-not-an-easy-question-to-answer
"Recovering from a severe case of COVID-19 is not like switching a light on or off. Itâs more like a dimmer switch, where the light gets brighter, then darker, then brighter again." https://www.latimes.com/opinion/story/2020-07-09/op-ed-people-ask-me-if-ive-recovered-from-covid-19-thats-not-an-easy-question-to-answer
So What Research Do We Have for COVID19?
So much of what we know about long-haulers is actually from long-haulers themselves.
Groups like Body Politic ( @itsbodypolitic) led the first detailed patient surveys and have set up expansive support groups.
https://patientresearchcovid19.com/research/report-1/
So much of what we know about long-haulers is actually from long-haulers themselves.
Groups like Body Politic ( @itsbodypolitic) led the first detailed patient surveys and have set up expansive support groups.
https://patientresearchcovid19.com/research/report-1/
Their findings were further supported by a recent @CDCgov study from July 31 which showed 35% of covid19 patients had not returned to their usual state of health when interviewed 2â3 weeks after testing. Those with chronic conditions were impacted most. https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm?s_cid=mm6930e1_e&deliveryName=USCDC_921-DM33740
This same study also found that among young adults aged 18â34 with no chronic medical conditions, nearly one in five reported they had not returned to their usual state of health 14â21 days after testing.
This is particularly concerning as outbreaks emerge at college campuses.
This is particularly concerning as outbreaks emerge at college campuses.
Even kids are suffering with long-term covid complications as well.
You may have heard about hundreds of cases of multisystem inflammatory syndrome (MISC) affecting children and adolescents, often weeks after a covid infection.
But the impact is bigger. https://undark.org/2020/09/02/kids-covid-19-long-haulers/?fbclid=IwAR0SouK4e0ef7Jy_xmgYsn8pHRJfP__DmLFP3PkWOYOi88AzsXUODJMqGf4
You may have heard about hundreds of cases of multisystem inflammatory syndrome (MISC) affecting children and adolescents, often weeks after a covid infection.
But the impact is bigger. https://undark.org/2020/09/02/kids-covid-19-long-haulers/?fbclid=IwAR0SouK4e0ef7Jy_xmgYsn8pHRJfP__DmLFP3PkWOYOi88AzsXUODJMqGf4
GENERAL:
Although covid19 is primarily defined by its respiratory pathology - low oxygen, pneumonia, ARDS - it impacts nearly every organ system in one way or the other.
This is true for the acute (early) infection but likely defines the long-term and chronic impacts as well.
Although covid19 is primarily defined by its respiratory pathology - low oxygen, pneumonia, ARDS - it impacts nearly every organ system in one way or the other.
This is true for the acute (early) infection but likely defines the long-term and chronic impacts as well.
What percentage of those with covid19 are affected with long-term symptoms?
We donât know for sure, but multiple studies have suggest approximately 10% of people experience prolonged illness after covid-19.
At even a fraction of that, the toll is huge. https://www.bmj.com/content/370/bmj.m3026
We donât know for sure, but multiple studies have suggest approximately 10% of people experience prolonged illness after covid-19.
At even a fraction of that, the toll is huge. https://www.bmj.com/content/370/bmj.m3026
This study from Rome showed the overwhelming majority of hospitalized patients still struggling with symptoms 60 days out. Fatigue, difficulty breathing, joint pain & chest pain persisted in many. 87% still had at least one symptom, and 55% had 3 or more. https://jamanetwork.com/journals/jama/fullarticle/2768351
CARDIAC (
):
To date, covid19 has been associated with many long-term findings, including inflammation of the heart muscle (myocarditis) or the sac around the heart (pericarditis), as well as abnormal heart rhythms. Some may develop cardiomyopathy ( doesn't pump effectively).
):To date, covid19 has been associated with many long-term findings, including inflammation of the heart muscle (myocarditis) or the sac around the heart (pericarditis), as well as abnormal heart rhythms. Some may develop cardiomyopathy (
doesn't pump effectively).
Recently, covid19 myocarditis has been in the news a lot.
That's because a lot of college and professional atheletes have been found to have it after a bout of covid19 -sometimes mild cases - forcing leagues and players themselves to call off the season. https://www.scientificamerican.com/article/covid-19-can-wreck-your-heart-even-if-you-havent-had-any-symptoms/
That's because a lot of college and professional atheletes have been found to have it after a bout of covid19 -sometimes mild cases - forcing leagues and players themselves to call off the season. https://www.scientificamerican.com/article/covid-19-can-wreck-your-heart-even-if-you-havent-had-any-symptoms/
Thereâve been a few studies outlining the longer-term cardiac impact of covid19.
This one from Wuhan showed majority (15/26) had sustained cardiac involvement at median of 47 days after symptom onset; primarily edema, fibrosis, and impairedfunction.
https://linkinghub.elsevier.com/retrieve/pii/S1936878X20304034
This one from Wuhan showed majority (15/26) had sustained cardiac involvement at median of 47 days after symptom onset; primarily edema, fibrosis, and impaired
function. https://linkinghub.elsevier.com/retrieve/pii/S1936878X20304034
Another from Germany showed that amongst hospitalized & non-hospitalized patients (average age 49), 78% had cardiac involvement and 60% had heart inflammation on MRI on average 2 months after symptom onset. Many also had impaired heart function (lower EF). https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916
RESPIRATORY:
Unsurprisingly, given that itâs primarily a respiratory virus, the long-term lung damage from covid19 is substantial.
Emerging data indicate that many patients âexperience persistent respiratory symptoms months after their initial illness.â https://www.bmj.com/content/370/bmj.m3001
Unsurprisingly, given that itâs primarily a respiratory virus, the long-term lung damage from covid19 is substantial.
Emerging data indicate that many patients âexperience persistent respiratory symptoms months after their initial illness.â https://www.bmj.com/content/370/bmj.m3001
Like SARS & MERS (where 30% had persistent lung abnormalities after their acute illness), breathlessness & cough long after recovery from covid19 are commonly reported.
There's also fibrosis (scarring), bronchiectasis (damage to bronchial tubes) and pulmonary vascular disease.
There's also fibrosis (scarring), bronchiectasis (damage to bronchial tubes) and pulmonary vascular disease.
RESPIRATORY:
But we also know that those who are put into pulmonary rehabilitation early on have better and faster resolution of underlying damage and symptoms. https://eurekalert.org/pub_releases/2020-09/elf-cps090320.php
But we also know that those who are put into pulmonary rehabilitation early on have better and faster resolution of underlying damage and symptoms. https://eurekalert.org/pub_releases/2020-09/elf-cps090320.php
RENAL (Kidney):
All of us working on the #covid19 frontlines saw how this disease caused kidney injury or failure in so many patients.
At one hospital in NYC, 46% of patients admitted with Covid-19 had some form of acute kidney injury; of those, 17% required urgent dialysis.
All of us working on the #covid19 frontlines saw how this disease caused kidney injury or failure in so many patients.
At one hospital in NYC, 46% of patients admitted with Covid-19 had some form of acute kidney injury; of those, 17% required urgent dialysis.
RENAL (Kidney):
What does nephrologist @scoca1 who took care of many of these patients think about the long-term renal impacts of covid19?:
âThe next epidemic will be chronic kidney disease in the U.S. among those who recovered from the coronavirus". https://www.cnbc.com/2020/08/03/severe-covid-19-can-lead-to-kidney-failure-medical-studies-reveal.html
What does nephrologist @scoca1 who took care of many of these patients think about the long-term renal impacts of covid19?:
âThe next epidemic will be chronic kidney disease in the U.S. among those who recovered from the coronavirus". https://www.cnbc.com/2020/08/03/severe-covid-19-can-lead-to-kidney-failure-medical-studies-reveal.html
The neurologic system seems to have the most diverse sequelae of covid infection, spanning everything from persistent headaches to anosmia (loss of smell) to long-term disability from stroke & relatively rare conditions induced by infection with SARS-CoV2. https://n.neurology.org/content/95/8/e1060
NEUROLOGIC:
A Spanish study showed that over half of covid patients developed neurological problems.
Others have shown more rare presentations - encephalitis, cranial neuropathies, and even myasthenia gravis (a neuromuscular disorder causing weakness).
https://www.acpjournals.org/doi/10.7326/L20-0845
A Spanish study showed that over half of covid patients developed neurological problems.
Others have shown more rare presentations - encephalitis, cranial neuropathies, and even myasthenia gravis (a neuromuscular disorder causing weakness).
https://www.acpjournals.org/doi/10.7326/L20-0845
NEUROLOGIC:
There are multiple case reports of covid19 causing Guillain-Barré, an autoimmune illness witch causes altered sensation and motor function, primarily in the legs and arms.
This was something we saw with Zika infections a few years ago too! https://nn.neurology.org/content/7/5/e781
There are multiple case reports of covid19 causing Guillain-Barré, an autoimmune illness witch causes altered sensation and motor function, primarily in the legs and arms.
This was something we saw with Zika infections a few years ago too! https://nn.neurology.org/content/7/5/e781
NEUROLOGIC:
And thereâs been loads of studies about anosmia, or the loss of smell due to covid19.
In many, this was reported in 30-60% of covid cases.
And thankfully most episodes resolve in 2-3 weeks. But symptoms do persist in some beyond that. https://hms.harvard.edu/news/how-covid-19-causes-loss-smell
And thereâs been loads of studies about anosmia, or the loss of smell due to covid19.
In many, this was reported in 30-60% of covid cases.
And thankfully most episodes resolve in 2-3 weeks. But symptoms do persist in some beyond that. https://hms.harvard.edu/news/how-covid-19-causes-loss-smell
MENTAL HEALTH:
In addition to & related to the neurologic impact, the mental health manifestations of long-covid can be profound.
In all â1 in 3 patients recovering...could experience neurological or psychological after-effects of their infectionsâ. https://bit.ly/3m1B4Ht
In addition to & related to the neurologic impact, the mental health manifestations of long-covid can be profound.
In all â1 in 3 patients recovering...could experience neurological or psychological after-effects of their infectionsâ. https://bit.ly/3m1B4Ht
MENTAL HEALTH:
The mental health toll of this pandemic has been hard on everyone. But for #longhaulers the extra stress of being sick & not knowing if/when youâll feel better is an added burden. Support groups are helping many, but we need more resources. https://www.nytimes.com/2020/09/07/health/coronavirus-mental-health-long-hauler.html
The mental health toll of this pandemic has been hard on everyone. But for #longhaulers the extra stress of being sick & not knowing if/when youâll feel better is an added burden. Support groups are helping many, but we need more resources. https://www.nytimes.com/2020/09/07/health/coronavirus-mental-health-long-hauler.html
So what's next? What do we need to do to better understand #LongCovid?
We need recognition, resources and rehabilitation, and research...
We need recognition, resources and rehabilitation, and research...
1. RECOGNITION
One of the hardest thing for #long-covid patients is actually just being believed that their symptoms are real! They're dismissed as anxiety, or âreassuredâ theyâll eventually get better. The problem is that for doctors like myself, this is all so new.
One of the hardest thing for #long-covid patients is actually just being believed that their symptoms are real! They're dismissed as anxiety, or âreassuredâ theyâll eventually get better. The problem is that for doctors like myself, this is all so new.
1. RECOGNITION
Healthcare professionals have a long history of writing off or minimizing conditions characterized by âvagueâ complaints like fatigue or difficulty breathing, especially when our normal workup is normal.
We often say its just 'anxiety'. But this is different.
Healthcare professionals have a long history of writing off or minimizing conditions characterized by âvagueâ complaints like fatigue or difficulty breathing, especially when our normal workup is normal.
We often say its just 'anxiety'. But this is different.
1. RECOGNITION
We need more insight into how healthcare providers can best help long-covid patients. This includes a 'whole-patient approach' to care.
And we all need to recognize that many people - even many months after their initial illness - may still not be recovered.
We need more insight into how healthcare providers can best help long-covid patients. This includes a 'whole-patient approach' to care.
And we all need to recognize that many people - even many months after their initial illness - may still not be recovered.
2. RESOURCES AND REHABILITATION
In addition to support from family and providers, long-haulers need access to whole-patient care, including specialty providers and early rehabilitation. We know that helps, a lot. https://eurekalert.org/pub_releases/2020-09/elf-cps090320.php
In addition to support from family and providers, long-haulers need access to whole-patient care, including specialty providers and early rehabilitation. We know that helps, a lot. https://eurekalert.org/pub_releases/2020-09/elf-cps090320.php
3. RESEARCH:
We need to make #LongCovid a research priority for medical & public health institutions, including the WHO and CDC.
This won't be confined to the US - patients with long-term covid complications exist all over the world.
We need to study this way more, urgently.
We need to make #LongCovid a research priority for medical & public health institutions, including the WHO and CDC.
This won't be confined to the US - patients with long-term covid complications exist all over the world.
We need to study this way more, urgently.
3. RESEARCH
One of the most pressing needs is (as @Dr2NisreenAlwan perfectly puts it here): âWe must move long-haul COVID from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests.â https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31823-7/fulltext
One of the most pressing needs is (as @Dr2NisreenAlwan perfectly puts it here): âWe must move long-haul COVID from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests.â https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31823-7/fulltext
RESEARCH:
Another critical call-to-action in her piece:
"We must define and measure what ârecoveryâ means, focusing on how long symptoms last, how severe they are, how they impact someoneâs quality of life, and the nature of when and how they appear."
Another critical call-to-action in her piece:
"We must define and measure what ârecoveryâ means, focusing on how long symptoms last, how severe they are, how they impact someoneâs quality of life, and the nature of when and how they appear."
So even though we often equivocated in our @aslavitt podcast, thereâs still a lot that we already DO know about #longcovid:
Itâs real.
The toll is huge.
And many of those struggling today may still be recovering after this pandemic is over.
We need action to address this now.
Itâs real.
The toll is huge.
And many of those struggling today may still be recovering after this pandemic is over.
We need action to address this now.
If you want to know about long-haulers:
This piece by Paul Garner is an honest account of what itâs like trying to âaccommodateâ long-haul covid-19. https://blogs.bmj.com/bmj/2020/09/04/paul-garner-on-long-haul-covid-19-dont-try-and-dominate-this-virus-accommodate-it/
This piece by Paul Garner is an honest account of what itâs like trying to âaccommodateâ long-haul covid-19. https://blogs.bmj.com/bmj/2020/09/04/paul-garner-on-long-haul-covid-19-dont-try-and-dominate-this-virus-accommodate-it/
And @edyong209's reporting is essential reading.
Also, make sure to follow @itsbodypolitic, @Survivor_Corps, and @LongCovidSOS. There are many others, Ill try to update.
Thanks for making it this far.
Being heard is the first step for many who shared their story with me.
Also, make sure to follow @itsbodypolitic, @Survivor_Corps, and @LongCovidSOS. There are many others, Ill try to update.
Thanks for making it this far.
Being heard is the first step for many who shared their story with me.
