Why hasn't long covid played a bigger role in policymaking? It seems like doctors and public health experts are quite aware of its existence. But it was not mentioned in the CDC's reasons for changing masking recommendations.
How effective is one-way masking in environments like school, stores, or the office? Families with children under 5 and immunocompromised loved ones, need clear guidance in this regard. Our family has managed to completely avoid COVID. We're at higher risk for complications and have a child too young to be vaccinated. Although, we're fully vaccinated and boosted, we have decided to avoid contracting COVID, if we can, until our youngest can be vaccinated and therapeutics are widely available. Our public health officials do not share whether you can (with a reasonable degree of medical certainty) completely AVOID COVID with one way masking (KN94 standard or above), so out of an abundance of caution, we're still socially distancing. We work from home, do not shop in person, and our children are in virtual school. We limit our in person interactions with those outside our household and spend most of our free time exploring nature and outside. We haven't had childcare, gone to a restaurant, or shopped in a store, in over two years. This is of course quite onerous, but it feels like all we're left with when the country has decided everyone should risk infection. How can families like ours measure our risk with respect to returning to school or the office when our goal remains to AVOID infection? Is it possible with one-way masking in these circumstances to avoid COVID (and thus the risk of long COVID)?
Can you write about potential long term impacts of asymptomatic infection? Are we expecting to see more heart attacks/strokes as a result of COVID-19 population wide? If there is a risk increase for other health conditions given asymptomatic infection? How long could that risk increase persist compared to people who never got COVID-19, and is it different if infection was symptomatic vs asymptomatic?
1. Authorities and media have almost completely ignored Long Covid in characterizing mild infection as of no importance and in continually saying that our policy goals should be only to control hospitalization and death. This is obviously frustrating (and dangerous), and maybe there isn't an easy answer, but do you think we can expect this to change?
2. Why is there so much variation in estimates of prevalance of Long Covid, ranging from 10% all the way to 50%?
Thank you for everything you do. I have had long covid since infection in March 2020. I've been struck by how many long haulers are female and the incredible lack of attention to the gender aspect in the research. (This is of course true with many other chronic illnesses and auto-immune conditions, and with medical research generally! But I digress...) That is even more true in coverage of long covid in kids, which never seems to break out findings by gender at all. Are there any researchers looking for an explanation for the significant dominance of females in the long covid population, and have there been any kid studies that suggest whether risk is higher among girls (particularly girls who have hit puberty)?
Our neighbor was ill with covid for just a day and a half in March 2020. Yet his brain fog has evolved into serious dementia. Can you summarize any research on the connection between long covid and dementia? Many, many thanks for your valuable service!
Do all autoimmune issues put one more at risk for long covid? I know thyroid autoimmune issues are the highest (or top 3) autoimmune disorder so am curious what we know about that risk factor? I know a lot of people with thyroid disorders who generally consider themselves healthy and are not thinking of this as a risk factor. I want to know if there is actual evidence to support or discount this feeling, particularly for the women who are more likely to have autoimmune disorders (including thyroid ones)
What is the prevalence of long covid in kids and what are the long term symptoms they most often experience. Are there any permanent consequences in that group?
I feel like I have a version of "long Covid" even though I haven't had Covid per se. Both Pfizer initial vaccinations and the booster caused a "histamine" reaction (hives and other systemic symptoms) that waxed and waned over weeks post vaccination. The same thing occurred with the flu vaccination (post Pfizer x 3). I have never had an adverse reaction to a vaccination before this. I've been advised that I might react to other stimulations of my immune system, which seems to have gone into hyper reactivity mode. I have a history of auto-immune illness (SLE, hashimoto's) and I wonder if that's contributing to my reaction. I almost never see any information about adverse reactions to Covid vaccination (prevalence, symptoms, treatment, outcome etc), and while this isn't exactly on target for your question, I feel its related and would be grateful for any information you might have. Many thanks for your wonderfully informative and helpful posts.
Is there any information on how Long Covid and being immunocompromised interact? Are people who are immunocompromised are higher risk? Does covid make their underlying medical condition worse? There is so little information that directly addresses the experience of people who are immunocompromised that any information would be helpful.
Thank you for all that you've done for us! You're one of the best science writers on the planet. My question is what percentage of long-covid patients were in the category of no-known-risk, e.g. no medical conditions or other factors such as weight or specific genetic make-up. Also, same question for older healthy people, e.g. percent of covid patients and/or risk to people older than 65 with no medical conditions.
Is it possible for people who had Covid with mild symptoms that appeared to completely resolve to have long-term “hidden” damage? If so, what symptoms should they be on the lookout for?
The possibility of long-term or permanent cognitive effects from long covid (brain fog, memory decline, pre-dementia symptoms) has made us terrified of getting even a mild or asymptomatic case. Is there any reliable data on the risks or prevalence of this effect, or evidence of how it can be mitigated if infected?
Among vaccinated individuals, is risk of long covid different as a function of vaccine manufacturer (e.g., Pfizer-BioNTech vs. Moderna vs. Janssen) or # of doses (e.g., is risk lower for boosted ppl)?
Just as VE for infection wanes over time, does the protective effect of lower incidence of long covid conferred by vaccination also wane over time?
What is the proposed biological mechanism by which vaccination "cures" long covid symptoms?
Do you expect that variant-specific boosters would offer any additional protection against long covid?
Why are women more susceptible to long covid, but men are more likely to experience severe covid outcomes?
Do you "believe in" all the symptoms of long covid? Is there reason to believe that any of them are psychosomatic?
Do folks with long covid eventually recover fully? How often do they achieve full recovery? What is the typical time to full recovery? What sociodemographic or health factors are predictive of full recovery?
Is there any evidence that Long Covid is simply re-exposure to the virus? I.e. symptoms are triggered by strong immune reaction to any airborne cornovirus. I.e., a "Coronavirus Allergy".
I've had Long covid symptoms but have been able to completely eliminate them by isolating for a week (and I mean truly isolating, like never opening any doors or windows at home and only hiking in remote places without any people nearby. I don't even get close to deer :)
Over the last two years since first getting covid (March 2020) I've had about 30 or so 'Long Covid' events lasting about a week that were all precipitated by exposure to people. E.g., a group who walked by on a trail or a neighbor in the garden was enough!. I've seen the risk that a given person will trigger this also tends to correlate with covid case levels (actually slightly preceeding, like sewage levels). In certain periods, about 1/3 of people I encounter will lead to this. It's also binary, where (most) people I can spend a whole day with and never have any issues. However going into a store or office for 5 min, I almost never survive unscathed.
Follow up q, why do sewage levels precede case counts by 2-3 weeks?
Interesting hypothesis and anecdotal evidence. I hope some researchers are working on this hypothesis or one similar. Makes some sense from a biologically semi-educated layman's perspective.
That’s what I’d like to know, too. I’ve successfully avoided getting any strain of COVID thus far, but since everyone’s been so blaze about getting Omicron - in spite of being triple-vaccinated - and now that the CDC’s lifting its mask-recommendations, I fear that I am bound to get infected with it. But I’ve never wanted to get it at all because of my fear of long-COVID.
How effective are the vaccines in preventing long covid if you get a breakthrough infection? And what about long covid in kids? Are there any pre-exisitng conditions that make long covid more likely? Sorry to bombard you with questions but I think the issue of long covid has been underestimated by most governments.
Is there a point after infection at which you can be confident you won't be dealing with long COVID issues? That is, if you haven't had unusual symptoms for, say, a few months, 6 months, a year, etc., can you have reasonable assurance COVID came and went without creating lasting damage?
First thank you thank you for all you do! I’m wondering if there is data that could be distilled about the *type* of long covid by frequency and vaccine status. The data re: cardiovascular impact is frightening but I know that was pre-vaccine. Can we breakdown the % risk of long covid by symptom and severity as we calculate risk threshold for our lives? Thank you!
Any specific info on long covid and kids under 5 unvaccinated? Any difference with long covid in relation to the Omicron strains? What is the main determinant info for diagnosis of long covid? Worry about these things after 3 year old had Omicron.
The necessity of public health prevention measures have been based primarily on reducing deaths and keeping hospitals from being overwhelmed. Could you shed light on necessity of these measures to reduce the burden of long covid? Are the rolling back of mask requirements and vaccination requirements appropriate when we consider QALYs rather than hospital capacity?
Since post-viral conditions are well-documented, and there are lots of findings from previous pandemics, why was Long COVID a surprise to the medical establishment?
Please include the relationship between Long COVID patients being less likely to make antibodies! I can send you the 6 studies if you want to email - Hannah.davis@patientledresearch.com.
An interesting listen and I look forward to reading more of her work. Also, anecdotally, my holistic nurse practitioner says in her practice, the clients she is seeing with long Covid all have low vitamin D levels. Not sure what level she considers 'low', but I know, in general, she recommends a higher vitamin d level than most practitioners.
I was happy to hear NPR do this story and I ordered the book from the library. I'm taking 10,000 of VitD (live in northern state and wear sunscreen daily) but might consider upping it. I am getting my levels tested soon.
The variety of what constitutes "long COVID" is confusing to me. Does any data distinguish prevalence/risk of relatively mild symptoms (a month of smell loss or coughing) versus extreme, very long-term symptoms like dysautonomia, POTS, extreme fatigue that lasts for over a year, organ damage, etc?
How concerned should we be about asymptomatic cases, where somebody feels okay but then has a stroke or an embolism, or they feel relatively okay, but then labs show kidney or liver damage, microclotting, or pulmonary hypoperfusion? How well do vaccinations protect against these outcomes in patients with breakthrough infections? Do they mostly protect by protecting against infection, in other words?
Are there identifiable risk factors for healthy people? In the world of anecdata, I know some fully vaccinated young people with no comorbidities who are really struggling with post-COVID recovery. But they also have a lot of relatives with autoimmune conditions. So is it possible to be high risk based on family history of chronic illness? (Is having a personal history of autoimmune conditions known to be a risk factor for long COVID? What's the connection between the CDC's "high risk conditions" list with risk of long COVID?)
In symptomatic patients, how thorough a DDx is being done for new autoimmune conditions? Many autoimmune disease patients have experienced that it can take many, many years to be diagnosed. It can often take many years to be diagnosed with the symptoms (e.g., dysautonomia or POTS) and then additional years to be diagnosed with the autoimmune cause (e.g., Sjogren's or pernicious anemia).
There's been a lot of recent work on so-called mechanical factors in ME/CFS (intracranial pressure, cervicocranial instability, tethered cord, Chiari malformation), and the overlap between complications of connective tissue disorder and complications of post-viral conditions. Is it possible that COVID-19 is damaging connective tissue or triggering autoantibodies that do?
Thank you so much for your work! It's been really helpful. I'd like to know what experts are saying about the ability of the anti virals (like Paxlovid) to prevent or minimize long term covid symptoms. I know there is not data yet, but there must be opinions :-)
I have seen some suggestions about how to prevent long covid post-infection, including (1) avoiding strenuous activities for a month or more, (2) taking aspirin, (3) taking B3, (4) taking antihistamines, and (5) avoiding stress. Is there any evidence to suggest that these actions are preventative?
How does long COVID interact with autoimmunity? Do patients with existing autoimmune disease (celiac, MS, etc) seem more susceptible to long COVID? Or does long COVID trigger other autoimmune problems?
While most people consider COVID-19 mild for kids, I am worried that underlying damage may be done, especially related to blood vessels and clots, that will manifest itself at an older age. Is there any discussion about the potential for increased risk of stroke or heart attack at an older age (but young age-like in their 30s) among kids that had COVID when they were young? Are they enrolling in any long term cohort studies?
Any info on the virus' abilities around neuroinvasion + neuron cell death would be a godsend. There are all kids of therapies for the terrible diseases C19 seems to be compounding or triggering (heart disease, lung diseases, diabetes, etc) but we all get one brain. Need data on how the virus destroys neurons to even hazard a likelihood of newborns, infants and toddlers developing cognitive issues because of damage at key developmental phases (like Zika, which has been found to affect preschoolers, not just fetuses).
We have a friend who has been experiencing symptoms of chronic fatigue since the beginning of the pandemic. This began back when it was difficult to get tested for COVID, but he has tested negative on an antibody test. (Maybe multiple times?) I guess a related question is the accuracy of antibody tests, but is there a way to test to confirm long COVID after the initial onslaught of symptoms? Or could someone have contracted COVID and have lasting symptoms, and be unable to confirm that diagnosis after the fact?
My understanding that within 3 months your lab tests won't show COVID markers. I had COVID mid March 2020 and since "I could breathe" my doctor dismissed that what I had was COVID. I literally donated blood at the Red Cross, hoping they would test for COVID antibodies. Later, when the Red Cross announced they were testing for antibodies, I donated blood again (after the six week waiting period). By that time, antibodies weren't detected yet my fatigue is off the charts.
I would love your insight on what fraction of long covid cases last for multiple years or lifelong, and what fraction last "merely" months. Your newsletter is a lifesaver, thank you for writing it!!
Hi, thanks for your constant great posts. About Long Covid, I would like to see parosmia mentioned. Many people (myself included) suffer from this symptom for years. It destroys your day to day live, many people lose weight and it leads to malnutrition. Despite the huge decline in life quality it seems that neither the media nor the science community has a great interest in it. There are support groups on Facebook with thousands of members in which you can read what an impact it has on people.
1) Why isn't the CDC acknowledging long covid in their communications? Isn't this negligence?
2) If you have certain pre-existing conditions, does the likelihood that you'll experience LC increase?
3) Is there anything you can do if you come down with covid, during the course of the illness, to reduce your chances of developing LC? (E.g. any vitamins, medications, etc. that you can take)
Based on the areas of the brain affected that is causing altered taste and smell what long term ailments might we be looking for? 15 months post infection with continued altered taste and smell
+1 on the question of what other symptoms/effects we should look for based on the area of the brain. I would add is there something about the type of cells/tissues involved that might also be elsewhere in the body?
My dad was 2 when his parents died in the same week and he nearly died from the 1918 flu. He was a sickly child. But he grew up on a farm where food was plentiful. He did custom grain threshing with steam engines--a job for really strong people. When he was 57? 59? he had a heart attack. When he was 67, he died suddently from a massive heart attack. Of all his cousins but one, he had the youngest date of death by a decade. I've ben told this was from the flu. I don't know if that helps, but long term effects are real.
Hey there! New to your blog, I have Long Covid Syndrome. My neurological effects are so severe, I was actually diagnosed with a brain injury from Covid. I suspect it could be due to the extended time with a severe lack of oxygen and high fever, my O2 was 68% & a fever of 105.1 when I was admitted to the hospital. This was December 2020. I still struggle with memory, confusion, energy, stamina, amongst other symptoms. I am curious to know if there has been any research done into the reasons behind why Covid affects the brain so terribly, and if it ever has a chance of healing. I have been told by everyone I have seen thus far to just wait it out..
A friend seems to have developed long Covid from being infected 2 months ago. First, what are the chances that is will just go away on its own, say in a few months? Second, he has sought the help of a naturopath and was told getting the vaccine contributed to his developing long Covid from the virus. I was shocked, and unfortunately, very dismissive. Have you heard of this claim and how do I respond?
I forgot to ask a question! Other viral infections are known to have long "tails" in terms of leaving lasting effects on the infected. With covid we are still in a fairly short timeline for data collection, but can we, using previous viral histories, generalize to a set of plausible predictions on what the covid longhaulers may be facing?
I've got a 13 yo who was fully vaxxed and boosted, already had POTS, contracted Omicron 9 days after her booster, POTS symptoms are worse and it's never ending, I guess it's long COVID now... we need help.
Within longhauler groups, these questions come up:
1) Vaccines are making the persistent symptoms longhaulers experience significantly worse in far more cases than they help. Why is this? Is there any way to determine who is more at risk?
2) Please share any data of people becoming longhaulers post-vaccine (not from natural infection). There have been few articles out there touching on it and several people claiming this has happened to them.
3) Any data you have on kids and long covid would be great. Any precursors like genetics come into play?
4) Scientists in Germany are seeing great results filtering out micro-clots using a system similar to dialysis. Any chance that research is starting in the US?
Long-Covid can absolutely be debilitating and it is a silent and lonely battle. Thank you for your time and effort putting this piece together.
Why hasn't long covid played a bigger role in policymaking? It seems like doctors and public health experts are quite aware of its existence. But it was not mentioned in the CDC's reasons for changing masking recommendations.
How effective is one-way masking in environments like school, stores, or the office? Families with children under 5 and immunocompromised loved ones, need clear guidance in this regard. Our family has managed to completely avoid COVID. We're at higher risk for complications and have a child too young to be vaccinated. Although, we're fully vaccinated and boosted, we have decided to avoid contracting COVID, if we can, until our youngest can be vaccinated and therapeutics are widely available. Our public health officials do not share whether you can (with a reasonable degree of medical certainty) completely AVOID COVID with one way masking (KN94 standard or above), so out of an abundance of caution, we're still socially distancing. We work from home, do not shop in person, and our children are in virtual school. We limit our in person interactions with those outside our household and spend most of our free time exploring nature and outside. We haven't had childcare, gone to a restaurant, or shopped in a store, in over two years. This is of course quite onerous, but it feels like all we're left with when the country has decided everyone should risk infection. How can families like ours measure our risk with respect to returning to school or the office when our goal remains to AVOID infection? Is it possible with one-way masking in these circumstances to avoid COVID (and thus the risk of long COVID)?
Can you write about potential long term impacts of asymptomatic infection? Are we expecting to see more heart attacks/strokes as a result of COVID-19 population wide? If there is a risk increase for other health conditions given asymptomatic infection? How long could that risk increase persist compared to people who never got COVID-19, and is it different if infection was symptomatic vs asymptomatic?
1. Authorities and media have almost completely ignored Long Covid in characterizing mild infection as of no importance and in continually saying that our policy goals should be only to control hospitalization and death. This is obviously frustrating (and dangerous), and maybe there isn't an easy answer, but do you think we can expect this to change?
2. Why is there so much variation in estimates of prevalance of Long Covid, ranging from 10% all the way to 50%?
Thank you!
Thank you for everything you do. I have had long covid since infection in March 2020. I've been struck by how many long haulers are female and the incredible lack of attention to the gender aspect in the research. (This is of course true with many other chronic illnesses and auto-immune conditions, and with medical research generally! But I digress...) That is even more true in coverage of long covid in kids, which never seems to break out findings by gender at all. Are there any researchers looking for an explanation for the significant dominance of females in the long covid population, and have there been any kid studies that suggest whether risk is higher among girls (particularly girls who have hit puberty)?
Our neighbor was ill with covid for just a day and a half in March 2020. Yet his brain fog has evolved into serious dementia. Can you summarize any research on the connection between long covid and dementia? Many, many thanks for your valuable service!
Do all autoimmune issues put one more at risk for long covid? I know thyroid autoimmune issues are the highest (or top 3) autoimmune disorder so am curious what we know about that risk factor? I know a lot of people with thyroid disorders who generally consider themselves healthy and are not thinking of this as a risk factor. I want to know if there is actual evidence to support or discount this feeling, particularly for the women who are more likely to have autoimmune disorders (including thyroid ones)
What are your chances of getting long covid if you are mRNA vaxxed + boosted? (I realize this varies by age).
Does vaccination help prevent or decrease the risk of long Covid?
Thank you so much for everything that you do.
Question:
What is the prevalence of long covid in kids and what are the long term symptoms they most often experience. Are there any permanent consequences in that group?
Thanks a lot in advance!
I love this question.
I feel like I have a version of "long Covid" even though I haven't had Covid per se. Both Pfizer initial vaccinations and the booster caused a "histamine" reaction (hives and other systemic symptoms) that waxed and waned over weeks post vaccination. The same thing occurred with the flu vaccination (post Pfizer x 3). I have never had an adverse reaction to a vaccination before this. I've been advised that I might react to other stimulations of my immune system, which seems to have gone into hyper reactivity mode. I have a history of auto-immune illness (SLE, hashimoto's) and I wonder if that's contributing to my reaction. I almost never see any information about adverse reactions to Covid vaccination (prevalence, symptoms, treatment, outcome etc), and while this isn't exactly on target for your question, I feel its related and would be grateful for any information you might have. Many thanks for your wonderfully informative and helpful posts.
Is there any information on how Long Covid and being immunocompromised interact? Are people who are immunocompromised are higher risk? Does covid make their underlying medical condition worse? There is so little information that directly addresses the experience of people who are immunocompromised that any information would be helpful.
Thank you for all that you've done for us! You're one of the best science writers on the planet. My question is what percentage of long-covid patients were in the category of no-known-risk, e.g. no medical conditions or other factors such as weight or specific genetic make-up. Also, same question for older healthy people, e.g. percent of covid patients and/or risk to people older than 65 with no medical conditions.
Is it possible for people who had Covid with mild symptoms that appeared to completely resolve to have long-term “hidden” damage? If so, what symptoms should they be on the lookout for?
The possibility of long-term or permanent cognitive effects from long covid (brain fog, memory decline, pre-dementia symptoms) has made us terrified of getting even a mild or asymptomatic case. Is there any reliable data on the risks or prevalence of this effect, or evidence of how it can be mitigated if infected?
So many questions...
Among vaccinated individuals, is risk of long covid different as a function of vaccine manufacturer (e.g., Pfizer-BioNTech vs. Moderna vs. Janssen) or # of doses (e.g., is risk lower for boosted ppl)?
Just as VE for infection wanes over time, does the protective effect of lower incidence of long covid conferred by vaccination also wane over time?
What is the proposed biological mechanism by which vaccination "cures" long covid symptoms?
Do you expect that variant-specific boosters would offer any additional protection against long covid?
Why are women more susceptible to long covid, but men are more likely to experience severe covid outcomes?
Do you "believe in" all the symptoms of long covid? Is there reason to believe that any of them are psychosomatic?
Do folks with long covid eventually recover fully? How often do they achieve full recovery? What is the typical time to full recovery? What sociodemographic or health factors are predictive of full recovery?
Is there any evidence that Long Covid is simply re-exposure to the virus? I.e. symptoms are triggered by strong immune reaction to any airborne cornovirus. I.e., a "Coronavirus Allergy".
I've had Long covid symptoms but have been able to completely eliminate them by isolating for a week (and I mean truly isolating, like never opening any doors or windows at home and only hiking in remote places without any people nearby. I don't even get close to deer :)
Over the last two years since first getting covid (March 2020) I've had about 30 or so 'Long Covid' events lasting about a week that were all precipitated by exposure to people. E.g., a group who walked by on a trail or a neighbor in the garden was enough!. I've seen the risk that a given person will trigger this also tends to correlate with covid case levels (actually slightly preceeding, like sewage levels). In certain periods, about 1/3 of people I encounter will lead to this. It's also binary, where (most) people I can spend a whole day with and never have any issues. However going into a store or office for 5 min, I almost never survive unscathed.
Follow up q, why do sewage levels precede case counts by 2-3 weeks?
Interesting hypothesis and anecdotal evidence. I hope some researchers are working on this hypothesis or one similar. Makes some sense from a biologically semi-educated layman's perspective.
Is there any research on kids (5-12) having long term effects from covid that have been vaccinated but also had covid since being vaccinated?
What is the evidence around likelihood of long Covid after Omicron infection?
That’s what I’d like to know, too. I’ve successfully avoided getting any strain of COVID thus far, but since everyone’s been so blaze about getting Omicron - in spite of being triple-vaccinated - and now that the CDC’s lifting its mask-recommendations, I fear that I am bound to get infected with it. But I’ve never wanted to get it at all because of my fear of long-COVID.
How effective are the vaccines in preventing long covid if you get a breakthrough infection? And what about long covid in kids? Are there any pre-exisitng conditions that make long covid more likely? Sorry to bombard you with questions but I think the issue of long covid has been underestimated by most governments.
There is so much conflicting info on long covid in kids. Can you give some clarity?
Is there a point after infection at which you can be confident you won't be dealing with long COVID issues? That is, if you haven't had unusual symptoms for, say, a few months, 6 months, a year, etc., can you have reasonable assurance COVID came and went without creating lasting damage?
First thank you thank you for all you do! I’m wondering if there is data that could be distilled about the *type* of long covid by frequency and vaccine status. The data re: cardiovascular impact is frightening but I know that was pre-vaccine. Can we breakdown the % risk of long covid by symptom and severity as we calculate risk threshold for our lives? Thank you!
Any specific info on long covid and kids under 5 unvaccinated? Any difference with long covid in relation to the Omicron strains? What is the main determinant info for diagnosis of long covid? Worry about these things after 3 year old had Omicron.
I'd love to know about long covid statistics for under 5 also.
me too! I have an 4 year old.
I also came here to ask about prevalence of long Covid in kids, both vaccinated and unvaccinated. I worry about my kids age 7&4.
The necessity of public health prevention measures have been based primarily on reducing deaths and keeping hospitals from being overwhelmed. Could you shed light on necessity of these measures to reduce the burden of long covid? Are the rolling back of mask requirements and vaccination requirements appropriate when we consider QALYs rather than hospital capacity?
Since post-viral conditions are well-documented, and there are lots of findings from previous pandemics, why was Long COVID a surprise to the medical establishment?
Please include the relationship between Long COVID patients being less likely to make antibodies! I can send you the 6 studies if you want to email - Hannah.davis@patientledresearch.com.
There was a recent episode regarding long Covid and autoimmune diseases on NPR's Fresh Air featuring journalist Meghan O'Rourke - https://www.npr.org/sections/health-shots/2022/02/28/1083458296/long-covid-autoimmune-meghan-orourke-invisible-kingdom
An interesting listen and I look forward to reading more of her work. Also, anecdotally, my holistic nurse practitioner says in her practice, the clients she is seeing with long Covid all have low vitamin D levels. Not sure what level she considers 'low', but I know, in general, she recommends a higher vitamin d level than most practitioners.
I was happy to hear NPR do this story and I ordered the book from the library. I'm taking 10,000 of VitD (live in northern state and wear sunscreen daily) but might consider upping it. I am getting my levels tested soon.
The variety of what constitutes "long COVID" is confusing to me. Does any data distinguish prevalence/risk of relatively mild symptoms (a month of smell loss or coughing) versus extreme, very long-term symptoms like dysautonomia, POTS, extreme fatigue that lasts for over a year, organ damage, etc?
How concerned should we be about asymptomatic cases, where somebody feels okay but then has a stroke or an embolism, or they feel relatively okay, but then labs show kidney or liver damage, microclotting, or pulmonary hypoperfusion? How well do vaccinations protect against these outcomes in patients with breakthrough infections? Do they mostly protect by protecting against infection, in other words?
Are there identifiable risk factors for healthy people? In the world of anecdata, I know some fully vaccinated young people with no comorbidities who are really struggling with post-COVID recovery. But they also have a lot of relatives with autoimmune conditions. So is it possible to be high risk based on family history of chronic illness? (Is having a personal history of autoimmune conditions known to be a risk factor for long COVID? What's the connection between the CDC's "high risk conditions" list with risk of long COVID?)
In symptomatic patients, how thorough a DDx is being done for new autoimmune conditions? Many autoimmune disease patients have experienced that it can take many, many years to be diagnosed. It can often take many years to be diagnosed with the symptoms (e.g., dysautonomia or POTS) and then additional years to be diagnosed with the autoimmune cause (e.g., Sjogren's or pernicious anemia).
There's been a lot of recent work on so-called mechanical factors in ME/CFS (intracranial pressure, cervicocranial instability, tethered cord, Chiari malformation), and the overlap between complications of connective tissue disorder and complications of post-viral conditions. Is it possible that COVID-19 is damaging connective tissue or triggering autoantibodies that do?
Thank you so much for your work! It's been really helpful. I'd like to know what experts are saying about the ability of the anti virals (like Paxlovid) to prevent or minimize long term covid symptoms. I know there is not data yet, but there must be opinions :-)
I have seen some suggestions about how to prevent long covid post-infection, including (1) avoiding strenuous activities for a month or more, (2) taking aspirin, (3) taking B3, (4) taking antihistamines, and (5) avoiding stress. Is there any evidence to suggest that these actions are preventative?
How does long COVID interact with autoimmunity? Do patients with existing autoimmune disease (celiac, MS, etc) seem more susceptible to long COVID? Or does long COVID trigger other autoimmune problems?
While most people consider COVID-19 mild for kids, I am worried that underlying damage may be done, especially related to blood vessels and clots, that will manifest itself at an older age. Is there any discussion about the potential for increased risk of stroke or heart attack at an older age (but young age-like in their 30s) among kids that had COVID when they were young? Are they enrolling in any long term cohort studies?
I would like to know as well.
Any info on the virus' abilities around neuroinvasion + neuron cell death would be a godsend. There are all kids of therapies for the terrible diseases C19 seems to be compounding or triggering (heart disease, lung diseases, diabetes, etc) but we all get one brain. Need data on how the virus destroys neurons to even hazard a likelihood of newborns, infants and toddlers developing cognitive issues because of damage at key developmental phases (like Zika, which has been found to affect preschoolers, not just fetuses).
We have a friend who has been experiencing symptoms of chronic fatigue since the beginning of the pandemic. This began back when it was difficult to get tested for COVID, but he has tested negative on an antibody test. (Maybe multiple times?) I guess a related question is the accuracy of antibody tests, but is there a way to test to confirm long COVID after the initial onslaught of symptoms? Or could someone have contracted COVID and have lasting symptoms, and be unable to confirm that diagnosis after the fact?
My understanding that within 3 months your lab tests won't show COVID markers. I had COVID mid March 2020 and since "I could breathe" my doctor dismissed that what I had was COVID. I literally donated blood at the Red Cross, hoping they would test for COVID antibodies. Later, when the Red Cross announced they were testing for antibodies, I donated blood again (after the six week waiting period). By that time, antibodies weren't detected yet my fatigue is off the charts.
I would love your insight on what fraction of long covid cases last for multiple years or lifelong, and what fraction last "merely" months. Your newsletter is a lifesaver, thank you for writing it!!
How many different flavors of Long Covid are common? I know some without smell after a year, but not much else in sequalae.
How common is the version similar to Chronic Fatigue Syndrome?
Hi, thanks for your constant great posts. About Long Covid, I would like to see parosmia mentioned. Many people (myself included) suffer from this symptom for years. It destroys your day to day live, many people lose weight and it leads to malnutrition. Despite the huge decline in life quality it seems that neither the media nor the science community has a great interest in it. There are support groups on Facebook with thousands of members in which you can read what an impact it has on people.
1) Why isn't the CDC acknowledging long covid in their communications? Isn't this negligence?
2) If you have certain pre-existing conditions, does the likelihood that you'll experience LC increase?
3) Is there anything you can do if you come down with covid, during the course of the illness, to reduce your chances of developing LC? (E.g. any vitamins, medications, etc. that you can take)
+1 on the question of whether pre-existing conditions affect the likelihood of or symptoms of long COVID.
Based on the areas of the brain affected that is causing altered taste and smell what long term ailments might we be looking for? 15 months post infection with continued altered taste and smell
+1 on the question of what other symptoms/effects we should look for based on the area of the brain. I would add is there something about the type of cells/tissues involved that might also be elsewhere in the body?
How reliable is the data that the vaccine reduces long covid? How much impact does it have, and how does it do it?
Does vaccination reduce the risk f contracting long-covid?
My dad was 2 when his parents died in the same week and he nearly died from the 1918 flu. He was a sickly child. But he grew up on a farm where food was plentiful. He did custom grain threshing with steam engines--a job for really strong people. When he was 57? 59? he had a heart attack. When he was 67, he died suddently from a massive heart attack. Of all his cousins but one, he had the youngest date of death by a decade. I've ben told this was from the flu. I don't know if that helps, but long term effects are real.
Hey there! New to your blog, I have Long Covid Syndrome. My neurological effects are so severe, I was actually diagnosed with a brain injury from Covid. I suspect it could be due to the extended time with a severe lack of oxygen and high fever, my O2 was 68% & a fever of 105.1 when I was admitted to the hospital. This was December 2020. I still struggle with memory, confusion, energy, stamina, amongst other symptoms. I am curious to know if there has been any research done into the reasons behind why Covid affects the brain so terribly, and if it ever has a chance of healing. I have been told by everyone I have seen thus far to just wait it out..
A friend seems to have developed long Covid from being infected 2 months ago. First, what are the chances that is will just go away on its own, say in a few months? Second, he has sought the help of a naturopath and was told getting the vaccine contributed to his developing long Covid from the virus. I was shocked, and unfortunately, very dismissive. Have you heard of this claim and how do I respond?
I forgot to ask a question! Other viral infections are known to have long "tails" in terms of leaving lasting effects on the infected. With covid we are still in a fairly short timeline for data collection, but can we, using previous viral histories, generalize to a set of plausible predictions on what the covid longhaulers may be facing?
Does Omicron give long covid?
I've got a 13 yo who was fully vaxxed and boosted, already had POTS, contracted Omicron 9 days after her booster, POTS symptoms are worse and it's never ending, I guess it's long COVID now... we need help.
I'm so sorry, Kristin. <3
Within longhauler groups, these questions come up:
1) Vaccines are making the persistent symptoms longhaulers experience significantly worse in far more cases than they help. Why is this? Is there any way to determine who is more at risk?
2) Please share any data of people becoming longhaulers post-vaccine (not from natural infection). There have been few articles out there touching on it and several people claiming this has happened to them.
3) Any data you have on kids and long covid would be great. Any precursors like genetics come into play?
4) Scientists in Germany are seeing great results filtering out micro-clots using a system similar to dialysis. Any chance that research is starting in the US?
Long-Covid can absolutely be debilitating and it is a silent and lonely battle. Thank you for your time and effort putting this piece together.