57 Comments

As one that has been grappling with the “ after effects of Covid “ which are many including a cardiac arrhythmia , the saddest part is not having a definition. All the symptoms I have developed post Covid infection ( 6 infections by know , two prior to vaccination and 4 after ) which have altered my life completely from being an active almost hyper individual to one that can barely manage and is always exhausted , don’t have a real defined diagnosis with a cause and effect . It is difficult to access care and even get reimbursed for something that essentially does not exist. Even the cardiac arrhythmia, despite the many front line workers like my self who have developed arrhythmias or other cardiac symptoms after Covid , can’t be specifically traced as caused by Covid . So I went from a healthcare worker with no problems or health conditions to one that could be classified as disabled without a true cause and definition.

Expand full comment

I feel you on the not being able to prove it front. I seemingly spontaneously developed inappropriate sinus tachycardia. My cardiologist thinks it was probably long covid from an extremely low grade or asymptomatic infection but there are exactly zero ways to prove it.

Expand full comment

I’m so sorry - I also have long covid (POTS, inflammation and pain). re: ways to prove it, this study on gene analyses via blood sample is giving me hope for biomarker development https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(24)00055-7/fulltext

Expand full comment

My sympathies to you. What you are experiencing seems unimaginably difficult.

Expand full comment

Gigantic thanks to you and your team for all you’ve done! Please go enjoy a well-deserved vacation.

Expand full comment

Honestly, the minimization done by YLE is getting very frustrating. The graph presented is titled "estimated % of people with self-reported Long Covid," but it represents data drawn from the percentage of people currently experiencing Long Covid as a percentage of *all adults.* You then go on to say, "We can’t look at that y-axis and say, “6% of people get LC after infection.” The risk is likely smaller.... LC remains a risk of Covid-19 infection. How big of a risk? We aren’t sure, but likely smaller than 6%. Is that risk decreasing? We think so, but don’t have good visibility."

But that graph is not the number of people who experienced Long Covid *after infection,* but the percentage of *all American adults* currently experiencing Long Covid -- a different denominator, including the uninfected. The CDC's data on people currently experiencing Long Covid, as a percentage of adults *who ever had Covid,* is at 10%. It might not seem like a large difference, but that's in line with the WHO's estimates from 2022, indicating the risk has not decreased. One in ten people continuing to suffer, while YLE won't even recommend masks for the majority of people, is awful. The least you can do is get the data right.

Looking at the CDC's other graphs, the number of people who *ever* experienced Long Covid, as a percentage of adults who ever had Covid, is 31%. So roughly two-thirds of people have recovered - but with the FliRT variants causing a large spike in wastewater data, and little hospitalization data to see its true impact, what will that mean for people reinfected, both those with and without prior Long Covid? From Canada's data on the risk of Long Covid per reinfection, the outlook is poor.

So my trust in this newsletter is rapidly falling. On June 25, you said, "Many epidemiologists expect Covid-19 virus will eventually become a winter respiratory virus, like its relatives." The CDC recently said that after four years of seeing year-round waves, winter seasonality will not be the case. On April 30, you said of the FLiRT variant, "Will this cause an infection wave? There are many similarities between FLiRT and JN.1—which took over this winter—so this certainly won’t cause a tsunami and probably not even a wave. Maybe a wavelet, depending on how much immunity our communities have. A smaller summer wave would follow a pattern we’re seeing, where each summer wave gets smaller and smaller over time. (See figure above.)" That has proven not to be the case - per Wastewater Scan, national Covid levels are high. To continue to provide these predictions without acknowledging prior miscalculations, and addressing any misplaced faith or errors in judgement that led to them, is irresponsible. As we're seeing from the lack of public trust in the CDC, it's difficult to retain credibility if leaders don't acknowledge and learn from their mistakes in an effort to avoid repeating them.

Expand full comment

The Bank of England as I recall reported not long ago that 1/3 of the UK workforce were dealing with chronic illness. The disruptions in supply chains, in customer service, the ubiquitous "now hiring" signs in an inflationary environment all point to a much higher percentage of LC in the general population than 6%, and the determination to stop all data collection and reporting around infection while speaking of COVID in the past tense tend to me to confirm the risk is much higher - insurers, employers and the money changers in our society need plausible deniability of the otherwise palpable risk involved to the employees and consumers who feed the monster.

Expand full comment

That graph is only useful to give a sense of change over time. The denominator is too high because it's "all people", not "all people who recently had covid." But the numerator is even more biased, and is too high, because only 6% if those polled replied. There's an enormous bias that people with long covid are more likely to reply.

But it tells us two things:

1) some people have recovered from long covid, because the numbers sometimes go down.

2) the overall level is a bit lower than it was when they started doing this survey, so the risk of long covid has probably declined.

Given the lack of clear definition of "long covid" until recently, i didn't think any one number can be "right", because it depends on what is measured. My guess is that at least 10% have some lack of energy that persists for an annoyingly long time after the primary symptoms clear and they start testing negative, and less than 5% have debilitating symptoms.

Expand full comment

on the flip side, around 20% of covid infections can be completely asymptomatic, so people experiencing long covid from those will likely not attribute their symptoms to an infection. regardless, it's important to get numbers correct to the best of our ability. "lack of energy" is underestimating post-infection myalgic encephalomyelitis, which isn't fully understood and has no known cure. i would not be confident in that guess of the number with debilitating symptoms.

Expand full comment

If a person has asymptomatic COVID, I suspect their chances of getting long COVID are just about zero. What evidence is there that asymptomatic COVID leads to long COVID? I think that evidence would be hard to find even it was there.

Expand full comment

Per Irfan Hafiz, MD, chief medical officer at Northwestern Medicine Regional Medical Group, an infectious disease physician:

"Long COVID may be less likely among asymptomatic people, but the risk is probably not zero, Hafiz said. According to a 2021 Pathogens study, post-COVID symptoms develop among 30% to 60% of patients who had either asymptomatic or mild COVID-19 infections. Most of the time, it occurred among women." https://www.verywellhealth.com/can-asymptomatic-covid-infections-result-in-long-covid-6825912 https://www.mdpi.com/2076-0817/10/11/1408

A later study conversely found that asymptomatic infections weren't associated with adverse outcomes, so it's difficult to draw conclusions in either direction https://www.nature.com/articles/s41467-022-33415-5

It would be interesting to know how the number of asymptomatic infections corresponds to severity of later symptomatic cases. With testing capabilities what they are, though, I'm not optimistic we'll get that data. But considering how number of infections is associated with Long Covid, prevention regardless seems the best course.

https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm

Expand full comment

Thanks for your detailed reply. After COVID tests came out a lot of companies and institutions required frequent COVID tests for their employees. I would think these companies and institutions would have kept some data on asymptomatic cases, which should have shown up in the testing, right? And from that data they should have been able to find out how many asymptomatic cases developed into long COVID. But that may have been a one time thing, as regular COIVD testing is seemingly not happening now. At least not in my work experience. I used to have to get tested a lot. Now it never happens anymore.

Many people got COVID and did not even know they had it. Many did not get tested. I've read that everybody in the world has been exposed to COVID by now. True? It seems some people, even if exposed, will never develop any type of COVID.

Expand full comment

I no longer trust anyone's projections. There are still wastewater measurements, which happen to be frequent in my region, thankfully, and some of the most readable : https://www.boston.gov/government/cabinets/boston-public-health-commission/boston-wastewater-monitoring

This is no wavelet, in fact more people I know had or currently have covid in the past 2 weeks than at any other time in the pandemic.

Expand full comment

In awe of Boston's interface! Frightening that levels are already beyond last August's peak of viral load, and it's only July :( Same here on knowing so many with Covid. The media and others' downplaying of this disease and insistence that immunity will provide protection is so damaging and misleading, when if they care to look, there are studies that show immunity rapidly wanes and can be scarcely helpful against different variants. So many people afraid to speak up for facts and challenge the CDC's politically influenced dogma.

Expand full comment

Thank you for all the time and effort you have put in to explaining Covid, as well as other public health issues. I have really benefited from reading this blog.

Expand full comment
founding

Same here!

Expand full comment

Thanks for the timely post. Has there been any further research on metformin, which was found to reduce the risk of long covid when taken during the infection (just one study) or nasal and tongue applications of corticosteroids, which were found to help with losing the senses of smell and taste (a handful of small studies with striking results.)

Expand full comment
author

Good question! And I’m not sure. I’ll look into it

Expand full comment

I had seen some talk of research into low-dose naloxone, but don’t know if it’s showing promise.

Expand full comment

I’m curious about the role of using paxlovid during acute infection to prevent LC. Today’s post covers using it to treat LC. Given the # of people who have been treated with it, has anyone looked at LC as an outcome of that treatment? Does anyone know that?

(Yes, I know that the data showed it didn’t help decrease acute symptoms but I think that needs more study.)

Expand full comment

@Eve_: This UCSF study dating back to 2022 COVID19 victims did not show Paxlovid reducing risk of LC. I would venture to say that newer variants such as the latest KP3.1.1 it is even more likely to not help. Rebound/escape in my view merely demonstrates that a pure antiviral cannot address all the targets of the virus and the host immune responses. The published claim of 86% reduction in hospitalization or mortality after receiving this antiviral has not been validated with newer variants of the Omicron lineage. What is needed is a multifunctional drug and Paxlovid isn’t one. A certain repurposed drug unlikely to ever provide that sort of blockbuster ROI, is available and has been well-studied for over 4 decades for victims of another widespread multisystem inflammatory disorder, sickle cell disease. It is safe for a lifetime of use. It is used to mitigate or prevent endotheliitis leading to blood clots, organ damage and also possesses antiviral as well as immune modulating functions. Our clinical observations and the exquisite lab discoveries by our biochemistry collaborators have clarified that this repurposed drug hydroxyUREA targets critical neuroreceptors rendered dysfunctional as part of the host’s immune response to the virus. A 5 day regimen costs $5.90 with a discount Rx coupon.

Ref: Biochemical and Biophysical Research Communications https://doi:org/10.1016/j.bbrc.2024.149825.

Ref: International J of Biochemistry and Cell Biology

https://doi.org/10.1016//j.biocel.2024/.106519

Expand full comment
founding

Thanks to the entire TLE team for all your hard and good work, and enjoy your well-earned break from this!

Expand full comment

Regarding the final study, the one where patients with long Covid were given Paxlovid, but showed no improvement – this is not the same as a result for patients who were given

Paxlovid at the time of infection and then followed to see if they developed long Covid. I wouldn’t expect a viral treatment for an active viral infection to necessarily affect long-term issues. But it may prevent Long Covid in some patients. I don’t think this study investigated that and I think that’s an important question.

Expand full comment

Thank you.

Any update on when Fall covid boosters will be available (specifically Novavax)?

Also, will each manufacturer target the same variant? Or will Novavax target JP.1 and mRNA boosters target KP.2?

Expand full comment

The information I’ve seen from CDC indicated that Novavax will need to stick to JP.1, while the more readily modifiable mRNA vaccines are required to target KP.2.

Expand full comment

Thank you. I've had trouble finding the official word. Any idea on timing?

Expand full comment

Not yet - the vaccines advisory body will

likely set that in due course. Probably similar to last Fall.

Expand full comment

Last fall was too late. Ideally vaccines would be rolled out before back-to-school.

Expand full comment

Agreed. I was shocked by how late the rollout was.

Expand full comment

No wonder booster uptake was so low. If you wait till most people get covid during the summer surge, they will reason they don’t need the booster.

Expand full comment

2 major studies just in, both good news:

1) (Dept of Veterans Affairs, authored by Ziyad Al-Aly, a major Long Covid researcher and advocate), says that prevalence among vaccinated declined to about 3.5 % in the Omicron era, by 2022:

https://medicine.wustl.edu/news/risk-of-long-covid-declined-over-course-of-pandemic/

2) From a German cohort: reinfections are less risky for developing LC for people with at least 4 vaccinations:

https://www.journalofinfection.com/article/S0163-4453(24)00140-3/pdf

These highlight how important it is to keep up with boosters. 3.5 % is still substantial, and will not likely change my current masking habits.

Expand full comment

Thanks so much for addressing Long Covid. It needs to be in the conversation more and more because we are likely accumulating an increasing number of people who are affected by it. Other than obvious LC with fatigues, persistent cough, etc, do you consider the increased stroke, CVD, Diabetes, etc to be part of LC or are those sequelae in a different category?

Expand full comment

Today, my husband and I, in our late 70s, will get our every-four-months COVID vaccination. Can we plan to get the updated vaccination in early fall, or must we wait until November?

Expand full comment

How are you managing to access the vaccine every four months?

Expand full comment

We sign up online at one or another local pharmacy.

A couple of times, before the every 4 months rule came along for our age group, we had to visit a chain where we'd never been before and pretend we hadn't had one for at least a year (my wallet is stuffed with old vaccination cards). I'd told my husband we needed to do that, but he insisted our usual pharmacy would realize how important it was to keep us safe. When we got turned down, he complied with my suggestion.

BTW, I can't recall the precise timing, but we initially qualified for more frequent vaccination due to certain comorbidities.

Expand full comment

How many total shots have you had now? I wonder why the CDC does not recommend boosters more frequently. How many times have you had COVID?

Expand full comment

I don't recall how many.

I've never caught COVID19. When the vaccine was first available, we were among the very first in our area to get vaccinated.

About two weeks later, my husband caught it (he's out and about more than I). He immediately started Paxlovid, and his illness was like a heavy cold.

Even though we're together almost constantly, I always tested negative.

Expand full comment

If you both got COVID shots when they first became available in 2021, your husband could not have received Paxlovid 2 weeks after he got is initial shots. That's because Paxlovid was not available until a long time after COVID shots were available. It was a least a year or 2 later that Paxlovid came out. So maybe your husband got COVID a long time after he got is initial COVID shots.

Expand full comment

Like I said, I don't really recall much about the vaccinations except that we get them as often as we possibly can. I do know we were among the very first in our area. I'll assume you're correct about when Paxlovid was first available, so that would indeed mean my husband caught COVID within two weeks of having had one of our later vaccinations.

Why on earth is the timing of our vaccinations so important to you?

Expand full comment

So appreciate your contribution to keeping us updated. I have been on Prednisone since diagnosed and would like to know the long term impact of its use. What options for treatment are recommended?

Expand full comment

If you have been prescribed the steroid prednisone for LC and are concerned about long-term use, you need to have a serious discussion with your PCP, an Endocrinologist or Rheumatologist. Even a low dose over a long period can cause some significant osteoporosis, affects B/p, causes salt and fluid retention and by definition makes you immunocompromised. While there is evidence for low grade inflammation in some person post-acute COVID19 and symptomatic LC (elevated cytokines Interleukin-1b, IL-6, and Tumor Necrosis Factor (TNF), a steroid as you are taking has no role in suppressing them so I personally wouldn’t take it for that indication. Confer with other knowledgeable for their prof opinion.

Ref: The IL-1β, IL-6, and TNF cytokine triad is associated with post-acute sequelae of COVID-19

Schultheiß, Christoph et al.

Cell Reports Medicine, Volume 3, Issue 6, 100663

Expand full comment

Thank you Dr. Sullivan

Expand full comment

Hi Katelyn, I have a 26 year old friend who says he has long COVID and he insists he must stay in his room isolated from everyone, even to the point of loosing weight because he sets very high standards of protection for anyone to have interaction with him. I was arranging food delivery for him and these are the requirement he presented... "I would like to discuss my expectations to protect everyone’s safety. It’s my policy that anyone coming here must have had a COVID shot since 9/1/22, wear a mask, and test negative within 24 hours. I can provide free tests shipped to their home, but don’t expect them to bring anything else. All supplies I can order delivered here, but my expectation of help is someone to move them from the door to the window where I can safely access them. My expectation is for a contact free plan and coordinate a schedule in advance. Is this reasonable?". My question is: Is he being unreasonable? Does he sound paranoid? It is wise for him to remain isolated for close to 2 years now?

A very concerned friend

Expand full comment

he knows his baseline best, and it's reasonable for him not to want to risk it. how would you feel if your ability to stand, think, or remember memories was at risk? if you care for your friend, listen to him and his needs.

Expand full comment

Maybe, but he also needs a medical assessment. It’s more typical for people with long COVID (like two friends of mine do) just to mask up around others. This person honestly sounds paranoid to me.

Expand full comment

but you don’t know his baseline. covid is a systemic disease, and can manifest in 200+ different ways due to the virus's effect on our endothelial lining and organs. there's no typical long covid right now.

Expand full comment

FYI: The Tour de France is being held right now. 10 days before the race several riders came down with COVID. Most were ready to race, but several important riders had to be replaced because they had not yet recovered. After the race started COVID continued to attack riders. Every few days another rider has withdrawn from the race because of COVID. One rider with COVID continues to race but all riders and their team staffs now are wearing masks and taking other precautions. You can read more here:Tour de France Reinstates COVID-19 Measures as More Cases Emerge in the Peloton

https://www.bicycling.com/tour-de-france/a61590798/tour-de-france-reinstates-covid-19-measures-as-more-cases-emerge-in-the-peloton/

Who said COVID was over???

Expand full comment

Any intel on pediatric post-COVID infection anosmia? I've yet to find a clinical trial or specializing physician for this specific long covid symptom.

Expand full comment