Tag: long COVID

long COVID research summary

I realize I’ve done A LOT of COVID posts this month, but I had to share this post from Dr. Katelyn Jetelina, writing as “Your Local Epidemiologist.” She gathers together the major research advances in understanding long COVID from 2023, with lots of links to the original research.

One of the main takeaways, which I included in this post earlier in the week, is that vaccines help cut down on long COVID cases, with more doses contributing to lower risks.

Dr. Jetelina also suggests subscribing to The Sick Times newsletter, which is dedicated to sharing the latest information about long COVID weekly.

I’m grateful that the rate of long COVID has declined from early in the pandemic, but it is still affecting millions, some new cases and some months or years old. It’s important to learn more about it so treatments can be developed for long COVID and other post-infection syndromes.
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JN.1

It’s been four years since the first cases of COVID-19 were confirmed in the US but it’s still a major health issue. While vaccines, treatments, and preventative measures have made the current situation less severe than the initial onslaught of SARS-CoV-2, people are still getting sick, with some needing to be hospitalized and some, unfortunately, succumbing to the disease, including the person I referenced in this post. In the week of Dec. 31, 2023-January 6, 2024, COVID caused 4% of all deaths in the United States.

The virus continues to mutate. The current strain that is dominant in the United States and globally is JN.1, which is related to the BA.2.86 variant of Omicron. The good news is that the most recent vaccine, which is based on the related XBB lineage, is a good match for JN.1, so the vaccine significantly reduces the risk of severe symptoms, hospitalization, and death while offering some protection against infection. The bad news is that, in the United States, only about 8% of children and 19% of adults are estimated to have received the newest vaccine, contributing to a surge of cases, amplified by holiday travel and gatherings.

More good vaccine news. This large study from Sweden concludes that vaccination reduces the risk of developing long COVID and that additional vaccine doses reduce risk even more. As someone who has particular concerns about long COVID, I appreciate that these studies are continuing to increase our understanding.

Another recent study shows that the Omicron variants don’t cause peak viral loads until day 3-4, much later than the earlier strains of the virus. The practical implication of this is that at-home COVID tests may not pick up a positive reading until several days into the illness, during which time the person could be infecting others. It also has implications for prescribing anti-virals, which need to begin within the first five days of symptoms to be effective. For me, this is a reminder to mask around other people whenever I have symptoms, as an early negative test might not be accurate.

A study published just a few days ago seems to put some science behind what we have all experienced, that SARS-CoV-2 doesn’t have a “season” in the way that some other viruses, like influenza, do. Changes in temperature and humidity don’t appear to have significant influence in transmission. This seems to go along with what we have experienced in the United States, with major waves happening in different seasons of the year. We’ve had waves in the heat of summer as well as the cold of winter. This suggests that our current winter wave is due more to low vaccination rates and holiday travel and gatherings than to the fact that it is winter. It also highlights the importance of increasing ventilation and using masks in crowded indoor spaces, as both summer heat and winter cold tend to drive people to gather indoors.

Four years in, I’ve written a lot of COVID-19 posts. From my days as part of the Pfizer/BioNTech vaccine trials through the present, I’ve always tried to give the most updated information and public health guidance available. It’s frustrating that there is less information from the Centers for Disease Control and Prevention than when the state of emergency was still in effect but some useful recent data can be found here. A lot of the information in this post came to my attention through this post from Dr. Katelyn Jetelina, writing as “Your Local Epidemiologist” and this post from Those Nerdy Girls.

Through all these challenges, especially when spouse B had the first case of COVID in our house in November, I’ve managed to avoid infection, unless I had a totally asymptomatic case at some point. I use my research to make decisions about vaccination, masking, crowd avoidance, etc. that are right for me and my family. I don’t think that advocating for health measures ought to be seen as controversial or political. There are, though, forces in the US that have warped disease prevention into a political test. It’s very sad that Republicans are more likely to die from COVID than non-Republicans. Please, don’t put your health and the health of your family and neighbors at risk over politics. COVID-19 is still out there. Take care of your health and your loved ones.
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Energy, exercise, mitochondria, long COVID, ME/CFS, etc.

I almost started to cry when I heard this piece on National Public Radio’s Morning Edition. (The audio clip is at the link, as well as a written transcript which may offer a bit more information than the audio in addition to links to the studies cited and to people providing commentary.)

The piece discusses that people with long COVID have physical changes in their tissues that showed cause for their exhaustion or “post-exertional malaise.” The mitochondria in the muscle cells were not functioning properly, so the muscles could not get the oxygen and energy they needed. It appears that this mechanism is also at work in people diagnosed with ME/CFS and other similar, poorly understood syndromes that exhibit these symptoms.

A member of my family was diagnosed with ME/CFS, then called fibromyalgia/chronic fatigue syndrome in the United States, as a young adult, although she had been having symptoms since early adolescence. She was told that she needed to exercise to build her strength, which was common advice at the time but which proved to be detrimental to her. If she tried to push herself physically at all, she would wind up in so much pain and with so much fatigue that she could barely move for a week or more. As I was listening to the radio piece, I was thinking back to those days, when she was so debilitated that we would strategize when or if she could join the family from her upstairs bedroom because she could only manage the fourteen stairs between the levels once a day, at most.

What made a terrible situation worse was that the doctors would think she “wasn’t trying to get better,” essentially blaming her for her condition when the root of the problem was their lack of understanding of ME/CFS. Effort or mental attitude is not going to repair one’s mitochondria.

I appreciate that research money going to study long COVID is also increasing understanding of ME/CFS and other conditions with similar symptoms. (You can read some of my prior posts referencing long COVID and its commonalities with ME/CFS here and here.) I’m hoping that increased understanding will bring more effective treatments and, at least, an end to blaming patients for “not trying hard enough” to get better.

Compassion is needed in these situations, not judgmentalism.

Compassion is always needed. 
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COVID update – late summer 2023

There are many people here in the United States who are no longer taking COVID-19 seriously and a disturbing number who never did.

I am not one of them.

I’ve written dozens of posts over the past three and a half years about it, including about my family’s participation in the Pfizer/BioNTech Phase III clinical trial. I’ve tried to encourage people to take precautions to reduce their chances of infection and serious illness. In that vein, I offer this update.

There was a summer wave in the US with the most prevalent strain being Omicron XBB.1.5. On September 12, the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices will meet to develop a recommendation for a newly formulated booster based on the XBB.1.5 variant. It’s anticipated that the recommendation will be that most people get this new booster, which is expected to be available by the end of September. I will get the booster as soon as I am able. To my knowledge, I’ve still not contracted COVID and would love to keep it that way. Even if the vaccine does not keep me from getting infected, it, along with taking an anti-viral such as Paxlovid, will likely keep me from being hospitalized.

Of course, SARS-CoV-2 continues to mutate. Even now, the variant mix has shifted in the US. EG.5 has become the highest in prevalence with FL.1.5.1 next in an array of variants currently circulating. (You can find current data in the US at the CDC site here.) It is expected that the new booster, though based on XBB.1.5, will still be effective against these other Omicron strains.

The unfortunate wild card at this point is another Omicron variant BA.2.86. The link is to a 8/22 post from epidemiologist Dr. Katelyn Jetelina, explaining why this variant may be more problematic than others, perhaps even warranting the World Health Organization to name it a variant of concern with the name “Pi.” BA.2.86 has over 30 mutations of the spike protein, which is part of the virus that our bodies learn to recognize via vaccines, infection, or both. The fear is that we could see another world-wide wave develop because BA.2.86 might be able to evade our defenses. Researchers are studying it to see if our current tests, vaccines, and treatments will work against it and how it might affect individuals and populations exposed to it. The current number of cases world-wide are thought to be small, but that has been the beginning status of any variant that has become dominant.

Part of the problem is that we don’t have as much data to work with. Most COVID cases aren’t reported to public health authorities anymore. Surveillance and genomic sequencing are lower. This results in less public awareness and information. Theoretically, we should be able to ramp up our system more quickly if a new wave occurs but I wish we had kept up our system in the first place in a proactive stance.

I’m concerned about the attitude that equates COVID infection with other viruses. A study in the journal Nature Medicine shows increased risks for an array of medical conditions, including diabetes, pulmonary and cardiovascular problems, two years after COVID infection, even if the initial case was mild.

“A lot of people think, ‘I got covid, I got over it and I’m fine,’ and it’s a nothingburger for them. But that’s not everything,” said the study’s senior author, Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine in St. Louis. After a couple of years, “maybe you’ve forgotten about the SARS-CoV-2 infection … but covid did not forget about you. It’s still wreaking havoc in your body,” said Al-Aly, chief of research at the Veterans Affairs St. Louis Health Care System.

source: https://www.washingtonpost.com/health/2023/08/21/long-covid-lingering-effects-two-years-later/

The risk of long COVID is real. The article cited above, which is free to access, explains more about the attempts to do research and get care for people with long COVID. People need to realize that they might be someone who gets COVID and has a mild case without long-term repercussions or they might become seriously ill or they might have symptoms for months and years to come. They could also infect someone else who would face the same uncertainties.

I’m once again imploring people to take COVID seriously. Vaccinate, if it is recommended for you. (Being in the US, I’m most familiar with recommendations here but people should look to their own local health authorities and medical practitioners for guidance in their area.) Test and treat an infection. Stay home if you are sick and avoid infecting others. Avoid crowds indoors; wear a high-quality mask if you can’t. If infection rates are significant in your area, mask indoors when you are away from home. Increase ventilation and air filtration. Wash your hands. Get adequate rest and nutrition. Remember that everyone deserves respect, so never question someone else’s decision to mask; they could be immunocompromised, caring for a vulnerable person, etc. and need that protection.

Eventually, we may get to a place where COVID is endemic, like the flu, but we aren’t there yet. Be careful and be kind as we continue to face this still-formidable challenge.

long COVID and ME/CFS

One of the fears that I have about COVID is the risk of experiencing long COVID, where any number of a vast constellation of symptoms occurs for months/years after the acute infection phase.

The symptoms are very similar to those that characterize ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I have a family member with ME/CFS, so I am achingly familiar with the level of disability that can result. ME used to be referred to as fibromyalgia in the US, but now the ME designation is more common.

The October 5, 2022 edition of the (US) National Public Radio show On Point features an extensive discussion of long COVID and ME/CFS and how long COVID researchers and clinicians are learning from their peers who have been working for years on ME/CFS. All of these conditions are underdiagnosed and undertreated, so I wanted to share this with all of you. I believe this link will permanently take you to a recording of the episode. If the link breaks, you can try searching from the On Point link above or searching on your favorite podcast platform.

Anyone who has experienced these conditions or seen a loved one contend with them knows how difficult they can be. I want to raise awareness so that everyone affected can get the help they need. I also want everyone to realize that these conditions exist and are serious. Too often, affected people are dismissed and told their symptoms are “all in their heads.” While there is still much to learn, help is available, although it may be difficult to find, depending on the medical resources nearby. I hope we will all support research and treatment expansion so that the millions of people affected get the help they need.

still COVID

I’m sad to report that the total death toll in the United States from COVID-19 is now over 1.04 million with over 93 million confirmed cases. The actual case count is no doubt higher, as some states have stopped reporting and many cases that are detected by at-home testing are not reported to health agencies at all. New cases are still occurring at a rate of 93,000 a day with 457 deaths (7-day rolling average on August 22, 2022).

It’s still heart-breaking.

And still considered by most experts a pandemic, although perhaps heading in the direction of being considered endemic in the United States soon, as influenza is.

Most cases in the US now are Omicron variants BA.4 or BA.5. There is some hope that new boosters that contain components targeted at Omicron variants might give some additional protection going into the fall and winter, especially against hospitalizations and deaths, but we will have to see if a) people actually get vaccinated and b) the vaccines do boost protection for any length of time.

And/or c) a new strain could develop that evades all prior immunity, is even more wildly contagious, doesn’t respond to current treatments, and/or causes more severe illness.

At home, B, T, and I all still remain uninfected to the best of our knowledge. It’s possible that one or more of us have had an asymptomatic case but there is no real way to know. Any time that we have had symptoms, we have tested, as we have also for travel and after known exposures. We also have had extra tests as part of our participation in the Pfizer/BioNTech vaccine trials. T remains a participant in the third shot trial; B and I exited the trial in order to receive a fourth dose before travelling to the UK this spring. I believe that our vaccination status has helped us to avoid infection and plan to receive one of the new booster shots this fall, if I’m eligible for what will be my fifth dose. T may be eligible for a booster after she finishes with her trial participation this fall if those boosters are available to people under 50.

Broome County, New York, managed to have only a few weeks in the Centers for Disease Control category of low community risk for transmission before going back up to medium. I’ve gone back to masking with a KF94 while shopping or in other indoor public places. I’m making determinations on small gatherings on a case by case basis. Other than church services, I’m avoiding large gatherings.

Some people think I’m being overly cautious at this point but I am still trying to avoid infection, if I can. At the very least, if I do become infected, I will know that I was doing everything I could to keep myself healthy so that I don’t suffer guilt on top of COVID. I am well aware that, even with multiple vaccine doses, masking, avoiding crowds, etc., Omicron, especially BA.5, has been quite successful at evading immunity and protections. I know from what the public health experts are saying and also anecdotally among my friends. There are very few left who have managed to stay COVID-free in recent months.

A large part of my motivation to keep from getting infected is fear of long COVID. While SARS-CoV -2 is too new a virus for researchers to fully understand, it’s possible that I may have some genetic risk factors that could come into play regarding long COVID. None of this is helped by the fact that the underlying medical conditions I have are themselves not well understood.

So, I’ll keep on doing the best I can to stay as healthy as possible.

Wish me luck.

I’m going to need it.

Pfizer study exit

As you many recall, spouse B, daughter T, and I have all been participants in the Pfizer/BioNTech COVID-19 vaccine Phase III clinical trial since summer of 2020. B and T received the vaccine while I was in the placebo group, although I received the vaccine through the trial after the emergency use authorization came through. All three of us continued in the study of third doses.

I had hoped that Pfizer would extend our study to include fourth doses but they have decided not to do so. After researching and discussion with family and medical practitioners, I have chosen to end my participation in the trial early in order to receive a fourth shot, which I did on Saturday.

In the US at this point, government and public health officials are not making COVID policy as much as providing information for individual decision-making. I admit that this is frustrating as community behavior is so important with pandemics in general and the increasingly contagious omicron variants in particular. Emphasis has also shifted away from individual infection rates and toward making sure there aren’t enough serious infections to cause the health system to collapse.

My priority is still to try to avert infection. I don’t want to be sick if I can help it. While rates of hospitalization and death are low among those vaxxed and boosted, serious cases are still possible. While some are lucky to have no or mild symptoms, many still feel like they are suffering the worst flu/virus ever, being out of commission for at last a week. I am also concerned about the risk of long COVID, estimated to affect as much as thirty percent to over forty percent of total cases. Vaccination is estimated to halve the risk. (Please note that definitions of long COVID and the risk factors are currently in flux. As more data are collected and analyzed, these estimates will likely change.) Due to some factors in my family history, I may be at increased risk for developing long COVID. I also know that COVID infection can cause severe flares in people with interstitial cystitis, which I have.

I am very concerned about the possibility of inadvertently infecting others, including my family. I also have several immunocompromised friends who I want to protect.

Infection rates are high in my county now. I am continuing to mask in public and am back to avoiding crowds, including church services, concerts, and plays. Even with the high case counts here, most people are not taking precautions so I am being extra careful.

The boost to resistance to infection is likely to be short-lived, only a few weeks, but this is a critical time for me to have that extra protection. In mid-May, I am travelling to Northampton, Massachusetts to attend my 40th reunion at Smith College. The protocols there are strict, including mandatory vaccination and boosters, indoor masking, and many outdoor activities, so I feel relatively safe attending.

Ten days after my return, B, T, and I will travel to London, UK to visit daughter E and her family. Again, we will be very cautious with our behavior to avoid infection. We also want to protect our family, especially granddaughters ABC and JG who are too young to be vaccinated. JG is even too young to mask.

I’m happy to report that my side effects from my fourth shot have been mild, mostly a sore arm and a bit of tiredness.

I am grateful to Meridian Clinical Research who handled the trial locally and to Pfizer and BioNTech for developing the vaccine and getting it out to so many people so quickly. I am happy to have been of service by participating in the trial and stand ready to participate in additional clinical trials as they become available.

I will close with my accustomed plea for people to do all they can to end the pandemic with whatever means are available to them – vaccines, distancing, masking, avoiding crowds, increasing ventilation, etc. The pandemic is not over and our lack of attention only increases the possibility of new variants and extends the length of time before SARS-CoV-2 becomes endemic.