Category Archives: long covid

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Lie low and flow

We have fight or flight for the sympathetic nervous system state, when we are ramped up, aggressive, go getters, all that stuff. We need a term for the parasympathetic nervous system state, the relaxed one. So far I’ve come up with lie low and flow. Other suggestions? I welcome them! We need more lie low and flow and glow and say no and ho, ho, ho in the world. What puts you in that state? Knitting? Stupid cat videos? Bugs Bunny? A bubblebath? Watching toddlers? What makes you laugh and yawn and relax and lets all the tension flow out and sink or float away?

In clinic I am seeing a wide age range. Most of the younger ones, say, under 60, look a bit shell shocked. I think this is still from the pandemic and wars and political nastiness. The over 60 crowd seems to not care as much. They’ve been through it, they know people die, they know bad stuff happens.

A friend and I were talking about pandemics and he pointed out that HIV and AIDS was a pandemic too. So we are on track for two pandemics per century. The younger folk do not remember the HIV and AIDS pandemic and how frightening it was. Right before that started, some doctors proclaimed that infectious disease had been conquered by medicine. Um, RONG RONG RONG! Boy did they eat THOSE words. And early in that pandemic, no one knew what to believe, what was happening, how to stay safe, and the communication from the medical establishment changed very fast. I wonder if the people who were young adults and older in the 1980s were less surprised by the Covid-19 Pandemic and all the rumors and confusion. Yep, seen it before.

I am not sure how to help the younger shell shocked looking folks. Colorado is a bit tough and manly and consequently there is not a huge amount of resources for emotional health. Yesterday I asked if we have anyone who does neuropsychiatric testing and the answer I got was “I don’t know.” I will dig around today but did not find it on the internet. I have found neuropsych testing hugely helpful for traumatic brain injuries, post brain surgery, and to sort out unusual learning and memory styles. One woman had a brain tumor removed. Her memory was affected. She could remember things that she wrote down and read, but not things that she only heard. No one had given her the report to read. They only told her, so she did not remember it. At least, that was the story. I gave her the report and said, “Read it. And tell your family. And if you are on the phone, take notes.”

Ok, now I should get ready for work, though I want to lie low and watch a silly cat video.

For the Ragtag Daily Prompt: yawn.

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Safe/Not Safe

I think safety is an illusion. BUT it is also nice to feel safe and embrace the illusion.

I sleep best in tents, because as a child, I felt safest at our families “shacks on a lake” in Ontario. Cabins, but pretty much one room cabins. No electricity, outhouses, and my family lived in tents. I loved it. I was more afraid of people than bears.

The pandemic, or this pandemic, has made people feel less safe. But that safety was an illusion too. I had influenza in 2003 and was out sick for two months. I had a racing heart and it hurt to breathe. No asthma. Only rest seemed to help. My doctor and I had no idea when it would resolve. It resolved after two months. My partners accused me of malingering and lying.

A fast heart rate can come from a panic attack, but it works the other way too. If your heart rate is very fast, you may feel panicky. When I nebulize people with albuterol for the first time, I warn them that it may feel like adrenaline, it may speed their heart and they might feel panicky. A friend with Long Covid kept saying that maybe they were just anxious. I got them to have an Urgent Care test them: a resting and a walking heart rate. At rest 72 beats per minute. Normal. Walking, their heart rate jumped to 165, very abnormal! Normal is 70-100 beats per minute, though if one is out of shape, 110 or 120 can result from unaccustomed exercise. But there is no way an athlete in their 20s should jump to 165. The Long Covid heart rate was driving the anxiety, not the other way around.

After I had the 2003 influenza, I read a book of essays about the 1918-1921 influenza pandemic. And I realized that we would probably have a pandemic in my lifetime. I thought it would be influenza, not coronavirus! Hopefully the world will learn a little from this one and change a little over time and be a little more sane if (ok, when) there is another pandemic.

I saw this video today. Wow, what costumes (all 1970s) and dancing! Wonderful! And such a sad song about a broken friendship that used to feel safe.

I hope that you have places or people that you feel safe with. Elwha sometimes likes to sit in the cat tent, even if it is partly open. It feels safe.

For the Ragtag Daily Prompt: safe.

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Less Long Covid if vaccinated

My cats are pound kitties, rescues that were still half-starved kittens when they arrived. They were supposedly six weeks old when I got them, so born in August 2021. This photo is from February 2022. They are still exploring and fascinated by water and faucets and showers. They are doing cat research. Meanwhile, Long Covid research continues.

https://dgalerts.docguide.com/ncov-home/article/lower-long-covid-prevalence-symptom-severity-in-vaccinated-individuals

This is a report on a study which started in October of 2020. “Participants were actively followed for severe acute respiratory syndrome coronavirus 2 (SARS‑CoV‑2) infection. In the study, Hannah E Maier, PhD, University of Michigan, Ann Arbor, Michigan, and colleagues compared the prevalence of symptoms and symptom severity between vaccinated and unvaccinated individuals.” People were enrolled for a year as they got infected, with demographic and health information recorded as they enrolled. They turned in information every two weeks and had blood draws every two months. After a year they were invited to continue for a second year. 3375 were enrolled, more than 1370 filled out Long Covid forms, and 1007 of the 1370 were vaccinated. Long Covid was defined after 90 days.

“At 30 and 90 days post infection, 38% and 13% of individuals reported persistent symptoms, and 6% and 2% reported ≥5 symptoms, respectively. Fatigue (19%), cough (15%), and cognitive dysfunction (12%) were the most commonly reported symptoms at 30 days, whereas loss of smell/taste (8%), fatigue (6%), and cognitive dysfunction (5%) were the most commonly reported symptoms at 90 days. The mean score of symptom severity was 3.6 and 3.9 at 30 days and 90 days post infection, respectively.

At 90 days post infection, 8% of vaccinated individuals reported persistence of any symptoms compared with 27% of unvaccinated individuals (relative risk [RR] = 0.31; 95% confidence interval [CI], 0.22-0.42). Similarly, vaccinated individuals were less likely to have ≥5 symptoms compared with unvaccinated individuals (RR = 0.34; 95% CI, 0.15-0.79).

Furthermore, vaccinated individuals had significantly lower average symptom severity scores at 90 days post infection compared with unvaccinated individuals (relative severity [RS], -2.70; 95% CI, -1.68 to -3.73).“

There also was more Long Covid in the pre Omicron group than Omicron and beyond.

This study is community based and most of the patients were not hospitalized. Overall it has a lower estimate of how common Long Covid is than studies in hospitalized patients. It is reassuring that Long Covid symptoms and prevalence are lower with vaccination, but some people are still severely affected even with vaccination. Vaccination does not stop Long Covid completely though I certainly wish that it did. Mixed good news, but vaccination still looks like the best bet other than moving to a bunker permanently.

The study is published in Open Forum Infectious Diseases: https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofae039/7585852. The quotations are from the DGAlerts article.

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Reaction

On Monday I walked with a group of friends. First I walked down from my house to the coffee shop, walked with them, walked back. It was cold but I was well layered. I want to see if I can up my exercise in spite of Long Covid and muscle weirdness. The initial reaction was fatigue. I took a nap on the couch from 2 to 6 pm and then went to bed at 7. I woke at 5. Fourteen hours of sleep.

That is not totally reassuring. Tuesday I did not feel particularly sore or tired. Wednesday, though, was bad. I started have muscle aches all over and I could not get my hands or feet warm. I lay down under an enormous pile of blankets and eventually went to sleep, starting at about 2 pm. I woke at 9 pm and then went back to sleep, warmer but aching, until 4 am. So that is another 14 hours.

This morning nausea and headache, but less soreness.

So, here is an article: https://www.nature.com/articles/s41467-023-44432-3 about the post-exertional malaise in people with Long Covid. They took people with Long Covid, matched them with people who have recovered from Covid-19, and then did muscle biopsies in both groups before and after maximal exercise. Results? “We show that skeletal muscle structure is associated with a lower exercise capacity in patients and that local and systemic metabolic disturbances, severe exercise-induced myopathy and tissue infiltration of amyloid-containing deposits in skeletal muscles of patients with long COVID worsen after induction of post-exertional malaise.”

Both groups were healthy before Covid-19 and physically active. The study uses many different techniques to measure muscle oxygen use and look at the muscles themselves at the microscopic level. As previous studies have shown, none of our current imaging, like x-rays and CT scan and MRI, can see the problems. This is at a microscopic and cell level in the muscles.

So I am having a post-infection or Long Covid flare the last couple of days, because I pushed too far against my limits. They have not done brain studies but the suspicion is that something similar has been going on. I have been spending a lot of time contacting temp companies and doing job searches, so I am going to take a few days off from that as well. Let the brain and muscles heal.

I still think of Long Covid as immune system PTSD, where the immune system is trying to protect me from further infection, though not necessarily in a way that I like. If the immune system makes me stay home and rest, well, I shouldn’t catch anything, right? Our immune systems are as diverse and complicated as we are, so the patterns are highly variable.

My immune system can’t bamboozle me. It wants me to stay home and take it easy. I get the message. Have a wonderful day.

Cats respond to drugs differently too. Sol Duc is quiet and contemplative on catnip. Elwha, well, guess.

For the Ragtag Daily Prompt: bamboozle.

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Envy

I am supposed to write about envy
but what I am feeling is grief
I walked five miles yesterday
and it was fun, talking, a group
but then a nap from 2 to 5, three hours
and to bed at seven pm and up at five
so 13 hours sleep in response to exercise

It is time to downsize what I think I can do
I still have my mind, but the energy is halved
I can’t work full time as a physician
and I am not sure I can work half time
Do I try it? The risk that I crash again?
Pneumonia and death? Or do I curl into the grief
and find something else to do.

Even the thought makes me tired.

Not envy of other doctors, oh, maybe a little
but the truth is, my survival to date is something
of a miracle. Babies with mothers with active tuberculosis
usually die very quickly, infected, overshelmed.
My mother kindly coughed blood so the doctors knew
before I was born, from the protection of the womb
to the protection of the family, away from my mother.
She is dead, my father is dead, my sister is dead
so even if I cannot work half time
it’s still miraculous to be here at all.

I hope that each and every one of you
feels the miracle of not being dead and gone
some days. And that you do not envy
your dead.

For the Ragtag Daily Prompt: envy.

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We change

In clinic, a very common complaint was, “My body has changed!” This was often with shock or annoyance or betrayal. Weight up, a knee hurting, headaches, menses behaving badly as menopause approached, gentlemen with their own problems.

My muscles are getting stronger but are really grumpy. I am starting to rebuild muscle and endurance but my muscles and joint complain. I think that pain is the pain of wisdom. I am clearly very very wise, if that pain is wisdom pain. It feels better to frame it as wisdom than as “Oh, I am old.” Also it’s fun to watch people when I say, “My wisdom is really acting up today.” They get a funny look on their faces.

Medicine changes all the time too. Isn’t that a little unsettling? Science changes, ideas change, frames change. A treatment that I used 15 years ago would not be done for the same problem now. And we can treat hepatitis B and C! Hepatitis C was still named “Non A, non B hepatitis” back when I was in residency in the early 1990s. Hoorah for some things getting better.

It’s been interesting watching the changing ideas about Long Covid. Over the last year they’ve said, “Better in nine months.” “Mostly better by a year.” “Better by two years, mostly.” Also the estimates of people affected in the US have ranged from 3% to 7.4%. There is not even agreement about the definition, with the CDC talking about symptoms staying present after four weeks. Meanwhile the World Health Organization says, “It is defined as the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.” Here: https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition. CDC here: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html.

I hope that we vote grown ups into office. I hope we aren’t tempted by the childish want to be dictators who say, “I can fix anything, I can do what I want, I am so great. I can make YOU great too.” I think the pandemic was very frightening and the temptation is to try to hide in an imaginary past or freeze the future or think that if we make everyone behave a certain way, no further pandemics will come. I do not think that will work, people. Vote for adults.

The photograph is from the US Botanic Gardens. Here is the model, inside:

The sculpture faces are over each arch. Here is a close up.

I think the carved face will last the longest, then probably me, then the one on the model. The model looks like it would be delicious for various smaller creatures.

For the Ragtag Daily Prompt: change.

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Delicate

I think of what is delicate in all our wide wild world
Our world itself? Yes, but more. Peace among people? No, peace
is strong as war, peace lifts my heart and roars, hoping others hear.
Most delicate is the human heart, all humans. Covid has damaged
the human hearts, we fear, we grieve, we stress and lash out
and so we go to war and wars and argue with each other.
Human hearts turn outward, we cannot see the virus and feel helpless
as the subtle battle is fought and doctors and nurses and scientists
research and die. Human hearts want an enemy they can see, they can fight
and what is better than another human? Every human is different
so there are many choices, to fight over the differences. Let us stop.
Gather our wounded, clear the rubble, find the dead and bury them.
Let us stop and cry and weep and tear our hair.
Let us mourn as a world our dead and the damage to the human heart.

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For the Ragtag Daily Prompt: delicate.

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Covid 19 and the heart

This is from the University of New Mexico Roam Echo PASC (Post Acute Sequelae of Covid-19) talk on 11/9/2023 over Zoom.

Cardiovascular Outcomes in Post-COVID Conditions
Jeffrey Hsu, MD, PhD, FACC, Assistant Professor, Division of Cardiology – University of California, Los Angeles Health and Founder, COVID Cardiology Program – University of California, Los Angeles 

I am going to include the references in the order that Dr. Hsu talked about them. This is a sobering and upsetting lecture with the research showing a post Covid-19 increase in cardiovascular risk factors (cholesterol, hypertension, diabetes), and an increase in cardiovascular events in people with no previous cardiovascular diagnosis including heart attack, stroke, pulmonary embolus, blood clots and sudden death.

I don’t expect the general population to read the studies, but look at a few of them. It is very very impressive, the amount of work being done. Now let’s explore the talk and boil it down to three sentences for primary care to explain in clinic. Right. (You can always skip to the last two paragraphs if you get overwhelmed, and come back later.)

Part 1: The Research.

The first paper is about veterans without cardiovascular disease, followed for one year after Covid-19, matched with a cohort who did not have Covid-19. This is before immunization was available. They were studying the heart and cardiovascular risk. The veterans who had had Covid-19 infection were twice as likely to be diagnosed with cardiovascular risk then the veterans who had not had Covid-19. The risk was higher in the veterans with more severe Covid-19, the risk was present in all subgroups: old, young, male, female, with or without other risk factors. At two years out, the people who had been hospitalized for Covid-19 still had a persistent increased risk of death and cardiovascular incidents (heart attack, stroke, sudden death, blood clots).

To be clear, this is NOT Long Covid patients. This is just a cohort of veterans who had Covid-19. This would indicate that everyone who had Covid-19 has an increased cardiovascular risk.

Here is the first paper: 1. https://www.nature.com/articles/s41591-022-01689-3

Two more papers looked at more general populations who got Covid-19 before the vaccine was available and found the same thing. The veterans tended to be older and more male patients, but the general population studies found the same pattern in women and younger patients. Papers:

2. https://www.scientificamerican.com/article/the-risk-of-heart-disease-after-covid/, “Health modeller Sarah Wulf Hanson at the University of Washington’s Institute for Health Metrics and Evaluation in Seattle used Al-Aly’s data to estimate how many heart attacks and strokes COVID-19 has been associated with. Her unpublished work suggests that, in 2020, complications after COVID-19 caused 12,000 extra strokes and 44,000 extra heart attacks in the United States, numbers that jumped up to 18,000 strokes and 66,000 heart attacks in 2021. This means that COVID-19 could have increased the rates of heart attack by about 8% and of stroke by about 2%. “It is sobering,” Wulf Hanson says.

3.https://www.nature.com/articles/s41591-023-02521-2

Non hospitalized patients had decreased risk for some cardiovascular problems but not all and still had significantly higher risk than people who had not had Covid-19. I am busily thinking UH-OH, this is really bad, in this lecture.

He stated that the data is not in yet about vaccination, whether it lowers the cardiovascular damage compared to unvaccinated.

The initial study was on veterans, mostly male and mostly white, but then was replicated in other similar studies that were not on veterans, but on a general population.

From the second and third study, 700,000 patients with a mean age 40 and more than half female, were studied for new cardiovascular disease in the year following Covid-19 and found an increased risk of death within one year, 0.34% vs 0.28% HR 1.6. That was in 2020, a nonvaccinated population. Another study showed similar results, 13,000 patients with Covid-19 and 26,000 without, average age 51. There was a similar risk increase in cardiovascular disease and an increased risk of death within one year.

4. https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(22)00349-2/fulltext

5. https://jamanetwork.com/journals/jama-health-forum/fullarticle/2802095

So do other infections do the same thing? Studies of acute risk of myocardial infarction risk after influenza, done before the pandemic, indicate an increased risk of myocardial infarction within one week after infection, but not beyond that week. So Covid-19 is really really nasty to our cardiovascular system.

6. https://www.nejm.org/doi/10.1056/NEJMoa1702090

7. https://www.nejm.org/doi/10.1056/NEJMra1808137

Pneumonia and sepsis can increase risk of cardiovascular disease, but there have not been the extensive studies as in Covid-19. More and better studies.

One to two years after diagnosis, there is increased cardiovascular and cerebrovascular risk, both:

  1. Cardiovascular risk factors, worsening after covid
  2. Thrombosis risk

8. https://www.thelancet.com/journals/landia/article/PIIS2213-8587(22)00044-4/fulltext

The risk of is up diabetes 40% in the post Covid-19 patients. That does not mean that 40% are diagnosed with diabetes, but that the risk is higher after Covid-19. For example, if in the non-Covid cohort 100 of 1000 40 year olds develop type 2 diabetes, then it’s 140 of 1000 in the post Covid-19 group.

The risk of dyslipidemia in 50,000 patients went up 24%. Dyslipidemia means increased LDL cholesterol or increased triglycerides and lower HDL or all of them.

9. https://www.thelancet.com/journals/landia/article/PIIS2213-8587(22)00355-2/fulltext

10. https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.123.21174

Hypertension is up too and weight gain.

11. https://www.nature.com/articles/s41577-022-00762-9

New onset hypertension is up 22% in hospitalized patients post Covid-19 and 11% in unhospitalized post Covid patients.

Myocardial infarction (heart attack) and ischemic stroke both go up. Ischemic stroke is the more common kind of stroke and is the clotting version. Bleeding strokes are less common.

Why does Covid-19 do this? What is the mechanism? The studies are pointing towards thromboembolism as the mechanism in both increased cardiovascular risk factors (dyslipidemia, hypertension, stroke, heart attack, clots). Thrombosis means clots. Remember the talk about micro-clots? (My write up here: https://drkottaway.com/2023/04/14/xeno-or-infection-phobic/). Micro-clots can lead to bigger clots. A clot in a heart artery causes a heart attack; in the brain an ischemic stroke; a clot in the leg can break into pieces and block the lung arteries. Irritation in the heart and the arteries can increase blood pressure. I’m not sure how it can increase diabetes, but it does.

Next he shows a slide about thrombosis and how complex it is. Sars covid-19 seems to promote perfect storm of events that leads to environment for thrombosis in multiple ways.

Covid-19 infects epithelial cells, causes a hyperactive immune response, orchestrates subsequent response, causes platelet hyperactivation and then hyperactive innate immune response, causes damage to glycocalyx that protects and vascular endothelial injury, decreases antithrombogenic and increases prothrombogenic activity which promotes thrombosis in the vasculature, platelet activation and coagulopathy. Got that? No? Me either, my last immune system class was in 1988 when I was working at the National Institutes of Health. It’s bad, meaning it can kill us or cause damage that is disabling.

12. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30937-5/fulltext

My notes are a bit disjointed here: The endothelial cells (which line arteries) express H2 receptors that Covid-19 virus needs to enter the cells. The H2 receptors are also in glomerular capillary loops (kidneys), and immune cells and cause apoptosis of lung endothelial cells. Apoptosis is a form of programmed cell death that occurs in multicellular organisms and some eukaryotic microorganisms. So you don’t want your lung cells doing that. Lung, small bowel, and pulmonary microvasculature can all be affected.

13. https://www.thelancet.com/journals/landia/article/PIIS2213-8587(22)00355-2/fulltext

Plaque in human coronary vessels, in the immune cells, spike and Sars cov 2 identified in coronary artherosclerotic plaque.

Direct on coronary and cerebrovascular cells. (Ok, I don’t know what I meant by this note.)

Part II: Now what? What is our approach to healing this?

There is still limited data! (The clinical trials are roaring along but they take time.) Here are a bunch of studies, all using blood thinners. Blood thinners include aspirin, plavix, heparin, enoxaparin or apixaban. Do NOT start aspirin at home at this point, because when you add a blood thinner, there is a risk of bleeding, including bleeding stroke and intestinal bleeding. So far, the studies are discouraging.

Aspirin 150Mg Recovery trial: no difference in mortality: major bleeding 1.6% vs 1/0 % Lancet 2022. This is a double baby aspirin dose, 30 days in study, no benefit in acute setting.

14. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30937-5/fulltext

Non critically ill hosp patients ACTIV 4A trial P2Y12 inhibitor – heparin alone or clopidigril (plavix) plus heparin, no benefit, major bleeding 2.0% vs 0.7% so worse in the both group.

15. https://www.nejm.org/doi/10.1056/NEJMoa2103417

16. https://doi.org/10.1001/jama.2021.17272

Harmed patients with severe disease.

ACTIV-4B aspirin or apixiban in outpatient, stopped early, event rate low, higher rates of minor bleeding in the 5mg apixiban group.

Feedom covid 19 trial: Non ICU Hospitalized, compared prophylactic heparin to enoxaparin or apixaban. Signal to provide benefit, lower rates of death and intubation, similar bleeding rates

17. https://www.sciencedirect.com/science/article/pii/S0735109723045278?via%3Dihub

So what does our Post Covid Cardiologist recommend to physicians and patients:

First year post covid: look for cardiovascular symptoms.

Screen for risk factors, hypertension, diabetes, hyperlipidemia, obeisity.

Optimization of risk factors, smoking cessation (and I would add that alcohol also causes damage to the heart and arteries, though tobacco is worse.

Assess candidacy for statin therapy for primary prevention.

18. https://cardiab.biomedcentral.com/articles/10.1186/s12933-021-01359-7

There is a study of triple therapy (meaning THREE blood thinners) that showed improvement but that was in older patients who already have heart disease before Covid-19. So it doesn’t apply.

He says there aren’t any good studies of blood thinners in Long Covid-19 yet and it is not clear that the Long Covid people are worse as far as the cardiovascular risk than everyone else. And remember, these studies are on unvaccinated people, so for the year following the first year of Covid-19. We don’t have the results for vaccinated people. He says that if someone is high risk or has cardiac symptoms chest pain etc put on 81 mg aspirin and a statin (and work it up, of course. Do the testing.

For now use anticoagulation (blood thinners) only if there is clear evidence of thrombus: deep venous thrombosis or pulmonary embolus. Freedom covid-19 study showed major bleed risk 0.1-0.4%.

The cardiologist speaker has not started triple therapy on any patents given unknown benefit at this time, with known significant major bleeding risk. He recommends shared decision making, meaning the patient should be presented with the risks and choices. Um, ok, boil this talk down into three sentences. Good luck. EEEEEEE!

Part III: Summary.

Whether you had Covid-19 before being vaccinated or after, or aren’t sure if you ever had it, it is worth seeing your provider to check your blood pressure, do diabetes screening, stop smoking (anything, and I include vaping in that), reduce or eliminate alcohol, keep your weight reasonable, check your cholesterol and go to your provider if there is any weirdness post Covid-19. And if you have not been vaccinated, oh, my gosh. Unless you have an immunology problem where your immunologist says “NO!”, get vaccinated.

Lastly, I’ve heard many claims that death rates were “over reported” for Covid-19. No. In a death certificate, the acute injury or infection is reported FIRST and then other related causes. Such as: Covid-19, ischemic stroke, hypertension, tobacco overuse syndrome. There were MORE strokes and heart attacks and sudden death, with Covid-19 as the final straw in many people who already had cardiovascular disease. They died sooner than they would have if not infected. That is not over reporting.

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A friend, Brent Butler, took the photograph, used with permission. I think it shows how I felt after this talk. Yet I still have hope, because you can’t deal with something unless you know about it.

If you want a link for the talks, message me. Anyone can tune in.

Covid-19 continues to fandangle us. There. I verbed the Ragtag Daily Prompt: fandangle.

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Mortal

I am feeling mortal.

I am in my post-pneumonia phase where people say, “Well, you LOOK great.” This is round four, so it’s not a surprise. It just took two years this time, instead of two months. In 2003 it took two months.

There are various things feeding in to this. A friend my age has had a stroke. “NO!” I think, “TOO YOUNG!” The death of the actor from friends bothers me mostly because he’s nearly a decade younger. Drugs and alcohol shorten the lifespan by quite a bit. A study checking for five things: inactivity, drugs, tobacco, alcohol and very heavy weight showed that the people with all five tended to die 20 years sooner than the people with none. That study was at least a decade ago if not two. So cross off about 4 years for any of those, sigh. A cardiologist recently said tobacco is worse than alcohol and now I am wondering how much worse? And how do they measure that? Tobacco kills more but serious alcohol use is a lot faster at killing people. Both of them affect all body systems: GI, heart, lungs, brain, bone marrow, liver, kidneys, and so forth. Even skin.

Also, the last lung test was still abnormal even though I am off oxygen and feeling mostly good. I am having muscle trouble though. Every morning I wake with really bad pain in both thighs and whatever muscles I’ve been trying to build. This has been going on since at least August. Since I think that this is an antibody disorder, it implies that the antibody baseline has risen to the point where my muscles are grumpy and hurt. Alternatively it could be a Long Covid issue: microclots could be clogging the capillaries in the muscles when I exercise and causing hypoxia in muscles, which means they can’t build. Muscle cells are fascinating. When you exercise the cells need more food and build new insulin receptors in the cell wall. So exercise changes the individual muscle cells! How very amazing. My muscles are resisting the build and it is very annoying. There is research going on re the microclots, but there is bleeding risk from the anticoagulants including strokes. So, um, well, I seem to be stuck. It is not stopping me from hiking and dancing and being active but boy does it hurt in the mornings.

This is not very bucolic, is it? I am still attending the Long Covid talks and it is really fascinating and quite scary. It’s just a very very nasty virus. I wish it would calm down. The 1918-1921 influenza really calmed down after three years, but there are no guarantees. Anyhow, at least I can dance!

For the Ragtag Daily Prompt: bucolic.

The photograph is taken in Michigan in 2014.

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Schmidt International iECHO: Long Covid Patient Perspective

The latest Schmidt Initiative iECHO Long Covid zoom two days ago is by Hannah E. Davis, MPS, the co-founder of the Patient Led Research Collaborative (PLRC).

She got Covid-19 in March of 2020. Her first sign that something was really off was that she couldn’t read a text message. She thought that most people recover in two weeks so didn’t do much about it. She went on to clotting and neurocognitive problems and MECFS.

Her job and expertise were in machine learning data sets. As she realized that she was really sick and was not improving, she also realized that Long Covid was not even on the radar for physicians, overwhelmed by the acutely ill and dying. She started the interdisciplinary team co-led by four women and with over fifty patient researchers. The group is 61% women and 70% disabled.

They published an op ed piece about the body politic in the New York Times in April of 2020. By May of 2020 they had a fifty page article out documenting that even mild cases of Covid-19 could cause long term impacts. They describe multiple symptoms long term, not just respiratory. They also noted and documented medical stigma happening and were instrumental in changing the dialog from anecdotes of non-recover to data about non-recovery.

In June to August of 2020 they appealed the the World Health Organization (WHO) with a video message presenting data about long term effects.

In December of 2020 they presented a paper characterizing Long Covid. There are now 3-4 biomedical papers coming out each day.

She states that there are multiple myths about Long Covid: “It’s mysterious, we don’t know anything about it.” is not true. She listed other myths, but I have to go back through the slides.

The group is still highly active in research and is advocating for patient involvement in research. They have developed score cards for the level and quality of patient engagement. Tokenizing gives a score of -1 or -2, where instead of patient engagement in all stages of the research project, they are told “Come look at our final paper and give us the patient engagement gold star.” That is not adequate engagement. Other diseases have also made patients push for engagement in research: HIV, Parkinsons, PANDAS and more. Patients just want to get better and they want research that matters.

Worrisome data include that 10-12% of vaccinated people who get Covid-19 still can get Long Covid. This is less than the unvaccinated, but it’s still one in ten.

Their data shows that the majority of that 10-12% are not recovered at one year.

Another myth is that there is no treatment, but there are treatments at least for symptom management.

They published the Long Covid paper in the January 2023 Nature, documenting the many many symptoms and ongoing early stage treatments, many taken from other diseases such as MECFS.

One third of people who get Long Covid do NOT have preexisting conditions. It attacks all ages, women more then men, and prior infection may increase risk. Respiratory problems are more likely to recover, barring lung scarring. 43% of Long Covid patients report a delayed onset of neurocognitive symptoms.

Regarding mental health, research shows that stigmatization is still common and that patients who have experienced that are more likely to be depressed, anxious or even suicidal. In contrast, even one non-stigmatizing encounter, medical or family or friends, makes people have lower rates of depression, anxiety or suicidal ideation.

It is abundantly clear that this is a biomedical illness. Enabling google research will allow those papers to be delivered daily. I am on a list where I get daily reports of Covid-19 research and papers.

Next she talked about the current treatments, many taken from other similar illnesses. I have to say that the microclots scare me the most. There are clinical trials ongoing as well as amazing bench science, but meanwhile physicians need to listen to patients, believe them, pay attention to the ongoing research and help patients.

I spoke to a provider yesterday that I last saw two years ago. I said I wanted to work with Long Covid patients. “Good!” he said, “Because I don’t want to!” I think that attitude may be very wide spread.

I also looked at our county (and only) hospital’s page on Covid-19. There is not ONE WORD about Long Covid. Isn’t that interesting? Denial ain’t just a river in Egypt.

This is just what I got from the lecture. There was and is more. Physicians and patients can attend and they file the talks so that you too can watch them. Here:

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-global-echo.html

Blessings.