Category Archives: chronic fatigue

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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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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.

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Long Covid/PASC thoughts

I am still thinking about the last two Long Covid/PASC talks. (PASC is post-acute sequelae SARS-CoV-2.) I have not written about the earlier talk, which was from the group of Long Covid patients, many of the medical people, who have banded together to do their own research and advocate for research. That group said that half have ME/CFS (myalgic encephalomyopathy/chronic fatigue syndrome) and did say that they are unhappy about the research into exercise.

How do I interpret that in light of the more recent talk, with studies about exercise?

Remember that before Long Covid, we thought that about one in ten people with any severe infection may get ME/CFS. Covid-19 is a really nasty infection and hitting people way harder. However, the second talk did show evidence that many though not all Long Covid patients respond to exercise therapy. Here is my prediction: many of the Long Covid people will recover in the two year time line. Two years more or less and that’s if they get help and therapy. However, we may have ten percent, and that’s a guess, that will have a longer course. Ten percent of the people with Long Covid is a very large number of people.

My hope is also that we will learn much more about the immune system and we will be much better at treating and even curing ME/CFS. Something good out of a terrible pandemic.

There also is a recent article about people who tested negative for Covid-19, who have Long Covid. I think I am one of them. In March of 2021 I was tested twice for Covid-19 and was negative. I was also negative for strep A, influenza and RSV and we stopped testing. I needed oxygen. I did take penicillin because of the two previous strep A pneumonias. I had had my three vaccines already. Why do I think it was Covid-19? When the immunologist tested my antibody level in November 2021, he said it was the highest level he’d ever seen. Over 50 was protective and I had 25,000. I thought, that’s weird, from the vaccines? Then I got Covid-19 again in April and had super mild sniffles. I tested because I was traveling and had to push my travel back a week. I think that I tested negative, but remember, we were testing nasal drainage. I’ve only ever had one sinus infection in my life and I’m one of those people who got strep A as a child over and over. As an adult it is throat and lungs that are most vulnerable. I think some people do not shed Covid-19 in their nose. They might have gotten a different result if they had swabbed my tonsils. With that second round the home test was negative again, but I had to get an official travel test. I did it right away, five days before my plane. That test was positive.

There is discussion going on, whether Long Covid that looks like ME/CFS is the same thing or not. My suspicion is that we will see many of the people recover from the PEM (post exertional malaise), but that some will have a longer, more difficult course. And it is not very predictable. The hospitalized people who go through exercise are mostly recovering. They were debilitated from time in bed, on a ventilator, on a heart lung bypass machine. Yet there are people who were never hospitalized, had no preexisting conditions, were athletes and are still struggling. This is a nasty, unpredictable virus. A scintilla of hope and of fear.

For the Ragtag Daily Prompt: scintilla.

The agate is from Marrowstone Island. Only part of it is clear. This is one I had to dig out of hard mud.

Partially clear agate in hard mud on a beach.
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Long Covid and exercise

Today’s Schmidt Initiative Long Covid and exercise talk is very interesting and discussed controversies! It clarifies an argument that I have not understood very well.

Dr. Abramoff is the speaker. He calls his talk “The E-Word and Long Covid”.

His lecture broke down into three sections.

I: Exercise is good for most people and most conditions. Hippocrates thought so and there are tons of studies. We still frequently fail: more than 1/3 of world population is insufficiently active in studies. No improvement over the last 20 years and a decrease of activity in high income countries, work more sedentary, transport more sedentary, inactivity in time off. (I would add screens to that list.)

II: Before Covid, there is a study that raised major controversy regarding ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and exercise. The paper randomizes people with ME/CFS into four groups. 1. GET — graded exercise 2. Adaptive pacing. 3. CBT – cognitive behavioral therapy and 4. usual treatment. The study has 160 people in each of the four groups. They report lower fatigue scores in groups 1 and 3, graded exercise therapy and cognitive behavioral therapy, but not group 2 and 4. The benefits seem to still be present after two years.

There is a significant backlash from the ME/CFS population, saying this “contradicts the fundamental experience of our illness”. Controversy came out over the study’s patient selection, outcome measure selection/subjective nature, lots of letters. The result is that exercise and PT are removed from NICE and CDC Guidance Statements for treating ME/CFS.

The problem is that exercise can lead to post exertional malaise (PEM) which is not just normal tiredness or soreness from starting a new exercise. People can be bed-bound and can have trouble with ADLs (Activities of Daily Living) for days or weeks. It can disable them from working and make them worse and we still don’t know why.

Another study looked at two days in a row of activity in people reporting PEM and impaired recovery. Day one had fairly normal exercise measurements, but day two showed lower VO2 peak, reduced peak heart rate, reduced endurance, reduced peak oxygen uptake, increase respiratory exchange ratio. Something changed. This study did not have controls.

So exercise for ME/CFS is still under study, controversial and rather loaded, since in the past patients were ignored, told they should just exercise, and treated badly.

Part III:

So does Covid trigger ME/CFS? In some people is it the same? That is still unclear.

Many of the treatments are from ME/CFS – lots overlap for many. 58% of Long Covid patients meet the definition of ME/CFS (Every lecture I’ve heard gives different statistic. Constant change.) PEM is common. PEM is a major diagnostic criteria – post exertional malaise is weighted more heavily than fatigue.

The initial studies came from Italy and were on people who survived hospitalization. They mostly improved with exercise and were thought to be deconditioned.

More studies follow. Eventually studies are partly post hospitalized and partly people never hospitalized. Most of those studies show some improvement with exercise. The length of study and what they measured are all different.

In Italy there is an observational study of 506 persistent fatigue long covid, non hospitalized, group of very active before covid, skiers and ski instructors as well as previously sedentary people. Active groups had less fatigue at 12 months compared to inactive groups. Their conclusion is that functional limitations are much more transient than ME/CFS.

Conclusions: We need more clinical trials!!!

Part of the controversy is over the Recover trial in the United States that is coming up. The Recover study has 1.15 billion in funding for 4 years. There is a proposed exercise trial with PT at different intensities. There is a backlash from ME/CSF groups, who say that people with post exertional malaise should be excluded and the money should go to studying pharmacologic treatments and a potential cure.

My take on this: it is complicated. The panel discussing this says quite sensibly that each patient is different and we have to sort out and look for Post Exertional Malaise. It does change over time. It looks as if people may recover a bit better from Long Covid PEM than overall ME/CFS. However, we have known for a while that ME/CFS can be triggered by one in ten severe infections (or by stress or both!) so it is scarcely surprising that Covid-19 would trigger it. The panel says that if it’s post hospital or there is no PEM, then go ahead with graded exercise. For the PEM folks, be cautious. And the PEM folks who are athletes don’t have a good concept of pacing and find it outrageous that their bodies are responding negatively. Function and exercise level before Covid-19 is important but it does not determine who will improve.

There, can I go? My brain is full, well fed with a lot of information today. I’ve tried to pass it on to you.

Many thanks to the Schmidt Initiative, Dr. Abramoff and the panel and speakers and organizers.

For the Ragtag Daily Prompt: feed. How many hours a day do cats loll? Is it fatigue or do they just like it?

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The next stage

It is hard to build a new life after pneumonia number four.

Running my own clinic and seeing patients and keeping track of a business for eleven years, along with two children, now adults done with college and masters and jobs, I did not have an enormous amount of time.

During covid, I started beach walking with a person. Two years into covid, they say, “I have to get back to my real life.” Oh. They say, “You need your own life.” Um, yes, and clearly they are not in it, by their choice. That was a year into pneumonia four and I was still on oxygen. The person bailed. I was a detour to get them through covid. Ugly, but I am trying to learn everything I can from them. About myself and who and what to avoid!

WordPress and the blogging community helps sustain me through this! I can write when I am ill (at least so far) and when the pandemic closed down. I am so encouraged that people contribute from all over the world. A small candle of hope.

I don’t know if I’ll be able to do a limited clinic or not. I am hoping so.

Meanwhile, I’ve been getting to know more people outside clinic and going to live music and dancing and doing open mikes. I am doing the poetry open mikes. A friend in a band says, “But you don’t come to mine!” “That’s a music open mike.” “We need poetry,” he says. So I’ve gone twice and it has been really fun and I am getting to know that community as well. Last Thursday someone said my poems are weird. “I don’t mean bad, just from a different angle.” Meaning unusual, I think. Perspective.

I have been here for 23 years. I know many people in the music community from singing in chorus all those years, I have a church community, I know many people in the dance community, my father and I were in the Wooden Boat community, I have both good and not so good connections in the medical community. The legal community knows both my children, through Mock Trial competitions. I was in the Rotary for ten years and that is another wonderful community. The exchange students going all over the world and people giving back also give me hope!

Suddenly I am busy. I will have to start choosing between things. I still have the aftereffects of Covid-19. I had mild chronic fatigue before it and still do. I think I am stuck with that, so I have to build in rest and quiet time. At least, physical quiet time. My brain doesn’t really do quiet, but that is ok.

Hooray for every day and for building the next stage.

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I took the photograph this week from Point Defiance, Mount Tahoma, aka Rainier.

Limited:

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The path forward

Today I attended this zoom, the Schmidt Initiative for Long Covid Global Echo Webinar Series:

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

Today’s topic is Cardiac Complications of Long Covid.

Whew, it’s hard to see the forest for the trees! It’s complicated! The first distinction is lungs or heart or both. The next is worsened or new measurable heart disease, which is distinguished from heart symptoms without testable heart disease.

Heart disease can include inflammatory heart disease, ischemic heart disease, cardiomyopathy, arrhythmias or clotting disorders. These are called PASC-CVD. PASC-CVD stands for Post Acute Sequelae of Covid-19 – CardioVascular Disease.

If those are ruled out, there are three major categories of PASC-CVS – CVS is CardioVascular Symptoms. One is postexertional malaise, a second is POTS (postural orthostatic tachycardia syndrome) and the third is exercise intolerance. They are all different and treated differently. The formal test for POTS is a tilt table, but for places that don’t have access, they recommended the BatemanHorne NASA 10-Minute Lean test, here. That is hugely useful! This is the international conference, in English with simultaneous translation into French, Spanish, Portuguese and Arabic. Very impressive!

I will write more about today’s lecture, but I am still trying to sort out the trees in this complex forest.

For the Ragtag Daily Prompt: forest.

I took the photograph this month hiking Mount Zion with my daughter.

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Long Covid imaging

In the last Long Covid talk that I attended and wrote about (here: Pulmonary Manifestations of Long Covid), the pulmonologist and intensivist says that one problem with Long Covid is that we do not have imaging that can “see” it.

That is, the chest x-ray looks normal, the echocardiogram may look normal (heart ultrasound), the chest CT scan may look normal, a brain CT or MRI may look normal, but the patient may still be tachycardic, feel exhausted, feel brain fog and have multiple other symptoms.

That pulmonologist listed five of the top mechanisms that are prolonged in the immune system. Most of the scientists and physicians are framing this as “immune system dysfunction”. I am not. I am framing it as “you were really really sick and your immune system is still on high alert and trying to protect you so you can recover”. Now wait, you say, how could chronic fatigue like symptoms protect me? Well, if you are exhausted, you can’t go to work and you’ll stay quiet at home most of the time and less exposure chance. But what about brain fog? Again, this will slow your interaction with other people and force you to rest and heal. But, you say, I don’t like it. Well, yeah. Patience. We call grumpy patients that are recovering “convalescents”. It is a good sign when they are grumpy and over it and just want to be better. That doesn’t mean I can make myself or anyone else heal faster.

The pulmonologist says that the best test is the six minute walk test. This is usually done by a respiratory therapist. The person walks in a circle for six minutes wearing a pulse ox, with the respiratory therapist doing regular checks. This distinguishes between the people who have primarily a lung issue from all the other issues. If the person is tachycardic (fast heart rate) but not hypoxic (oxygen level dropping), then it’s not primarily lungs though blood clots to the lungs sometimes have to be ruled out. One of the mechanisms in the immune system is microclots and an increased risk of blood clots. That can mean heart attack, stroke, or pulmonary embolus, a clot in the lungs. The microclots are suspected of causing some of the muscle fatigue and exercise intolerance, by clogging capillaries and reducing oxygen flow to muscle cells. Muscle cells do not like this at all.

I have done my own quick walk test with patients since 2003, when I had terrible influenza. About a week after my influenza started, with the temperature of 104 and heart rate at 100 at rest and 135 walking, my temperature came down. However, the fast heart rate continued. Normal heart rate is 70-100 and 135 walking will make you feel exhausted. I lay on the couch and could barely make my kids dinner for two months. It resolved then. I read a book about influenza and thought that I had “influenza viral pneumonia” where there is lung tissue swelling, reducing the air spaces, after influenza.

My quick walk test in clinic is to check a sitting oxygen level and heart rate and then have the person walk. I would have them walk up and down a short hall three times then sit down. When they sat, I watched the pulse oximeter recovery. Some people would jump from a resting heart rate of 62 to a walking heart rate of over 100, say 120. Their oxygen level could stay normal or it could drop. If they dropped below 88, I would get home oxygen and forbid them to return to work. If their oxygen level held, then they needed to rest until their walking heart rate stayed under 100 and they were no longer exhausted by gentle or normal activity. If they return to work with a walking heart rate of 120, they will be exhausted and are more likely to get a secondary pneumonia or have other problems. The heart does not like to run at 120 all the time. You can see why a person who already has some coronary artery blockage would be more likely to have a heart attack if they get pneumonia from influenza or Covid-19.

The conferences I am attending are talking about “targets” in the immune system. That is, new drugs. I think the science is wonderful and amazing, but I also think we need to step back and say, this is a really really bad infection and some people need a lot of support and reassurance and time to heal. Reassure them that even though they have not yet returned to normal, the immune system is working hard to protect them from other infections and it is saying very very loudly that they need to rest. Rest, recuperate and trust the immune system. Some things need immediate treatment, especially blood clots, heart attacks and strokes, but once those are ruled out, we need to support people through their convalescence and healing.

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The photograph is from April 2021, a few days after I was put on oxygen. A selfie.

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Pulmonary Manifestations of Long Covid

Today’s Zoom lecture was about pulmonary manifestations of Long Covid, and this is from the Schmidt Initiative for Long Covid Global ECHO Webinar Series, out of the U of New Mexico.

First of all, the talk is brilliant. The speaker is Lekshmi Santhosh, MD, MAEd, Asso Prof Med, Pulm Critical Care Med, UCSF, Intensive Care.

Two things to start with: she stressed the six minute walk test for patients, to distinguish oxygen desaturation (dropping) from the people who have terrible tachycardia (fast heart rate) only. The oxygen drop indicates that the person needs lung studies and may need oxygen, while tachycardia alone means either a heart problem, chronic fatigue/ME pattern or dysautonomia, where the heart goes fast when the person sits or stands up. Her point was that it’s a simple test and that Long Covid presents in multiple different patterns.

The second point is that there are least five main mechanisms that Long Covid can mess us up and people can have one or many. There is a review article in Nature last month (I need a copy!) and it talks about these five: immune system problems, gut microbiome problems, autoimmune responses, blood clotting/microclotting/endothelial problems and dysfunctional neurological signalling. SO: this is a MESS. She says that patient care needs to be individualized depending on which mechanism(s) are predominant and it can be more than one. This Covid-19 is a hella bad virus.

So: “The underlying biological mechanism may not be the same in each patient.” That is the understatement of the year.

She reiterates that the current diagnostic criteria, subject to change, is symptoms that last longer than 12 weeks after Covid-19 and two months past that. She states that the symptoms can wax and wane and that we need to listen to and believe patients.

In JAMA this month, there is an article that uses big data to find which symptoms are more associated with Long Covid, and lists 13 symptoms. Smell/taste tops the list but fatigue is there too. However, this is not a list for diagnosis, it’s a study list.

She also is careful to say that the treatment for the pulmonary manifestations is not the same as the people with the pattern that resembles chronic fatigue syndrome/ME. The pulmonary people can build exercise tolerance, but the CFS/ME folks need a different regimen, with pacing and energy conservation. That sounds like a subtle difference. I had both though my CFS/ME is weird. It does not put me in bed, I just can get really tired and need to sleep. It’s a bit invisible. People see me dance and would not guess that I have CFS/ME. All relative to previous function and energy, right?

For lung manifestations, she lists a pyramid, with the more rare things at the bottom. As follows:

  1. persistent dyspnea (shortness of breath)
  2. post viral reactive airways disease (asthma that can resolve from irritated pissed off lung tissue)
  3. deconditioning. She says that the isolation and quarantine with some people in very small rooms, leads to terrible deconditioning in some folks. They can build up, especially with supervised exercise with pulmonary rehabilitation and/or physical therapy. It is scary to exercise when you are short of breath and the supervision really helps, with limits on how much you should push, or encouragement to push.
  4. organizing pneumonia. This is rare and responds to steroids. Otherwise steroids are not good for the muscles in Long Covid, with the exception of inhaled steroids for the asthmatics and post viral reactive airways.
  5. post ARDS fibrosis: fibrosis is fibrous scarring that can form in the lungs. Anyone who has any terrible pneumonia and is in the ICU and intubated and on a ventilator can get this. Not everyone gets it, thankfully. ARDS is Acute Respiratory Distress Syndrome. Luckily the fibrosis is rare and it turns out that in some people it improves with time, like years. She does not recommend the pulmonary fibrosis medicines right now. There are many causes of pulmonary fibrosis besides infection.
  6. PVD: peripheral vascular disease. Covid-19 increases clotting, so we have to look for both clots and for disease in arteries, which could be lungs, brain, heart, anywhere in the body.

She says DON’T assume that chest pain is from the lungs and don’t miss cardiovascular. That is, rule out a heart attack and pulmonary embolus first.

Other lung problems have to be kept in mind that are not caused by Covid-19. This list: Reflux associated cough, pleuritic pain, neuromuscular disease, vocal cord dysfunction, tracheal stenosis, tracheomalacia. Watch for those. She says that it is very very important to look at old chest x-rays and CT scans, because those can show previous signs of emphysema/COPD/asthma/fibrosis.

Testing: She puts the 6 minute walk test first. AFTER the thorough history and making sure there are no red flags for pulmonary embolism and heart attack. Those have to ruled out if there is any suspicion. Next: pulmonary function testing. If the DLCO is low, consider a chest CT. Consider TTE -TransThoracic Echocardiogram, to look at the heart. Labs: CBC (blood count), ESR, CRP, thyroid, +/-CPK.

She has diagnosed people who are sent to her with NOT Long Covid: they have metastatic lung cancer, metastatic prostate cancer, new pregnancy, hypersensitivity pneumonitis and many other things. She says, “Don’t assume it is Long Covid. Sometimes it isn’t.”

Now, this is all a formidable list of problems and this is JUST the lungs. Long Covid can affect every system in the body and every patient is different.

She also says that she has done more disability and accommodation paperwork in the last three years than in her entire career before that. That the US disability system is a horrid mess and that she has to talk to employers and insurers OFTEN to say that the person will get better faster and have less long term problems if she treats now and they have rest and return to work may need to be very gradual.

She approaches new patients by asking which symptoms are worst. She thinks about severity of the infection, vaccination status, previous/present other medical problems and habits that can contribute or worsen things (smoking, vaping, exposures). Her clinic is for Long Covid pulmonary, but now they have opened up a neurological branch. They use multiple other specialists as well.

Last quotation: “Until we elucidate the biology and have clinical trials, treatments are largely symptomatic.” So the basic science studies working on immune system, the gut microbiome, the clotting problems, are huge in figuring out what to do in clinical trials. This is a tremendously complex illness and three years into Covid-19, we are still trying to figure out the multiple mechanisms that cause Long Covid.

This was a very hopeful lecture from my standpoint, admitting that this is complex but that we are also working to sort out the mechanisms and work on treatments. She works hard at getting patient input and feedback as well.

Two links: A free PDF from Johns Hopkins on Bouncing Back from Covid. https://www.hopkinsmedicine.org/physical_medicine_rehabilitation/coronavirus-rehabilitation/_files/impact-of-covid-patient-recovery.pdf

The American Physical Therapy Association has articles as well: https://www.apta.org/patient-care/public-health-population-care/long-covid

Also here are webinar links:

SILC Global ECHO Webinar Series Resource Links June 28, 2023

Now, how will I use the Ragtag Daily Prompt riposte for this? I think I will just say again how important it is to listen to and believe our patients!

The photograph is from Marrowstone Island, East Beach. The shape in the driftwood is sort of lung shaped.

by

Not immune

I am attending multiple Zoom conferences on Long Covid and Chronic Fatigue and PANS/PANDAS and fibromyalgia. The speakers are talking hard science, digging in to the immune system to figure out what is wrong. Then they can find a drug to fix it.

Maybe it doesn’t need to be fixed. I think the immune system is smarter than we are and it knows that Covid-19 is a really really bad virus. What the immune system wants is to keep from getting any other infections so it shuts us down. It hits the chronic fatigue button, so we stay home or in bed. It hits the fibromyalgia button so that it hurts to move: we stay home or in bed. It hits the PANS button so that antibodies seriously change our behavior and we stay home or in bed. Anyone see a theme here? I think that the immune “over-response” is not an over-response. It’s not broken. It is trying to reduce exposure and just maybe we should pay attention. I thought that in residency, in the early 1990s, when chronic fatigue patients would interview me to see if I “believed” in chronic fatigue. Heck yeah, I said, but I don’t know what it is or how to fix it. My chronic fatigue patients had something in common: they were all either working 12-14 hour days continuously when they crashed, or they overworked and had insane stress, deaths of loved ones, car wrecks, accused of a crime, something horrible. The workers all wanted “to get back to where I was.” I would ask, “You want to work 12-14 hours a day again?” “Yes!” they’d say, “I want to be just like I was in the past!” “Um, but that’s what crashed you. Do you think maybe your body is not up to that?” “FIX ME.” I would try to improve things, but fix them back to what crashed them? No way and anyhow, that is not really sane.

There are some levels of illness where we have to intervene. In really bad PANDAS, antibodies to the brain are followed by macrophages that destroy brain cells. I was horrified and wanted to run around screaming “NOT MY BRAIN!” when I heard that. Then I thought, don’t be silly, I am in my 60s and if I had brain eating cells it would have happened by now. I consider myself really really lucky to have the mildest version. At least, that’s what it seems to be. (Officially we don’t believe in PANS or PANDAS in adults in the US but we do in Europe and Canada. Ironic.) With that version, especially in children, I am all for intervention, as soon as possible. And it’s not that I do not think we should intervene in these illnesses. I just think we need to step back and think a little and just maybe listen to our bodies and listen to the immune system. Slow down. Breathe. Watch some stupid cat videos. Whatever makes you relax and laugh. Reduce stress. Limit stupid hyper news to 15 minutes a day and not before bed, ok? Reduce the drama.

I am liking movies less and less. The drama bugs and bores me. I might last an hour. I have nearly quit going to our downtown movie house because it’s always “moving” and art films. Bleagh, drama. Also when it’s about illness or addiction, I want to argue with it. Easy lying endings which are nothing like reality. I like cartoons and sometimes superheroines, but it’s all drama too. I am tired of people behaving badly and don’t want to watch it on tv or a movie. There’s enough for me in the real world. I think it’s time to bring back musicals. I would watch them. Maybe. My father’s last movie was Blazing Saddles. He refused to ever go to another movie. I think I understand that now.

None of us are immune to stress or immune to infection. A person might be immune to Covid-19, or they might be immune until the tenth or hundredth strain shows up. I chose Family Practice for my specialty because I wanted to have children and be able to see them. I thought about Obstetrics-Gynecology or General Surgery, because I loved babies and loved surgery, but the Ob-Gyn residency was 4 years and General Surgery was 7 years and I was starting medical school five years out of college. Choose the more flexible and portable specialty and go rural.

Doctors and nurses are burning out because hospitals and administrators “maximize production”. Hospitals and administrators are stupid and destroying medicine. It’s not about money, it’s about helping people and science and healing. Having it be about money is soul-destroying and causes moral injury to any ethical provider. If we’d prefer unethical ones, keep on the present path. Otherwise we need single payer health care so that any physician or nurse can take care of whoever shows up. The system is breaking down more and more and it is hard to watch. Another nail of stress in the coffin of ethical medicine. I suppose when enough people die, change will come.

My working theory is that anyone can get one of these immune system illnesses: chronic fatigue, fibromyalgia, PANS/PANDAS and so forth. Medicine says that Hashimoto’s Thyroiditis, antibodies to the thyroid is the most common autoimmune disorder, but that may change. The evidence is mounting that Long Covid and these other “vague” illnesses are immune system shifts. Immune systems in “Code Red”, let’s not catch anything else. Are they an illness or are they our immune system trying to keep us quiet to protect us? I think the latter. Time may tell. I am listening to the science and listening to my body, both.

The photographs are from 2016, when a flock appeared in my yard. They demanded money to be moved to the next house.

For the Ragtag Daily Prompt: fiddlesticks. Oh, fiddlesticks, we have to figure out the very very complicated immune system. Or listen to it.