Tag Archives: post exertional malaise

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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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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 β€œcontradicts 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?