Category Archives: healing

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Car situation

What did happen in my situation?

I am worried that a car will come around the corner and hit the car partway in the street. Plus, what if there is a medical situation? A heart attack, or drugs, or alcohol, or a seizure? I want help. I call 911. The dispatcher asks for the license plate and if I can see anyone inside. I give her the plate, but the car is fogged up, so I can’t see inside. This does make it more likely that someone is alive inside, but they could still be ill.

I wait, but I am anxious. I text my neighbor and ask if he will come back me up while I bang on the car. He comes out, but the police have just arrived. We wave and go back inside. I do peek out. There is a fairly young man and a dog, who get out of the car. He can walk without difficulty. They don’t move the car. The policeman leaves, then calls me. He says that the person is having an allergic reaction and is waiting to move his car until he can see. The car will be gone by the afternoon.

“Oh, thank you!” I say. “Can I take him coffee?”

“That would be nice.”

I go out and ask if he wants coffee. He does. I take him a cup and he leaves it on my steps. The car is gone later, so I hope he is much better. It’s lucky that he is on our side street rather than the faster main one. More chance of an accident there.

I did feel like a little old lady complaining about a strange car, but I was worrying about something medical more than a stranger. And with the possibility of alcohol or methamphetamines or opioids, I want help. We had an overdose death in our hospital parking lot within the last few years and our police have nalaxone to reverse opioids. I am very glad that it was not an overdose.

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For the Ragtag Daily Prompt: situation.

The photograph is my 1986 Honda Civic, not the car in the story.

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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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Comfortable with monsters

I am comfortable with the monsters in my dreams.

I dream of monsters howling and I go to them. They could be sick or hurt or need help! I must go to them! And the monsters are very noisy but they are babies. Abandoned and dirty and dark and hungry and cold.

This has nothing to do with my childhood. Do you believe me?

I have a pack and supplies in the dream. I carry the monsters up up into the light. I feed them and bathe them and diaper them and wrap each one in a blanket and hold them. They howl until they are too tired to howl and then they sulk. At first they do not know how to respond to kindness and love. But they learn and grow and are beautiful.

I am not comfortable with the angels.

I dream that all the stars start falling and then I see that they are angels. I am so frightened, why must they fall? I don’t want to be an angel and then I am falling and crying. The angels are at perfect peace with falling but I am not. I don’t understand, Beloved. Why do the angels fall?

I ask the Beloved over and over. My poems are questions. Why, Beloved, why?

The angels fall down and up, over and over. They are good then bad, or labeled bad, then labeled good.

Just like people.

The angels are seen as black or white. But I see them as black on white heaven or white on black heaven, it doesn’t matter. Do not let the color be a label. And after someone falls, they are burnt in the sky. They are seen as a devil or a monster!

Angels falling, fallen, monsters.

And I am here for the monsters. Who are angels, in disguise.

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For the Ragtag Daily Prompt: disguise.

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Hostels

I joined my daughter in Venice at a hostel two nights ago. I arrived at about 11:30 pm after about 32 hours of travel. Bus, bus, ferry, taxi, plane, plane, plane, bus, walk. At that time of night, karaoke was going strong at the hostel and I felt fairly ridiculous as the lone grey haired person. The next morning revealed I am not the only one.

For the Ragtag Daily Prompt: ridiculous.

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Favorite

I used to have a favorite agate, chalcedony nodule
found on the beaches here, during Covid. Surprising me.
I did not expect anything and only long to find something
to sustain me, just a little. I find a stone shaped heart, agate hard
and not clear. Not chalcedony, murky with impurities.
Yet the stone sustains me and I keep walking.
Even when I see that the impurities are on the outside too.
Camouflage, refusing to be washed clean, refusing change.

That one is lost, back in its’ native mud and sand. Someday
it may be polished clear, but it shrinks as it is tossed
among the other stones. It is running out of time and surface area.
It may not be heart shaped any more. My favorite now is clear,
a rich red with tiny streamers of darker red inside. I carry it with me,
I carry it in my heart. It is more nearly shaped like a heart,
a real heart, then the conventional one that is lost.

Be warned, then, that that one may be on the beaches here.
Or it could be that it has already been picked up
and taken, the finder hoping to wash it clean and see
the clear beauty as the light shines through.
Transparency is rare. I walk a mile of beach to find even one
clear stone. Don’t be fooled by that one: the dirt is embedded.
I won’t say never, but the chances of transparency and love
shrinks as it is worn away by the restless tides
and crashing against all the other rocks.

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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?

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Found

Barbie doctor is trying to interview the Get Real Girl about the origin of the missing part in front of her, but Elwha intervenes.

“Who, me?” says Elwha. “I am trying to help! I don’t eat Barbies or Get Real Girls!”

For the Ragtag Daily Prompt: missing part.

The funny bit is that I knew right where this missing part was: on a dresser upstairs. It’s the rest of the doll that has gone missing.