Daily Archives: October 27, 2023

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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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Story morph

I’ve been seeing some embroidered stories. They are based on a true story, but the details are wrong or exaggerated.

One is an old friend of my sister. He notices a chair in his garage and contacts me. Now, my sister died in 2012. He says the chair is from Grandmother Tessie and that my sister told him “It’s the only thing I have left from my grandmother.” He wants the chair to go to my sister’s daughter and he may be willing to have it recovered for her.

He sends me photographs. Touches your heart, doesn’t it?

Except that Tessie was not our grandmother. She was my maternal grandfather’s mother, so my great grandmother. I have never seen the chair before and it would have to be late 1800s or bought late in her life. It does not look that old, though it looks chewed. Also, we all got boxes of stuff from my maternal grandmother Katherine, to the point where we all agreed it was ok to get rid of some of it. We offered it to each other first. Seven cousins and I got two pitchers. I asked my mother, “Why two pitchers?”

“After your uncles and I picked what we wanted, we lined up seven boxes. Then we went pitcher, pitcher, pitcher, pitcher. There were enough to send everyone two.”

Oh. My grandmother was a serious packrat. I got a silver plate pitcher and sugar bowl that look like they are from the 1930s, art deco. I had never seen them before they came in the box. So they are not attached to my memories of my grandparents at all, but I like them very much.

I send the chair message on and I don’t know if my niece will want the chair. Nor do I know if it was great grandmother Tessie’s chair. I had an enormous box of tablecloths and pulled thread doilies and so forth after my parents died. I would bet money that there was something from Tessie Temple in there. I offered it to both my children and my niece. They each took one tablecloth and napkins. I kept a few and got rid of the rest.

The other day I noticed that one cloth that I kept is signed Margaret White. She was my maternal grandmother’s oldest sister. I have Margaret’s small leather sewing kit as well, made in Germany and stamped with her name. I’ve had that since my teens and used it until the leather corners are wearing down. My mother said that my grandmother found her sister Margaret difficult, but I don’t know if that is true either.

At one point I emailed with a family member found on Ancestry.com. This is my paternal grandmother’s father’s half-sister’s descendant. She said the family rumor was that they were related to John Philip Sousa. I said, “My great grandfather, Fredrik Bayers, played saxophone in John Philip Sousa’s band.” She said, “Oh, that must be where that story came from.”

Are these stories benign or not? With social media and the ongoing trials of various people from both the government and investment schemes, the stories seem less benign to me. If my niece wants the chair, I think that is very kind of my sister’s friend to make the effort to get it to her, but the story was rather garbled. It makes me want to be careful with the stories I tell.

Peace.

The photograph is from 1965 or 1966, of my grandmother Katherine White Burling, me, and my sister, Christine Robbins Ottaway. I would guess that my grandfather took it.

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Raptor majesty, maybe

These two eagles were high above me on the North Beach bluff. So when I zoomed in, I thought, oh, good, majestic eagles! A pair!

Oh, um. More silly and derp and grumpy than majestic. They remind me of the Highlights cartoon, Goofus and Gallent. Though maybe this is Goofus and Grumpy. I guess eagles can be silly and grumpy too. They look more like siblings than a couple to me.

For the Ragtag Daily Prompt: raptor.