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.
KO Rural Mad As Hell Blog 
I’m intrigued by the concept of “believing in” a condition. I remember when Diffuse Axonal Injury was a question like that. The radiologists and surgeons couldn’t see it on CT or MRI, so it didn’t exist. (And even when it later did, they couldn’t “fix” it.) Therapists were nuts, seeing Traumatic Brain Injury where it didn’t exist. While these folks weren’t “themselves” (either to themselves or their loved ones), there was “nothing wrong with them” – until there was; and their deficits “didn’t make sense” anatomically, since they weren’t confined to a discrete area of the brain. The day came when doctors could see punctate hemorrhaging (pinpoint areas of bleeding in the brain, in plain English) and decided that DAI existed and could be quantified and diagnosed. Sorry for the tangent. I know you were writing about long COVID, but that issue of “believability” is common. (Someone said “Just because you are paranoid doesn’t mean they’re not out to get you”. I guess a corollary is “Just because you have hypochondria doesn’t mean there isn’t something wrong.”)
Yes, there are lots of illnesses Pooh-poohed until suddenly they are “real”.
Physician knowledge is important and not all docs have it, and not all docs want to learn, either.
“I want to be just like I was in the past!” Well, yeah. I started crying yesterday when the radio suddenly played my “anthem” (Running up that Hill by Kate Bush) THAT particular Martha hasn’t existed since 2004. There are a lot of pasts I’d be like I was.
I woke up this morning with brain fog and tremors in my hands. I’ve learned that it is still there, but less often than it was a couple of months ago. I think, “Should I go talk to my doc about this?” and I think, “Why? No one knows anything about it and she has sick people to deal with.” I wonder a lot about everything and how it fits into this virus that you accurately describe as dangerous. I had scarlet fever when I was 2 or 3. Strep every year after until high school. My body is and has always been a fighter. Could it be that it is now tired? Easily over stimulated? Yes.
I love what you say here about not seeking stress. I’ve found that to be very important. It’s important to know what one’s personal, subjective stressors are. This post-long-Covid reality is a new one for me. Scary at times, at other times “Well, I don’t have to do THAT anymore.” A paradoxical relief. I’m very grateful to you for posting these. Thank you.
Hugs and I hope the fog and tremors keep resolving. The medicine that is getting the most attention for fog is low dose naltrexone, so you could ask your doc about that.