Category Archives: chronic fatigue

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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.

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The work of disability

I look up the CDC website to see how many people are disabled. The CDC says that 27% of adults in the US have a disability. Yes, that is one in four. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.

I find being disabled to be a ton of work.

I think the view of disability in the US is often people who sit at home and have money thrown at them from the government.

This is not so, not so, no, no, no.

In clinic a patient needs a new socket for his artificial leg, having had a cancer amputation. He is an expert still working in disability exams, so we do a visit where he dictates much of my note, because in order to get a new socket, medicare requires very specific information in the clinic note. We also have notes from physical therapy and his occupational therapist and the company that makes the sockets. Why does he need a new one? He has lost weight and the old one doesn’t fit any more so he can’t walk securely.

Even so, I think it took six months and we kept redoing versions of the paperwork.

Another patient needs a new electric wheelchair. That one takes a year of repeating insistence and paperwork.

After my March 2021 pneumonia, I am disabled, which pisses me off. I like my work. It’s unclear how long I will be on oxygen and since we’ve been working on a diagnosis besides “gets pneumonia super easily” since 2003, it’s hard to predict the trajectory. I don’t know if I will be on oxygen permanently. It is exhausting to drag myself to physician visits, in four different hospital systems. Oh, and a patient can apply for patient assistance with the finances, but then all four have different paperwork. I am sick as snot and have to try to keep track of the bills from four systems and four sets of on line passwords and where is the stupid appointment? Edmonds? Seattle? Bremerton? Augh. The fatigue that accompanies the pneumonia makes it hard to cook, hard to clean, hard to comprehend bills, exhausting to make phone calls. Anyone want to trade? I’ll work and you can be disabled?

My disability company requires paperwork too, lots of it, and my taxes, and there is a long list of rules that I reread periodically. I needed an attorney to sort out the rules, since the disability company won’t answer my questions.

Now I am off oxygen and better, though still dogged by fatigue. I think that is probably permanent, but then I sometimes hope it’s just that I am finally rebuilding muscle, since the fast twitch muscles didn’t work for two years. They are a bit recalcitrant now.

And I am not in a wheelchair, have not had an amputation, am not in a rehab. If you have to take buses in your wheelchair everywhere, need two people and a crane to get you out of bed into the wheelchair, have to use a computer to talk for you, imagine. Anyone who thinks disability is easy money is insane.

It’s not clear if I can return to work. I might get pneumonia number five, which would probably take me out. No one knows how to lessen my risk. And I don’t have the energy and do not know if I will.

All the unknowns and unclears and we don’t knows. No one is disabled for easy money because it’s a job trying to get well or trying to survive it. And yet, I am happy to be alive and even to be able to dance some! Dance on!

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Long Covid and framing

Long Covid is being framed as the immune system going nuts and there are all sorts of ideas about what it is doing and why. And it may be that more than one of them is correct. But the assumptions that I am hearing are that we have to “fix” it. A disease model.

Since I have been through four rounds of pneumonia, and two other rounds that were probably also flares, I have a different feeling. I think that Covid-19 is a really nasty virus and that the immune system is CORRECT to be on high alert and upset.

But wait, you say, we are just supposed to put up with it?

No, that is not what I am saying. Treat infection. I wouldn’t be here if it weren’t for penicillin and clindamycin, not to mention that we know that tuberculosis is airborne and infectious. I would most probably have died as an infant if we did not know what we did about tuberculosis. However, rather than thinking of my immune system as broken now, I am thinking of it as being hyperalert. Perhaps having PTSD. What it is really saying is, “Do not get another infection.”

How does it say this? In my case, relatively mild chronic fatigue. Also, slower healing each round, this time taking two full years to get back to a chronic fatigue baseline. I am still feeling very lucky to not have a hypoxia and permanent oxygen baseline. I am also feeling lucky that my fast twitch muscles work again. But I have about half of what I would consider my “normal” energy. But don’t we all judge that “normal” from our peak energies in our teens and twenties? One friend says, “Welcome to your sixties!” when I complain that each time it takes more work and is slower rebuilding muscle.

Am I an outlier? I don’t think so. I think I am the canary in the coal mine, warning of what can come. I think that ANYONE can get a version of this, resulting from too much stress, infection or a combination of the two.

I don’t think we have to develop medicines to tweak the immune system. I think we have to change our CULTURE in the United States. We have to learn to value the parasympathetic state, not just the sympathetic fight or flight, aggressive, go go go, peak performance state. I think we are driving ourselves nuts and setting ourselves and our children up for illness and damage and a highly unhappy immune system.

So my approach to my version of PANS or Long Covid is to work on the parasympathetic state. Listen to my body. Rest. Think about what I want to do and then plan half of it. Be realistic about my energy level. Because if I can convince my immune system that I will take care of myself as best I can, and rest daily, and not be crazy, it will stand down. It will calm down. It doesn’t need drugs as much as rest, good food, good friends, and some work but not too much.

In a high sympathetic nervous system state, the immune system works less well. It is hyperalert too. People are more likely to develop auto-immune diseases, with Hashimoto’s thyroiditis being the most common. People are more likely to get infections too. We have to learn to value and support the parasympathetic nervous system.

The start is rest. If that sounds awful, the next step is breathing. Five seconds in, five seconds out, count and use a timer. Start with a couple minutes and work up to twenty. Pay attention to how your body feels at twenty minutes. It may feel unfamiliar. It’s also hard to keep paying attention to that five seconds in, five seconds out, even if you count. I start thinking about my grocery list or food or a friend I want to call and I have been doing this for YEARS. When you realize that you are not counting, return again.

I am a minimalist on pills, any pills. Supplements, vitamins, prescription. None of the pills grow on trees so I don’t distinguish between “natural” and um, what, “unnatural”? I think of it as “less tested” and “more tested”. As an allopathic physician, I prescribe when necessary and I get rid of pills whenever I can. It is better to take a daily walk and eat healthy food. And maybe take a nap too.

So this is where I start. I attended a whole program on LDN this week, low dose naltrexone. It is being used for fibromyalgia pain and for Long Covid and ME/CFS fatigue and brain fog. It has a very reassuring safety profile, pharmaceutical companies don’t want to fund research because it is old and relatively cheap, and we don’t know how long to put people on it, or what it does long term. More detail soon.

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One thing I am doing for health and joy is dancing. I try to dance at the Bishop Hotel every Tuesday, because it makes me so happy. The music makes me happy too and my friends.

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Neurogognitive effects of Long Covid I

Here is the first part of my notes from this lecture: May 24, 2023 Neurocognitive effects of Long Covid (International) part 2, by Dr. Struminger PhD, neuropsychologist.

I am trying to make this fairly clear to almost anyone. Some words may be unfamiliar to start with, but I will bet that you can sort it out. I would be happy to try to clarify any part if needed. These are my notes from the first half of this lecture, fleshed out to be clearer.

This is the Schmidt Initiative for Long Covid Global in English with real time translation into Arabic, French, Spanish, Portuguese and closed captions. Session recordings: https://app.box.com/s/onh1ma57ttjpi2c19qqxvmdao0kd2nsr

Dr. Struminger said that 1/4 to 1/3 of Long Covid patients have cognitive symptoms. A study comparing Long Covid patients with people who never got Covid-19 shows the Long Covid people to be three times more likely to have attention deficits or confusion. Part of the barrier to treatments is to define the problem, figure out the mechanisms and then start studying treatments. She said that she would share a few proposed mechanisms for cognitive impairment in Long Covid, but that it is probably multifactorial and it’s a rat’s nest. (Ok, I said rat’s nest. Dr. Struminger did not use that term.)

There are two main phenotypes of Long Covid brain problems: Hypoxic/anoxic and Frontal/subcortical. In hypoxic/anoxic certain brain functions are intact: Attention, visuospatial, cognitive fluency and memory encoding. There is impairment in problem solving and memory retention. This pattern is associated with the people who were hospitalized, deathly ill, on ventilators, or heart/lung bypass machines.

Frontal/subcortical is more common in the people who were never hospitalized and were not on a ventilator or ECMO machine. It can show up even in people who seemed to have mild Covid-19. The impairment is in attention, cognitive fluency and memory encoding, while the intact functions are visuospatial, memory retention and problem-solving.

Here are those lists in a table, HA for hypoxic/anoxic and FS for Frontal/subcortical.

Attention: HA intact, FS impaired
Visuospatial skills: HA intact, FS intact
Cognitive fluency: HA Intact, FS impaired
Memory Encoding: HA intact, FS impaired
Memory retention: HA impaired, FS intact
Problem-Solving: HA impaired, FS intact

The two types probably have different mechanisms and the super sick are more often the hypoxic anoxic. And there can be a mixed or both presentation.

Neuropsychologists test people to see what parts of the brain are working. Testing locally usually takes about four hours or more. Some brain functions have been mapped to parts of the brain but others are still mysterious. Efforts continue to match function to neuroanatomy. Going through each of the brain functions, some are mapped and others are not.

Attention is mapped and mediated by the frontal lobes. Attention is impacted by physical fatigue, dysautonomia, pain, shortness of breath, further impacted by emotional symptoms. It is REALLY easy to get stuck in a vicious cycle where physical symptoms or pain or hypoxia decrease attention function, which in turn makes physical symptoms worse. For example, hypoxia can decrease attention, which makes the person anxious and tachycardic, which in turn affects attention more.

The frontal lobes are very sensitive to hypoxic damage and to inflammation. Any inflammation in the body messes with them. The frontal lobes need oxygen and glucose. If a person can’t breathe, this messes up attention; if they are dizzy, it messes up attention.

Cognitive fluency. The anatomical correlates are less clear. Probably frontal and temporal, vulnerable to hypoxia and broad networks in the brain, vulnerable to physiological and mood disturbance. So vulnerable to the same things as the frontal lobes.

Learning and memory: Map to the hippocampi – sensitive to hypoxia and can be injured while the rest of the brain is comparatively unscathed. People have difficulty with retention of new information and not just attention/encoding problems. Neuropsychology distinguishes between attention/encoding and retention/recall problems. Those are different. In alzheimer’s, there is trouble retaining new information, even though people can encode it. In the frontal/subcortical long covid brain fog, there is more difficulty with attention/encoding. That is, if the person is tachycardic or in pain or dizzy or short of breath, it is more difficult to pay attention and encode information into memory.

Executive functioning. Frontal lobe: sensitive to hypoxia and metabolic dysregulation, significantly impacted by physical symptoms and mood disturbance.

The hypoxic/anoxic pattern has effects more like Alzheimer’s or a dementia. The frontal/subcortical is more like a concussion or traumatic brain injury. Neither sounds great, but there is more healing from the second than the first. Treatments for now are coming from the Alzheimer’s/dementia established treatments or from the concussion/traumatic brain injury established treatments. The first part of treatment is rest, rest, rest, and try to keep the brain from getting overwhelmed. I will write more about the ongoing changing recommendations.

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

The photograph is a screen shot of the brain from below from one of the conferences. There were over 300 people attending this zoom lecture, which is encouraging and hopeful.

For the Ragtag Daily Prompt: covert. The covert damage from Covid-19 is being sorted out.

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Brain thoughts

The attendees of the conference are all excited and hopeful at the fleshment of our understanding of Covid-19’s effects on the brain.

I am still absorbing the information, getting ready to write about it.

For the Ragtag Daily Prompt: fleshment.

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Frame

What is the tree and where is it?

I am still thinking about the Inflammatory Brain Disorder Conference.

The researchers and physicians are talking about the immune system as if it is broken in Long Covid and ME/CFS and the other illnesses, but I am not sure I agree. Maybe the immune system knows what it is doing. Maybe Covid-19 is a really really nasty infection and the immune system sends out antibodies to make us stay down, stay in bed, rest and keep from catching something else. Maybe an antibody that suddenly makes you weird will make you isolate and hide and not interact with the other potentially infectious humans.

Ok, the inflammatory brain disorders that destroy the brain, those are not adaptive. However, I’ve thought that MC/CFS was a “repair mode” since residency.

When I had my third pneumonia in 2014, I refused to admit to myself that I had chronic fatigue. It was sort of obvious. I went back to work six months after I got sick and seeing just four or five patients left me exhausted. I would come home and sleep on the couch. I also skipped breakfast, because I would go to sleep as soon as I ate. My blood sugar was fine and it was not a food allergy. It felt as if my body wanted to do repair work and wanted me to sleep while it was doing the repairs. I would sleep after lunch. For the next six months of work, I slept twelve hours a day and hoped that I would not have more than five patients. Also that I would not get sick.

We had everyone who had upper respiratory symptoms or a cough wear a mask and I wore one too, hoping to not get another pneumonia. That worked. I only got sick when I went to work in another hospital clinic system. I kept walking into rooms with patients with their masks off. I got Covid-19 in a mere five weeks there, after going a year at my clinic without getting it.

I spoke to a friend yesterday. She was talking about her damaged immune system. I said I didn’t think of it as damaged. With enough stress and infection, I think the immune system gets primed. And then it is as if it has PTSD: the immune system says, “Enough already! We are not going to LET you overdo and get sick again! We are putting you DOWN to sleep if you overdo!” It is an extreme version of “listen to your body”, as if the body is shouting. The immune system is hyperalert and goes all out if there is any threat or suspected threat.

Maybe we need to be more gentle with ourselves and each other. The US culture is so oriented to production and work and money as success. But is that really success, if we work 20 hours a day and drive our immune system to desperate measures?

Maybe we need to learn to relax. To take time off. To breathe.

And the talk about Mast Cell Activation Disorder said exactly that. We need to teach how to go from the sympathetic fight or flight crazy to the quiet, relaxed, parasympathetic state. That quiets the immune system down very nicely.

It won’t fix everything, I am not saying that. But it is something everyone can learn. Slow breathe, in five and out five. Practice.

Breathe.

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The tree is a Redwood and it’s in the Chimacum Woods Rhododendron Nursery. Not just rhodys and on the Olympic Peninsula.

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BRAINS

On Thursday and Friday I spent six hours daily glued to zoom, for the Inflammatory Brain Disorders Conference. Speakers, both physicians and scientists and physician-scientists, from all over the world, spoke. The research is intensive and ongoing. They spoke about Long Covid, both the immune response and “brain fog”. They spoke about anti-NMDA antibody disorder (the book Brain on Fire) and now there have been over 500 people identified with that disorder and a whole bunch more antibody-to-brain disorders! They talked about PANS and PANDAS and chronic fatigue and Mast Cell Activation Disorder and about the immune system over and over. The new information is amazing and I need to reread all my notes. Psychiatry and Neurology and Immunology are all overlapping in research, along with Rheumatology, since these disorders overlap all four.

It is a medical revolution in the making.

Best news was that 96% of Long Covid patients are better by 2 years from getting sick. That is tremendously reassuring, though the number may change. And the definition of Long Covid is still being sorted out and we do not know if people relapse.

I felt that MY brain was MELTED by the end, but I managed to enjoy the Rhododendron Parade on Saturday and just puttered around the house on Sunday.

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Working theory

I attended two Zoom one hour programs on Long Covid this week.

Thursday from the University of Arizona, 330 people logged on, hard science with thirty minutes of information about Mast Cell Activation Syndrome. They said 17% of the population, which is huge, if it’s correct. This is not mastocytosis, the cancer. This is the immune system going rather batshit. Though I would frame it differently, as the immune system fighting a really difficult battle.

Friday from the University of Washington. I don’t know how many were logged on. This was at a much more aimed right at the physicians level. People sent in questions and they collated and gave answers. They promised to answer some of the questions later on. My question was whether a high Adverse Childhood Experience Score predisposed to Mast Cell Activation and they did not address that.

So mast cells apparently can produce over 1000 different signals: cytokines, histamines, proteases and I don’t know what all. They are all over our bodies (are you creeped out? I am a little.) near the boundaries: skin, nose, gastrointestinal tract, genitals. They produce different signals depending on what is happening. The Thursday researcher basically said that they could affect nearly any system in the body.

I’ve heard of mastocytosis and even had a patient with it, but Mast Cell Activation Syndrome was barely on my radar. I am not sure if 17% of the population is at risk or has it. It is tricky to diagnose, because the best lab test is a rather tricky and rare one, and it is sort of an orphan illness: few doctors know about it and it does not fit neatly into any specialties. Patients have seen an average of ten specialists before they get diagnosed. Hmmm. Sounds familiar.

This researcher has a ton of papers out, that I have not started reading yet. MCAS is implicated in Ehlers-Danlos, a connective tissue disease and in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as well as POTS (postural orthostatic tachycardia syndrome) and can get triggered by Covid-19. Well.

The good thing is that treatment is quieting the sympathetic nervous system to let the parasympathetic take over. The sympathetic is the fight or flight hyper one. Parasympathetic is the rest, relax, mellow out, slow heart rate, blood pressure down, digestion and quiet one. I think United States culture is crazy fight or flight most of the time (We’re number one!– so what?) and the pandemic has put the whole world into fight or flight mode. Crazy.

Back in Family Medicine residency, 1993-96, I had a number of ME/CFS, chronic fatigue patients. They tended to be hyper sensitive to medicines and have all sorts of symptoms which were fluid and changable and difficult to pin down. What I noticed though is that many of them had been super high acheivers or working multiple jobs or crazy high stress, until they hit some sort of wall. Often an infection but not always. The ones I saw wanted to go back to working 18 hours a day. I said, “Um, that’s how you got this, I do not think that is a good goal.” This often pissed people off. Even back then, I thought that chronic fatigue was a body reset, where the body rebels, some sort of switch is thrown, and people rest whether they want to or not. Some do recover but it can take ages. The Thursday speaker seems to think it’s the mast cells doing this.

The UW speakers were careful. They said we do not know how long Long Covid lasts. One said they do not like to diagnose POTS, because POTS is usually permanent and the Long Covid tachycardia usually resolves. They are seeing people who got sick 2-3 years ago and are still sick, but they also have people who have recovered in 9-12 months. They do not know if patients are entirely recovered or whether there will be other problems later. They also aren’t sure that the chronic fatigue like symptoms are the same as the rest of the ME/CFS. Remember when dementia was Alzheimer’s? Now there are all sorts of different dementia diagnoses, Lewy body, frontotemporal, Huntington’s, stroke dementia, alcoholic dementia, Parkinson’s, Alzheimer’s, and others. When I was in residency, we had hepatitis A, hepatitis B and non A non B. Now we are up to G or beyond. Medicine changes and it’s moving as fast as possible for both acute Covid-19 and Long Covid.

The mast cell reasearcher talked about getting the sympathetic and parasympathetic nervous systems back in balance. I think maybe we ALL need that. Every person in the whole world. One way to quiet the sympathetic nervous system is to slow your breathing. Try it. For five minutes, or three minutes. Slow breath in for a count of four or five and slow breath out for a count of five. Let your brain roam around and fuss, but let go of each thought as it passes by and return to counting and breathing.

Slow in, slow out.

Practice and heal.

_____________________

The musicians are Johnathan Doyle and a friend. They were fabulous, last Tuesday at the Bishop Hotel.

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Xeno or infection phobic?

So is Xenophobia a pathological fear of strangers or foreigners? Like agoraphobia or arachnophobia? The Mayo Clinic site has a listing for agoraphobia but not for arachnophobia or xenophobia. Perhaps agoraphobia is more disabling. Though with our world having more and more people, xenophobia might be terribly dangerous as well.

Current world population: https://www.worldometers.info/world-population/.

Number of people with Long Covid: at least 65,000,000, though the talk I attended yesterday say that’s a low estimate. Nearly one percent of the world population.

This article in Nature: https://www.nature.com/articles/s41579-022-00846-2 is about Long Covid, the research to date and the areas that need research. This is a very fast moving target with information exploding from multiple labs.

I attended an on line continuing medical education about Long Covid yesterday: https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/. This is a global monthly teaching session about Long Covid and current research and diagnosis and treatment. Yesterday’s talk was about immune cell abnormalities that persist and evidence is showing up that they are causing some of the problems. However, as one researcher said, the problems are multifactorial and any system in the body can be affected in more than one way.

Essentially some of the immune cells are puffy, sticky and enlarged. The suspicion is that the postexertional malaise is related to these puffy sticky cells. During exercise, or for some people normal activity, the muscles need more blood flow and more oxygen. The puffy sticky cells are stiff and won’t slide through capillaries easily. The muscles send a panic “I need oxygen!” message to the brain and the muscles do not work. The recovery can take a day or two days because of the food/oxygen deprivation. The researcher said that the same mechanism is suspected in ME-CFS (myalgic encephalopathy-chronic fatigue syndrome).

My muscles are feeling normal. My chronic fatigue is comparatively mild and happens with bad infections or with a vaccine that raises antibody levels, as it is supposed to. That’s how immunizations work. Do I have antibodies that shut down my muscles or do I have puffy cells? I would postulate the former but I can’t be sure right now. My home science kit is not quite up to that study.

When my fast twitch muscles are not working, are affected, it is very weird. They DO NOT WORK RIGHT. It is hard to describe: it is sort of pain, but it’s more of a very very strong STOP EXERCISING NOW message. And then I am exhausted for 1-2 days. In contrast, my muscles are a bit sore after a four mile beach walk 2 days ago and then an intense physical therapy session, but I am not exhausted. No naps the last two days. I have returned to my normal sleep patterns, less hours.

One of the researchers presented new technology that can make a movie of the microscopic cells going though a space with a narrowing like a capillary. Video electron microscopy. They are describing the cell shapes and whether they go through a capillary diameter normally or stick, for people with no Covid, diabetics, acute Covid and Long Covid. All are different. It is fascinating new technology.

I think I am more infection phobic than xenophobic. People all have the same basic blood cells inside, even with lots of different genetic patterns. So far infection phobia has not led me to agoraphobia, but the talk yesterday sure makes me want to keep my mask on.

There were over 350 attendees yesterday from all over the world. Lay people can sign up as well and the videos are stored for anyone to watch. I will watch yesterday’s a second time because five different scientists presented in 30 minutes and I ignored the chat which was going full speed with references to look up. Homework. And progress is being made.

Blessings.

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For the Ragtag Daily Prompt: xenophobia.

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I took the photograph two days ago from East Beach on Marrowstone Island. The distance between the sea lions and the container ship is much further than it appears, and this is taken with a Canon PowerShot SX40HS zoomed most of the way out.

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Make space for the difficult feelings

I am watching a four part video from the UK about illness and trauma.

The first part is about how trauma memories are stored differently from regular memories. Regular memories are stored in files, like stories in a book or a library.

Trauma memories are stored in the amygdala and often are disjointed and broken up and have all of the sensory input from the worst parts, including the emotions.

The therapist is talking about healing: that our tendency is to turn away from the trauma, smooth it over and try to ignore it.

However, the amygdala will not allow this. It will keep bringing the trauma up. And that is actually its’ job, to try to warn and protect us from danger!

The therapist counsels finding a safe time and place and safe person (if you have one) and then making space for the trauma to come back up. One approach is to write out the story, going through that most traumatic part, but not stopping there. What happened next? Writing the story and then putting it aside. Writing it again the next day and doing this for four days. As the story is rewritten and has an ending, even if it is not a happy ending, the story is eventually moved from the amygdala to the regular files. People can and do heal. They may need a lot of time and help, but they can heal.

I am not saying that four days of writing stories is enough. That is one approach, but nothing works for everyone and people need different sorts of help. There are all sorts of paths to healing.

In my Family Practice clinic I would see people in distress. With some gentle prompting and offering space, they would tell me about trauma and things happening in their personal life or work life. Things that were feeling so overwhelming that they could not tell their families or friends and they just could not seem to process the feelings about it. I would keep asking what was happening and give them the space to tell the story. Many times when they reached the present they would stop. There would be a silence. Then I would say, “It seems perfectly reasonable that you feel terrible, frightened, horrified, grieved, whatever they were feeling, with that going on.” And there was often a moment where the person looked inwards, at the arc of the story, and they too felt that their feelings were reasonable.

I would offer a referral to a counselor. “Or you can come back. Do you want to come back and talk about it if you need to?”

Sometimes they would take the referral. Sometimes they would schedule to come back. But nearly half the time they would say, “Let me wait and see. I think I am ok. I will call if I need to. Let me see what happens.”

When a person goes through trauma, many people cut them off. They don’t want to hear about it. They say let it go. They may avoid you. You will find out who your true friends are, who can stand by you when you are suffering. I have trouble when someone tries to show up in my life and wants to just pretend that nothing happened. “Let’s just start from now and go forward.” A family member said that to me recently. Um, no. You do not get to pretend nothing happened or say, “I wanted to stay out of it.” and now show back up. No. No. You are not my friend and will not be. And I am completely unwilling to trade silence about my trauma for your false friendship.

Yet rather than anger, I feel grief and pity. Because this family member can’t process his own trauma and therefore can’t be present for mine. Stunted growth.

People can heal but they need help and they need to choose to do the work of healing.

The four videos are here: https://www.panspandasuk.org/trauma.

This song is a darkly funny illustration: she may be trying to process past trauma, but the narrator doesn’t want anything to do with it. And he may not have the capacity to handle it. He may have his own issues that he has not dealt with. And maybe they both need professionals.