PEM has to first be understood with MECFS before Long Covid
Regarding PEM, you described it as fatigue which isn't quite right, PEM is more like a relapse, triggered by exertion (not just exercise, it could be cognitive or social exertion, like reading a book or having a conversation) with a delay of usually 1 or 2 days. PEM is also called post-exertional symptom exacerbation (PESE) which is a perfect name for it - it's an exacerbation of all symptoms, sometimes with the appearance of new ones. The symptoms do include fatigue but also muscle and joint pain, headache, nausea, tinnitus, gastrointestinal issues, dizziness and orthostatic intolerance. What it feels like is: I was sick before, but now I'm even sicker, and there's a further reduction of functional capacity.
I'll take up your suggestion of describing my PEM. Firstly, the main symptom for me is not fatigue but, what I assume to be a familiar cocktail of inflammatory symptoms. These are tingling under the skin in nerves of arms and chest (paresthesia?), tinnitus, elevated heart rate when active which is slow to return to resting heart rate, and - if more serious - gut bloating and gassiness. These occur in that classic time period of 24-48 hours. The main management strategy is to balance out activity on one day with deep rest of the same duration. They also seems to be helped by cold showers (lowering the inflammation) and deep breathing and, of course, further rest. As you say there is absolutely no feedback from the body at the time of activity that I have done too much: the punishment comes at minimum on the following day. If I only slightly overspend then I can recover in a day. A serious over-spend of energy can lead to a week or more of serious versions of the above together with a flu-like malaise that I suppose is the body's way of really bringing activity to a halt. I've also experienced an overall loss of capacity through not getting sufficiently to grips with staying within the energy envelope.
Interestingly my sCD40L was around 600 pg/ml (with values above 2000+ being problematic) but on the day of the test I was not experiencing any PEM.
Having the symptoms of ME/CFS for over five decades, I can only speak of my own experiences. For me, the layering-on of long covid has only complicated the picture. My immune system has limped along since 1972, when there was no language or acknowledgement of chronic symptoms (and a tremendous amount of ignorance around illness deemed ‘in my head’ by western medicine). I have managed to live a full life, had children, raised them, passionately pursued my work and continue to do so. Without labels, I learned on my own how to build in what I’ve always referred to as the ‘crash days’. Over the years various stresses (which for my immune system reads on high-alert) increased the amount of symptoms. I eventually took tactic of not only learning as much as possible about the conditions my body has dealt with, but working with functional medicine...eventually leaving that behind for Naturopathic and Classical Chinese medicine approaches, which were making a significant change in intensity of symptoms. Then covid (I refuse to capitalize a bio weapon) came along. I am not vaccinated, but had the first round of covid in March of 2020, and subsequent dances with it five times. The number of ‘crash days’ increased significantly, and the symptoms in general have multiplied and have taken longer and longer to put into background mode. Here’s what it looks like as ME/CFS and long covid have seemed to merge: muscle and joint pain, insomnia and deep fatigue, the resurrection of EBV and long Lyme, spine pain and inflammation resulting in meningial encephalitis (talk about brain fog!), dizziness and vertigo, development of colitis and now Chrons, tinnitus, nausea and vomiting. Twice in the past 18 months, right after a round of covid, I have ended up in hospital ER with outrageously high blood pressure (normally I run low), heart arrhythmias, visual disturbances, vertigo...and two new western med labels of pericarditis and meniere’s. I have used ivermectin strategically for three years, along with continued work with Naturopathic/Chinese medicine practitioners. I have found nattokinase and lumbrokinnase extremely helpful in toning down the brain fog and regained cognitive function. While continuing working regularly with my practitioners, and altering my routine to account for what the body is dealing with, I am incrementally and slowly finding my way out of this miasma of conditions. During the past three years, I have also found a new relationship with the conditions of my body, and have learned to dance with ‘what is’ versus being the victim of the conditions that have taken up residence in me. Like many who have responded to this thread, I was sick before, and have found new lows of illness seemingly exponentially squared, but something has changed in my conscious approach, and this has helped me to turn some sort of existential corner that is now letting my body and immune system develop some strength and acuity of function. I am 70 years old, so this is a BIG deal. With careful management, I am re-engaging in activities (backpacking, camping, hiking, etc.,) this summer that I have not been able to participate in without significant setbacks for 15-20 years. Strategic use of specific Chinese herbs, acupuncture, PT and a diet that needs to change to accommodate the changing tableau of symptoms, have been brilliant. With the exception of strategic use of ivermectin, I take no pharmaceuticals whatsoever. The kingpin of the return of function, I believe, has been the 50-some years of meditation and practices, which have helped me to grow into a very different relationship with Self and illness, and the sheer amount of time I now spend in relationship with Nature, in all of its Wisdom in so many different forms. Working with Nature, and letting go of a previous victim mentality, incorporated with health care practitioners who have a full understanding of Eastern and Western medicine approaches, has been my ticket to ride back in to a life, at a time in the arc of my life, that I never allowed myself to dare entertain is possible. Now I entertain it and support it daily.
The vitality of mitochondria is likely central to Long COVID post exertional malaise (PEM). Mitochondria are easily damaged by COVID infection. In the process, they are less able to produce ATP (energy) needed by the body. The production of ATP is inherently an inflammatory process that is normally balanced by normal metabolic processes. Repair occurs through mitochondrial biogenesis. However, when mitochondria have been depleted and damaged, inflammation from stress, exercise, diet and other environmental factors, can overwhelm mitochondrial biogenesis leaving the individual in a state of deep fatigue . Rest and reduction of inflammatory events along with nutrients to support mitochondrial biogenesis can restore mitochondrial vitality. It appears that the vitality of mitochondria prior to a relevant viral infection influences how long it takes to recover. Note that children who normally have healthy and vital mitochondria recover from infection and are less prone to Long COVID than adults. I'm an immunologist who experienced Long COVID for more than 2 years. Here is a link to the diet and nutrition that helped me recover. https://longcovidjourney2wellness.substack.com/p/long-covid-choosing-foods-and-nutrients
I am an avid runner and backcountry skier typically doing 8 to 10 hours of heart rate zone 2 through 4 workouts a week including long slow runs and high intensity interval training. I had the first two Pfizer vaccines, followed by a Moderna booster and a Pfizer booster. The last booster was in July 2022. From what I know, I only caught Covid 19 once on April 1st 2023. I always avoided cardio for several days after the shots. My Covid 19 (Omicron) was typical. Fever for several days etc. I waited about ten days before going for a run. Starting with slow and short “recovery” runs. I found that during these runs My heart rate was two zones higher that what it would normally be for the pace I was running. It also took me a few days to recover from these. I would be “wiped out” for a couple of days after these runs, moping around the house a bit like the lady on your photograph. Slowly over the course over the next two weeks I got better at recovering from these runs but was still experiencing elevated heart rate. After two weeks I tried an aerobic interval workout. The subsequent recovery was much like what happened after my first recovery runs. I had to be very slow at ramping up interval training. I had been training for a marathon at the end of May and wanted to run it but knew that with my training interrupted that my time would be poor. I then based all of my training on achieving my long slow run distances. I am 60 years old and ran the race in 4:20 whereas I should have been able to do it in 3:40. Subsequent to this I continued to train and found that my heart rate was better aligned with past experience but my breathing was much heavier than it should have been for a given pace. Many members of my running club would remark that I was breathing heavily and asked if I was ok? Through much of this time I was unusually brain fogged in the mornings. 7:30 felt like 5:30 and I never felt up and at ‘em until 10:30. Being an Engineer I was reading up on my condition and came across nattokinase and have been taking it per Dr. McCullough protocol for a month now. Interestingly, after one, if not 2 days I lost the morning brain fog and 5:30 AM felt like 5:30 again. I could get moving as before. My running is slowly getting better although I am still quite a bit behind where I should be. A few other runners I know have had similar experiences to varying degrees. Mine is probably one of the worst.
My reaction to the vaccinations increased the more I had. The first Pfizer shot went ok. Not too mush by way of issues. The second strangely amplified a small muscle or nerve issue I had in my right arm. All shots were taken in my left arm. This lasted some six months with strange spark like fealing in my right wrist. My first booster (monovalent) was Moderna. This one hit me hard and again amplified some small running niggles I had in my legs. I also began suffering from muscle cramps during long runs. Muscle cramps often occur for inconclusive reasons at some point on a runners “career” but again this seemed to be being amplified. I swore off getting another Moderna booster and insisted on Pfizer for my fourth (monovalent). This was better than the Moderna but still prolonged by issues. At the end of 2022 I could have had another booster (I live in Quebec, Canada) but decided I had had enough.
I don’t believe I have long covid but what I would term mini-long covid. If I wasn’t a runner I perhaps would not have noticed it as much save for the brain fog. I probably should have reported my vaccine issues but only recently realized there is a way to do this in Canada. I hope the above helps. Please keep up the great work Dr. McMillan.
Yes, I read that book too. I met Mr. Nestor when both of us lectured at the Carbogenics conference in Stockholm last year.
In my paper called “The Mammalian Stress Mechanism explains COVID, Long COVID, and Sudden Death” I explained how the mRNA spike protein contained in the COVID “immunizations” attacks and damages the vascular endothelium throughout the body. This disrupts microvascular perfusion and oxygen delivery to tissues. As a result, exercise causes abnormal cellular oxygen starvation that forces muscle cells to revert to anaerobic respiration that produces lactic acid as a “side product.” The lactic acid painfully accumulates in tissues. Normally the lactic acid is re-metabolized when exercise ceases and oxygen balance is restored, but in victims suffering COVID-induced microvascular damage, the re-metabolism of the lactic acid is delayed, so that the victim suffers residual muscle weakness and malaise.
There is one other observation I'd like to make about PEM - one which is not often mentioned. It is, of course, wise to pace and stay within the energy envelope but what I have found is that too little activity can rapidly shrink the envelope. I make best progress by ensuring just the right amount of activity to stretch my envelope but stopping short of breaking through it. I experimented with a period of quite radical rest to test whether this led to improvement - it really didn't: completely the opposite. This was only a short period of time so not accounted for by de-conditioning (as I understand it). And, while mitochondrial damage seems to be a likely feature of Long Covid, it seems to me very unlikely that this would account for this rapid change down and then back up again. To me it seems like the autonomic nervous system down-regulating and then up-regulating once more as the right level of activity is found.