3 ms·

This is very sad to see and I wish Dianna and her family the very best for her recovery. I'm into year three of long COVID (ME/CFS) and was fortunate to not rea

This is very sad to see and I wish Dianna and her family the very best for her recovery. I'm into year three of long COVID (ME/CFS) and was fortunate to not reach this level of severity, and to have improved slowly with time to mostly housebound rather than bedbound, but it is a remarkable disease. The name does it little justice, and fatigue - while certainly pathological and disabling - is not the primary feature. The disease appears unique in terms of an abnormal response to exertion. This has been characterised via two-day cardiopulmonary exercise testing. Healthy controls and even those with other severely limiting diseases will show improvement on day 2, but ME/CFS uniquely shows a reduction on the second day. Other key features are orthostatic intolerance with demonstration of reduction in cerebral blood flow in the majority on sitting/standing. Neurological symptoms including extreme sensitivity to light and sound explain her blindfold and ear protectors. Many have fluctuating cognitive slowing ("brain fog"). New insights into the metabolic derangements are being gained. Recently[1] evaluation of urine metabolomics demonstrated that healthy sedentary controls excrete many metabolites at 4 and 24 hours following an exercise challenge, while ME/CFS patients do not. Apart from the devastating effects on patients and the economic impacts of losing so many from the workforce[2], I believe that understanding the immune and metabolic derangements underlying this condition will lead to major insights across many health domains. [1] https://www.mdpi.com/1422-0067/24/4/3685 https://www.mdpi.com/1422-0067/24/4/3685 [2] https://www.nature.com/articles/s41579-022-00846-2 https://www.nature.com/articles/s41579-022-00846-2

zamnos 4y ago
That was a heartbreaking video to watch. My heart goes out to this woman and her family. In my experience, having caught covid in March 2020, fatigue is the problem. It's just that calling it "fatigue" doesn't spell out how dehabilitating that aspect is. It's maybe 100 ft/30 meters from my bed to the kitchen. At the worst of my long covid, I was getting winded walking from my bed to the kitchen. So then I'm in the kitchen, I'm supposed to make food for myself. But it's not like I could stand up for any amount of time. Chopping vegetables is right out. Making anything more advanced than microwave food was too difficult at the worst of it. And even then, figuring out the directions on them was sometimes too complicated. And I figured out C pointers and passed calculus. You don't know how your body can fail you until you can't do something that should be trivial to do but you simply can't. It's easier to see for physical maladies - you'd not ask someone with two broken legs why they can't stand up. Fatigue in a Long Covid context means it's too tiring even to just watch Netflix. That the exertion to sit there and focus your mind even slightly is beyond you. People are able to put Netflix on in the background and still fall grasp most of the story. With long covid, following a plot, just listening, with all the power you have remaining, is simply asking too much of your body. The most damning part of it is the aftermath from any significant physical exertion. Like going to the doctor in person. Remember, it's a marathon of exhaustion going from bed to the kitchen, so leaving the bed, getting dressed, going to the doctor, sitting the waiting room, filling out forms - remember your brain only barely works so writing out the answer to eben the first question, name, is a challenge. Seeing the Dr, hopefully they're of any use. Then you have to dance for them and take their tests. Finally you get home and crawl back in to bed, exhausted, so you take a nap. You wake up after that nap get some water and go back to sleep becy you're still tired. When you wake up it's literally been 4 days. You pushed yourself because going to see the doctor was important, but the overexertion of going to see the doctor wiped you out and not only were you bedridden for four days, but you were unconscious. That forces you to recalibrate your whole life. You can't just push through things and stay up a bit late or go out to see friends without stopping to think (which, again, is in and of itself a challenge in ways it never was before) is there anything I need to be conscious for in the next four days? So at least for me, "fatigue" was the primary complaint (followed by "brain fog"), it's just that without spelling out what fatigue actually means in the context of long covid, it's not apparent what that actually means.
- PaulKeeble 4y ago
  Post exertion symptom exacerbation however is worse because many other symptoms get worse the follow days, weeks even months after that visit to the doctors. This is what makes the disease so horrific because doing things you need to do worsen everything afterwards and sometimes you don't recover so you get iller and iller the more you push through. That isn't just fatigue.
fnordpiglet 4y ago
At the risk of being labeled a quack, try taking an L-citrulline supplement of about 1g/10kg of weight. This greatly helped my long COVID recovery. My thesis, which I have no direct science to back up, is that the blood vessel damage done by COVID may be partially responsible. Citrulline metabolizes in the liver into arginine, which is used in either to produce ATP or by epithelial cells to repair vascular damage. The body prioritizes vascular repair, so the arginine you normally produce if you have vascular damage is directed away from “energy” leaving you chronically fatigued. This is the same process by which sickle cell anemia leads to chronic fatigue - the shape of the sickle cell irritates the blood vessel lining. Citrulline is effective in phase II/III trials (sadly the primary researcher died and the research stopped) with sickle cell patients. https://pubmed.ncbi.nlm.nih.gov/11688916/ https://pubmed.ncbi.nlm.nih.gov/11688916/ This helped me a great deal, within a few hours of my first consumption of a citrulline malate blend I bought on Amazon I was myself again after a year of suffering. Within a few months I was able to stop supplementing and felt generally normal. YMMV. I asked several doctors before starting the regime about safety concerns and they had none (the body urinates any excess it can’t process, and citrulline is a non essential amino acid fundamental to the nitric oxide cycle) and they generally expected it would improve energy - as it did. Good luck!

zamnos 4y ago

That was a heartbreaking video to watch. My heart goes out to this woman and her family. In my experience, having caught covid in March 2020, fatigue is the problem. It's just that calling it "fatigue" doesn't spell out how dehabilitating that aspect is. It's maybe 100 ft/30 meters from my bed to the kitchen. At the worst of my long covid, I was getting winded walking from my bed to the kitchen. So then I'm in the kitchen, I'm supposed to make food for myself. But it's not like I could stand up for any amount of time. Chopping vegetables is right out. Making anything more advanced than microwave food was too difficult at the worst of it. And even then, figuring out the directions on them was sometimes too complicated. And I figured out C pointers and passed calculus. You don't know how your body can fail you until you can't do something that should be trivial to do but you simply can't. It's easier to see for physical maladies - you'd not ask someone with two broken legs why they can't stand up. Fatigue in a Long Covid context means it's too tiring even to just watch Netflix. That the exertion to sit there and focus your mind even slightly is beyond you. People are able to put Netflix on in the background and still fall grasp most of the story. With long covid, following a plot, just listening, with all the power you have remaining, is simply asking too much of your body. The most damning part of it is the aftermath from any significant physical exertion. Like going to the doctor in person. Remember, it's a marathon of exhaustion going from bed to the kitchen, so leaving the bed, getting dressed, going to the doctor, sitting the waiting room, filling out forms - remember your brain only barely works so writing out the answer to eben the first question, name, is a challenge. Seeing the Dr, hopefully they're of any use. Then you have to dance for them and take their tests. Finally you get home and crawl back in to bed, exhausted, so you take a nap. You wake up after that nap get some water and go back to sleep becy you're still tired. When you wake up it's literally been 4 days. You pushed yourself because going to see the doctor was important, but the overexertion of going to see the doctor wiped you out and not only were you bedridden for four days, but you were unconscious. That forces you to recalibrate your whole life. You can't just push through things and stay up a bit late or go out to see friends without stopping to think (which, again, is in and of itself a challenge in ways it never was before) is there anything I need to be conscious for in the next four days? So at least for me, "fatigue" was the primary complaint (followed by "brain fog"), it's just that without spelling out what fatigue actually means in the context of long covid, it's not apparent what that actually means.

PaulKeeble 4y ago
Post exertion symptom exacerbation however is worse because many other symptoms get worse the follow days, weeks even months after that visit to the doctors. This is what makes the disease so horrific because doing things you need to do worsen everything afterwards and sometimes you don't recover so you get iller and iller the more you push through. That isn't just fatigue.

fnordpiglet 4y ago

At the risk of being labeled a quack, try taking an L-citrulline supplement of about 1g/10kg of weight. This greatly helped my long COVID recovery. My thesis, which I have no direct science to back up, is that the blood vessel damage done by COVID may be partially responsible. Citrulline metabolizes in the liver into arginine, which is used in either to produce ATP or by epithelial cells to repair vascular damage. The body prioritizes vascular repair, so the arginine you normally produce if you have vascular damage is directed away from “energy” leaving you chronically fatigued. This is the same process by which sickle cell anemia leads to chronic fatigue - the shape of the sickle cell irritates the blood vessel lining. Citrulline is effective in phase II/III trials (sadly the primary researcher died and the research stopped) with sickle cell patients. https://pubmed.ncbi.nlm.nih.gov/11688916/ https://pubmed.ncbi.nlm.nih.gov/11688916/ This helped me a great deal, within a few hours of my first consumption of a citrulline malate blend I bought on Amazon I was myself again after a year of suffering. Within a few months I was able to stop supplementing and felt generally normal. YMMV. I asked several doctors before starting the regime about safety concerns and they had none (the body urinates any excess it can’t process, and citrulline is a non essential amino acid fundamental to the nitric oxide cycle) and they generally expected it would improve energy - as it did. Good luck!