4 ms·

It seems like mitochondria research is going to have a lot of impact over the next decades. For example, apparently some people with fatigue diseases have damag

by ajb 1y ago

It seems like mitochondria research is going to have a lot of impact over the next decades. For example, apparently some people with fatigue diseases have damaged mitochondria (eg, Dianna Cowern aka ThePhysicsGirl who has had a terrible long COVID illness)

parpfish 1y ago
mitochondria is the powerhouse of the fatigue research
Aurornis 1y ago
> apparently some people with fatigue diseases have damaged mitochondria (eg, Dianna Cowern aka ThePhysicsGirl who has had a terrible long COVID illness) In these conditions it’s more likely that mitochondrial dysfunction is part of the chain of events leading to the fatigue, not necessarily the root cause of the condition. Also I have to tread very lightly on this topic to avoid giving the wrong idea: Be a little cautious when taking statements about Long COVID and ME/CFS from individuals, as it’s not uncommon for people to present hypotheses as more concrete than the research suggests. With all due respect to Dianna Cowern, some of her past updates on the topic have blurred the lines between conjecture and fact and she’s collaborated with at least one Long COVID / ME/CFS organization that is known for having members that are sometimes less than scientific about their personal theories. It’s a very difficult and complex topic and it can be hard for patients to stay on top of all the different directions the research is looking.
- loa_in_ 1y ago
  In these conditions it’s more likely that mitochondrial dysfunction is part of the chain of events leading to the fatigue, not necessarily the root cause of the condition. Can you elaborate, what is this based on?
  - treyd 1y ago
    To rephrase, it's possible she already had an underlying mitochondrial dysfunction that was not caused by COVID, but then when she caught the virus it triggered some symptomatic metabolic dysfunction that's persisting even after she cleared the virus. This kind of thing is known to happen in some people with some viral diseases, but it's poorly understood.
  - Aurornis 1y ago
    Mitochondria might be involved, but the impairment might be the result of some other factor. In other words, it could be more of a symptom than a root cause.
- CooCooCaCha 1y ago
  What would be the root cause then?
  - kridsdale1 1y ago
    More grant funding needed to answer.
  - coolcase 1y ago
    Root causes I suspect. The problem of a syndrome.
- ajb 1y ago
  Makes sense. To be fair, I don't think Diana claimed that that was the root cause, only that her mitochondrial function was "f'd".
- smj-edison 1y ago
  Thank you for posting this :) I've have chronic fatigue for 6 years, and yeah, there's tons of uncertainty here (if there was an easy answer we would've all used it by now, lol). ME/CFS overlaps a lot with long covid, but there's also common comorbidities that further muddy the picture (MCAS, POTS, ehler-danlos syndrome, CCI, fibromyalgia, etc). The #1 sign of ME/CFS is post-exertional malaise, which is a delayed crash after even mild exertion, with the crash arriving anywhere from 4-48 hours later, and lasts for days after. Exertion can be taking a shower, thinking hard, etc. I just recently ruled out ME/CFS for me personally after figuring out that I don't have delayed crashes, but I still haven't figured out source of the fatigue (potentially MCAS?). Feel free to ask any questions :)
  - hypercube33 1y ago
    I have a thing where I can do abnormal exercise and two days later feel like a truck is hitting me slowly. is this similar? I've always just brushed it off.
    - smj-edison 1y ago
      Really hard to say from just that, what do you define as abnormal exercise? Couple of thoughts: 1. PEM is triggered by things that would be fine for a normal person (walking to car, standing in a line, etc). Over exercising is definitely a thing, but it's not the same as PEM 2. Does the following fatigue cause significant impairment, and does it last for a few days? There's some other criteria, but those are the first cut.
  - Aurornis 1y ago
    MCAS is actually one of the trending diagnoses that has attracted a lot of misinformation and misdiagnosis. Specialists who treat MCAS are overwhelmed by referrals and requests from patients who don’t meet the criteria or don’t have any basic lab work that suggests MCAS. Many of the diagnoses from primary care or self-diagnoses are from people who have been led to believe that it explains their vague symptoms. There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication, which is another way of saying they probably don’t have it. So watch out. It’s trending among doctors who dabble in alternative medicine or who use it as a catch-all explanation for vague symptoms, but the social media version of MCAS has diverged from the medical definition. Ehlers-Danlos is another self-diagnoses that is spreading in these communities. This one is so bad that actual Ehlers-Danlos specialists have difficulty sorting through referral requests because so many people and even doctors think it explains vague symptoms. It’s also trending heavily on TikTok. CCI was briefly popular as an explanation due to a few high profile influencers. For a few years everyone was demanding imaging and sending it to one of a few doctors who specialized in it. Unfortunately those doctors were found to be excessively quick to diagnose. There were a lot of people on forums who rushed into those surgeries with no improvement at all. Be really careful on the forums. When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) all at once it’s more likely that they’ve been either self-diagnosing with each trend or they have a doctor who will confirm any vague diagnosis they suggest. These things come in waves of popularity and you can tell when some of these people joined the social media circles by their list of self-diagnoses. Sadly, so much time has been wasted on chasing dead end diagnoses that spread via social media.
- conartist6 1y ago
  It's still really interesting to me. I had really never considered the possibilities of dysfunction at this low a level at all.
CooCooCaCha 1y ago
I really hope so. I went through a bout of cronic fatigue after a nose surgery that lasted ~4 months and it was utter hell. It really feels like the life has been drained from your body and on top of that, random things go wrong with your body seemingly every day. One day you’ll have strange stomach bloating and feel nauseous, another day you’ll barely be able to stand without fainting, another day you’ll feel heart palpitations, etc. What made it so much harder to deal with was it’s an invisible illness. Nobody knows about it, and it generally doesn’t show up on tests. The only test that showed anything significant was a tilt-table test where I fainted in the middle of it. Otherwise I went to the hospital multiple times because I thought I was having a heart attack, I’ve had doctors get angry at me for “wasting their time”, thinking I’m faking it, and friends/family not understanding. Not to mention having to pretend everything was fine at work. There were times I had to lie down on the bathroom floor to keep myself from fainting or due to heart palpitations. Luckily we had clean, private bathrooms. As I said, I slowly got better over the course of months, and not everyone is that lucky unfortunately. Honestly if I didn’t get better I probably wouldn’t be here to write this… Not to trauma dump but a lot of people don’t know about these illnesses or think they’re fake so I wanted to relay my experience.
- HarHarVeryFunny 1y ago
  Sounds horrible! I'm glad you recovered!
  - CooCooCaCha 1y ago
    Thanks! This was years ago so thankfully I’m well past it.
  - giardini 1y ago
    Yeah! Especially the "nose surgery that lasted ~4 months"! But be honest: even the surgeons must have been tired after that: 4 months of looking down the same nose - Gaaaaah!
- automationwiz 1y ago
  I don't want to rain on your parade but this was most likely not CFS. Chronic Fatigue Syndrome is diagnosed through the Canadian Consensus Criteria where Post Exertional Malaise is one of the defining factors. Where your body reacts to exercise or exertion 24h-48hrs later, not in the moment, but later. It also has to be going on greater than 6 months. CFS isn't "fatigue", its a bad name, it is a syndrome of symptoms.
Aardwolf 1y ago
> damaged mitochondria Does that mean in all the cells or only some? Does this damage remain as cells die and get replaced by new ones? Is this damage encoded in the DNA or caused later by COVID? What I mainly mean is, is this damage getting replicated to new cells as your body generates new ones? AFAIK only DNA affects what new copies of cells will look like, so if it's only caused by COVID later on, what keeps this persistent?

by ajb 1y ago

parpfish 1y ago

mitochondria is the powerhouse of the fatigue research

Aurornis 1y ago

> apparently some people with fatigue diseases have damaged mitochondria (eg, Dianna Cowern aka ThePhysicsGirl who has had a terrible long COVID illness) In these conditions it’s more likely that mitochondrial dysfunction is part of the chain of events leading to the fatigue, not necessarily the root cause of the condition. Also I have to tread very lightly on this topic to avoid giving the wrong idea: Be a little cautious when taking statements about Long COVID and ME/CFS from individuals, as it’s not uncommon for people to present hypotheses as more concrete than the research suggests. With all due respect to Dianna Cowern, some of her past updates on the topic have blurred the lines between conjecture and fact and she’s collaborated with at least one Long COVID / ME/CFS organization that is known for having members that are sometimes less than scientific about their personal theories. It’s a very difficult and complex topic and it can be hard for patients to stay on top of all the different directions the research is looking.

loa_in_ 1y ago
In these conditions it’s more likely that mitochondrial dysfunction is part of the chain of events leading to the fatigue, not necessarily the root cause of the condition. Can you elaborate, what is this based on?
- treyd 1y ago
  To rephrase, it's possible she already had an underlying mitochondrial dysfunction that was not caused by COVID, but then when she caught the virus it triggered some symptomatic metabolic dysfunction that's persisting even after she cleared the virus. This kind of thing is known to happen in some people with some viral diseases, but it's poorly understood.
- Aurornis 1y ago
  Mitochondria might be involved, but the impairment might be the result of some other factor. In other words, it could be more of a symptom than a root cause.
CooCooCaCha 1y ago
What would be the root cause then?
- kridsdale1 1y ago
  More grant funding needed to answer.
- coolcase 1y ago
  Root causes I suspect. The problem of a syndrome.
ajb 1y ago
Makes sense. To be fair, I don't think Diana claimed that that was the root cause, only that her mitochondrial function was "f'd".
smj-edison 1y ago
Thank you for posting this :) I've have chronic fatigue for 6 years, and yeah, there's tons of uncertainty here (if there was an easy answer we would've all used it by now, lol). ME/CFS overlaps a lot with long covid, but there's also common comorbidities that further muddy the picture (MCAS, POTS, ehler-danlos syndrome, CCI, fibromyalgia, etc). The #1 sign of ME/CFS is post-exertional malaise, which is a delayed crash after even mild exertion, with the crash arriving anywhere from 4-48 hours later, and lasts for days after. Exertion can be taking a shower, thinking hard, etc. I just recently ruled out ME/CFS for me personally after figuring out that I don't have delayed crashes, but I still haven't figured out source of the fatigue (potentially MCAS?). Feel free to ask any questions :)
- hypercube33 1y ago
  I have a thing where I can do abnormal exercise and two days later feel like a truck is hitting me slowly. is this similar? I've always just brushed it off.
  - smj-edison 1y ago
    Really hard to say from just that, what do you define as abnormal exercise? Couple of thoughts: 1. PEM is triggered by things that would be fine for a normal person (walking to car, standing in a line, etc). Over exercising is definitely a thing, but it's not the same as PEM 2. Does the following fatigue cause significant impairment, and does it last for a few days? There's some other criteria, but those are the first cut.
- Aurornis 1y ago
  MCAS is actually one of the trending diagnoses that has attracted a lot of misinformation and misdiagnosis. Specialists who treat MCAS are overwhelmed by referrals and requests from patients who don’t meet the criteria or don’t have any basic lab work that suggests MCAS. Many of the diagnoses from primary care or self-diagnoses are from people who have been led to believe that it explains their vague symptoms. There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication, which is another way of saying they probably don’t have it. So watch out. It’s trending among doctors who dabble in alternative medicine or who use it as a catch-all explanation for vague symptoms, but the social media version of MCAS has diverged from the medical definition. Ehlers-Danlos is another self-diagnoses that is spreading in these communities. This one is so bad that actual Ehlers-Danlos specialists have difficulty sorting through referral requests because so many people and even doctors think it explains vague symptoms. It’s also trending heavily on TikTok. CCI was briefly popular as an explanation due to a few high profile influencers. For a few years everyone was demanding imaging and sending it to one of a few doctors who specialized in it. Unfortunately those doctors were found to be excessively quick to diagnose. There were a lot of people on forums who rushed into those surgeries with no improvement at all. Be really careful on the forums. When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) all at once it’s more likely that they’ve been either self-diagnosing with each trend or they have a doctor who will confirm any vague diagnosis they suggest. These things come in waves of popularity and you can tell when some of these people joined the social media circles by their list of self-diagnoses. Sadly, so much time has been wasted on chasing dead end diagnoses that spread via social media.
conartist6 1y ago
It's still really interesting to me. I had really never considered the possibilities of dysfunction at this low a level at all.

CooCooCaCha 1y ago

I really hope so. I went through a bout of cronic fatigue after a nose surgery that lasted ~4 months and it was utter hell. It really feels like the life has been drained from your body and on top of that, random things go wrong with your body seemingly every day. One day you’ll have strange stomach bloating and feel nauseous, another day you’ll barely be able to stand without fainting, another day you’ll feel heart palpitations, etc. What made it so much harder to deal with was it’s an invisible illness. Nobody knows about it, and it generally doesn’t show up on tests. The only test that showed anything significant was a tilt-table test where I fainted in the middle of it. Otherwise I went to the hospital multiple times because I thought I was having a heart attack, I’ve had doctors get angry at me for “wasting their time”, thinking I’m faking it, and friends/family not understanding. Not to mention having to pretend everything was fine at work. There were times I had to lie down on the bathroom floor to keep myself from fainting or due to heart palpitations. Luckily we had clean, private bathrooms. As I said, I slowly got better over the course of months, and not everyone is that lucky unfortunately. Honestly if I didn’t get better I probably wouldn’t be here to write this… Not to trauma dump but a lot of people don’t know about these illnesses or think they’re fake so I wanted to relay my experience.

HarHarVeryFunny 1y ago
Sounds horrible! I'm glad you recovered!
- CooCooCaCha 1y ago
  Thanks! This was years ago so thankfully I’m well past it.
- giardini 1y ago
  Yeah! Especially the "nose surgery that lasted ~4 months"! But be honest: even the surgeons must have been tired after that: 4 months of looking down the same nose - Gaaaaah!
automationwiz 1y ago
I don't want to rain on your parade but this was most likely not CFS. Chronic Fatigue Syndrome is diagnosed through the Canadian Consensus Criteria where Post Exertional Malaise is one of the defining factors. Where your body reacts to exercise or exertion 24h-48hrs later, not in the moment, but later. It also has to be going on greater than 6 months. CFS isn't "fatigue", its a bad name, it is a syndrome of symptoms.

Aardwolf 1y ago

> damaged mitochondria Does that mean in all the cells or only some? Does this damage remain as cells die and get replaced by new ones? Is this damage encoded in the DNA or caused later by COVID? What I mainly mean is, is this damage getting replicated to new cells as your body generates new ones? AFAIK only DNA affects what new copies of cells will look like, so if it's only caused by COVID later on, what keeps this persistent?