5/21/2025 at 4:10:56 PM
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)by ajb
5/21/2025 at 6:20:00 PM
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.
by CooCooCaCha
5/23/2025 at 10:36:29 AM
Do you have any feeling as to why it only lasted 4 months. Sounds unusual to have the spot on CFS like experience for such a short time so wonder if there was a trigger to recovery.by coolcase
5/21/2025 at 11:29:08 PM
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.by automationwiz
5/21/2025 at 9:51:27 PM
Sounds horrible! I'm glad you recovered!by HarHarVeryFunny
5/22/2025 at 4:05:13 AM
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!
by giardini
5/21/2025 at 10:17:33 PM
Thanks! This was years ago so thankfully I’m well past it.by CooCooCaCha
5/21/2025 at 5:23:51 PM
> 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.
by Aurornis
5/21/2025 at 9:46:43 PM
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 :)
by smj-edison
5/22/2025 at 12:54:52 AM
I agree you do not have CFS.>I still haven't figured out source of the fatigue (potentially MCAS?).
MCAS is easy to self-diagnose or at least it was in my case. Mast-cell symptoms are triggered by exercise, sun exposure, orgasms and having the connective tissue in your abdomen jiggled (e.g., by riding in a bus with bad suspension along a road with many potholes). For me it is always the same symptoms (fatigue, maybe irritability, maybe a feeling of heat on the skin) regardless of the trigger. Sometimes exposure to one of these things is not enough to trigger symptoms, but then a second exposure before the body has had time to recover from the first exposure will trigger symptoms.
Also (after you remove yourself from any triggers) if the symptoms ameliorate slowly but surely over a period of 2 to 4 hours, that is a pretty strong sign that that the symptoms were caused by mast-cell "granulation" (activation) or at least it is a strong sign in my personal case: I have other chronic conditions that can cause similar symptoms, but if one of the other conditions causes a bout of fatigue or inability to stay productive, the severity of the symptoms will increase and decrease in chaotic or unpredictable ways.
by hollerith
5/22/2025 at 1:11:42 AM
Hmm, that doesn't line up with what I've read... Dr. Afrin talks about how MCAS is a lifelong issue that only gets worse later on. Things like a history of bloody noses, strange allergic reactions (random hives or asthma), ear infections as a child, etc.According to him, there should also be at least a couple of active symptoms, such as alternating diarrhea/constipation, edema, skin rashes or hives, foods that are high in histamine, pain while urinating, a constant feeling of being cold, hot flashes, and some others. He also encourages exercise as it helps regulate the immune system.
I certainly don't mean to invalidate your own experience—I know how hard it can be to not be understood—but perhaps there's something else that would explain it better? I'm happy to be corrected :)
by smj-edison
5/21/2025 at 10:23:21 PM
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.
by Aurornis
5/21/2025 at 10:46:00 PM
Thanks for the warning :) I have responded to mast cell stabilizers and H1/H2 blockers, which is one reason I'm pursuing further treatment. I've also read Dr. Afrin's 70 page paper on MCAS diagnosis, so I have a pretty good idea of what is and isn't MCAS. And after 6 years of pursuing and failing to find treatment, I've also got fairly good at avoiding quacks...> There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication
Will agree on non-response, but the typical blood test (tryptase) is not accurate in many cases[2]: "For example, in contrast to proliferative mastocytosis which usually drives significantly elevated tryptase levels, relatively non-proliferative MCAS usually presents with normal tryptase levels;"
> When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc)
Yes and no. [1] is a recent review that finds that these things really are quite comorbid with ME/CFS. All of them at once? Probably not, but a couple is common.
[1] https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v...
[2] https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-...
by smj-edison
5/21/2025 at 11:48:07 PM
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.by hypercube33
5/22/2025 at 1:04:19 AM
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.
by smj-edison
5/21/2025 at 6:00:23 PM
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?
by loa_in_
5/21/2025 at 8:02:20 PM
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.by treyd
5/21/2025 at 10:14:41 PM
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.
by Aurornis
5/21/2025 at 9:14:07 PM
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".by ajb
5/21/2025 at 11:26:10 PM
It's still really interesting to me. I had really never considered the possibilities of dysfunction at this low a level at all.by conartist6
5/21/2025 at 6:22:11 PM
What would be the root cause then?by CooCooCaCha
5/21/2025 at 7:31:21 PM
More grant funding needed to answer.by kridsdale1
5/23/2025 at 10:32:26 AM
Root causes I suspect. The problem of a syndrome.by coolcase
5/22/2025 at 9:38:59 AM
> damaged mitochondriaDoes 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 Aardwolf
5/21/2025 at 4:12:34 PM
mitochondria is the powerhouse of the fatigue researchby parpfish