Ooo interesting. The parallels with CFS are fascinating.
this post was submitted on 17 Oct 2024
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I wasn't even aware of that. chronic fatigue syndrome was actually real.
I thought I was just like side- depression.
is there anything known about CFS?
what causes it or how long it lasts or anything?
I know nothing about it except for like a comedy sketch from the 2000s at some point.
Lifelong disease usually triggered by viral infections. Very functionally disabling.
Known immune abnormalities which seem to affect the brain and mitochondria. I think @Neurologist@mander.xyz is specialised in it.
Also “chronic fatigue syndrome” was the name back when it was classified as psychological. Now that it’s classified as neuroimmune the name has been changed to Myalgic Encephalomyelitsis (ME) (Or ME/CFS).
As usual though for a medium quality source like ScienceAlert, the article is written by someone who has no specialisation in Long COVID/ME, or even medicine. So there’s a bit of oversimplification and overstating findings from one study in that article. Very few researchers think it’s a brain injury. Most think the immune system has been compromised (with some deficiencies and abnormalities) and it’s affecting the brain in unknown ways (hence the abnormalities found. It’s weird though because the immune system problems seem to cause some immunodeficiencies but also autoimmune reactions. They’ll need to be quite a bit more studies before we get a clear picture.
Couldn’t have said it better. And yes, science journalism often is basically repeating and dumbing down what a study says, but in science, and especially in medicine, a lot of studies tend to be wrong, make false assumptions, or overstate their findings, while journalists tend to take them for their word. There’s a reason you hear of a new cancer treatment in the news every other week but few actually make it past FDA approval.
wow, thank you so much for the detailed answer, I'm fascinated chronic fatigue syndrome turned out to be a neuroimmune disorder.
is ME genetic or do you just get unlucky as far as we know so far?
Seems like it generally just gets triggered by a viral infection, but obviously it's hard to find conclusive evidence for that as people get viral infections all the time and usually recover fine. In a way COVID was a useful 'experiment' where we got a lot of cases of people getting long COVID right after a confirmed infection (because everyone was getting tested, which you typically wouldn't do for your average viral infection).
Yeah. Atleast 50% report an onset right after a viral infection. And it’s not impossible to assume the other 50% were caused by viral infections too but the patient didn’t make the connection. Obviously we don’t really know yet.
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We don’t really know. But theres a giant GWAS (Genome Wide Association Study) called Decode ME with I think upwards of 25’000 pariticpants which is coming out in the next year. So we’ll know a whole lot more then. Hopefully it might lead to treatments.
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CFS is a syndrome rather than a disease because, until recently, it only presented as symptoms instead of as an identifiable problem with a person. I know that a some people who get diagnosed for CFS get later diagnoses as neurological disorders like multiple sclerosis.
It sounds like the more powerful MRI scanners are seeing inflammation in the rest of those suffering from CFS.
That would mean CFS is a lifelong degenerative condition.
Hey I’m a researcher who works on ME (in the past called CFS).
ME/CFS is currently classified as a disease/biological illness according to the CDC.
ME is a disease state in itself. We don’t know much about it, but it can’t be explained by other diagnoses, as the defining factor, neuro-immune abnormalities including immune activation showing up post exertion is unique to it. You’re completely right that we don’t yet have a reliable biomarker. We have a test that differentiates from healthy controls, but it was discontinued for ethical reasons because conducting the test leads to a sometimes permanent worsening of the illness.
In the past it’s been mixed up and jumbled a lot, but the picture is getting clearer.
There have been a few case reports of degenerative forms of the illness. But in general it takes a more classical relapsing remitting pattern. Although even in less bad stages some patients are severely functionally disabled, even bedridden and tubefed. It has a really wide range of severities with the least severely affected able to work part time and walk and travel, while the most severe might not even be able to communicate.
It looks like the state of the art has advanced since the last time I was exposed to it. Thanks for the clarification.
this is the extent of what I knew about CFS, I never heard of ME, I thought CFE was still a collection of symptoms that didn't even indicate a single underlying syndrome.
I like the progress, clearly seeing brain stem inflammation sounds like comic book talk from 20 years ago.
they're going to see inflamed dendrites next.
oh but isn't clogged dendrites how they identify multiple sclerosis already?
clearly I have to read more about this. catch up a bit.
thanks for the explanation.
My understanding is that MS is usually defined by the deterioration of the myelin sheath in brain cells which can be detected through MRI's.
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A collection of symptoms is a syndrome. Once there is a known definite cause, reclassification as a disease can take place. Lay misuse of the terms and reluctance to adopt updated designations have aided in a loss of distinction in what they refer to.
There is something else entirely to be said for how quickly one can progress from the disbelief of a particular diagnosis as anything beyond a punchline to descanting over the marvels of modern medicine as they relate to futher study of the mechanisms. If nothing else, it's a great reminder of how much information is available to us on a whim.
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What’s CFS?
Chronic fatigue syndrome.
It's another one like long covid where so much of the medical community thinks it's all in people's heads and not real, but unlike long covid it's less prevalent and thus studied less. We still don't know what it is.
There's even some hopes that figuring out long covid might lead to new ways to look into what cfs really is.
great.
remember when all the politicians and people who control things got covid?
What a totally normal and cool planet this is.
They were already shitheads.
If it makes you feel any better, those demographics were already suffering from lead gas exposure.
I'm still afraid of long-c. I insisted that we wore masks in airports and on flights when we took a trip last month. We live life in a normal fashion everywhere else (because we're vaxxed and boosted), but I wasn't willing to risk that environment.
Why just planes? Surely this would apply to all public transport.
Airports and planes see a lot of traffic from all over the world constantly rotating through. With some variation depending on the size of the city and your personal schedule, you're running into more of the same people on normal public transport.
And you're in very close proximity for a very long time. I don't know how HVAC works on an aircraft but I assume there's a large amount of recirculation.
I was on buses and trains this morning. They weren't nearly as crowded, the trips were a lot shorter, the air moved around at every stop, and like you said, they're all pretty local, so low risk of someone importing weird diseases. At least on the subways, you should still wear a mask if only because of the air quality. There's a lot of brake dust floating around.
The filtration system on an airplane makes it one of the safer places to be for almost any airborne infection. The airport itself is much more dangerous, longer flights notwithstanding.
If they're US American, a plane is likely the only public transportation they've ever taken. If they live anywhere remotely rural, it's likely the only one available to them.
Signed, -An American
I was going to say "almost every American takes a school bus at one point in their life" then I looked it up and was disgusted to find that recently more children are driven to school than take the bus.
It's absolutely ridiculous how many people drive their kids to school. The traffic reduction during fall break last week was astounding.
It's absolutely ridiculous how hard the school systems make it to get on a bus route.
You basically have to stay at the same residence and at the same school for their entire education. Even just moving within the district and they use it as an excuse to "put you on a wait list".
Add in the shortage of drivers (who wants that job) and any excuse they can use to change boundaries or cut a route.
It's like the fucking DMV on steroids.
I am curious where you are located, this has not been my experience working closely with our schools.
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What turns regular COVID into long COVID? When I got COVID I was better after 2 weeks but I had a nagging cough and chest discomfort for 2 months
It's very subjective. You can read more about it by searching around, but the prevailing definition means people who had more severe reactions to the infection than the average patient, which almost unanimously means a severe and prolonged inflammatory response.
What they are finding more and more is that this specific virus triggers undiagnosed or dormant autoimmune responses in patients. If you're familiar with Rheumatism at all, imagine a massive reaction to, say, twisting your ankle, but it goes out of control and causes swelling all over your body including your brain, lungs, heart, and renal system. This is actually what killed the most patients pre-vaccination.
The full body assault of an inflammatory response just makes the body unable to cope, and things start shutting down. It can kill children and older people very easily if you can't get it under control. Many succumbed to Pneumonia, but those that lived had damage to their major internal organs from the inflammatory response. You can also see some had been using the term "Walking COVID", meaning people who had cleared the infection, but had long term sustained symptoms similar to Emphysema. They've since just moved on to calling everything "Long COVID". Some people recover, some people don't.
This study finally identified the specific damage and detection to brain activity.
People don't get it. The inflammatory process can do these sort of thing to any organ or system, or parts of them.
People got a thing called COVID Toe. This is where you and every person already has some fungus that live on their feet and which gets into the skin and toenails. Maybe you have a little yellowing of the toenails or you're just "prone to athletes foot."
Then you get COVID and suddenly your immune system is working overtime. The fungus starts to multiply faster and spreads more aggressively. Your toes start to get itchy and red, more than usual. They swell. They yellow. Then they start to crack and ooze, possibly requiring surgical debridement or in the most severe cases, such as where the patient already had diabetes affecting their peripheral nerves, amputation of the foot to prevent necrosis and sepsis.
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All those people who refused to take COVID seriously have a lot of blood on their hands.
They don't give a shit, unfortunately.
They don't remember. On account of their brain injury.
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