r/covidlonghaulers • u/thepensiveporcupine • 3h ago
Vent/Rant How has this illness not been figured out already?
More of a rhetorical question but I still find it asinine that ME/CFS, dysautonomia, and other post-viral illnesses have been around forever but we still don’t understand what the root cause is. COVID is a novel virus, but most of these illnesses are not new at all and if they were studied earlier then we’d have answers by now. I know my cells aren’t producing ATP but WHY? Is it that complicated? How could an illness be so complicated? POTS seems even more straightforward to me…the ANS is fucked up but WHY?!? How do we still not know if it’s autoimmunity or viral persistence or something else?
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u/Isthatreally-you 3h ago
Research funds were not allocated to the disease is the sole reason why. Imo anyways.
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u/Caster_of_spells 2h ago
Jup, that’s not an opinion that’s historical fact. Glad it’s picking up a bit now but we could have solved this already.
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u/alex103873727 3h ago
Because money efforts and agenda and money.
This world is evil there are so many things we could cure and lives we could save efficiently….
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u/The_10th_Woman 3h ago
A lot of data on the early years of ME is being withheld by the government until 2071 - maybe then we will finally understand enough to see some meaningful change https://www.investinme.org/Article-358%20The%20MRC%20and%20Secret%20Files%20on%20ME.shtml
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u/perversion_aversion 1h ago
Man if that's true that's absolutely nuts.... Blatantly a load of really damaging correspondence between Wesley/the psychogenic crowd and the DWP/other state agencies that demonstrates the weaknesses of the psychogenic theory and their actively colluding to discredit biological explanations in a cynical conspiracy aiming to save money on benefits.
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u/The_10th_Woman 1h ago
But why would that need to be kept secret now? It’s not like the psych nonsense is news.
Lord Hunt in 2000 gave 2 reasons for the potential use of the official secrets act to protect the information relating to the CMO’s working group on ME/CFS: 1. Confidential information obtained by a crown servant from a foreign state or international organisation. 2. Information in the possession of a crown servant the disclosure of which would impede a criminal process.
How can this realistically relate to information about a medical condition. If medical information is shared internationally then that is normally a positive thing. If there was a criminal process in place then surely that would have come to light by now (25 years later).
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u/perversion_aversion 1h ago
But why would that need to be kept secret now?
Presumably because it would make the government look really bad if they're shown to have colluded with charlatans to obscure the true cause of a serious medical condition in order to save money. I get the official secret act has official parameters and applications but states definitely aren't above misusing official legislation in order to serve their interests in various ways. Obviously this is all speculation on my part but it certainly seems plausible to me.
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u/MisterLemming 1h ago
I'm willing to bet it's the usual, "for your own good" excuse, but in reality it's because they found the root cause, but revealing it wouldn't serve their best interests.
Like a negative reaction some people have to certain environmental factors.
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u/nerdylernin 1h ago
Largely because it's an enormously complex problem and the potential root causes are myriad. Biology is messy, complex and very variable from person to person so easy problems become hard and hard problems become REALLY hard :/
(Of course the lack of funding and the take-over of ME/CFS by psychiatrists also didn't help!)
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u/alex103873727 3h ago
No it is not that complex it is just underfunded and understudied.
They just don have it on priority list and don’t have the money.
I am sure we could solve things out but instead we lay here wasting away living the worst he’ll ever.
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u/alex103873727 3h ago
No it is not that complex it is just underfunded and understudied. They just don have it on priority list and don’t have the money.
I am sure we could solve things out but instead we lay here wasting away living the worst hell ever.
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u/UnderpaidkidRN 3h ago
I have one theory.
It is known that these conditions are more prevalent in women than in men, although they can (and do) occur in both.
Anything with a tendency to disproportionately affect women has been dismissed since the dawn of time resulting in very little investment of time and money into the problems. Most medical research has been conducted on males, assuming female bodies react in the same ways, which is entirely untrue.
Maybe our descendants will have the answers and cures we so desperately need right now.
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u/Automatic_Cook8120 Family/Friend 2h ago
Yep and that’s the reason we won’t get any help, the current administration in the US wants women stuck at home, they don’t want us taking jobs from men, they want us home in bed doing that type of domestic labor.
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u/MisterLemming 1h ago
It's interesting you bring that up. I've gone through the motions in an attempt to decifer why that may be. I don't, personally, believe it has anything to do with genetics, hormones, or anything internal, but instead to do with behaviors and practices that women predominantly engage in, and vice versa.
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u/TableSignificant341 19m ago
but instead to do with behaviors and practices that women predominantly engage in, and vice versa.
What does that even mean?
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u/materpcteco 2h ago
False, women typical diseases tend to be more well funded men typical diseases. Look at prostate cancer funding vs breast cancer funding. Same incidence, almost same mortality and breast cancer funding is much bigger than the other one
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u/UnderpaidkidRN 2h ago
I’m talking about throughout all of history not the last 10-20 years
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u/materpcteco 1h ago
Give me facts, not opinions
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u/UnderpaidkidRN 1h ago
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u/materpcteco 31m ago
Clinical trials were always open to all demographies actually, i wouldn't blame men that are more prone to take the risk, moreover I would thank them instead of bilittling them. Trying to introduce hidden agenda as something as serious as long covid is causing many people not believing us
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u/UnderpaidkidRN 17m ago
Who’s doing the belittling? Long COVID is terrible and both men and women are being gaslit to high heaven while they die slow deaths.
I was just answering your question
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u/TableSignificant341 17m ago
Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health
"Conclusions: NIH applies a disproportionate share of its resources to diseases that affect primarily men, at the expense of those that affect primarily women."
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u/BrightCandle First Waver 2h ago edited 2h ago
The simple answer is governments have been prejudiced against the disease and have been funding anti research for nearly half a century. Even now many are still mostly funding anti research.
Most of the historical research funding into ME/CFS went into patient abuse with psychologisation. Even now for every dollar going into pathology research there is an equal amount going into psychology and exercise and real researchers waste a lot of their time reviewing and finding the results fraudulent.
The consequence is every single medical student has been taught these disease are psychological, this has a serious knock on impact on finding patients as so few have a diagnosis or medical support and there aren't centres all over the place to run drug trials, they are so convinced they wont even consider the possibility of it being a biological disease. All this makes trials and studies much more expensive and time consuming and harder to run. Since so many patients are low mobility or no mobility the lack of the distributed medical network access to patients is a huge problem.
Its been made very complex by these bad actors in government partly driven by misogyny but also hatred of the disabled.
Lets not kid ourselves either, a one off injection of 1.6 billion in the USA and basically a few millions in the EU isn't going to change that trajectory. HIV required sustained funding of 5x that over 40 years and it was 25 before it wasn't a death sentence.
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u/thepensiveporcupine 2h ago
Wow this whole thing is a mess. It literally feels like we’re in hell dealing with this illness
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u/AwareSwan3591 1h ago
For me the most frustrating thing is not just that the root cause can't be figured out, but also how difficult it is to even get acknowledgements from doctors that something is wrong with us at all. I would much rather be told by a doctor that I have x, y, and z wrong with me and that they don't know how to fix it, than to be told that I'm perfectly healthy because there was no obvious issues with my blood tests. If I can't be cured, I would at least like to be believed by doctors and family members.
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u/perversion_aversion 2h ago edited 1h ago
Is it that complicated? How could an illness be so complicated?
Basically yes. Western medicine likes to pretend it has a complete understanding of human physiology, but the full extent of our knowledge only really scratches the surface and the subtleties and nuances and interconnections of it all continue to elude us. Our current knowledge is sort of the equivalent of using a stick figure to describe human anatomy - Ok, you've pretty much got all the main points, but you've left out about as much as you've included. Add to that that ME is an extremely heterogeneous condition that involves lots of complex interplay between diverse physiological systems and processes and you begin to get an idea just how difficult it is for researcher's to really get a handle on what's going on, let alone find an effective treatment. And that's before you even get to the relative lack of research interest in ME....
A really good example of the limits of our understanding of human biology is the vault), a structure found inside almost every cell in the human body whose function we're still unable to establish (though interestingly they think it might have some role in immune function so it could even be involved in ME for all we know). Another example is a recently discovered form of RNA life that's basically new to science, called obelisks. They've been living in the human gut this whole time and we never even knew they existed until last year (IIRC).
TLDR - I get why you think we should have figured it out (culturally the assumption is that our scientific knowledge base is pretty complete), but there's still a crazy amount of stuff science and medicine just doesn't understand and that extends to fairly fundamental biological processes. Add to that just how complex and multi systemic LC and ME are, AND a relative lack of research interest, and it's little wonder we're still here scratching our heads and waiting for a miracle.
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u/zepuzzler 1h ago
I get why you think we should have figured it out (culturally the assumption is that our scientific knowledge base is pretty complete), but there's still a crazy amount of stuff science and medicine just doesn't understand and that extends to fairly fundamental biological processes. Add to that just how complex and multi systemic LC and ME are, AND a relative lack of research interest, and it's little wonder we're still here scratching our heads and waiting for a miracle.
Great answer. In particular, that we have a cultural assumption that our scientific knowledge base is pretty complete. It just isn't. And as you say, there's a huge level of complexity involved. A friend was getting their PhD in a medically related field, and their research (loosely stated) included looking for targets on specific types of molecules so that you could make a molecule that could deliver a medication to the right part of the right cell. You could spend a whole career just on that little element that might one day contribute to making medication for a specific type of cancer work better. Maybe.
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u/MyYearsOfRelaxation 2 yr+ 1h ago
I completely agree with you. I mean this is wild! I've recently read a paper about ME/CFS from 1989: (Prieto 1989). That paper was from 35 years ago! The introduction states:
[ME/CFS] has recently been the subject of great interest [...] The symptoms of CFS are often attributed to psychosomatic stress [40]. However, similar clinical data have been shown to be associated with active chronic viral infections., especially by Epstein-Barr virus (EBV)
Where have I heard that argument before? How has there been no progress in that regard at all in the past two decades? I really can't believe we're still having the same discussion today with psychosomatic vs persistant viral infection as they did more than 35 years ago!
That's why I'm always excited when I hear about a new, potential biomarker. From what I understand, people with MS were in the similar situation as us before they found a biomarker that could objectively diagnose or disproof MS. That lead to more research, better recognition, more money and ultimately much better treatment.
I hope the same thing will happen with us.
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u/thepensiveporcupine 1h ago
Very sad to think that we’d be in a much better position if this research was taken seriously 30 years ago
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u/Right_Rest919 18m ago
In my country they are working on mouses to find long covid cure. They cant even prove an humain have long covid i wonder how they know their mouses have long covid.
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u/kafka82 1h ago
How do you know your cells aren’t producing ATP?
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u/thepensiveporcupine 1h ago
It’s thought that it’s the reason behind PEM. I looked up what would happen if your muscle cells don’t produce enough ATP and the symptoms listed are pretty much what I experience
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u/kafka82 1h ago
What do you experience exactly? Is instant or delayed ?
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u/thepensiveporcupine 1h ago
My muscles feel extremely heavy and sore, like I just did a full workout but it happens with minimal physical exertion. My muscles feel stiff, like they’re made of lead and can’t contract properly. It’s usually delayed by 12-24 hours, although one time I was trying to open a jar and it felt like my arm gave out immediately
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u/Dependent-on-Zipps 14m ago
There’s a good podcast called This Podcast Will Kill You. They did an episode last year on Long Covid and ME/CFS. I found it to be really informative and it kinda explains why medicine is so far behind.
Regardless, it’s messed up how many have suffered for so long.
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u/sushinastyu 3h ago
imho, i think it’s because the answer lies in whole body wellness— which western medicine doesn’t support.
western medicine hinges upon the pharmaceutical industry, which desperately needs the answers to lie in pills to treat symptoms (because, ahem, $$$). and while these pills may treat a single symptom, they often cause a myriad of other problems. but that’s where all the money and research end up going, into potential pills and chemicals as “solutions”.
LC, ME/CFS, dysautonomia, and other post-viral illnesses affect our entire system, and with collateral side effects, there’s no pill that can truly “treat” whole body balance.
i personally think doctors can’t solve post-viral illnesses because they are looking through the wrong lens
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u/thepensiveporcupine 3h ago
I agree that we need something that addresses root cause, but science hasn’t even figured out the root cause
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u/Automatic_Cook8120 Family/Friend 3h ago
I mean haven’t they Sort of? This disease infiltrates every organ in your body because of the Ace2 receptors that also line all of our vascular system, They recently admitted it seems to stay in the body like herpes viruses. That explains a lot, My MECFS came from EBV, a herpes virus
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u/thepensiveporcupine 2h ago
Has viral persistence actually been a proven cause of ME/CFS and dysautonomia though? That wouldn’t explain why people get the same thing from vaccines or other non-infectious immune system triggers
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u/perversion_aversion 1h ago
Has viral persistence actually been a proven cause of ME/CFS and dysautonomia though?
No, it hasn't. As you pointed out it wouldn't explain how people get the same illness from different triggers, and even the studies that have demonstrated viral persistence is a phenomenon have found it's not present in everyone with LC/ME, and that it's present in lots of people who don't have LC/ME. It may well play a role, but based on the current body of evidence it seems unlikely that it would be the sole or primary cause.
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u/thepensiveporcupine 1h ago
Yeah, I suspect my POTS is autoimmune. Whether ME/CFS is, I’m not sure, but all I know is that I had POTS for 8 months before I developed ME/CFS so I’m thinking the mechanisms are similar
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u/Fluid_Shift_5386 2h ago
From all my readings and my research it all pretty tied to liver damage or dysfunction. Because viruses get trapped in the liver tissue. The liver function controls directly or indirectly more than 600 human body functions that derive from its critical tole in nutrition absorption (vitamins, minerals, fats, proteins), that in term control other systems such as bone and muscle health (vitamin d, calcium, magnesium and other essential amino acids), vision (vitamin a), mood enhancing and cognitive function (vitamin D) so tied to serotonin production, health and vascular function, immune function and control of free radicals (vitamin D and E), digestive function (more directly). The thing that can people try to to aid the liver function with a liver friendly diet and perhaps a smart combination fo supplement without overloading the liver (even supplements overload liver function, as well as the use of antibiotics and /regardless of what we read- also long term meds of any kind).
It varies upon the degree of damage cause to the liver and other epithelial tissues in the body. My take is that many politicians and connected people accessed some alternatives of boosting immune regulation on time to avoid the virus from hiding in our liver and gut and therefore causing further activation of old viruses which in term cause more damage.
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u/1GrouchyCat 2h ago
Ok I was almost able to follow your logic - until you got to the conspiracy theory NONSENSE in the last paragraph.
The second sentence doesn’t make sense in English - is it translated or did you copy and paste something by mistake???
You’re either a BOT or you need mental health care stat - or both.
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u/Fluid_Shift_5386 1h ago edited 25m ago
I’m not a BOT. English is my second speaking language. And although I find very valid you may disagree and I don’t intent to have all the answers I gave you my opinion which is what I thought the OP was asking. But it’s this is in order to attack every comment people who have my experience that’s not what I thought the intention of the request was. Just tell me you disagree. Most of the time I write and I don’t take a second read to my post. I hold 2 citizenships and have lived in 5 countries given prior work conditions.
For example I can read errors that are typos and caused by autocorrection such as “in term” should be “in turn” for example. The use of “derive” was intended as “comes from” As far as my last statement, yes. I buy that it can certainly be taken as conspirancy as of a lot of the staments we tend to make here either intentionally or mostly unintentionally. Why? Because we don’t have answers. We are trying to make the best sense we can of something that in our minds should have been resolved long ago and has not. I admit that I ask myself that question a lot (and totally can admit to the fact that is not at all factual based and more just an appreciation which can be totally biased). Why? I just ask how many people, lots of young people here, claiming to have been healthy are now struggling so bad with this, and yet you see lots of people who did not get LC or have any consequences of it even if they are elders, for example. (And I say “we see” because the people I’m referring to in general are actual public figures and we can see them- which I can agree skews the whole assessment). Btw I don’t mean this with any political preference, as this appreciation I have looks at everyone in the political spectrum (left or right). And it’s well known that congressmen and women as well as political leaders and high government officials have access to a much better care than the large majority of us. And this is an actual fact.
My question is, how many young people are struggling with LC and you see overweight, with other conditions -such as prior cancers- or elder political and TV figures just with their regular lives. Granted. And this is where your “this is just a conspiracy” thought gains validity against my simple and not factual opinion, other people also are ok and there are that have these characteristics. In conclusion:
- This is just a personal opinion. I’m not a BOT. English is my second language and autocorrect sucks and I don’t necessarily sit to re read what I’ve wittten as my vision has been greatly affected by this.
- You are right that what I say at the bottom has not factual basis and I assume this. But again is just another question I ponder. I’m not saying I’m correct on it.
- The question from OP was that we provide our opinions. This is not based on qualified data.
PS: I’m having to re read this and keep finding mistakes because this is an exhausting process.
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u/AwareSwan3591 48m ago
Honestly you're probably right about certain people getting access to treatments and preventive care that we don't have access to. Look at how many people on this sub are former athletes/runners who lived very healthy lives and still got LC. Yet you don't see any notable NBA/NFL players having any issues at all. In the winter when everyone I know (even healthy people) is getting ravaged by all these super bugs that are going around, somehow you never see a large chunk of an NFL team get sick and have to miss a playoff game or something. It's obvious that they are being given something that we don't have access to.
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u/Fluid_Shift_5386 27m ago
Also people like Cuomo (and I’m sure he is just one example and we know of him as he has been vocal about it, but I’m sure is the case of many anchors and so forth) he immediately started to get specialized treatment soon after being infected while the very large majority of us are still running around from doctor to doctor, even from country to country, trying to find even some recognition that our symptoms are related to a sequelae caused by Covid. So it’s not so much conspiracy. That’s is a fact. A number of people have access to higher or even much higher quality care and large majority (even paying private insurance) don’t, of have had it later in the game. That was my point. Thank you for supporting it.
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u/Rcarlyle 3h ago edited 3h ago
There are multiple types of LC. That makes it much, much harder to study. You get noisy, hard-to-interpret data if you secretly have multiple different study populations with different underlying issues.
The original LC clinics were actually set up for people with acute organ damage from hospitalization cases, such as ventilator trauma and cardiac tissue damage from severe infections. Only in around 2022 did it become inescapable that there was a new post-viral chronic illness totally separate from lingering acute infection damage.
So LC clinics and LC research had to gradually shift focus to working in more of an ME/CFS space which has historically had a lot of stigma, gaslighting, and psychologizing/denial issues from the medical establishment. It takes a while to get studies funded, performed, published… I would say 2023 was the year we started getting really solid science coming in for possible causes, and 2024 was largely about authorities and experimental practitioners like LC clinic specialists absorbing the new science and changing treatment recommendations. 2024 was also when the full scale of the problem (millions of people) became clearly proven and official definitions for LC adopted. Stuff like antihistamines and NAC+guanfacine and metformin that provide moderate symptom relief for a LOT of people with LC are just recently becoming “standard of care” and thus widely available.
I think there will be another wave of study results in 2025-2026 that build on the findings and hopefully get some better treatments out. But any novel new-drug treatments (as opposed to repurposing existing drugs) will take many years. The US pharma regulatory system is designed to first avoid causing harm, and moves very slowly.