Katie goes undercover to infiltrate a secretive feline drug ring, Jesse investigates the data on long COVID, and Rebekah Jones makes another surprise appearance
Also came here to write precisely this. Great reporting by Katie, but I thought at the end, Jessie had the right of it with his typical, "it's complicated" shrug.
That said, the FDA is clearly the problem here. Consider the incentive structure: you're Gilead: you have a successful drug approved for use in humans (no small feat in the pharmaceutical world). There has been a discovery about off-label use in felines; but if anything goes sideways on that, it threatens to undo the laborious and massively-expensive work you've done going through Phase III human trials, whereas the potential upside (financially) is likely marginal.
We all agree selling a drug to cure a fatal feline condition is the right thing to do. Absent the possible liability with the FDA, it's also the smart and profitable thing to do. Gilead isn't refusing to do this because of moustache-twisting; they're doing it because they stand to lose more than they stand to gain.
Came here to write exactly this. I understand the logic of "if complications occur with cats, someone needs to study them for humans too", but I'm struggling to see why this "someone" should be Gilead. (J&K have buried the lede here a bit, but the 2020 Atlantic article https://www.theatlantic.com/science/archive/2020/05/remdesivir-cats/611341/ spells this out in more detail.)
i hate to say it but long covid just feels so “online.” with most diseases i can usually name at least a few people that have it that i know personally, but with long covid there’s nobody. it seems to be exclusively an anecdotal/self-diagnosed disease among white soys on twitter. and 99/100 times said person was already hyper-online, reclusive, quad vaxxed, etc etc. just feels like there’s almost personal stake having long-covid. i guess i also have personal stake in not having it, but isn’t that the same with any disease.
I commented above about this, but it is real. My sister developed it long before the shots even existed and she is anything but reclusive. She was infected in March 2020 and suffered a cardiac arrest in May 2020 and arterial dissection in her brainstem in July 2020. She needs infusions of infliximab every 8 weeks to stand and walk. She has aphasia. At her recent neurology appointment, the neurologist stated that her myelin sheath had been "eaten through" by covid. They are worried about another clot or dissection so scheduled another MRI. These are highly qualified specialists at UPENN hospital in Philadelphia (I know everyone calls it HUP now but it will always be UPENN to me).
I saw what covid and long covid did to her. It is personal because it is DEVASTATING to lose friendships when people do not understand and say hurtful and cruel things. My sister is not a Meme, she doesn't have a twitter account, she is a real person with a real illness that really disabled her. I was there the entire time.
So sorry. Your sister’s post viral symptoms are specific and terrifying, rather than vague or general. IIRC there is much evidence that this is a type of viral damage. The question is not about terrible cases like your sister’s (and I’m very very sorry she has been so horribly harmed) but about the ones more difficult to diagnose because the symptoms, like post viral fatigue, headaches, anxiety, could also be attributable to other causes than Covid. Those cases are really a mess, diagnostically, unlike, of course, your sister’s. I’m sorry anyone has said anything cruel about her condition--Covid has been so politicized, unfortunately.
Since it's such a vague, poorly-defined syndrome, it can essentially be both real and fake at the same time.
For your sister, apparently it is a real thing.
That doesn't mean it's a real thing for everybody who claims to have it. I know a guy who claims to have long Covid (when he remembers) because every few months he feels like maybe he's a bit more tired than he should be.
Very few people (nobody?) seems to be claiming that it literally doesn't exist for anybody.
This sounds like nonsense. Covid “ate through” her myelin sheath? Is it possible that its being worn down from Covid that then led to another syndrome? I don’t believe in long anything. Diseases can wear down your body for sure. I once had a pretty rough case of bronchitis that even with antibiotics wiped me out for over a month but that’s just kind of the disease. I don’t classify it as “long” bronchitis.
Well my sister is back in the hospital since Wed of this week for complications from long covid but I'll just call up her rheumatologist and her neurologist and say release her? It's all good, Moltar from the internet says it's nonsense. I have been with my sister the whole time I and I know what happened to her. It's easy to say you don't "believe" in something when it isn't happening to someone you love. Iong covid and covid are real I've seen what they have done to her.
Thanks I appreciate it. But for real, maybe she has something. I Just don't think it should be classified as "long covid." For instance, I sprained my ankle very badly about two years ago. That made it unable for me to run anymore for at least 6 months. Between that and working from home I eventually developed some very serious issues with my back muscles. I would never refer to that as "long sprained ankle." Even if the sprained ankle led to it, the back problems weren't a direct cause of the sprained ankle. It was many things that led up to it, and sprained ankles don't inherently cause back problems. I had some back muscle issues and I separate those from the sprained ankle. Just like I believe whatever your sister has may have been exacerbated or kickstarted by Covid, it could just be something genetic or something that would have happened anyways.
Dude she's in the fucking hospital waiting for an MRI please just stop. You win the hip cool anti woke hyper rational awards. And if you think your sprained ankle is the same as what I saw my sister go through from an infection with a BIOWEAPON (covid ) in 2020 then I don't know what to tell you.
You think you know more than the doctors at UPENN please call them up and take over her treatment and cover her medical expenses then I could use the break I'm exhausted.
The funniest thing is if you knew my views on things like elections and 9/11 and COVID & China/Russia you wouldn't think of me like some npc sheep who believes what the media says about covid lmao you would probably feel like a liberal compared to me LMAO. Ok back to work then going to visit my sister in the hospital then feed her cat. Good thing long covid is fake i can't wait to tell her doctors she is cured forever LMAO
I have long covid. I got sick partying in Vegas. I have one social media account (TikTok, which I got after getting sick). I wish I didn’t have a personal stake in any of this.
As mentioned elsewhere in the comments, no— I, of course, can’t say that it’s 100% Long Covid given it’s a diagnosis of exclusion. But I do have a robust medical team that determined it was absolutely the most likely explanation after many tests (MRIs, lumbar punctures, etc.) to rule out differentials.
I can also see you are not asking in good faith, given you “don’t believe in long anything.” I wish you continued health, so you may never have to understand. Cheers.
I know one woman who seems to have long Covid, and she’s 65ish and anti-vax; she barely even believed Covid existed before she got it. I’m confident she’s not faking because for her it really *is* embarrassing. I don’t think she would use the term “long Covid” to describe herself, and I don’t think she talks about it much, but she’s in the church choir with my dad and can’t really hide it. She’s just never fully recovered. Maybe it’s not so much ongoing viral issues, maybe it just scarred her lungs or something?
Could this just be your lack of knowledge? I have a post-viral disease. One time I was asked to talk about my experience at a small event, and afterwards, I had four different acquaintances tell me they had Long COVID. I wouldn’t have known otherwise.
>the reputational damage associated with admitting to it could last forever
i think this is mostly the problem right now. my previous comment was pretty ignorant. i don’t mean to completely dismiss long covid, i have no doubt there can be long-term effects as with any disease, but it feels far too blanketing to me. as Katie and Jesse mentioned, the symptoms are all very broad and vague, which is ripe for self-diagnosis.
at this point i’d say it’s almost a branding problem; calling it “long covid” immediately dismisses any and all conservative attention, and it becomes a wave to ride as the next big trend for “disease influencers” (gross). i stand by my statement that there are people who literally stand to have financial and social gain if they have or claim to have long covid. it goes beyond advocacy of the damage covid could have on someone’s system. the loudest people make it their personality or job, and they’re the ones seen as representatives, unfortunately. it’s a social credit in some circles. all of which only serve to delegitimize the disease, something that I’m partially doing I guess.
also this is just my theory and maybe i’m overstating it, but i really think it stems from the trend of self-id and privileged, normal people looking for a victimhood badge to pin to themselves. again, only serves to delegitimize those who really struggle.
What if we just stopped giving a shit about who is looking for a victim hood badge and who isn't? I have lupus. I've been to the ER alot over the past few years. In October, I'd been feeling off for a week or so and had a very high heart rate. I went to the ER and the doctor treated me like a neurotic little female drug seeker who wanted attention andmto collect diagnoses. Until the x ray found pneumonia (I aspirated on a chocolate chip cookie two weeks earlier-- a cat jumped on my lap and distracted me while eating it!). Did that doctor apologize ? Of course not. 2 years prior, I went to the ER 3 times for excruciating kidney pain and was treated similarly, bc I was there alone and I am a butch woman. The 4th hospital found stones and a kidney infection. Maybe if people cared less about "catching " fakers and more about helping sincere people, everyone would benefit.
I just posted about this in the thread. Doctors and nurses can suffer moral injury from dealing with scammers all the time. You can start to see everyone as a liar. It's hard to keep expecting honesty and respect and getting let down all the time. It's a constant struggle to try to give everyone the benefit of the doubt.
Imagine a job where you have to be very physical, great in a crisis, good with technical equipment, super quick thinking and high emotional intelligence. All while dealing with a nutty populace.
It's terrible that people like you have to suffer for it. What they did was wrong. I just think that all the scammers share some blame.
This is the thing with cops too. People are like "why do some cops treat everyone like dicks?" And the answer is a lot of cops, particularly in tough areas, end up dealing all day with people who will lie about anything, resist, fight, etc. Some people can stay positive in the face of that, many not.
It can undermine anyone's desire to give people the benefit of the doubt after a while.
I also think there’s an issue with media/experts claiming that like 11% of people who have had COVID have long COVID and the cases of people who have had a bad reaction to a disease (which happens to multiple diseases). Those are two very different things and then they’re constantly getting conflated (because it fits a certain narrative). Add in vague symptoms and it becomes very murky very fast.
When my brother in law got engaged, My husband and I were concerned. His fiancee, Diana, had fibromyalgia. She had been in a gym accident, and was suing the gym because her injury caused her to get fibromyalgia. She got a financial settlement. After she got the money, she developed multi day migraines, chronic fatigue syndrome, and still had fibromyalgia.
Fast forward a couple years, and she became paralyzed while in a Lowes. During her hospitalization it became obvious that this was a conversion disorder; a hysterical illness.
The doctors said that confronting her with the diagnoses wouldn't do any good. So she went through a sham of an inpatient physical rehab stay.
The fake limp went away after a couple years. Right now she is having hypoglycemia.
All of her health problems make it so she can't work, though her kids are now independent young adults. So BIL continues to do all the work: working full time, shopping, cooking, cleaning, laundry and managing all the kids stuff.
I will bet you there is a 100% chance she is going to get long covid.
These people make it so hard for people who really do have long covid.
It's like ER doctors and nurses who have to deal with so many drug scammers that they are suspicious of everyone"s pain. The worst thing about the Boy Who Cried Wolf is that in real life it is other people who pay the price for the scammers.
But what if every person you personally know with a disease is a Diana? It's not a matter of emotional comfort to disbelieve a disease exists, it's pattern recognition.
When there is disease that all grifters claim to have, and there is no "smoking gun" test for it, it's asking for health care workers to just have faith. Which is fine- it's just really fucking hard.
The cat story was riveting. I appreciated hearing about something so perverted by nuance that I couldn’t get outraged by either side. Great work Katie. My husband could overhear and said “I love these guys.”
I bought GS from Robin. My cat got FIP in summer 2020. At the time I assumed there was some kind of mark-up despite the Atlantic article, but I had no idea they were making so much. I'm honestly not that bothered by the amount of mark-up per vial/pill, or even that they weren't transparent about it. GS saved my cat, and without FIP warriors, I wouldn't have had access to the specific form factor (small tablets) that I could actually get into my cat.
I'm much more bothered by the fact that some admins were essentially pocketing all that cash while others were doing all the actual work of triaging and helping with dosage etc. And that certain brands were being favored or even having adverse outcomes covered up. We did notice what appeared to be a difference in dosing between two batches at one point.
Also, I don't know if there was some separate drama back in 2020, but the Facebook group was completely shut down briefly and then a new one was created back then. No real explanation was given.
I think people who say they have long Covid have one of four things that can be difficult to differentiate:
1) Unrelated illness
2) Covid-related psychological distress resulting in psychosomatic illness
3) autoimmune disease triggered by covid
4) lingering direct Covid damage.
I have personally developed a (usually) post-viral autoimmune disorder without remembering anything about the illness, suggesting it was rather mild at the time. (It was glomerial nephritis and I fully recovered.) I think post-viral issues are more common than people realize. It does not mean if you are more tired now than two years ago you have one.
Autoimmune diseases are also very under-studied and many people with them find that the average PCP does not at all take a holistic approach to finding and treating the cause of their symptoms. This pushes people who otherwise were not "crunchy" into alternative medicine circles, which can also be very online. Lots of people with autoimmune disorders also report feeling a flare of symptoms after having Covid (including me!), which makes complete sense after an intense viral infection. People with chronic health problems also just might need 3-6 months to be completely back to normal, but that doesn't necessarily mean it's long Covid.
Yeah I got long lasting post-viral issues after a bad dose of COVID-then-pneumonia.... and I figured it wasn't something unique because I had similar after a bad case of glandular fever a while back (including the nephritis that you had)
Long COVID is real and people with it deserve treatment. But the Long COVID community has a quack problem. Dana Parish wrote a book about chronic Lyme disease and claims that Lyme disease causes MS (almost everyone with MS is infected with EBV). She's also one of those Zero Covid people. Diana Zicklin Berrent has claimed that Long COVID is like Adrenal Fatigue, which doesn't exist. People with Long Covid need good science so that they have effective treatments. It's also important for research to recognize that Long Covid isn't just one thing. People with the post-viral fatigue syndrome should not be treated with exercise. People who ended up with damage to their lungs and or hearts due to a severe case of COVID will probably benefit from exercise to increase their lung and heart strength. And people who have a lingering cough will probably get better with time. That also means that some people who think they have Long COVID may have something else. Some may have MS and some may have Lupus and they will need appropriate treatment for their actual disease. We don't want people finding out that the Long Covid they've spent 3 years being treated for is actually Lupus and in that time they've lost half of their kidney function. There was an article in a medical journal about two cases of advanced lung cancer that had been misdiagnosed as Long COVID. People are going to die from errors like that.
A good medical journalist would make sure that the patients they're reporting on have tested positive for SARS-COV2 either by PCR or antibodies. They should realize that patients are the experts in their symptoms but that doesn't mean that the patients know the cause of their symptoms. Even doctors often don't know the cause of their symptoms until they've done tests and they can misdiagnose people. I get the impression that Ed Yong has let his compassion for patients overwhelm his journalistic instincts. If you're a medical journalist and some of the activists for a particular condition have a history of advocating for fake diseases, you should report on that. It's also important to report on the range of scientific evidence on that condition, rather than just the science that backs the claims of the patients you've interviewed. He also seems to have fallen for the idea that it's somehow disrespectful to people with Long Covid to drop covid precautions when nearly everyone has some immunity. The good news is that infections with SARS-COV2 are now less likely to result in Long COVID, probably because nearly everyone has immunity, but he seems skeptical of that finding. THat's a bit concerning
This is exactly it. I’m sympathetic to people who are suffering, whatever the cause. But it isn’t doing anyone any favors to blame a specific cause without strong evidence. That does put patients and doctors in a difficult situation when no specific cause is evident, but that’s always been the case. “Sometimes everyone feels like crap for reasons we don’t fully understand” is not very satisfying but it seems to be true.
"Brain fog isn’t like a hangover or depression. It’s a disorder of executive function that makes basic cognitive tasks absurdly hard" and gave an example of a woman who "“runs into a mental wall” when faced with tasks as simple as filling out forms. Her memory, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult."
The woman might very well have long COVID, but Ed Yong's outright dismissal of the idea that brain fog could be like symptoms of depression really got to me because the description of her brainfog felt almost exactly like some of the problems I had because of severe depression. During my worst periods of depression, my executive functioning was sometimes even worse than that. That Yong wasn't willing to actually engage with similarities between brain fog and depression and just dismissed the idea they could be similar or the same bothered me enough that I actually emailed him about it. I never heard back.
I have depression, which is well controlled with medication.
I got Covid at the end of last summer, and my dad died a few days into my illness. I spent the next five months with brain fog, exhaustion, terrible executive functioning, and poor memory.
Did I have long Covid? No! I was fucking depressed! I waited, and it went away.
I have a lot of joint pains in my ankle now. Do I have long Covid? No! I'm fucking 55 years old and joints hurt at this age. I am waiting, and it will go away.
I've had times where I've spent hours of the day in bed or on the couch (for instance, when dealing with a ton of morning sickness) and it makes your body HURT. It gives you migraines. Your body is not designed to lay and sit all day, it's really not. I'm not surprised that the same people who are experiencing severe fatigue are experiencing muscle and nerve pain.
And I've definitely also had the "tincture of time" experience. But I do wish doctors were more explicit about saying "I want to see if this goes away with time, stays the same, or gets worse, because the treatments I have are pretty invasive and could even make things worse for you in other ways." A lot of them think that in their head but don't communicate it to patients, figuring that they'll come back if it doesn't go away. I think it doesn't foster a good relationship.
I’ve seen what appears to be a negative spiral of inactivity and pain/fatigue in some people I know who are chronic illness sufferers (of various kinds). I’m not them, so who knows, but my own experience with depression and (separately, at times) fatigue is that the painful process of getting up and doing things IS the remedy to being unable to get up and do things. Which is really inconvenient and uncomfortable. And obviously it can’t be the case for everyone - some people surely do have conditions that require them not to get up and do stuff - but given my own, uh, lived experience, I find it hard to avoid being skeptical.
A large part of me would really like to just lie down and do nothing almost all of the time. I’m happy to call that “laziness” in myself, but it does seem to be something that not everyone experiences as much. But it doesn’t help to give in to it (more than the occasional nap). The less I do, the worse I feel.
Same, but with my own chronic heart thing which has no cure and very invasive medical treatments, but responds very well to eating more salt and exercising. Which is easy to do when I feel great and really hard to do when I already feel like crap, because when I feel like crap moving around makes my symptoms worse, even though it will improve my symptoms if I do it every day for a month.
Though thee pregnancies I suffered a cumulative 24 months of nausea and vomiting. Omg it sucked!!!
Honestly, the best my brain and body feel is when I'm backpacking and hiking around 10 hours a day. We always forget we are animals and we are born to move.
I've had brain fog and have had close family members with depression, and it's not at all the same. Your mind feels weird, like someone flipped a switch, I couldn't write, I couldn't read, I couldn't concentrate on anything, this lasted for about three months, and then poof, it went away as suddenly as it started. I can't convey just how strange it was.
I haven't listened yet- I will at work this evening.
I would to, before I listen, state that my twin sister has Long Covid from her 2020 infection. She was infected in March of 2020 and suffered a cardiac arrest in May of 2020 (a defibrillator saved her) and an arterial dissection in her brainstem in July of 2020. She now needs infusions of infliximab to stand and walk. I saw with my own eyes what covid did to her and I have spoken to her doctors, who are highly qualified clinicians and specialists at UPENN in Philadelphia. She had a recent appointment with her neurologist who stated that long covid caused her myelin sheath to be "eaten through." They are concerned about another clot /dissection so they have scheduled another MRI. She has aphasia, which is getting worse, and balance issues, which are getting worse. She takes a slew of medications for her heart and for her brain. I know long covid is not psychogenic. I will probably skip the long covid section here as I have lost friends in real life who laugh about it and call it fake knowing what I went through with my sister. I couldn't bear to add this podcast to something else I used to enjoy and like that views my family's nightmare as just another NPC libtard SJW meme disease.
The podcast is not dismissive. And it’s more like the evidence is not as clear-cut as it’s being presented I’m with you that I definitely think long Covid is real but I also think that there’s a lot of diagnostic complications and complexities because it’s a long-term result of a new illness
With any real disorder, there are the grifters and the wannabees who come along for the ride. For example Lyme Disease is real, and some people have acute symptoms after a tick bite. But the many more people on Tik-Tok talking about "Long Term Lyme Disease" with a host of vague symptoms that don't show up in any medical tests--are suspect.
Some people had terrible reactions to Covid infection, that landed them in the hospital, and caused permenent damage. But many, many others are just blaming a host of problems--ones that nobody can objectively diagnose on anything other than patient reports--on "Long Covid".
We've seen this time and time again with things like "Electromagnetic Sensitivity" (which nobody has), Celiac disease, where for every real person with it (which bring along serious medical issues that can be confirmed with a small intestine biopsy!) there's 100,000 grifters going "gluten free", Lupus, etc. And then there are the fake Tourette's people on Tik-Tok! Nobody doubts there is real Tourette's.
I think both the Left and the Right are subject to these. Look at all the ads on Info Wars for "miracle cures".
Let me start with saying that I believe long covid is real, but it's not one disease. I know several people who have gotten it, though none of them have severe symptoms.
Kaiser Health News recently profiled three women with long covid. One of them had COVID and then ended up with depression. It's unclear how and infection with SARS-COV2 would trigger depression; her depression could have been triggered by the pandemic isolation. Even though she is a therapist, long covid is probably less stigmatized than depression triggered by pandemic restrictions. I know several people who will tear you a new one for saying that pandemic restrictions worsened your mental health.
When you read the other two patients' stories, there are puzzling omissions from their stories. One had a treatment plan with a cardiologist who then discharged her as a patient with no explanation. She then notes that she's seeing a cardiologist who still requires masks. The third one was a fitness instructor until covid and eventually ended up with breathing problems and ended up with brain damage -- though we don't know what the test was that determined she had brain damage and whether it was even valid. There's no mention of how severe their Covid was -- if you had a mild case, the likelihood is extremely small that you would end up with damage to your lungs or cardiac damage.
I don't think any of these patients are lying or griffin. However, it is possible that they have other illnesses and have been misdiagnosed with long covid. If it turns out the they have something like MS, they're going to get sicker because they're treating a disease they don't have instead of one they do have.
How is going gluten free grift? I have IBS and going GF has really helped me due to it being a soluable fiber diet. And not only did the popularity of the GF diet make GF foods better, it has made them more available and lower cost.
I think the prevalence of people eating it who do not have allergies does result in some people taking gluten intolerance less seriously which can be a real problem for people with severe allergies. A friend who has coeliac disease told that she couldn't eat gluten-free sandwiches from a mainstream UK cafe chain because they did not actually make them separately, which could make her ill. (This was a few years ago so, it may be different now.)
Finding restaurants that have a separate place to prepare GF entrees to avoid cross contamination hard, I would guess because it is expensive for a restaurant - more expensive than just using GF ingredients. Guaranteeing no cross-contamination is hard and also somewhat of a liability - if you say there is no cross contamination and someone with coeliac gets sick, it can result in bad reviews or even worse. So its always been hard to find restaurants that can do that. I have been GF since the mid 2000s and I can say it's so much easier to find restaurants that have GF entrees, label not just for GF but for vegans and vegetarians as well (my mom has dairy allergies so she chooses vegan because she knows it won't have dairy). So it seems to me a stretch to blame non-coeliac GF consumers for your friend not being able to eat a sandwich at a local cafe because of cross-contamination issues. Those are real issues for sure but they have always been issues due simply to the expense and logistics.
To say that a way of eating that helps multiple conditions is somehow trivializing one particular condition to me is absurd. Back when I started GF, I had one store in a 100 mile radius that sold food I and my son could eat and I had to order in bulk and buy a separate freezer to house it. Now I can get what we need at our local grocery store. Most of the time back then, I had to explain to people what gluten was. People seem to know a lot more now about gluten sensitivity - which is a misnomer: its not gluten in general but a specific gluten called gliadin - and coeliac disease.
Thanks for your reply. I am very interested to hear about the issues for restaurants in dealing with allergies as it is not an aspect I know much about.
I do think you slightly misunderstood the thrust of my comment though. Someone had referred to going gluten-free as 'grift'. So, it would seem that some people take gluten allergies less seriously because of a large number of people going gluten-free without strictly speaking needing to.
I think that that attitude does lead to some danger for people with serious allergies although, I certainly was not blaming anyone for my friend not being able to buy a sandwich in a mainstream cafe chain.
As you are GF you see the scale of good and bad effects tipped decidedly in favour of good and I am not arguing with that just mulling over other potential consequences.
People who have serious allergies are in some danger for sure, but I am skeptical its it's caused by people who claim to have those allergies when they do not. Coeliac disease requires that you ELIMINATE gliadin from your person - ingesting via your digestive system, skin and respiratory system. It's very difficult and its a high level above needing to be on a GF diet because you have a wheat allergy or IBS. And silent coeliacs have it especially hard because they don't have any discernable outward symptoms. It's not just that I see it as a net benefit that more people are seeking out a GF diet, others I know see it that way too, including those I know who have coeliac disease. But these are not data points we are talking about, they are anecdotal examples. You say that a "large number of people are going gf" - based on what data? This line of thought seems oversimplified and scapegoaty. If you took all of the so-called obnoxious people who claim a gluten sensitivity they don't have out of the equation, coeliac disease would still be really hard to live with because the bar of elimination is so high.
Calling it grift is hyperbole and inaccurate. Sure there are people obnoxiously making a big deal out of eating GF - there are people who do that about just about everything. That doesn't mean they are trying to swindle anyone.
I'm so sorry to hear of your sister's health struggles. The aftermath of infection-induced cardiac arrest and stroke is indeed life-changing and extremely serious.
I think that when most people are discussing the takes "long Covid," however, they are referring to more general symptoms of malaise, fatigue, etc that many people report after even mild viral infections. That is a very different scenario than the reality of severe long-term effects possible after a serious Covid (or other viral) infection that causes major complications requiring hospitalization, such as what your sister experienced. I would hope most people would not put your sister or her experiences in the former category.
People like Whitney Dafoe can end up not being able to physically eat (or speak, for a while, before making a slight improvement under Abilify) because they have a post-viral condition that is referred to as “Chronic Fatigue Syndrome”. I think it’s not as black and white as it seems...either hospitalised or not, severe or generalised. Scientists haven’t discovered everything yet. Someone can have severe symptoms, and there’s no known test to show what exactly is wrong...and they can be still be extremely ill.
Generalisation does make it hard to get treatment, but without medical focus—especially when assuming that generalised symptoms without showing positive test results indicates a psychogenic illness—it’s even harder to end that generalisation. Someone could complain of fatigue, malaise, and aches, be unable to physically get out of bed because of it, and still not have a better words than that.
While certainly not as severe as post viral strokes, do not dismiss the severity of post viral fatigue. It’s not like being tired after a long day, I’ve often felt as though I have had a full on flu for months.
I'm so sorry for your sister. My aunt appears to have developed POTS from COVID. She (a nurse, and her wife is also a nurse) just posted casually about every single classic POTS symptom as suddenly happening after she had COVID, and that she was frustrated by whatever the fuck was going on in her body.
I showed it to a friend who happens to have POTS (not self dxed, she had the full work up including tilt table and is doing so much better after finding the right blood pressure med), and she told me that on her support group at the hospital, there was a MASSIVE influx of new members who suddenly developed it after having COVID. Seems a viral infection is a common reason people develop this.
I honestly worry that the "long covid" concept creep is going to keep people like my aunt from getting treated for medical problems that we already have names for, and slow down research/treatments for people like your sister who are really suffering from something novel.
And my wife got COVID in late 2020, and then was perfectly fine for 16 months and then suddenly came down with POTS. Sometimes people jsut get sick. It is not all due to COVID.
It's absolutely possible it's coincidence, but the fact that my aunt developed these symptoms very shortly after getting sick, if not while she had active covid, is pretty suspicious imo.
Honestly. I have ME/CFS and listening to this is painful. I am just as critical of many Long COVID studies—because those studies are often uninformed of post-viral diseases and their histories, all the mass amount of research that’s already been conducted, as well as the various subsets of Long COVID.
The idea that such a large amount of people are experiencing mass trauma because of COVID and developing psychogenic diseases is just...humans have been through so much. Throughout history, and past epidemics have brought with them a wave of post-viral problems. People don’t get like this because they got laid off from their job. Not to mention Katie talking about The New Republic article? I’m sorry about your sister. I might write a longer comment about this later on.
>But the list includes things like fatigue and difficulty concentrating which are pretty common to experience due to stress or depression.
Or just to experience generally even outside of that. But if you are 20 and it is 2005, you probably just say "oh I have been feeling shitty this last month". And if you are 45 and it is 2005 you just blame it on getting old.
But if you are in the modern era, the internet has whole communities based upon "medicalizing" normal human variation, and convincing people they deserve to be bedridden because they felt 80% for a month instead of 100%.
I always suspect you stick 100 CFS suffers on a farm and make them farm or die, and 90% of them are miraculously cured.
You really don't understand the condition you're talking about. But I get that it is much more psychologically comfortable believe that people who are suffering from something that is intractable and poorly understood are just victims of themselves.
No one on the internet has ever told me that I deserve to be bedridden, and “feeling 80 percent for a north instead of 100 percent” is so far from what “CFS” is. Where on Earth is your idea of the demographics of “CFS” sufferers coming from?
So you haven't listened to the podcast, and you have absolutely no idea what they said, but you'll probably skip the part about long Covid because... wait... why?! How does that make any sense to you?
Because I am easily set off by hearing people dismiss it or read material that is dismissive of it, since the two best friends I've had since I was a teenager decided, even after knowing what happened to my sister, that they would be dismissive of it. Maybe that's dumb, but BaR is one of the few joys left I have in life and I don't want to end up adding it to the "people who think that the thing that destroyed my family is fake " pile. Even hearing material discussed that is dismissive of it makes my eyes water and my chest get tight. In 2020, as atms exploded through the night and smoke from the fires being set came through my window, my mother who was dying was moaning and screaming and I was getting calls from the hospital my sister was at. Anything dismissive of covid brings me right back there and I find it hard to breathe. Sorry if that's not like super cool anti woke enough for the comments here or whatever.
The heterodox and rationalist communities overlap so much. I remember hanging around a clique of rationalists for a good while and always being amused that everything was oh-so principled, unburdened by emotion, and objective… until some close to home topic came up. Everyone (even the most “rational” or “objective” people on these here BARpod threads) inevitably has something that makes them tick, that’s incredibly human. But I unfortunately think these communities have empathy problems, and that’s very apparent with Covid in general and the heterodox crowd.
I can’t read long covid skepticism. Mentioned above, it’s my villain origin story— so I try to not set off my rage. I’m sure we’re both at a point where we only want to hear developments towards treatment options. After four MRIs, a lumbar puncture, two echocardiograms, countless blood tests, etc. to rule out differentials, I don’t need convincing long covid is real and the cause of my health issues. And some skeptical articles (and podcast subscribers) won’t suddenly “snap me out of it,” either (I wish!).
True. People in this thread seriously are lacking empathy. Long COVID affects every single thing you do, and people cannot grasp the extent of that…I really wish I could just CBT myself out of ME/CFS (and comorbidities like POTS) but I’ve tried that and it’s made me much worse. It’s a nightmare.
I get it. It is so heartbreaking to have had people I loved and trusted question it, dear wonderful friends I thought I would have forever and who I thought loved my sister, too. I tear up just thinking about it. I am sorry for all of your health issues and I know that covid is a horrible illness. I don't understand why we can't yet admit that it is a bio weapon. Bio weapons do not kill 100 percent of targets. Their goal is terror and discord, which is what has happened with n-sars-cov2. I WANT to listen to the episode but I usually listen to these at work and I don't want to get triggered (I know it is a dumb word but I really do have clinically diagnosed ptsd from what happened to my family) while cleaning a house (have two clients today). Weirdly the only episode I ever listened not at work was the interview with the YA author whose contract was canceled, when I had omicron in early 2022. I consider that one of their best episodes.
For me, the skepticism is about the causality, not the health problems themselves.
I have no doubt you're having health problems and I would like to think that I'm empathetic.
But to say, definitively, that they're due to Covid? Maybe. I dunno. There's no agreed-upon explanation for what causes long Covid, or a test for it, etc. Just because nobody can come up with any other explanation for your health problems doesn't mean it's long Covid. People have been developing unexplained health problems since the dawn of time.
Statistically, some number of people will catch Covid every day. Statistically, some number of people will develop unexplained health problems every day. Thus, statistically, some people will develop unexplained health problems shortly after catching Covid every day. That doesn't mean Covid is the reason, even though I understand that such thinking is tempting.
you and your family have gone through some scary moments. EMDR might be helpful to process those images and experiences that you recall so that you don't have to re-live that trauma so often. avoiding triggers is one way that can work when we have that control, but healing at the source can help us move forward for those times when avoidance isn't an option.
I've thought about it. I have a counselor who is a veteran who specializes in ptsd. I see him today, later today. I guess we'll have a lot to talk about..
I am sorry to hear about your sister's experience. That's must have been awful for you as well.
For clarity, I think what you are saying is that Covid was for some people a serious illness and it and its associated symptoms has left your sister with permanent health damage. In a similar way, that someone who contracts encephalitis might suffer permanent brain damage leading to symptoms such as fatigue, irritability, impaired concentration, seizures, hearing loss, memory loss and blindness or in a more simple example, someone I knew who was left with permanent lung damage from a bronchial infection.
I think this is different from the phenomenon that is being discussed and referred to as 'long Covid'.
What I had understood 'long Covid' to mean was someone who according to all available medical evidence was apparently better and had apparently no physical damage e.g. no lung damage but, still feels unwell. In other words a post-viral syndrome.
Your sister's doctor referred to 'long covid' to mean something quite different to that so, perhaps mine and others' confusion in this conversation comes from the fact that the meaning of 'long covid' is not quite settled in the lexicon. I do think there is a benefit to discussing the available research on 'long Covid' as a post-viral syndrome which is distinct from 'long Covid' as permanent identifiable health damage.
I do hope your sister's health can be improved or stabilised.
I’m so sorry your sister and your family have experienced such a nightmare. It’s great she has a solid team of medical providers, but it’s also unfun to be in a position of learning along side the doctors with no truly helpful treatments or relief available.
I’ve been dealing with long Covid since summer of 2021. My case is far from the most extreme, and it’s still been hell. The fatigue and POTS forced me to fold my dog walking business and give up my favorite activities— the gym and going out dancing. On the good days, dismissal of long Covid is frustrating. On the bad, it sends me into a near homicidal, “ache like I ache” rage. So I’ll probably skip this segment, too.
I’m so sorry about your sister--what she is going through certainly sounds like a nightmare. Even though covid is becoming more endemic, it’s important to realize how novel of a virus it truly is and how little we know of it’s long term effects. My mother, who is in her early fifties, had covid a couple months ago and ever since then developed arthritis in one of her knees, a symptom that we are pretty sure is a result of long covid. I’m with you on that we should not dismiss serious concerns especially when it affects those we love.
I would love for there to be more good research into post-viral conditions but at this point I fear another national health research institute would be ensnared in the same politics and perverse incentives that have corrupted the others. (Also there's a paywall so I couldn't see exactly what Tufekci proposed).
I'll just leave my story with Long Covid here, it's now cleared, but I had symptoms for 2 years. Like many people I know with LC, I got infected early on in March 2020. The thing wiped me out, for people who have had Omicron only, Alpha was something else, I was very sick for 2 weeks, then it cleared, but I didn't fully recover until April 2022. I ended up in ER twice with chest pains. My hair fell off in large clumps. I had brain fog for about three months during 2020, I was literally stupid and couldn't read, write, or concentrate. I also had numbness and neuropathies. I was tired all of the time. My lungs hurt. I didn't want to be sick, I had been very healthy and active all of my life, I kept wishing it away, the doctors had no idea what was wrong with me, but I felt like crap all of the time. And then a combination of my third vaccine and third covid infection cured me. My guess? At least in my case Long Covid was caused by persistent viral load somewhere in my system, which kept triggering an auto-immune response. But honestly,I have no idea, but this crap is real, and the weird symptoms were so random that I thought that I was going crazy.
my sister had a remittance of symptoms after her second shot, for a few weeks, like you describe. Covid is so weird. I would never wish anyone ill with it but I wish some people would understand. I am sorry you went through this.
Thanks, I think that for a few people it was frustrating precisely because some of the symptoms sound completely made-up and random. "What do you mean the left side of your face is numb?" It was bizarre.
Thanks for sharing. Going on 3 years here, getting more functional but still dealing with issues. Funnily enough, tinnitus started last week. I agree with the viral persistence theory because my condition vastly improved when I started taking antivirals. (I'm still very unwell but nothing like the full year of being bedbound this started with.) Very glad to hear you're feeling better, hoping I get there too
I’m glad you’re doing so much better. I think we’ll find multiple causes of long Covid, but I definitely think the persistent viral load theory holds a lot of water. I did a bit better after getting vaxxed in that my heart slowed down a bit for a couple of months. I also seem better at sea level, I wonder about oxygenation issues as a culprit of mine.
The hair loss sucked, and I hope that’s over. I lost about half my hair over a 6 month period.
Ed Yong's idea that we should privilege self-diagnosed long covid sufferers' personal testimony over objective medical data seems like a special exception.
For example, does anyone think it's likely that Yong would apply the same standard to people who claim to have suffered injury from covid vaccines?
That's true, but Yong argues that when reports conflict with objective data, we should prefer the reports, so for example if reports of long COVID don't correlate with the likelihood that a person has COVID antibodies or if the alleged frequency of long COVID doesn't agree with changes in disability claims, Yong doesn't find those to be a cause for scepticism about the frequency of long COVID.
"To a degree, I sympathize with some of the skepticism regarding long COVID, because the condition challenges our typical sense of what counts as solid evidence. Blood tests, electronic medical records, and disability claims all feel like rigorous lines of objective data. Their limitations become obvious only when you consider what the average long-hauler goes through—and those details are often cast aside because they are “anecdotal” and, by implication, unreliable. This attitude is backwards: The patients’ stories are the ground truth against which all other data must be understood. Gaps between the data and the stories don’t immediately invalidate the latter; they just as likely show the holes in the former."
I will say that Ed Yong's book, An Immense World is quite good. Probably because it has almost nothing political in it. It's about animal perception and is excellent and detailed, and has content in it that I as a Biologist didn't know about.
Unfortunately when things get political, people get stupid. Ed is no exception. He has a bad case of internet poisoning like a lot of people.
He strikes me as one of those brilliant people who's experienced a slow decline in clear-thinking thanks to social media. I've watched it in a few different people, and it's always sad. My hope is that Elon manages to kill twitter. NYT had an (optimistically titled) article "What was twitter, anyway?" My dream is that it actually does die and lots of people snap out of it.
I would never have said this before last week, hell would have called myself a conspiracy theorist for saying it, but after recent revelations and Europe and the FDA pulling the original vaccines, I’ve had a bit of a change of heart.
I’m not anti-mRNA technology, it’s an amazing breakthrough, and I’m not saying anything against the current vaccines, but there might be another reason some of the vaccinated are feeling these long symptoms, specifically those who keep getting Pfizer boosters.
I’m a 30 year old male, healthy, had COVID alpha pre-vax and it felt like a mild hangover for half a day.
Later I got 2 doses of Pfizer and the 2nd shot crippled me. I mean that literally because at one point I actually collapsed. I didn’t feel like I would die but it was 2 days of absolute hell.
I’m going to actually “follow the science” here as new studies come out, and hell I could be totally wrong, I personally never had “long COVID symptoms”, but at this point it’s just hard to know what the truth is on a lot of things.
I’ve come to the conclusion to not dismiss anything, but instead to wait and see.
The FDA did not "pull the original vaccines". The vaccines are still FDA approved. They ended emergency use authorization and recommend getting newer bivalent vaccines. They did this because we have a better vaccine now and a lot of people just never got the second dose. Your comment is incredibly misleading.
That is my fault on the wording, all I ask is this, just keep an open mind. Dr. John Campbell’s analysis on these things is swaying me towards there being major problems with the original Pfizer vaccines in particular.
I’ll make a prediction, a concrete one, with let’s say, 85% certainty. In the next 5 months there will be very very convincing evidence that there was a lot more wrong with that original Pfizer vaccine than was originally stated.
Also, social media policies as they were at the time, I literally couldn’t say my own symptoms on social media when I had my adverse effects, granted I don’t use social media so guess it didn’t matter, but there was something wrong with that vaccine.
Not all mRNA vaccines, not the current vaccines, I have no clue about those, just the original Pfizer one.
Well, half of it is. The other half is basically the original vaccine but with the mRNA twiddled to match a more recent strain of the virus. Hence, "bivalent."
Do you mean that literally though, as in the 2nd half of the bivalent vaccine was made and is exactly, and I mean exactly, the same just with the mRNA changed on the 2nd half?
I’m happy to engage with those with a deeper understanding on the science of it, AI is more my personal field but I have have found recent developments regarding this subject troubling. One of many students for example that caught my eye is: https://pubmed.ncbi.nlm.nih.gov/36597886/
Yes, I do mean that literally. At least that's what Pfizer is claiming. Half the bivalent vaccine is exactly the same as the original vaccine. I obviously haven't confirmed this myself (I have no expertise with chemistry or biology and have no idea how one might confirm it) but I have no reason to doubt them.
The article about the free circulating spike proteins is interesting. I don't know how that would happen. My understanding is that the spike proteins that a cell generates just kind of "poke out of" the cell. I don't know how they would get free of the cell. But, okay. It seems like this problem affects very few people. To overgeneralize, only teenage boys get myocarditis from the vaccine, and very few of them, at that.
Look I’m no reflexively anti-Big Pharma leftie, but I’ve worked in major corporations before and I’ll say this, never take what any major corporation tells you as the gospel truth. Pfizer’s “legal issues” section on Wikipedia is a damn mile long, hell Moderna even sued them for literally the vaccine we’re talking about, which got a chuckle out of me.
Also, I’m going to withhold judgment on the exact age range on Myocarditis in males, and I’m not claiming I had Myocarditis, never went to the hospital, but I definitely had suddenly-collapse-on-the-floor syndrome.
I’m not on an anti-vaxx soapbox. I told you, I’m pro-mRNA vaccines, I’m “just asking questions” about literally one vaccine in particular. If I end up being wrong, I end up being wrong. I’m not saying the Illuminati/Bilderbergs/NWO is out to enslave us all, I just think there is more wrong with 1 vaccine in particular than was immediately told, beyond it ruining my weekend.
let's remember you started this conversation with a blatant lie about vaccines. you mentioned a doctor who has been debunked countless times for not understanding or intentionally misreading studies. you are just not coming off as a person seriously engaging with this
“A doctor who has been debunked”, ok man, I’m not lying about keeping an open mind. Precisely where can you point me to find the running feed taking down every bit of Campbell’s analysis? If Campbell is a fraud then damn, fool me twice as the saying goes, busg I’m not an idiot. I know how to read a scientific paper. Telling me someone is “debunked” in a comments thread doesn’t do it for me. Debunked by whom? Gimme some evidence here.
Hold on a minute, did I just get baited into arguing with a bot again? Your username looks like it’s from a cat running across a keyboard and you’re subscribed to no one. I really gotta stop taking the bait on this shit, whatever.
I got both vaccinated and Covid, nothingburgers all around. I'm just still furious they kept lying about what exactly the vaccine was supposed to do and how dangerous the virus actually was. I got duped.
I grew up in Michigan, and while it is true that there is no reason for anyone from Michigan to have a confederate flag, it is also true that that never seems to stop anyone...so maybe racist brother is not still in the aryan nation, just another Michigander with grandparents from Kentucky over-romanticizing the good old days of yore...
Every time I see one of those dumb things I want to try to get an ISIS flag and see how folks will react.
My wife is unamused every time we drive by the Stonewall Jackson memorial and I quip about it being the historical equivalent of putting up a shrine to Timothy McVeigh.
The impersonation thing just doesn’t seem like that big of a deal to me. Twitter was artificially given way more cultural cache than warranted in large part because of their arbitrary verification policy. It’s a distorted reality where the media could spin any narrative about any event with the veneer of bluecheck legitimacy. It’s a silly website, not a place where serious discourse happens. If this finally forces the media class to acknowledge that, it’s a (probably unintentional) win in my book.
Obviously the villain here is the FDA (as usual).
Also came here to write precisely this. Great reporting by Katie, but I thought at the end, Jessie had the right of it with his typical, "it's complicated" shrug.
That said, the FDA is clearly the problem here. Consider the incentive structure: you're Gilead: you have a successful drug approved for use in humans (no small feat in the pharmaceutical world). There has been a discovery about off-label use in felines; but if anything goes sideways on that, it threatens to undo the laborious and massively-expensive work you've done going through Phase III human trials, whereas the potential upside (financially) is likely marginal.
We all agree selling a drug to cure a fatal feline condition is the right thing to do. Absent the possible liability with the FDA, it's also the smart and profitable thing to do. Gilead isn't refusing to do this because of moustache-twisting; they're doing it because they stand to lose more than they stand to gain.
Came here to write exactly this. I understand the logic of "if complications occur with cats, someone needs to study them for humans too", but I'm struggling to see why this "someone" should be Gilead. (J&K have buried the lede here a bit, but the 2020 Atlantic article https://www.theatlantic.com/science/archive/2020/05/remdesivir-cats/611341/ spells this out in more detail.)
FDA Delenda Est
CDC Delenda Est
Oh, my gosh. One of the best episodes. Insane cat ladies, international smuggling, Newt Gingrich’s sister -- it has everything!
This is like Stephon on SNL.
i hate to say it but long covid just feels so “online.” with most diseases i can usually name at least a few people that have it that i know personally, but with long covid there’s nobody. it seems to be exclusively an anecdotal/self-diagnosed disease among white soys on twitter. and 99/100 times said person was already hyper-online, reclusive, quad vaxxed, etc etc. just feels like there’s almost personal stake having long-covid. i guess i also have personal stake in not having it, but isn’t that the same with any disease.
I commented above about this, but it is real. My sister developed it long before the shots even existed and she is anything but reclusive. She was infected in March 2020 and suffered a cardiac arrest in May 2020 and arterial dissection in her brainstem in July 2020. She needs infusions of infliximab every 8 weeks to stand and walk. She has aphasia. At her recent neurology appointment, the neurologist stated that her myelin sheath had been "eaten through" by covid. They are worried about another clot or dissection so scheduled another MRI. These are highly qualified specialists at UPENN hospital in Philadelphia (I know everyone calls it HUP now but it will always be UPENN to me).
I saw what covid and long covid did to her. It is personal because it is DEVASTATING to lose friendships when people do not understand and say hurtful and cruel things. My sister is not a Meme, she doesn't have a twitter account, she is a real person with a real illness that really disabled her. I was there the entire time.
So sorry. Your sister’s post viral symptoms are specific and terrifying, rather than vague or general. IIRC there is much evidence that this is a type of viral damage. The question is not about terrible cases like your sister’s (and I’m very very sorry she has been so horribly harmed) but about the ones more difficult to diagnose because the symptoms, like post viral fatigue, headaches, anxiety, could also be attributable to other causes than Covid. Those cases are really a mess, diagnostically, unlike, of course, your sister’s. I’m sorry anyone has said anything cruel about her condition--Covid has been so politicized, unfortunately.
Since it's such a vague, poorly-defined syndrome, it can essentially be both real and fake at the same time.
For your sister, apparently it is a real thing.
That doesn't mean it's a real thing for everybody who claims to have it. I know a guy who claims to have long Covid (when he remembers) because every few months he feels like maybe he's a bit more tired than he should be.
Very few people (nobody?) seems to be claiming that it literally doesn't exist for anybody.
This sounds like nonsense. Covid “ate through” her myelin sheath? Is it possible that its being worn down from Covid that then led to another syndrome? I don’t believe in long anything. Diseases can wear down your body for sure. I once had a pretty rough case of bronchitis that even with antibiotics wiped me out for over a month but that’s just kind of the disease. I don’t classify it as “long” bronchitis.
Well my sister is back in the hospital since Wed of this week for complications from long covid but I'll just call up her rheumatologist and her neurologist and say release her? It's all good, Moltar from the internet says it's nonsense. I have been with my sister the whole time I and I know what happened to her. It's easy to say you don't "believe" in something when it isn't happening to someone you love. Iong covid and covid are real I've seen what they have done to her.
Thanks I appreciate it. But for real, maybe she has something. I Just don't think it should be classified as "long covid." For instance, I sprained my ankle very badly about two years ago. That made it unable for me to run anymore for at least 6 months. Between that and working from home I eventually developed some very serious issues with my back muscles. I would never refer to that as "long sprained ankle." Even if the sprained ankle led to it, the back problems weren't a direct cause of the sprained ankle. It was many things that led up to it, and sprained ankles don't inherently cause back problems. I had some back muscle issues and I separate those from the sprained ankle. Just like I believe whatever your sister has may have been exacerbated or kickstarted by Covid, it could just be something genetic or something that would have happened anyways.
LMAO maybe he says
Dude she's in the fucking hospital waiting for an MRI please just stop. You win the hip cool anti woke hyper rational awards. And if you think your sprained ankle is the same as what I saw my sister go through from an infection with a BIOWEAPON (covid ) in 2020 then I don't know what to tell you.
You think you know more than the doctors at UPENN please call them up and take over her treatment and cover her medical expenses then I could use the break I'm exhausted.
The funniest thing is if you knew my views on things like elections and 9/11 and COVID & China/Russia you wouldn't think of me like some npc sheep who believes what the media says about covid lmao you would probably feel like a liberal compared to me LMAO. Ok back to work then going to visit my sister in the hospital then feed her cat. Good thing long covid is fake i can't wait to tell her doctors she is cured forever LMAO
I have long covid. I got sick partying in Vegas. I have one social media account (TikTok, which I got after getting sick). I wish I didn’t have a personal stake in any of this.
How do you know its “long covid.”
As mentioned elsewhere in the comments, no— I, of course, can’t say that it’s 100% Long Covid given it’s a diagnosis of exclusion. But I do have a robust medical team that determined it was absolutely the most likely explanation after many tests (MRIs, lumbar punctures, etc.) to rule out differentials.
I can also see you are not asking in good faith, given you “don’t believe in long anything.” I wish you continued health, so you may never have to understand. Cheers.
I know one woman who seems to have long Covid, and she’s 65ish and anti-vax; she barely even believed Covid existed before she got it. I’m confident she’s not faking because for her it really *is* embarrassing. I don’t think she would use the term “long Covid” to describe herself, and I don’t think she talks about it much, but she’s in the church choir with my dad and can’t really hide it. She’s just never fully recovered. Maybe it’s not so much ongoing viral issues, maybe it just scarred her lungs or something?
Could this just be your lack of knowledge? I have a post-viral disease. One time I was asked to talk about my experience at a small event, and afterwards, I had four different acquaintances tell me they had Long COVID. I wouldn’t have known otherwise.
>the reputational damage associated with admitting to it could last forever
i think this is mostly the problem right now. my previous comment was pretty ignorant. i don’t mean to completely dismiss long covid, i have no doubt there can be long-term effects as with any disease, but it feels far too blanketing to me. as Katie and Jesse mentioned, the symptoms are all very broad and vague, which is ripe for self-diagnosis.
at this point i’d say it’s almost a branding problem; calling it “long covid” immediately dismisses any and all conservative attention, and it becomes a wave to ride as the next big trend for “disease influencers” (gross). i stand by my statement that there are people who literally stand to have financial and social gain if they have or claim to have long covid. it goes beyond advocacy of the damage covid could have on someone’s system. the loudest people make it their personality or job, and they’re the ones seen as representatives, unfortunately. it’s a social credit in some circles. all of which only serve to delegitimize the disease, something that I’m partially doing I guess.
also this is just my theory and maybe i’m overstating it, but i really think it stems from the trend of self-id and privileged, normal people looking for a victimhood badge to pin to themselves. again, only serves to delegitimize those who really struggle.
What if we just stopped giving a shit about who is looking for a victim hood badge and who isn't? I have lupus. I've been to the ER alot over the past few years. In October, I'd been feeling off for a week or so and had a very high heart rate. I went to the ER and the doctor treated me like a neurotic little female drug seeker who wanted attention andmto collect diagnoses. Until the x ray found pneumonia (I aspirated on a chocolate chip cookie two weeks earlier-- a cat jumped on my lap and distracted me while eating it!). Did that doctor apologize ? Of course not. 2 years prior, I went to the ER 3 times for excruciating kidney pain and was treated similarly, bc I was there alone and I am a butch woman. The 4th hospital found stones and a kidney infection. Maybe if people cared less about "catching " fakers and more about helping sincere people, everyone would benefit.
I just posted about this in the thread. Doctors and nurses can suffer moral injury from dealing with scammers all the time. You can start to see everyone as a liar. It's hard to keep expecting honesty and respect and getting let down all the time. It's a constant struggle to try to give everyone the benefit of the doubt.
Imagine a job where you have to be very physical, great in a crisis, good with technical equipment, super quick thinking and high emotional intelligence. All while dealing with a nutty populace.
It's terrible that people like you have to suffer for it. What they did was wrong. I just think that all the scammers share some blame.
This is the thing with cops too. People are like "why do some cops treat everyone like dicks?" And the answer is a lot of cops, particularly in tough areas, end up dealing all day with people who will lie about anything, resist, fight, etc. Some people can stay positive in the face of that, many not.
It can undermine anyone's desire to give people the benefit of the doubt after a while.
I also think there’s an issue with media/experts claiming that like 11% of people who have had COVID have long COVID and the cases of people who have had a bad reaction to a disease (which happens to multiple diseases). Those are two very different things and then they’re constantly getting conflated (because it fits a certain narrative). Add in vague symptoms and it becomes very murky very fast.
Yes!
When my brother in law got engaged, My husband and I were concerned. His fiancee, Diana, had fibromyalgia. She had been in a gym accident, and was suing the gym because her injury caused her to get fibromyalgia. She got a financial settlement. After she got the money, she developed multi day migraines, chronic fatigue syndrome, and still had fibromyalgia.
Fast forward a couple years, and she became paralyzed while in a Lowes. During her hospitalization it became obvious that this was a conversion disorder; a hysterical illness.
The doctors said that confronting her with the diagnoses wouldn't do any good. So she went through a sham of an inpatient physical rehab stay.
The fake limp went away after a couple years. Right now she is having hypoglycemia.
All of her health problems make it so she can't work, though her kids are now independent young adults. So BIL continues to do all the work: working full time, shopping, cooking, cleaning, laundry and managing all the kids stuff.
I will bet you there is a 100% chance she is going to get long covid.
These people make it so hard for people who really do have long covid.
It's like ER doctors and nurses who have to deal with so many drug scammers that they are suspicious of everyone"s pain. The worst thing about the Boy Who Cried Wolf is that in real life it is other people who pay the price for the scammers.
But what if every person you personally know with a disease is a Diana? It's not a matter of emotional comfort to disbelieve a disease exists, it's pattern recognition.
When there is disease that all grifters claim to have, and there is no "smoking gun" test for it, it's asking for health care workers to just have faith. Which is fine- it's just really fucking hard.
The cat story was riveting. I appreciated hearing about something so perverted by nuance that I couldn’t get outraged by either side. Great work Katie. My husband could overhear and said “I love these guys.”
I bought GS from Robin. My cat got FIP in summer 2020. At the time I assumed there was some kind of mark-up despite the Atlantic article, but I had no idea they were making so much. I'm honestly not that bothered by the amount of mark-up per vial/pill, or even that they weren't transparent about it. GS saved my cat, and without FIP warriors, I wouldn't have had access to the specific form factor (small tablets) that I could actually get into my cat.
I'm much more bothered by the fact that some admins were essentially pocketing all that cash while others were doing all the actual work of triaging and helping with dosage etc. And that certain brands were being favored or even having adverse outcomes covered up. We did notice what appeared to be a difference in dosing between two batches at one point.
Also, I don't know if there was some separate drama back in 2020, but the Facebook group was completely shut down briefly and then a new one was created back then. No real explanation was given.
I think people who say they have long Covid have one of four things that can be difficult to differentiate:
1) Unrelated illness
2) Covid-related psychological distress resulting in psychosomatic illness
3) autoimmune disease triggered by covid
4) lingering direct Covid damage.
I have personally developed a (usually) post-viral autoimmune disorder without remembering anything about the illness, suggesting it was rather mild at the time. (It was glomerial nephritis and I fully recovered.) I think post-viral issues are more common than people realize. It does not mean if you are more tired now than two years ago you have one.
Autoimmune diseases are also very under-studied and many people with them find that the average PCP does not at all take a holistic approach to finding and treating the cause of their symptoms. This pushes people who otherwise were not "crunchy" into alternative medicine circles, which can also be very online. Lots of people with autoimmune disorders also report feeling a flare of symptoms after having Covid (including me!), which makes complete sense after an intense viral infection. People with chronic health problems also just might need 3-6 months to be completely back to normal, but that doesn't necessarily mean it's long Covid.
Yeah I got long lasting post-viral issues after a bad dose of COVID-then-pneumonia.... and I figured it wasn't something unique because I had similar after a bad case of glandular fever a while back (including the nephritis that you had)
Long COVID is real and people with it deserve treatment. But the Long COVID community has a quack problem. Dana Parish wrote a book about chronic Lyme disease and claims that Lyme disease causes MS (almost everyone with MS is infected with EBV). She's also one of those Zero Covid people. Diana Zicklin Berrent has claimed that Long COVID is like Adrenal Fatigue, which doesn't exist. People with Long Covid need good science so that they have effective treatments. It's also important for research to recognize that Long Covid isn't just one thing. People with the post-viral fatigue syndrome should not be treated with exercise. People who ended up with damage to their lungs and or hearts due to a severe case of COVID will probably benefit from exercise to increase their lung and heart strength. And people who have a lingering cough will probably get better with time. That also means that some people who think they have Long COVID may have something else. Some may have MS and some may have Lupus and they will need appropriate treatment for their actual disease. We don't want people finding out that the Long Covid they've spent 3 years being treated for is actually Lupus and in that time they've lost half of their kidney function. There was an article in a medical journal about two cases of advanced lung cancer that had been misdiagnosed as Long COVID. People are going to die from errors like that.
A good medical journalist would make sure that the patients they're reporting on have tested positive for SARS-COV2 either by PCR or antibodies. They should realize that patients are the experts in their symptoms but that doesn't mean that the patients know the cause of their symptoms. Even doctors often don't know the cause of their symptoms until they've done tests and they can misdiagnose people. I get the impression that Ed Yong has let his compassion for patients overwhelm his journalistic instincts. If you're a medical journalist and some of the activists for a particular condition have a history of advocating for fake diseases, you should report on that. It's also important to report on the range of scientific evidence on that condition, rather than just the science that backs the claims of the patients you've interviewed. He also seems to have fallen for the idea that it's somehow disrespectful to people with Long Covid to drop covid precautions when nearly everyone has some immunity. The good news is that infections with SARS-COV2 are now less likely to result in Long COVID, probably because nearly everyone has immunity, but he seems skeptical of that finding. THat's a bit concerning
This is exactly it. I’m sympathetic to people who are suffering, whatever the cause. But it isn’t doing anyone any favors to blame a specific cause without strong evidence. That does put patients and doctors in a difficult situation when no specific cause is evident, but that’s always been the case. “Sometimes everyone feels like crap for reasons we don’t fully understand” is not very satisfying but it seems to be true.
I have never enjoyed reading a podcast description more! Off to listen.
I loved it, too!
I've been skeptical of Ed Yong's long COVID reporting ever since his article about brain fog and long COVID: https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
His asserted that:
"Brain fog isn’t like a hangover or depression. It’s a disorder of executive function that makes basic cognitive tasks absurdly hard" and gave an example of a woman who "“runs into a mental wall” when faced with tasks as simple as filling out forms. Her memory, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult."
The woman might very well have long COVID, but Ed Yong's outright dismissal of the idea that brain fog could be like symptoms of depression really got to me because the description of her brainfog felt almost exactly like some of the problems I had because of severe depression. During my worst periods of depression, my executive functioning was sometimes even worse than that. That Yong wasn't willing to actually engage with similarities between brain fog and depression and just dismissed the idea they could be similar or the same bothered me enough that I actually emailed him about it. I never heard back.
I have depression, which is well controlled with medication.
I got Covid at the end of last summer, and my dad died a few days into my illness. I spent the next five months with brain fog, exhaustion, terrible executive functioning, and poor memory.
Did I have long Covid? No! I was fucking depressed! I waited, and it went away.
I have a lot of joint pains in my ankle now. Do I have long Covid? No! I'm fucking 55 years old and joints hurt at this age. I am waiting, and it will go away.
I've had times where I've spent hours of the day in bed or on the couch (for instance, when dealing with a ton of morning sickness) and it makes your body HURT. It gives you migraines. Your body is not designed to lay and sit all day, it's really not. I'm not surprised that the same people who are experiencing severe fatigue are experiencing muscle and nerve pain.
And I've definitely also had the "tincture of time" experience. But I do wish doctors were more explicit about saying "I want to see if this goes away with time, stays the same, or gets worse, because the treatments I have are pretty invasive and could even make things worse for you in other ways." A lot of them think that in their head but don't communicate it to patients, figuring that they'll come back if it doesn't go away. I think it doesn't foster a good relationship.
I’ve seen what appears to be a negative spiral of inactivity and pain/fatigue in some people I know who are chronic illness sufferers (of various kinds). I’m not them, so who knows, but my own experience with depression and (separately, at times) fatigue is that the painful process of getting up and doing things IS the remedy to being unable to get up and do things. Which is really inconvenient and uncomfortable. And obviously it can’t be the case for everyone - some people surely do have conditions that require them not to get up and do stuff - but given my own, uh, lived experience, I find it hard to avoid being skeptical.
A large part of me would really like to just lie down and do nothing almost all of the time. I’m happy to call that “laziness” in myself, but it does seem to be something that not everyone experiences as much. But it doesn’t help to give in to it (more than the occasional nap). The less I do, the worse I feel.
Same, but with my own chronic heart thing which has no cure and very invasive medical treatments, but responds very well to eating more salt and exercising. Which is easy to do when I feel great and really hard to do when I already feel like crap, because when I feel like crap moving around makes my symptoms worse, even though it will improve my symptoms if I do it every day for a month.
Though thee pregnancies I suffered a cumulative 24 months of nausea and vomiting. Omg it sucked!!!
Honestly, the best my brain and body feel is when I'm backpacking and hiking around 10 hours a day. We always forget we are animals and we are born to move.
I've had brain fog and have had close family members with depression, and it's not at all the same. Your mind feels weird, like someone flipped a switch, I couldn't write, I couldn't read, I couldn't concentrate on anything, this lasted for about three months, and then poof, it went away as suddenly as it started. I can't convey just how strange it was.
I haven't listened yet- I will at work this evening.
I would to, before I listen, state that my twin sister has Long Covid from her 2020 infection. She was infected in March of 2020 and suffered a cardiac arrest in May of 2020 (a defibrillator saved her) and an arterial dissection in her brainstem in July of 2020. She now needs infusions of infliximab to stand and walk. I saw with my own eyes what covid did to her and I have spoken to her doctors, who are highly qualified clinicians and specialists at UPENN in Philadelphia. She had a recent appointment with her neurologist who stated that long covid caused her myelin sheath to be "eaten through." They are concerned about another clot /dissection so they have scheduled another MRI. She has aphasia, which is getting worse, and balance issues, which are getting worse. She takes a slew of medications for her heart and for her brain. I know long covid is not psychogenic. I will probably skip the long covid section here as I have lost friends in real life who laugh about it and call it fake knowing what I went through with my sister. I couldn't bear to add this podcast to something else I used to enjoy and like that views my family's nightmare as just another NPC libtard SJW meme disease.
The podcast is not dismissive. And it’s more like the evidence is not as clear-cut as it’s being presented I’m with you that I definitely think long Covid is real but I also think that there’s a lot of diagnostic complications and complexities because it’s a long-term result of a new illness
With any real disorder, there are the grifters and the wannabees who come along for the ride. For example Lyme Disease is real, and some people have acute symptoms after a tick bite. But the many more people on Tik-Tok talking about "Long Term Lyme Disease" with a host of vague symptoms that don't show up in any medical tests--are suspect.
Some people had terrible reactions to Covid infection, that landed them in the hospital, and caused permenent damage. But many, many others are just blaming a host of problems--ones that nobody can objectively diagnose on anything other than patient reports--on "Long Covid".
We've seen this time and time again with things like "Electromagnetic Sensitivity" (which nobody has), Celiac disease, where for every real person with it (which bring along serious medical issues that can be confirmed with a small intestine biopsy!) there's 100,000 grifters going "gluten free", Lupus, etc. And then there are the fake Tourette's people on Tik-Tok! Nobody doubts there is real Tourette's.
I think both the Left and the Right are subject to these. Look at all the ads on Info Wars for "miracle cures".
Let me start with saying that I believe long covid is real, but it's not one disease. I know several people who have gotten it, though none of them have severe symptoms.
Kaiser Health News recently profiled three women with long covid. One of them had COVID and then ended up with depression. It's unclear how and infection with SARS-COV2 would trigger depression; her depression could have been triggered by the pandemic isolation. Even though she is a therapist, long covid is probably less stigmatized than depression triggered by pandemic restrictions. I know several people who will tear you a new one for saying that pandemic restrictions worsened your mental health.
When you read the other two patients' stories, there are puzzling omissions from their stories. One had a treatment plan with a cardiologist who then discharged her as a patient with no explanation. She then notes that she's seeing a cardiologist who still requires masks. The third one was a fitness instructor until covid and eventually ended up with breathing problems and ended up with brain damage -- though we don't know what the test was that determined she had brain damage and whether it was even valid. There's no mention of how severe their Covid was -- if you had a mild case, the likelihood is extremely small that you would end up with damage to your lungs or cardiac damage.
I don't think any of these patients are lying or griffin. However, it is possible that they have other illnesses and have been misdiagnosed with long covid. If it turns out the they have something like MS, they're going to get sicker because they're treating a disease they don't have instead of one they do have.
Here's the article.
https://kffhealthnews.org/news/article/long-covid-patients-end-of-pandemic-emergency/
"She then notes that she's seeing a cardiologist who still requires masks." Around here all medical facilities still require masks!
How is going gluten free grift? I have IBS and going GF has really helped me due to it being a soluable fiber diet. And not only did the popularity of the GF diet make GF foods better, it has made them more available and lower cost.
I think the prevalence of people eating it who do not have allergies does result in some people taking gluten intolerance less seriously which can be a real problem for people with severe allergies. A friend who has coeliac disease told that she couldn't eat gluten-free sandwiches from a mainstream UK cafe chain because they did not actually make them separately, which could make her ill. (This was a few years ago so, it may be different now.)
Finding restaurants that have a separate place to prepare GF entrees to avoid cross contamination hard, I would guess because it is expensive for a restaurant - more expensive than just using GF ingredients. Guaranteeing no cross-contamination is hard and also somewhat of a liability - if you say there is no cross contamination and someone with coeliac gets sick, it can result in bad reviews or even worse. So its always been hard to find restaurants that can do that. I have been GF since the mid 2000s and I can say it's so much easier to find restaurants that have GF entrees, label not just for GF but for vegans and vegetarians as well (my mom has dairy allergies so she chooses vegan because she knows it won't have dairy). So it seems to me a stretch to blame non-coeliac GF consumers for your friend not being able to eat a sandwich at a local cafe because of cross-contamination issues. Those are real issues for sure but they have always been issues due simply to the expense and logistics.
To say that a way of eating that helps multiple conditions is somehow trivializing one particular condition to me is absurd. Back when I started GF, I had one store in a 100 mile radius that sold food I and my son could eat and I had to order in bulk and buy a separate freezer to house it. Now I can get what we need at our local grocery store. Most of the time back then, I had to explain to people what gluten was. People seem to know a lot more now about gluten sensitivity - which is a misnomer: its not gluten in general but a specific gluten called gliadin - and coeliac disease.
Thanks for your reply. I am very interested to hear about the issues for restaurants in dealing with allergies as it is not an aspect I know much about.
I do think you slightly misunderstood the thrust of my comment though. Someone had referred to going gluten-free as 'grift'. So, it would seem that some people take gluten allergies less seriously because of a large number of people going gluten-free without strictly speaking needing to.
I think that that attitude does lead to some danger for people with serious allergies although, I certainly was not blaming anyone for my friend not being able to buy a sandwich in a mainstream cafe chain.
As you are GF you see the scale of good and bad effects tipped decidedly in favour of good and I am not arguing with that just mulling over other potential consequences.
People who have serious allergies are in some danger for sure, but I am skeptical its it's caused by people who claim to have those allergies when they do not. Coeliac disease requires that you ELIMINATE gliadin from your person - ingesting via your digestive system, skin and respiratory system. It's very difficult and its a high level above needing to be on a GF diet because you have a wheat allergy or IBS. And silent coeliacs have it especially hard because they don't have any discernable outward symptoms. It's not just that I see it as a net benefit that more people are seeking out a GF diet, others I know see it that way too, including those I know who have coeliac disease. But these are not data points we are talking about, they are anecdotal examples. You say that a "large number of people are going gf" - based on what data? This line of thought seems oversimplified and scapegoaty. If you took all of the so-called obnoxious people who claim a gluten sensitivity they don't have out of the equation, coeliac disease would still be really hard to live with because the bar of elimination is so high.
Calling it grift is hyperbole and inaccurate. Sure there are people obnoxiously making a big deal out of eating GF - there are people who do that about just about everything. That doesn't mean they are trying to swindle anyone.
No thanks, I'll leave that to you since you sound just as hysterical as they do.
Multiple things can be true. It can be true that:
*COVID can cause some sort of lasting harm
*Different COVID variants behave radically differently
*Different people react radically differently to COVID
*There is a significant number of people who will fake symptoms for personal gain
*Psychosomatic illness is common
*Social contagion is a thing
None of these things, if true, excludes any of the others.
I'm so sorry to hear of your sister's health struggles. The aftermath of infection-induced cardiac arrest and stroke is indeed life-changing and extremely serious.
I think that when most people are discussing the takes "long Covid," however, they are referring to more general symptoms of malaise, fatigue, etc that many people report after even mild viral infections. That is a very different scenario than the reality of severe long-term effects possible after a serious Covid (or other viral) infection that causes major complications requiring hospitalization, such as what your sister experienced. I would hope most people would not put your sister or her experiences in the former category.
People like Whitney Dafoe can end up not being able to physically eat (or speak, for a while, before making a slight improvement under Abilify) because they have a post-viral condition that is referred to as “Chronic Fatigue Syndrome”. I think it’s not as black and white as it seems...either hospitalised or not, severe or generalised. Scientists haven’t discovered everything yet. Someone can have severe symptoms, and there’s no known test to show what exactly is wrong...and they can be still be extremely ill.
Generalisation does make it hard to get treatment, but without medical focus—especially when assuming that generalised symptoms without showing positive test results indicates a psychogenic illness—it’s even harder to end that generalisation. Someone could complain of fatigue, malaise, and aches, be unable to physically get out of bed because of it, and still not have a better words than that.
I tf
While certainly not as severe as post viral strokes, do not dismiss the severity of post viral fatigue. It’s not like being tired after a long day, I’ve often felt as though I have had a full on flu for months.
I'm so sorry for your sister. My aunt appears to have developed POTS from COVID. She (a nurse, and her wife is also a nurse) just posted casually about every single classic POTS symptom as suddenly happening after she had COVID, and that she was frustrated by whatever the fuck was going on in her body.
I showed it to a friend who happens to have POTS (not self dxed, she had the full work up including tilt table and is doing so much better after finding the right blood pressure med), and she told me that on her support group at the hospital, there was a MASSIVE influx of new members who suddenly developed it after having COVID. Seems a viral infection is a common reason people develop this.
I honestly worry that the "long covid" concept creep is going to keep people like my aunt from getting treated for medical problems that we already have names for, and slow down research/treatments for people like your sister who are really suffering from something novel.
And my wife got COVID in late 2020, and then was perfectly fine for 16 months and then suddenly came down with POTS. Sometimes people jsut get sick. It is not all due to COVID.
It's absolutely possible it's coincidence, but the fact that my aunt developed these symptoms very shortly after getting sick, if not while she had active covid, is pretty suspicious imo.
Honestly. I have ME/CFS and listening to this is painful. I am just as critical of many Long COVID studies—because those studies are often uninformed of post-viral diseases and their histories, all the mass amount of research that’s already been conducted, as well as the various subsets of Long COVID.
The idea that such a large amount of people are experiencing mass trauma because of COVID and developing psychogenic diseases is just...humans have been through so much. Throughout history, and past epidemics have brought with them a wave of post-viral problems. People don’t get like this because they got laid off from their job. Not to mention Katie talking about The New Republic article? I’m sorry about your sister. I might write a longer comment about this later on.
>But the list includes things like fatigue and difficulty concentrating which are pretty common to experience due to stress or depression.
Or just to experience generally even outside of that. But if you are 20 and it is 2005, you probably just say "oh I have been feeling shitty this last month". And if you are 45 and it is 2005 you just blame it on getting old.
But if you are in the modern era, the internet has whole communities based upon "medicalizing" normal human variation, and convincing people they deserve to be bedridden because they felt 80% for a month instead of 100%.
I always suspect you stick 100 CFS suffers on a farm and make them farm or die, and 90% of them are miraculously cured.
You really don't understand the condition you're talking about. But I get that it is much more psychologically comfortable believe that people who are suffering from something that is intractable and poorly understood are just victims of themselves.
I would be a lot more convinced by CFS if it wasn’t so socially transmissible and wasn’t clustered so strongly among lazy people.
This sentiment reeks of personal bias and lack of data, in addition to the psychological mechanism I described in my previous comment.
No one on the internet has ever told me that I deserve to be bedridden, and “feeling 80 percent for a north instead of 100 percent” is so far from what “CFS” is. Where on Earth is your idea of the demographics of “CFS” sufferers coming from?
Oh gosh. I cringed at that so much...that’s not what ME/CFS is 😭 especially when the episode focussed on a condition where ME/CFS is a major subset.
Did you write a note somewhere about this? I still don’t know how Substack works 😂
So you haven't listened to the podcast, and you have absolutely no idea what they said, but you'll probably skip the part about long Covid because... wait... why?! How does that make any sense to you?
Because I am easily set off by hearing people dismiss it or read material that is dismissive of it, since the two best friends I've had since I was a teenager decided, even after knowing what happened to my sister, that they would be dismissive of it. Maybe that's dumb, but BaR is one of the few joys left I have in life and I don't want to end up adding it to the "people who think that the thing that destroyed my family is fake " pile. Even hearing material discussed that is dismissive of it makes my eyes water and my chest get tight. In 2020, as atms exploded through the night and smoke from the fires being set came through my window, my mother who was dying was moaning and screaming and I was getting calls from the hospital my sister was at. Anything dismissive of covid brings me right back there and I find it hard to breathe. Sorry if that's not like super cool anti woke enough for the comments here or whatever.
The heterodox and rationalist communities overlap so much. I remember hanging around a clique of rationalists for a good while and always being amused that everything was oh-so principled, unburdened by emotion, and objective… until some close to home topic came up. Everyone (even the most “rational” or “objective” people on these here BARpod threads) inevitably has something that makes them tick, that’s incredibly human. But I unfortunately think these communities have empathy problems, and that’s very apparent with Covid in general and the heterodox crowd.
I can’t read long covid skepticism. Mentioned above, it’s my villain origin story— so I try to not set off my rage. I’m sure we’re both at a point where we only want to hear developments towards treatment options. After four MRIs, a lumbar puncture, two echocardiograms, countless blood tests, etc. to rule out differentials, I don’t need convincing long covid is real and the cause of my health issues. And some skeptical articles (and podcast subscribers) won’t suddenly “snap me out of it,” either (I wish!).
True. People in this thread seriously are lacking empathy. Long COVID affects every single thing you do, and people cannot grasp the extent of that…I really wish I could just CBT myself out of ME/CFS (and comorbidities like POTS) but I’ve tried that and it’s made me much worse. It’s a nightmare.
I get it. It is so heartbreaking to have had people I loved and trusted question it, dear wonderful friends I thought I would have forever and who I thought loved my sister, too. I tear up just thinking about it. I am sorry for all of your health issues and I know that covid is a horrible illness. I don't understand why we can't yet admit that it is a bio weapon. Bio weapons do not kill 100 percent of targets. Their goal is terror and discord, which is what has happened with n-sars-cov2. I WANT to listen to the episode but I usually listen to these at work and I don't want to get triggered (I know it is a dumb word but I really do have clinically diagnosed ptsd from what happened to my family) while cleaning a house (have two clients today). Weirdly the only episode I ever listened not at work was the interview with the YA author whose contract was canceled, when I had omicron in early 2022. I consider that one of their best episodes.
For me, the skepticism is about the causality, not the health problems themselves.
I have no doubt you're having health problems and I would like to think that I'm empathetic.
But to say, definitively, that they're due to Covid? Maybe. I dunno. There's no agreed-upon explanation for what causes long Covid, or a test for it, etc. Just because nobody can come up with any other explanation for your health problems doesn't mean it's long Covid. People have been developing unexplained health problems since the dawn of time.
Statistically, some number of people will catch Covid every day. Statistically, some number of people will develop unexplained health problems every day. Thus, statistically, some people will develop unexplained health problems shortly after catching Covid every day. That doesn't mean Covid is the reason, even though I understand that such thinking is tempting.
you and your family have gone through some scary moments. EMDR might be helpful to process those images and experiences that you recall so that you don't have to re-live that trauma so often. avoiding triggers is one way that can work when we have that control, but healing at the source can help us move forward for those times when avoidance isn't an option.
I've thought about it. I have a counselor who is a veteran who specializes in ptsd. I see him today, later today. I guess we'll have a lot to talk about..
I am sorry to hear about your sister's experience. That's must have been awful for you as well.
For clarity, I think what you are saying is that Covid was for some people a serious illness and it and its associated symptoms has left your sister with permanent health damage. In a similar way, that someone who contracts encephalitis might suffer permanent brain damage leading to symptoms such as fatigue, irritability, impaired concentration, seizures, hearing loss, memory loss and blindness or in a more simple example, someone I knew who was left with permanent lung damage from a bronchial infection.
I think this is different from the phenomenon that is being discussed and referred to as 'long Covid'.
What I had understood 'long Covid' to mean was someone who according to all available medical evidence was apparently better and had apparently no physical damage e.g. no lung damage but, still feels unwell. In other words a post-viral syndrome.
Your sister's doctor referred to 'long covid' to mean something quite different to that so, perhaps mine and others' confusion in this conversation comes from the fact that the meaning of 'long covid' is not quite settled in the lexicon. I do think there is a benefit to discussing the available research on 'long Covid' as a post-viral syndrome which is distinct from 'long Covid' as permanent identifiable health damage.
I do hope your sister's health can be improved or stabilised.
I’m so sorry your sister and your family have experienced such a nightmare. It’s great she has a solid team of medical providers, but it’s also unfun to be in a position of learning along side the doctors with no truly helpful treatments or relief available.
I’ve been dealing with long Covid since summer of 2021. My case is far from the most extreme, and it’s still been hell. The fatigue and POTS forced me to fold my dog walking business and give up my favorite activities— the gym and going out dancing. On the good days, dismissal of long Covid is frustrating. On the bad, it sends me into a near homicidal, “ache like I ache” rage. So I’ll probably skip this segment, too.
I’m so sorry about your sister--what she is going through certainly sounds like a nightmare. Even though covid is becoming more endemic, it’s important to realize how novel of a virus it truly is and how little we know of it’s long term effects. My mother, who is in her early fifties, had covid a couple months ago and ever since then developed arthritis in one of her knees, a symptom that we are pretty sure is a result of long covid. I’m with you on that we should not dismiss serious concerns especially when it affects those we love.
I would love for there to be more good research into post-viral conditions but at this point I fear another national health research institute would be ensnared in the same politics and perverse incentives that have corrupted the others. (Also there's a paywall so I couldn't see exactly what Tufekci proposed).
I'll just leave my story with Long Covid here, it's now cleared, but I had symptoms for 2 years. Like many people I know with LC, I got infected early on in March 2020. The thing wiped me out, for people who have had Omicron only, Alpha was something else, I was very sick for 2 weeks, then it cleared, but I didn't fully recover until April 2022. I ended up in ER twice with chest pains. My hair fell off in large clumps. I had brain fog for about three months during 2020, I was literally stupid and couldn't read, write, or concentrate. I also had numbness and neuropathies. I was tired all of the time. My lungs hurt. I didn't want to be sick, I had been very healthy and active all of my life, I kept wishing it away, the doctors had no idea what was wrong with me, but I felt like crap all of the time. And then a combination of my third vaccine and third covid infection cured me. My guess? At least in my case Long Covid was caused by persistent viral load somewhere in my system, which kept triggering an auto-immune response. But honestly,I have no idea, but this crap is real, and the weird symptoms were so random that I thought that I was going crazy.
my sister had a remittance of symptoms after her second shot, for a few weeks, like you describe. Covid is so weird. I would never wish anyone ill with it but I wish some people would understand. I am sorry you went through this.
Thanks, I think that for a few people it was frustrating precisely because some of the symptoms sound completely made-up and random. "What do you mean the left side of your face is numb?" It was bizarre.
Thanks for sharing. Going on 3 years here, getting more functional but still dealing with issues. Funnily enough, tinnitus started last week. I agree with the viral persistence theory because my condition vastly improved when I started taking antivirals. (I'm still very unwell but nothing like the full year of being bedbound this started with.) Very glad to hear you're feeling better, hoping I get there too
I’m glad you’re doing so much better. I think we’ll find multiple causes of long Covid, but I definitely think the persistent viral load theory holds a lot of water. I did a bit better after getting vaxxed in that my heart slowed down a bit for a couple of months. I also seem better at sea level, I wonder about oxygenation issues as a culprit of mine.
The hair loss sucked, and I hope that’s over. I lost about half my hair over a 6 month period.
Ed Yong's idea that we should privilege self-diagnosed long covid sufferers' personal testimony over objective medical data seems like a special exception.
For example, does anyone think it's likely that Yong would apply the same standard to people who claim to have suffered injury from covid vaccines?
That's true, but Yong argues that when reports conflict with objective data, we should prefer the reports, so for example if reports of long COVID don't correlate with the likelihood that a person has COVID antibodies or if the alleged frequency of long COVID doesn't agree with changes in disability claims, Yong doesn't find those to be a cause for scepticism about the frequency of long COVID.
"To a degree, I sympathize with some of the skepticism regarding long COVID, because the condition challenges our typical sense of what counts as solid evidence. Blood tests, electronic medical records, and disability claims all feel like rigorous lines of objective data. Their limitations become obvious only when you consider what the average long-hauler goes through—and those details are often cast aside because they are “anecdotal” and, by implication, unreliable. This attitude is backwards: The patients’ stories are the ground truth against which all other data must be understood. Gaps between the data and the stories don’t immediately invalidate the latter; they just as likely show the holes in the former."
I will say that Ed Yong's book, An Immense World is quite good. Probably because it has almost nothing political in it. It's about animal perception and is excellent and detailed, and has content in it that I as a Biologist didn't know about.
Unfortunately when things get political, people get stupid. Ed is no exception. He has a bad case of internet poisoning like a lot of people.
He strikes me as one of those brilliant people who's experienced a slow decline in clear-thinking thanks to social media. I've watched it in a few different people, and it's always sad. My hope is that Elon manages to kill twitter. NYT had an (optimistically titled) article "What was twitter, anyway?" My dream is that it actually does die and lots of people snap out of it.
I would never have said this before last week, hell would have called myself a conspiracy theorist for saying it, but after recent revelations and Europe and the FDA pulling the original vaccines, I’ve had a bit of a change of heart.
I’m not anti-mRNA technology, it’s an amazing breakthrough, and I’m not saying anything against the current vaccines, but there might be another reason some of the vaccinated are feeling these long symptoms, specifically those who keep getting Pfizer boosters.
I’m a 30 year old male, healthy, had COVID alpha pre-vax and it felt like a mild hangover for half a day.
Later I got 2 doses of Pfizer and the 2nd shot crippled me. I mean that literally because at one point I actually collapsed. I didn’t feel like I would die but it was 2 days of absolute hell.
I’m going to actually “follow the science” here as new studies come out, and hell I could be totally wrong, I personally never had “long COVID symptoms”, but at this point it’s just hard to know what the truth is on a lot of things.
I’ve come to the conclusion to not dismiss anything, but instead to wait and see.
The FDA did not "pull the original vaccines". The vaccines are still FDA approved. They ended emergency use authorization and recommend getting newer bivalent vaccines. They did this because we have a better vaccine now and a lot of people just never got the second dose. Your comment is incredibly misleading.
That is my fault on the wording, all I ask is this, just keep an open mind. Dr. John Campbell’s analysis on these things is swaying me towards there being major problems with the original Pfizer vaccines in particular.
I’ll make a prediction, a concrete one, with let’s say, 85% certainty. In the next 5 months there will be very very convincing evidence that there was a lot more wrong with that original Pfizer vaccine than was originally stated.
Also, social media policies as they were at the time, I literally couldn’t say my own symptoms on social media when I had my adverse effects, granted I don’t use social media so guess it didn’t matter, but there was something wrong with that vaccine.
Not all mRNA vaccines, not the current vaccines, I have no clue about those, just the original Pfizer one.
Wait, what?
The new vaccine IS the original vaccine.
Well, half of it is. The other half is basically the original vaccine but with the mRNA twiddled to match a more recent strain of the virus. Hence, "bivalent."
Do you mean that literally though, as in the 2nd half of the bivalent vaccine was made and is exactly, and I mean exactly, the same just with the mRNA changed on the 2nd half?
I’m happy to engage with those with a deeper understanding on the science of it, AI is more my personal field but I have have found recent developments regarding this subject troubling. One of many students for example that caught my eye is: https://pubmed.ncbi.nlm.nih.gov/36597886/
Yes, I do mean that literally. At least that's what Pfizer is claiming. Half the bivalent vaccine is exactly the same as the original vaccine. I obviously haven't confirmed this myself (I have no expertise with chemistry or biology and have no idea how one might confirm it) but I have no reason to doubt them.
The article about the free circulating spike proteins is interesting. I don't know how that would happen. My understanding is that the spike proteins that a cell generates just kind of "poke out of" the cell. I don't know how they would get free of the cell. But, okay. It seems like this problem affects very few people. To overgeneralize, only teenage boys get myocarditis from the vaccine, and very few of them, at that.
Look I’m no reflexively anti-Big Pharma leftie, but I’ve worked in major corporations before and I’ll say this, never take what any major corporation tells you as the gospel truth. Pfizer’s “legal issues” section on Wikipedia is a damn mile long, hell Moderna even sued them for literally the vaccine we’re talking about, which got a chuckle out of me.
Also, I’m going to withhold judgment on the exact age range on Myocarditis in males, and I’m not claiming I had Myocarditis, never went to the hospital, but I definitely had suddenly-collapse-on-the-floor syndrome.
lol you started out being all like "just asking questions" then you really went for it. Take your antivax soapbox somewhere else please
I’m not on an anti-vaxx soapbox. I told you, I’m pro-mRNA vaccines, I’m “just asking questions” about literally one vaccine in particular. If I end up being wrong, I end up being wrong. I’m not saying the Illuminati/Bilderbergs/NWO is out to enslave us all, I just think there is more wrong with 1 vaccine in particular than was immediately told, beyond it ruining my weekend.
let's remember you started this conversation with a blatant lie about vaccines. you mentioned a doctor who has been debunked countless times for not understanding or intentionally misreading studies. you are just not coming off as a person seriously engaging with this
“A doctor who has been debunked”, ok man, I’m not lying about keeping an open mind. Precisely where can you point me to find the running feed taking down every bit of Campbell’s analysis? If Campbell is a fraud then damn, fool me twice as the saying goes, busg I’m not an idiot. I know how to read a scientific paper. Telling me someone is “debunked” in a comments thread doesn’t do it for me. Debunked by whom? Gimme some evidence here.
Hold on a minute, did I just get baited into arguing with a bot again? Your username looks like it’s from a cat running across a keyboard and you’re subscribed to no one. I really gotta stop taking the bait on this shit, whatever.
My username is randomly generated and I have privacy settings on and you still sound silly
Do you think you're on Reddit?
I got both vaccinated and Covid, nothingburgers all around. I'm just still furious they kept lying about what exactly the vaccine was supposed to do and how dangerous the virus actually was. I got duped.
I grew up in Michigan, and while it is true that there is no reason for anyone from Michigan to have a confederate flag, it is also true that that never seems to stop anyone...so maybe racist brother is not still in the aryan nation, just another Michigander with grandparents from Kentucky over-romanticizing the good old days of yore...
There's no reason for anyone to have a Confederate flag except if you hate the USA and want to secede from it. Or you are racist.
re-enactment enthusiasts?
edit: as a reason to have one I mean
We have a family cottage in northern Michigan, and I hate seeing those stupid flags. They were the enemy, dum dums.
Right? The best is up in the UP, it’s like if you guys were any further from the Mason-Dixon Line you’d be in Canada
Every time I see one of those dumb things I want to try to get an ISIS flag and see how folks will react.
My wife is unamused every time we drive by the Stonewall Jackson memorial and I quip about it being the historical equivalent of putting up a shrine to Timothy McVeigh.
Just to be clear he definitely is still a racist regardless
https://www.theatlantic.com/ideas/archive/2022/10/confederate-monuments-survey-race-religion-education-divide/671639/
The impersonation thing just doesn’t seem like that big of a deal to me. Twitter was artificially given way more cultural cache than warranted in large part because of their arbitrary verification policy. It’s a distorted reality where the media could spin any narrative about any event with the veneer of bluecheck legitimacy. It’s a silly website, not a place where serious discourse happens. If this finally forces the media class to acknowledge that, it’s a (probably unintentional) win in my book.