There's an ICD-10 code for "Shit's Rough, NOS."
Also I wonder if post-polio syndrome could be considered a subset of this.
Relatedly, Awakenings is a good book.
I think a wave of infections in a compressed period of time like this might make it easier to study post-infection issues. You've got fewer potential confounding factors, so you might get a clean study design. Maybe polio was similar?
Yeah, this was always a big part of the annoying thing around Lyme disease. Yes lots of people have some kind of post-viral syndrome from contracting Lyme, but no *they don't still have Lyme disease*, and for the love of God they shouldn't be getting huge doses of hardcore IV antibiotics!
Sorry Lyme is bacterial, but the point still stands.
If only people would stop having sex with ticks.
Anyway, if people are getting different viral infections and then having a variety of symptoms at some varying remove from that infection, the ability to separate signal from noise is very small. If you have a huge wave, you might learn something from a more clear signal.
We are like, so good at filtering noise. We could work together.
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Sorry to briefly hijack thread, but there is no check-ins thread. Also tangentially related, because some Long COVID folks feel better after getting a COVID vaccine.
Tim is scheduled for his 2nd Moderna shot, and I have a dental appointment at the same time. He's concerned that he'll feel like crap and be unable to drive home. For folks who got Moderna and felt crummy, when did you start to feel like shit? We're about 40 minutes from the place he's getting vaccinated.
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Nobody I heard of feels like shit that quickly. He'll be fine for many hours even if he later had a reaction.
Anyway, I made my spouse drive by herself two hours home after her second Moderna shot. You need to set boundaries in a relationship.
11: The side effects don't kick in til way later, 6 hours at the very earliest.
OP: I've done zero of the reading but I feel like "Long Covid" has to be psychosomatic 95% of the time.
14.2: I doubt it. Viral infection can fuck you up.
13: So true. I went with him the first time, because he was worried. He's taking me to my Pfizer appt this Saturday, mainly because of the location, and we want to get lunch out.
It wasn't really noticeable for me until nearly 20 hours later.
I have to drive to Thiel College to get my shot. I never heard of it before, so I had to check that it was not named after Peter Thiel.
I think that people who haven't had one or who somehow neglected to work with rheumatologists for over a decade really underestimate how many autoimmune disorders there are and how much morbidity there is because of it.
Took me about 10 hours to realize I was going to have side effects from my second shot -- and maybe another four hours before I really reached the low point.
It took me like half a day for me to have a reaction from my second Pfizer jab and it wasn't any worse than a bad hangover.
We're going into our second full lockdown over here.
Our schools are about to go full time just in time for B.1.1.7 to show up, which spreads more readily in children. Seems like a bad idea.
My son was telling me that, on the two days a week he does go, there is always a crowd of people that bunches up in the hall waiting to get into the lunch room because there is always a delay while the lunch room is being disinfected. I don't that having twice as many students will help this situation.
Noah and my gf got their first Pfizer shots about an hour ago. So far, so good. I had absolutely no reaction whatsoever from the J&J one. Could barely even tell I'd been stuck with a needle.
I did, in fact, get vaccinated on April 1st so maybe.
Did any of the letters in "Johnson and Johnson" look like a penis?
I can't recall if I've noted this here before, being 60% lurker really, but: a few years back, I had a terrifying several months long medical episode. I had a whole constellation of symptoms which, of course, made it a maddening problem for any doctor to approach, but foremost among them were brain fog, sleeplessness, lethargy, and sporadic acute pain. The onset was sudden and I literally could not work for several weeks. To the extent that I was lucid, I was legitimately planning for a disability claim.
To say that the health care system was unhelpful would be an understatement. Prospective diagnoses ran the gamut from Lyme or similar disease to panic attacks. Having both excellent insurance and ready access to specialists, I saw a variety of doctors but no one could ever pin down a meaningful diagnosis. A course of psychotropics to help with sleep and anxiety mitigated the worst of it and, well, eventually I got better.
Reading up on the long COVID folks and the research out of... Mount Sinai, was it, treating long COVID as a form of dysautonomia, I'm inclined to wonder if that's a good description of what I had, and moreover, how common these underdiagnosed afflictions are.
Being something of a professional systems analyst, an uncomfortable dawning realization over the course of my illness was that no single practitioner had the full picture, there was no Dr. House at hand, if I never got better, probably no one would ever know. Hell, even had I gotten a definitive diagnosis somewhere, most of the other practitioners would never have learned about it. The system incentivized nothing but local diagnoses of exclusion, and that's exactly what I got.
14.2 is actually fairly enraging, precisely because I think it's very pervasive within and without the medical community. I wish we had a more humane and honest way to deal with folk presenting with ambiguous, difficult to diagnose symptoms.
11: oh, thanks. I'll get that up.
Said the actress to the archbishop.
, if I never got better, probably no one would ever know. Hell, even had I gotten a definitive diagnosis somewhere, most of the other practitioners would never have learned about it.
Along the same lines, it makes me so angry that there's no feedback loop for telling doctors that they've misdiagnosed someone, if the correct diagnosis involved a different doctor. So a doctor can spend decades systematically discounting certain kinds of symptoms and think they're actually getting confirmation that they were correct in the vast majority of these.
Obviously women's health figures in prominently, as well as things with mushy, hard to measure symptoms. But the one for us was the doctor who ran a day of psychological tests on Pokey and concluded that he had Oppositional Defiant Disorder and mild depression, at age 6, and both were going to be very difficult if not impossible to treat. No, you asshat, it's run-of-the-mill ADHD and it responds absolutely beautifully to meds.
There's somehow a tricky needle to thread here, just because something is real doesn't mean doctors can do anything about it, and it doesn't mean that if they don't do anything about it that necessarily means they're not taking the patient seriously. I have IBS which is one of these diagnosis of exclusion where they just don't know what's happening and can't do anything about it, and that's frustrating but it doesn't mean I should be agitating for them to give me some medication that's going to do more harm than good. The medical profession needs to do a better job believing and communicating "unfortunately we don't know what causes this and there's nothing we can do about it right now" in a way that doesn't sound dismissive or insulting, but patients also need to learn that sometimes doctors shouldn't do anything! So often these arguments turn into "if doctors were taking me seriously they would do X" where X is something ridiculous.
The other problem is that something can be real and the best known treatment might be anti-depressants. Again there needs to be a way of communicating this that isn't making patients think the doctor is saying "it's all in your head." It's both possible that physical symptoms are caused by depression, or that physical symptoms are caused by the same kind of mechanisms that can cause depression. Taking myself as an example again, it's quite likely that IBS is primarily a neurological issue, with the nerves in the gut rather than the brain, and it's perfectly plausible that anti-depressants are a reasonable way to treat that. It's certainly the case that a lot of IBS can be treated by biofeedback therapy where you retrain how you're unconciously using the muscles that control your gut, and again there has to be a way for doctors to say that and for patients to hear it without it being read as dismissive.
I was trying to get my thoughts together, but 31 gets at what I was trying to say better than I was doing.
A lot of doctors think 14.2, which is particularly galling because, relative to the complexity of biological organisms, our understanding is extremely primitive. So it's someone saying "My crude instruments detect nothing, therefore it doesn't exist!" and doing it with a patronizing "sorry you're a headcase" attitude. There are parts of medicine (functional or integrative) that try to take these concerns seriously and think about lifestyle or supplement interventions, but those also attract quacks and pseudoscience, so you have to be careful.
I think 31 expresses what would have been my desired outcome nicely and probably speaks to the broader need. I would have strongly preferred my GP or someone to have sat down, look at everything, and said, "there is clearly something going on but our medical practices don't have an answer." I really do think that even the patients who are conditioned to expect treatment would respond well to such a clear admission.
It's not just the patients that could benefit from that level of honest communication. Had I needed to justify my absence to my employer in any rigorous way, particularly if they had any skepticism, it would not have been easy. If I'd needed to pursue a disability claim, I can only imagine the hell that it would have been without some official Certificate of Diagnosis, especially if I were a member of a marginalized group. Which it to say, Heebie's final graf of the post is right on.
I sometimes wonder to what extent diagnostic codes as the basis for payments have induced and/or exacerbated this problem.
I'm sure it hasn't helped, but part of the problem is how science works and what questions it can answer more readily.
I sometimes wonder to what extent diagnostic codes as the basis for payments have induced and/or exacerbated this problem.
My first thought is, there seems like a simple way to test it: how do things in the US compare with the rest of the developed world with better health care systems and better workers' rights? My second thought is, there are lots of confounding factors, American health care systems and workers' rights are separate problems, it's too complicated, I give up.
To some extent that's the point of a "diagnosis of exclusion." IBS is just describing a certain cluster of symptoms (that's what a syndrome means) while ruling out all known causes. There's no reason to expect that it even has a single cause. But I can still tell an employer that I've been officially diagnosed with IBS if that was something I needed to do. So somehow what we need is the medical profession to be more aggressive about coming up with more syndrome names, while being less aggressive about treatments, and doing a better job communicating.
36: It's somewhat tricky to compare between countries because other systems are going to have their own problems in this direction. For example, the UK is quite strict about deciding what best practices are based on cost-benefit analysis and then doing just those things. If you fall outside of known effective treatments, it's not clear to me whether doctors are even allowed to just try shit the way they could here. There are probably other countries that would make for a better comparison, but it's not obvious to me. Every system is going to have some kind of rules about what sort of medical treatment is going to be paid for, the US rules are especially Byzantine and cost-ineffective, but there's always going to be pretty significant rules around what gets paid for.
I remember the kids getting sent home from daycare with pinkeye, and we weren't allowed to bring them back until it was gone, unless it was treated. But we kept having (ethical) doctors say, "Look, I'm not going to treat this kid for essentially having an eye-cold. It doesn't respond to anything and it's already all over the daycare and your kid is not going to make anything worse."
What we stumbled into doing is having the doctors sign a note for us that cagily asserted, "Lil Giblet is being treated as appropriate for the condition" and then we would send 'em back in.
We've recently been banned here from requiring doctor's notes for excused absences. It's a little annoying (because you lose the chance of catching cheaters who have faked nonsensical doctors notes), but ultimately the right decision because people with colds shouldn't be going to the doctor let alone being treated. They should be staying home in their room and not leaving!
I don't think I've been asked for a doctor's note since I worked for the state in Ohio.
My (un)favorite asshat doctor comment is still the time a neurologist ran three (3) tests on me and then said "well, I've ruled out all possible organic causes for these symptoms, so you need to see a psychiatrist now."
My unfavorite comment from a dean while I was a college professor was the time they forgot to schedule interpreters for a faculty meeting, and then had the faculty meeting anyway, and then sent an email apologizing for accidentally excluding the "special-needs faculty"
I got my 2nd moderna shot yesterday at 4 pm (Mountain time), felt reasonably fine through the evening, and woke up feeling like I have the flu in a debilitating way. VERY sore shoulder, very achy body, fever/chills. They told me the typical onsite time of side effects is 10 hours but had no information about duration.
I completely believe that viral illnesses linger, but it's so hard to prove. I had a rough time in 2017 following a bad bout of bronchitis. It cleared up -- and then for the next nine months I would regularly break out in hives. The maddening thing aside from the continual itching was that because we couldn't pinpoint a trigger, there wasn't a clear route to a diagnosis. It eventually went away after about nine months.
My PCP is pretty good about emphasizing that when we attribute something to stress, that doesn't mean it's not real, just that we can't currently find a physical cause, and we know the something is correlated to stress. But if we discover at some point that every fucking thing is caused by a virus, I won't be in the least surprised.
45.1: Oh man, hives reminds me that for like 2 months I got hives after drinking anything with alcohol in it and then after 2 months it just went away. Doctors were baffled ("It can't be caused by alcohol, maybe it's nitrates have you tried drinking different kinds of alcohol?"). It's really plausible though that when you suddenly have a bunch of new antibodies that your body is going to have weird immune reactions more often. But this is all a great example because hives are a pretty clear case where the issue is your body's immune response to having had the virus, and not at all an issue with an ongoing infection. That's the tricky thing, the illness is lingering, but the *infection* is not.
I'm definitely on team "basically everything is caused by infections or our immune response to infections."
46.1: That's great. I want a doctor whose advice is: If lagers are giving you trouble, try switching to pale ale.
I was so close to walking into the bar last night. I was walking right by and there was nobody at the bar except for the poor bartender and two people at a distant table.
I am very much on team "We Underestimate the Centrality of the Vagus Nerve and the Interplay Between the Autonomic Nervous and Gastrointestinal Systems" but it's really hard to fit that on a T-shirt.
In a sort of generalization of the pathology we've been exploring in this thread, it's a little weird to me the extent to which the modern "civilized" world pretends that we already have all the answers there are to have about various things and it's a monumental struggle to update our priors. From idk the effects of lead pollution to the causes of ulcers to the slow harms of forever chemicals, we're slow to revise our beliefs at the best of times and when corporate profits are involved, well, good fucking luck, you've got the fight of decades ahead of you if you're lucky.
This is a fascinating thread, thanks to everybody who has shared.
I think 31 expresses what would have been my desired outcome nicely and probably speaks to the broader need. I would have strongly preferred my GP or someone to have sat down, look at everything, and said, "there is clearly something going on but our medical practices don't have an answer." I really do think that even the patients who are conditioned to expect treatment would respond well to such a clear admission.
For an example of the value of that, this post by Maria Farrell at CT is very well written, and very much on-topic.
I worked freelance in film and TV production. I'd already figured that wasn't a long-term career for me ... I took a job as production coordinator on a mini-series in a gig I thought of as 'one last heist' to make enough money to go back to school. The job went from June through August. It was fourteen-hour days, six-day weeks. We ate irregularly and sometimes shared food. Sundays were for sleeping and laundry. Sometime in late July, a bug went around the office. Taking sick-leave is almost unheard of in film production. The producer was visibly shocked when the P.A. took a Saturday off with the bug. She came close to being sacked. So I powered through. We all thought it was a summer cold. Actually, it was mononucleosis. ...
....
But as mid-week passed and test after test revealed nothing conclusive, I began to realise that one of my private fears was coming true. A couple of years before, I'd watched Todd Haynes' film Safe, starring Julianne Moore as an affluent Californian housewife who succumbs to an indeterminate 'environmental illness' that no one except quacks really believes in, and which cuts her off from everything and everyone she loves. She ends up living in a weird white capsule on a new age retreat, burbling self-help sentence fragments like useless offerings to a distracted god. I remember thinking after I watched that film and read Haynes' interviews about this character who retreats further and further from life, and how at each step her illness gobbles up the little she has left to offer it, that such an illness would break me, that being doubly punished by both an illness and its erasure by medicine, by society, would be unbearable.
When my diagnosis dwindled down to post-viral fatigue, I already knew that there are certain kinds of suffering that elicit not pity or compassion but a defensive anger and blame, and that this was one of them. The night before I was to be discharged, my physician did a last few neurological tests that proved sub-optimal but, again, inconclusive, then came and sat with me and explained how things were going to be. He said the illness was real, but they didn't understand it yet, and that a diagnosis of exclusion was the best he could offer. He advised me to keep my own counsel, which I took to mean keep it to myself because other people would think less of me for being ill in this way. And that's what I've done for two decades, referring to it obliquely if at all. Most people I've worked for never knew. But now I turn over that phrase again, I wonder if he also meant, by keeping my own counsel, that I should be guided by my own wisdom because so little else was available.
Worth reading the whole post.
14.2 isn't saying that people who say they're experiencing "Long Covid" are imagining their problems. Or that if doctors don't have a name and diagnosis for something, it's not real. I def disagree with both of those statements. There are more ailments in heaven and earth than are dreamed of in current medical philosophy. In fact, the more you believe in the existence of a long tail of weird unknown ailments, the less you should believe that a wide range of symptom patterns are all due to one phenomenon called "Long Covid".
14.2: Not directed at you exactly, but the hell with "psychosomatic." It is going to be hard for someone to introspect whether their symptoms are coincidental with the resolution of the COVID infection or not, but that doesn't mean they're fake. If anxiety is causing a physical reaction, it doesn't make the physical reaction less real or less of a problem. If IBS is caused by a twitchy vagus nerve and an antidepressant fixes it, isn't that more reason to think that 'psychosomatic' is actually just 'somatic' that we don't really have a handle on yet?
46: The other issue is that I think we expect symptoms to be laid out like an episode of House. I can't speak for everyone else's experience, but my experience is that chronic symptoms aren't constant and aren't diagnostic of anything in particular. E.g., The hives were extremely frustrating. They'd come on for no reason at all times (brush my arm with my hand while lecturing, develop itchy welt) but weren't replicable reliably. And chronic neck pain diagnoses are even worse. I think I broke the doctor's nice resident because he dutifully did all of the basic strength/neuro tests, because most of them rely on range of motion as a limiting factor and most of my joints are hypermobile.
Anyhow, I'm moderately hopeful that at least one good thing of all the study of long-haul COVID might be that people with weird autoimmune responses get taken more seriously.
DOES THE BODY RULE THE MIND
OR DOES THE MIND RULE THE BODY
I DON'T KNOW
I was gonna apologize for using the word "psychosomatic", but I looked it up and apparently it means "(of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress"... according to that definition it seems to me that practically everything is psychosomatic, that there shouldn't be a negative stigma against [people with conditions described by] the word.
If everything is psychosomatic, shouldn't one reject the word in full as not describing anything?
that there shouldn't be a negative stigma against [people with conditions described by] the word.
True, its not good to be a psychosomatophobe.
Less unseriously, while the term "psychosomatic" shouldn't, by its stated definition, carry the insinuation of "it's all in your head," in practical use it very much does. That probably has a lot to do with society's evolving but still regressive attitudes towards mental illness; pick a new term and it's likely to pick up the associated baggage in short order.
But I don't know that I even agree that the stated definition is a useful or accurate descriptor. Better to think about such maladies as reinforcing feedback cycles between body and mind than the mind being (symptomatically) above the body.
59: I couldn't be bothered to figure out how to spell "Ques que se" properly.
I don't need your pity. I did figure it out.
fa(fa(fa(fa(fa(fa(fa(fa(fa(fa(fa))))))))))
I used to sing variations on pop songs to my kids when they were little. The one for calming a crying infant was called "Psycho Baby."
The fa-fa-fa-fa bit involved bouncing.
See also, the hostile baby rocking song: https://mudcat.org/@displaysong.cfm?SongID=418&SongID=418