I had a ringside seat during the whole XMRV/Chronic Fatigue Syndrome fiasco.* Some of the patient advocates became increasingly nutty, abusive and conspiracy obsessed as it became clear that the supposed connection had been an artifact all along. But it was clear that in most cases it was the accumulation of years of frustration and dismissal that was mostly driving their response.
*I don't work in that area, but I knew the guy who ended up being one of the NIH's public spokespeople on the subject.
but framed (in this article at least) as being grounded in reality
"Grounded in reality" was definitely not my takeaway from their centerpiece case who had decades of depression, obsessive compulsive behaviors, and hypochondria before he ever developed ENS.
On a related note, this article made me think of Chuck's electricity allergy in Better Call Saul. And I was having the hardest time placing where the hell I'd seen that guy before and someone finally clued me in that he was "Lenny" from Laverne and Shirley. I'm not quite old enough to really remember that show but it's one of those things along with Kung Fu that I'd see as mid day reruns when I'd be home sick from school.
3: You need to see This Is Spinal Tap.
4 is right.
To the OP, who is naming this stuff?
2: "Grounded in reality" is a slippery concept, as the ENS advocates acknowledge in the story:
Houser also often requires patients to undergo mental health assessments before he considers surgery, and Payne says he's similarly vigilant. "There are some people I've refused to do surgery because they were people who I felt were setups for an empty nose scenario," Payne says.
Neither Houser nor Payne, however, is arguing that ENS isn't grounded in reality.
One layer cake, baked in a large baking sheet. Usually chocolate. Sometimes the icing has pecans or is cloying.
That's just a regular sheet cake, except for the pecans.
The symptoms sound very specific and odd. I wonder how many sufferers there are who wrote down what they were feeling before realising that this was a thing that other people had described as well. If there are a lot of independent accounts of this sort, wouldn't that be prima facie evidence that they aren't imagining the symptoms? Or is that some well-known fallacy?
Frequently, Texans think they're the only ones doing something that everyone does. Did you know the weather fluctuates rapidly here?
So, if you don't like the weather, could you wait a minute for it to change?
If there are a lot of independent accounts of this sort, wouldn't that be prima facie evidence that they aren't imagining the symptoms?
Also, proof of Bigfoot.
It is also possible that the physical sensation of ENS is something that is very widely experienced as an after-effect of nasal surgery, but most people simply accept it and get on with life; it's just the minority of people who are already psychologically prone to obsess over minor changes in their physiology (such as those with existing histories of OCD and depression) who fixate on it to the point where it has serious consequences.
15: But most Bigfoot reports would be by people who have heard of Bigfoot.
I know. Cheap shot. I was thinking of the whole alien abduction issue but couldn't remember the medical condition (until now - sleep paralysis) that lots of medical-type people now think caused the reports.
16, 18: That makes sense. Pathological interpretation of some real experience would make the idea that ENS is not a genuine illness fit in with the existence of independent reports of weird symptoms that all jibe with one another.
Goddammit Heebie I told you I don't have a fucking sinus infection.
To play devil's advocate, the doctors aren't paid for care coordination.
That's still no excuse for being rude.
(Primary care doctors are often, in fact, paid to coordinate care, as part of their agreements with insurance companies, and even if they weren't, the issue is not just that they are being rude about it. Good job playing devil's advocate though.)
23: Contracts are changing, but it's a big enough problem that doctors often don't want to do any work outside of a visit. Now, some are going to be paid based ion the complexity of the diagnoses.
"I don't know. I'll refer you to a specialist. Talk to them." Is pretty common for problems that aren't even super complex.
Right now, a lot of doctors are pressured to bill in 15 minute increments, so they really don't want to address more than 2 or ; things at a visit.
Texas sheet cake is shorter than what eg Giant Eagle sells, more like a thick brownie. Also slightly more dense than a standard sheet cake.
Aren't they typically chocolate? Anyway, the time I had it, it was too sweet, albeit not in the cloying, spun sugar mode of Giant Eagle cakes.
My dad (a doc) and I (lawyer) were discussing unreliable narrator patients/clients over the weekend. Often, they have some very real problems that are combined with their not-real problems.
The safe course for the professional is to not take them on as clients or fire them. Yet, that just sends them off to another professional who might not see the whole picture for a while. Sometimes you have to take one for the team and stick with those people even when they make it hard on you. (This is not a reference to E.Messily, but rather Munchausen (and by proxy) syndrome people.)
Great, now I'm afraid to pick my nose.
I had the exact opposite response. I've been picking my nose every since I first read the OP. Fortunately, my office has a door.
I think it seems extra-sweet because it's short, so the icing/cake ratio is pretty high. That is, I don't think it's sweeter than any other cake would be if the other cake were also 1" high and then frosted.
I didn't say I'd stop. Just that I'm afraid to now.
I think 16 is super likely, i.e. that there's a real change that most people adjust to rather easily, but that obsessive people can't. I'm more sympathetic to this than Morgellon's (which is clearly totally psychological).
Fibromyalgia I'm torn about. I just looked up the symptoms and I have pretty much every one of them. But I've always just chalked that up to getting old. I also suspect that part of it is the generic nature of the symptoms and that many (including myself) would say that I don't have "true" fibromyalgia. Most importantly to me, I would receive no comfort from receiving a diagnosis of fibromyalgia that carried with it no mechanism by which it is caused and no hope for a cure.
"Empty Nose Syndrome" soounds like it means you haven't got any cocaine.
I'm inclined to call bullshit on fibromyalgia and be very unsympathetic mostly because my extremely abusive ex claimed to suffer from it and often blamed her abusive behavior on same. Uncharitable I guess but fuck her.
33 That's a real thing, my friend.
To avoid not having Empty Nose Syndrome, Rob Stewart emptied cold medicine capsules so he could fill them with cocaine and shove them up his butt.
33: I was thinking of cocaine but more along the lines of Daniella Westbrook or Steve O.
37 may also be what Rob Stewart was trying to avoid.
Worth noting that we can learn injury in a very real and deep way. Amputees get phantom limb syndrome; I have a phantom UTI. There was initially an actual very real illness that my body reacted to creating discomfort, and I started behaving in ways to accommodate the discomfort, and eventually the actual injury got better, but the discomfort didn't go away and I had to keep up what had been adaptive behavior to soothe it--it became, basically, a neurological disorder. Just because an illness is behavioral doesn't mean, for better or worse, that "just quit acting like you're sick" is a feasible intervention. Not that anyone is saying that, just you can be crazy AND in pain and even in pain BECAUSE you are crazy and everything can still be real, if inconvenient for doctors.
I've been fighting a battle with an undiagnosed mental problem for over a month now: nearly constant dizziness and lightheadedness, insomnia, and anxiety. The doctors all seem to be concerned and want to be helpful, but it's really depressing to be passed from specialist to specialist with no clear path to a prognosis in sight. It becomes very clear very quickly how little incentive anyone but the patient has to find a satisfactory answer, and how poorly knowledge propagates, even or perhaps especially in a hospital setting.
Sounds physical rather than mental, no? Not helpful, I realize. Best of luck, ZS.
16 and 32 are both kind and make a lot of sense. A dear friend has been spiraling into chronic illnesses, many self-diagnosed. I feel awful for her and her family, because she is clearly suffering, but I'm starting to be less than credulous about some of these medical problems. I'd list them, but I think it's probably too identifying (she has a blog). Fibromyalgia is one. There are others, several self-diagnosed. The wosrt part is watching how it affects her parenting and how having a chronically ill parent affects her kids. I've tried delicately describing how sometimes problems which seem entirely physical can be strange manifestations of anxiety or similar. She prefers to "manage" her illnesses through diet and lifestyle, which has led to very strict self-imposed behaviors, at least most of the time. I'm tempted to try to talk to her husband about it, but I think it would gut her if she thought he didn't believe her. At any rate, she's carefully chosen doctors who take her seriously, even a therapist, and I keep wondering how she keeps adding diagnoses. Then I wonder if I'm just an unsupportive asshole.
I've been incredibly lucky not to have very unusual illnesses, but for the one or two oddball things, I've been really, really lucky to have smart and curious doctors who got me to the correct intervention. The most recent was a phantom toothache. There are very, very few specialists who recognize this as a problem of nerve signalling, not an actual problem with the tooth. Lots of people have multiple extractions and all sorts of disastrous work done before they find the right doc. I got a specialist in less than a month who wrote me a prescription that eliminates the (minor) pain.
Then I wonder if I'm just an unsupportive asshole.
It's not actually bad work if you can get it.
People with unsupportive asshole syndrome should use standing desks.
41: I used to have to take anxiety screening test annually at work. Lots of symptoms are physical. Upset stomach? Tightness in the chest? Lightheadedness? Racing heart? Trouble sleeping? Trouble catching your breath? Those are all common symptoms. I thought it was a cool approach for people who might not connect physical symptoms to anxiety as a root cause.
45 not meant to be a comment on 40, just that partitioning "mental" and "physical" isn't really helpful.
29 -> 28, right?
I thought that article was weird because almost all of it was pretty sympathetic to the patients and the doctors taking the idea seriously, but it started out with probably the weakest case study possible. If you're talking about a (potential) disorder which has symptoms that are, at least when described as they are in the article, super hard to distinguish from "having a bad anxiety attack"* then at least don't pick someone who had a problem with serious anxiety beforehand. Or, I don't know, maybe there aren't any people like that that they could find. But that's a bad sign if so.
Fibromyalgia is a similar case, I think, in that it's usually co-morbid with another thing that causes those same kinds of symptoms (depression). It's different in some ways, but mostly in terms of severity of some symptoms over others, and in a lot of cases it's also responsive to the same drugs. My suspicion with it is that we're looking at a subspecies of depression though, unlike ENS which sounds more like either an expression of anxiety that's influenced by an already existing story or something unrelated entirely but anxiety inducing.
*Sensation of not having enough air in your lungs? Panic/fear? Feeling like you're drowning? Sense that something specific in your body has gone disastrously, threateningly wrong without any obvious physical evidence? Without adding more to it I think a lot of responsible doctors would have trouble getting past "you have an anxiety disorder", especially if they're faced with a patient who actually has one already.
OP: (Imagine a penis and you're not far off.)
Waaaaay ahead of you there, Mr. Oliphant.
The asshole-Doctors thing is a known phenomena - it's described right in the introduction to The Belief in a Just World*, and Lerner credits seeing it in practice on a psych ward and then later in a friend who worked in a pediatric ward** as what inspired him to study that sort of thing in the first place. (He describes how, in the psych ward, patients would get treated as malingerers or joked about behind their backs in ways that were genuinely disturbing to him and then some new possibility for treatment would show up and the phenomenon would disappear completely, and only return when it turned out not to work for people.) It's really incredibly hard for people who went into their line of work out of a desire to help people, and who have spent years/decades/whatever in an environment where that's an explicit and constant priority to be faced with people who are clearly suffering but who they are powerless to help. And as a result they tend to avoid or mistreat those people.
*I know I've said it before, but one of my favorite books.
**That bit is both horrific and sad:
One visit to a pediatric ward in a university hospital is enough to reduce most people to tears - lumberjacks, old soldiers, and morticians alike. How then could Dr. Annie [who was described as being almost unable to tolerate even just sad stories] spend five minutes, much less hours at a time, in that kind of environment? After considerable probing and talking with her the answer became clear. When she walked onto that ward, she literally did not see sick, suffering children. All she "saw" were kids she could help, kids she could make well. The next question, obviously, is what happened when it turned out that one of the children would not get well - would die - and there was nothing anyone could do about it. Dr. Annie did what many physicians do, much to the dismay of the ward nurses. They find every imaginable way to avoid the patient - not to see, talk to, or have contact with the patient. What remains is simple denial and avoidance as a way of not "seeing" sick suffering children.
Yeah, AHIMSUB, I think that 47.2 is pretty much always the case -- maybe there's some ur-depression that manifests in totally different ways, even allowing people to semi-consciously allow themselves to have symptoms. Sometimes I think those MCS folx are the sanest of us all. We really are poisoning ourselves (and some people get more poison than others) so that this ridiculous oligarchy of greedy rich assholes can wallow, Scrooge McDuck-like, in their vast vaults of gold and silver? Shouldn't everyone be depressed or enraged all the time? What is the appropriate response to 15 hours of screen time a day? But we're subsumed into the Spectacle even if we try to circumvent it somehow.
49 is really, really not the case with the docs I've known well. They obsess a bit over the weird patients with unusual labwork. To be fair, this subset is docs with academic or research based positions, so an odd sample. I do recoomend that folks with complicated medical problems find themselves a large medical research center to be seen at. Bedside manner IME can be ghastly, but they're pretty good at fixing people the best they can.
That book is $175 as a kindle book! What the fuck! The cheapest used book is $85.
Obviously it must get used as a textbook. What a fucking scam textbooks are.
51: E. Messily has specifically related the advice that it works better for her to see academic doctors because they're less thrown by a challenge and more likely to find her case interesting, rather than intimidating/overwhelming/too time-consuming.
I think it's just an old academic book which means that basically only libraries at universities bought it and they only printed enough to sell to that exact audience, and it was in 1980 or something. I obsessively haunted the Amazon page for it for like two years before someone put up one at a normal book price and snapped it up as quickly as I could before they realized they could probably offer it for like $50 and still be undercutting everyone else. I doubt anyone is buying it though. Going to a decent sized university library is probably the only thing short of that that would work for getting ahold of it.
50 - It doesn't really even need to be symptoms picked up through some kind of general suggestion or distress with only so many ways to manifest itself somatically. (I mean, that's certainly part of it, but..) Fatigue, cognitive problems and pain are already standard symptoms of depression*. It's just a question of which ones are more severe than others, or where/how they show up that's important for distinguishing the two (to the extent that we can).
*Along with constipation/diarrhea issues, specific kinds of insomnia (but not all kinds), etc. Depression has more than a few distinctive biological symptoms, not just feeling bad all the time, because human biology makes no sense.
55.1 is right. Or what I was about to say after looking it up.
I think also there's a major divide between people who are actively searching for a label for their suffering for a variety of reasons, and those who are not. Syndromes that are full of vague common symptoms (fibromyalgia, chronic fatigue, plus many things in the DSM) will inevitably attract the former.
Also it's owned (now but not originally I think) by Springer so there's obviously going to be some really insane gouging going on there. My copy apparently came via the Clark Technical College library which must have bought it for some reason and then realized a later that they weren't offering many degrees in social psychology and purged it. I don't think I bought it directly from them, so I have no idea what happened in the interim, but that's the only way you're going to get ahold of one for your very own.
Apparently, if you can read Chinese or have a friendly junior worker who is pissing off Donald Trump, you can get lots of academic books in PDF format (English versions).
It is still worth reading if you're at all interested in moral psychology though because it's mostly going through about twenty years of (mostly) this guy's research and there's a really amazing amount of stuff in there above and beyond "people do this victim-blaming thing". There's an unpublished study he talks about that compared going door to door and asking people for money for some charitable cause, and going door to door and selling something dumb (decorative candles I think) for obviously higher than normal prices to raise money for it. (It doesn't seem to make much difference right up until you identify the cause as one that involves a really big harm/injustice/whatever, at which point it makes an enormous difference.)
...and purged it
We non-Stalinist librarians prefer the terms "weeded" or "deaccessioned".
We non-Stalinist librarians prefer the terms "weeded" or "deaccessioned".
Talk about putting lipstick on a fascist pig.
An end to the deviationist Barry Freed! Scientific socialism has no place these remnants of bourgeois librarianism.
Prepositions have no place the grammar of the future!
We shall bury the bourgeois grammarian in paper volumes of his irrelevance! All power to the men of revolutionary action, none to the scribbling schoolmarms of grammatical correctionalism!
63 Not "Opinionated Stalinist Librarian" because not opinion. Socialist realist fact. Or Megan.
I think it's just an old academic book which means that basically only libraries at universities bought it and they only printed enough to sell to that exact audience, and it was in 1980 or something. I obsessively haunted the Amazon page for it for like two years before someone put up one at a normal book price and snapped it up as quickly as I could before they realized they could probably offer it for like $50 and still be undercutting everyone else.
But the e-book exists! It's galling that they're charging $175 for a digital copy of a 40 year old book!
I feel like we've never discussed this here and it will surely usher in a fresh perspective of DRM.
Barry had won the victory over himself. He hated prepositions. He loved Big Brother.
I'm not sure if anyone has a plausible or good faith defense of the big academic publishing companies at this point. "It takes money to run a press to print these journals" was a sketchy rationale even before print-on-demand became a reasonable possibility, let alone before they switched to electronic databases and stopped actually printing out most of the things.
Having publishers dig holes and fill them in would produce less economic dislocation, but laid-off manufacturing workers would scream.
I also have to tell Elsevier that somebody wrote a methods section that is incomplete.
I've ILLd it.
If you dissassemble it, scan it in, re-bind it, and email me the PDF, I'll totally read it on my kindle. If you would be so kind.
70: if the publishers dug the holes and climbed in, I think the authors could be employed to fill them
For me, anxiety is probably becoming a contributing factor, but none of the other obvious physical symptoms are apparent. Furthermore, xanax and other drugs in its class don't seem to have any helpful effect other than maybe getting me a bit more sleep.
Anyway, I don't cite my circumstances in hopes of blegging a diagnosis, just relating another anecdote of the challenges of navigating the health care system with an undiagnosed malady. Our system is apparently fantastic with physical trauma and easily diagnosed illnesses or disorders, but show it anything odd or ill-specified and you're largely on your own. The medical coding system does not seem to reward iterative diagnostics. Moreover, even if it did turn out to be, oh, say, Lyme disease, the neurologist who thinks it is "just" anxiety would almost certainly never find out.
These cases always seem to be presented as having two exclusive possibilities: either it's all in the person's head and not real, or there is a secret underlying physical cause that hasn't yet been discovered. I find that way of framing it unhelpful, partially because I think that if a course of anti-anxiety meds helps the guy's nose feel better (or makes him feel better about his nose), that seems like a perfectly fine solution, but partially because (as 16 says) I don't see a reason it can't be both.
An uncomfortable or unusual feeling in the nose that most people shrug off might be too much to bear for a person who already suffers from anxiety -- but that doesn't to me make it any less real, just that its underlying cause isn't solely a physical change in the nose.
The academic publisher situation is so frustrating, and we're really just not getting any closer to a solution. It gives me weird anarchist impulses, where the only solution is mass lawbreaking or violence.
People are already getting started on the mass lawbreaking. They haven't gotten to the violence yet, though. Maybe soon?
79.1: Haven't seen a better real-world example of the dialectic in years.
78: I do hope you feel better soon. I really wasn't meaning to imply anything about your difficulties re: anxiety; it was just the set of physical symptoms from a "mental" problem I was most familiar with. I do (if possible) recommend trying to get referrals to research centers and trying to find docs with fancier credentials (Medical neurologist? Some kind of super-duper ENT?) from fancy med schools (frex, Hopkins, Harvard, UCSF) if you continue to feel like your docs aren't helping. I'm sorry you're in that situation.
I possibility have something like this. Constant sporadic abdominal pain which feels like severe menstrual cramps, but unaligned to the menstrual cycle. They can come and go at any time of the day, but are usually the worst for about 2 hours in the evening. At their worst the pain is almost unbearable and completely incapacitating. I can get horrible cramps upwards of 5 days a week for weeks on end, or go weeks with nothing but the mildest twinge. I have issues with dysmenorrhea, ovarian cysts, and a overly tight pelvic floor, and my gynecologist's first guess is a "wiring issue," which basically means nothing is physically wrong. I do have an "overly sensitive uterus, according to a gynecologist to tried and failed to insert an IUD." I'm worried that there's some sort of nerve pain memory from the cysts which is making me overly sensitive to that sort of pain, which is making what otherwise wouldn't be a big deal really painful. I'm really stressed and I've had stress cause issues with other muscle groups, so it might be I'm storing stress in my pelvic floor, which is causing uterine cramps. The other guess by the gynecologist would be endometriosis, which is an actual physical cause but also a terrible thing to have.
84: Not all academic doctors are great. (1.) Academic medical centers have a number of docs on staff whoa ren't engaged in research or very academic. Sometimes, academics are not the people you want treatign you, because they are too wedded to a single theory. (2.) One psych department at a super-duper fancy place seems somewhat overrated to me in terms of the quality of care that a typical patient referred to them is likely to get. It's a huge department with a lot of part-time faculty, so it's not uniform, but they do CBT for anxiety, and DBT for borderline personality disorder. They won't do DBT for anyoen else even though it's been shown to be useful in bipolar and could probably be helpful for people with PTSD- which a lot of people with BPD have.
In the community, doctors are sometimes less wedded to getting the diagnosis exactly right and applying a particular "evidence-based" treatment. It would be one thing to be so precise if we understood the etiology precisely (like targeting an antibiotic to the organism in the UTI) But, since we don't, someone who is just focused on trying to figure things out without rigidly applying a particular model sometimes does a lot better.
Oh, man, the first definition that came to mind for CBT was the urban dictionary one, which does not seem like it would help with anxiety at all.
I never knew there was an urban dictionary definition for that.
But I don't think I'm insulting you if I point out that I seem to know many more obscene phrases than you do.
OT: Political calling operations are getting better technology. A recorded voice called, asked for me by name, and, after I answered, a woman who was the voice of the recording was speaking to me on behalf of Sanders.
88: I could see the distraction taking your mind off the ongoing problem, maybe.
87: Sure, they're not all great. And lots are jerks. And I'm not a doctor and am just a random person opining on an eclectic web magazine. But if I had a medical mystery, or I wanted access to a clinical trial, or I had a rare condition, I'd try my regular doc first, then aggressively turn elsewhere. I think people don't realize how many other options are available. I've spent the past few weeks looking for a specialist in a rare subfield (see 42.2). The doc I saw in DC was at Johns Hopkins. There are no doctors seeing patients for this condition in all of Chicago. I might have found one at U of Michigan's dental school. Again, I'm lucky, and it's not a serious condition, nor an urgent one, but there are limited options available, and they're at big research centers. And I won't be their first or only patient with that odd condition. I don't generally care much about prestige or training if I want someone who can write routine prescriptions for antibiotics and take Pap smears.
Also academic medical centers are often hard to get to if you have cheaper insurance.
95: BY definition, most people don't have those rare problems. And you'd be amazed at how poorly some primary care doctors at academic medical centers are at making sure that their patients get routine stuff like pap smears.
No-fault universal compensation for medical malpractice would probably be especially great for sufferers of undiagnosed problems.
94
Almost guaranteed to, but not likely to reduce overall anxiety. Unless you're performing it on someone else, in which case iit could be an excellent distraction.
