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The nonexistent epidemic
May 9, 2011 2:54 PM Subscribe

The Guardian speaks to suffers of Morgellons, a disorder that, depending on whom you ask,is a delusional psychosis, an epidemic that's whitewashed out of medical research, or for conspiracists, alien nanotechnology. (Previously.)
posted by mippy (127 comments total) 27 users marked this as a favorite

Awesome! As a hypochondriac, I'm completely fascinated by the Morgellons disease "epidemic."
posted by infinitywaltz at 2:58 PM on May 9, 2011

I didn't link to this in the main post, but there are a lot of close-ups of the 'fibres' here. Some quite gory.
posted by mippy at 3:01 PM on May 9, 2011

On the one hand, my family has a history of "delusional ailments" like CFS and fibromyalgia.

On the other hand, everything looks otherwordly at a x200 magnification factor.
posted by muddgirl at 3:02 PM on May 9, 2011 [1 favorite]

After reading the article and the majority if the comments I am still confused regarding the fibres. If the disorder is psyhcisis how do the fibers exist and how can they survive such high temperatures?
posted by errspy at 3:03 PM on May 9, 2011

Wow... was just reading about this today: Delusions of Parasites. It's also a scathing take-down of "naturopaths" that "treat" this disorder with electrodiagnosis. The author basically says that the filaments are either nonexistent or lint-type material, and that Morgellans has been treated successfully with antipsychotics.
posted by jschu at 3:07 PM on May 9, 2011 [6 favorites]

All of the follow-up testing has shown the fibers to be environmental in origin: "nylon; cotton; a blond human hair; a fungal fibre; a rodent hair; and down, most likely from geese or ducks." The original results, like the fiber that supposedly survived burning, have not been replicated.
posted by infinitywaltz at 3:07 PM on May 9, 2011 [5 favorites]

Great link, jschu, although I think the "naturopaths" are less a threat than people like Ginger Savely (mentioned in the original Guardian article), who "treats" the disorder with long-term antibiotics. If you're going to offer a placebo treatment, I'd rather have it be one that doesn't encourage MRSA and the like.
posted by infinitywaltz at 3:09 PM on May 9, 2011 [10 favorites]

Granted, I'm just some dude with high-school level biology training, but I'm going to point to the cause as "vaccines, BPA and pesticides" and if you show me evidence to the contrary you're not listening to me and/or involved in profits from those industries. Some things you just know, right? Secretly I'm not going to discount nanobots, but I'm still self-aware enough at this point to realize that sounds unpalatably insane so I've save that for discussions with people who agree with me.

Now if there was only some way to get my kid afflicted with this so I could write a book.
posted by Mayor Curley at 3:10 PM on May 9, 2011 [20 favorites]

Also 600C is not that hot. An aluminum shaving, for example, would have to get about 60 degrees hotter to melt.
posted by cmoj at 3:10 PM on May 9, 2011 [2 favorites]

this is something I can't read about on the off chance that fibers start growing in me.
posted by bottlebrushtree at 3:10 PM on May 9, 2011 [7 favorites]

I listened an interview with Andy Dick on Marc Maron's WTF podcast that has had me think about the stigma attached to some diseases. Basically, while Dick admits that he has a drinking problem, he's reluctant to attach the word "alcoholism" to it, because people ridicule him on the basis of having what he would otherwise agree to call a disease. He asked why, if something is a disease do we make fun of the people who have it? And I think I have to agree that, on some level, he has a pretty good point, whether it is a physical ailment like alcoholism, or a mental ailment (like, say, Morgellons).
posted by Blazecock Pileon at 3:11 PM on May 9, 2011 [4 favorites]

"Yet, when we speak, Savely is resolute. "These people are not crazy," she insists. "They're good, solid people who have been dealt a bad lot.""

Not being a fucking asshole about mental health problems would do a lot toward making sure people with mental health problems got proper and compassionate people. The implicit scorn toward mental illness in that statement is revolting.
posted by idiopath at 3:11 PM on May 9, 2011 [54 favorites]

*proper and compassionate care
posted by idiopath at 3:11 PM on May 9, 2011

If the disorder is psyhcisis how do the fibers exist and how can they survive such high temperatures?

I would hope that after the Wakefield fraud we learned not to trust doctors simply because they are doctors. I've only looked quickly but Scopus doesn't bring up any published work under Wymore's name on this subject. I also think this is key:

Smith's exposed skin is covered in waxy scars. Although he still itches, his lesions appear to have healed. If, as morgellons patients believe, the sores are not self-inflicted but caused by fibre-creating parasites, how is this possible? "I absolutely positively stopped picking," he says.

The implicit scorn toward mental illness in that statement is revolting.

Word.
posted by muddgirl at 3:12 PM on May 9, 2011 [1 favorite]

I have had very bad eczema on my hands, and would constantly end up pulling fibres out of the sores - from the gloves I had to wear for about five months a year. It must be possible for an open wound or sore to get something trapped in it, no?
posted by mippy at 3:12 PM on May 9, 2011 [2 favorites]

Excellent recent article on Morgellon's and other forms of delusional parasitosis over at Science Based Medicine. And an older one, at SBM's sister blog NeuroLogica.
posted by overeducated_alligator at 3:13 PM on May 9, 2011 [5 favorites]

It;s a very even handed article I think. It's easy to sneer, given that the fibres turn out to be everyday ones adhering to minor scratch wounds, but these are people in distress. They are suffering uncomfortable itching - whether it's dermatological, neurological or psychological in origin.

Sneer away at the people piling on to promote their favourite conspiracy theories though. Only a few comments in under the Guardian article and already chemtrails are being blamed.
posted by spectrevsrector at 3:16 PM on May 9, 2011 [2 favorites]

Lint != Nanobots

(unless your nanobot standards are really, really low)
posted by benzenedream at 3:18 PM on May 9, 2011 [3 favorites]

This particular form of DOP is thought to be unique, in that it's spread through the internet. Whereas in the past, episodes of mass hysteria were limited to small communities – perhaps the most famous being the witch panic in Salem, Massachusetts in the 1690s – today, imagined symptoms can spread much farther on the web.

If this is true, is it maybe being irresponsible to post about or discuss this topic? How many people will come down with Morgellon's just from reading this Metafilter post? I actually am starting to feel itchy already!
posted by Pants McCracky at 3:20 PM on May 9, 2011 [1 favorite]

I won't even pretend to know what this all is, but those lesions are freaky and would have me freaked, fibers or no. Especially with my anxiety and tendency to pick at things (low level dermatillomania).

I also know that it took years for the doctors i saw to diagnose my depression and other issues. They still haven't found anything that would help my migraines that make me have the auras that obscure my vision (even got told by one that it was "all in my head", as in made up). They then went on to prescribe drugs that didn't help, and were hundreds of dollars for a few pills. This has lowered my opinion of doctors in general, to where i feel they are mostly lazy and don't really care to solve anything, more so if it's not something simple.

Even if it's all mental, the people deserve help, not derision and mockery. It's not really that much different than making fun of developmentally disabled or people with mental illness.
posted by usagizero at 3:20 PM on May 9, 2011 [2 favorites]

not derision and mockery

I wonder if it's a fine line between derision and mockery of sick people, and scorn for those who take advantage of sick people (Wakefield, et al)? Do I have to avoid the latter if I want to avoid the former?
posted by muddgirl at 3:24 PM on May 9, 2011 [3 favorites]

I find this article and post really interesting in conjunction with the post about trypophobia last week, with all the body horror and the Surinam toad and lotus boob and the like. I know I scratched myself red after watching that video from the suggestive itching and it had nothing to do with nanobots or aliens, just my mind messing with me.

(Which is not to say there's not an unknown cause for morgellons, just that I had a serious psychosomatic reaction to the trypophobia stuff that this post made me think about.)
posted by immlass at 3:25 PM on May 9, 2011

(Admittedly, reading the article made me slightly hypochondriac too. I am a sufferer of dermatillomania, and this is a weird cause and effect thing - more picking equals more spots and lumps - but now I secretly wonder if the ones that haven't healed are made by tiny nanobots. NANOBOTS.)

I made the mistake of watching something on the human botfly. Don't google that if you don't know, especially pictures and video. I "know" it's not those, but there is always that initial fear when i feel an especially large or odd feature on my skin.
posted by usagizero at 3:25 PM on May 9, 2011

Sure Morgellons is an epidemic.... lots of people get lint stuck in their scabs. It's completely nonfatal and has been going on for eons.

Unlike gangstalking and targeted individuals, which isn't so much an epidemic as THAT DUDE IN STARBUCKS TOTALLY HAD CAMERAS HIDDEN IN HIS EYES TO RECORD MY MOVEMENTS WHY ELSE WOULD HE BE THERE EVERY MORNING THINK ABOUT IT!!!!!!!!!!
posted by Afroblanco at 3:26 PM on May 9, 2011 [2 favorites]

I'm in the minority of people who, when faced with a botfly video, can only think of how satisfying it must be to pull one of them things out of yourself, then follow those thoughts down the rabbit hole to that inevitable point when I say to myself, "I wish I had a botfly."
posted by infinitywaltz at 3:28 PM on May 9, 2011 [25 favorites]

It must be possible for an open wound or sore to get something trapped in it, no?

My lab partners and I looked at a scab from my elbow under a microscope in high school. The wound was incurred by a glancing jab from a cross-country ski pole that cleanly tore my anorak. At the time the shirts I wore were pretty much exclusively LL Bean flannel button-downs (hey, it was northern New England AND the early 90's).

Under the microscope that scab was hairier than a malmute-- there was green synthetic fiber from the anorak, a rainbow of more ragged threads presumably from the plaid shirts I'd been wearing since the accident as well as actual hairs (either from me or my cats/dog). There were also a couple of broad things with ragged edges that I couldn't figure out. But I'm sure they were normal contents for some kinda-gross hippie teen.
posted by Mayor Curley at 3:29 PM on May 9, 2011 [6 favorites]

Hate to be that doctor from Pontypool, but the internet at large should really stop talking about this.

If, you know, because we just can't help ourselves, we let it continue I wonder if the DoP would begin take on more of a life of its own than it already has? Would the aggregate symptoms start appearing rather than each individual case's symptoms? Would the direction of 'treatments' start to go down a fixed track? Could the 'its not DoP' response be seen as a sort of survival instinct for the condition?
posted by Slackermagee at 3:29 PM on May 9, 2011 [2 favorites]

These are threads and fibers and lint from clothes trapped in open wounds. Unfortunately, our clothes all have nanobots in them, now. Nanobots who are only trying to do their jobs: repair our clothes at any cost. Is it their fault that the only materials at hand from which to reknit our sweaters are human cells? Won't somebody think about the poor nanobots? Everytime we pick at our wounds, they have to start the damn sweater over from scratch! So to speak.
posted by It's Raining Florence Henderson at 3:29 PM on May 9, 2011 [2 favorites]

Hate to be that doctor from Pontypool,

I'd hate to be him too, or pretty much anyone in that town. (Movie town was bad off, book town... beyond screwed) ;)
posted by usagizero at 3:31 PM on May 9, 2011 [1 favorite]

I read that article the other day and I was itching and scratching by the end of it...

And I've had the odd weird skin reaction over the years but I'm putting that down to allergies to a few specific products (anti-perspiratants, washing powders) rather than some alien nano-whatsits.... unless the manufacturers are putting them in. Wait a minute...?
posted by fearfulsymmetry at 3:31 PM on May 9, 2011

muddgirl: "I wonder if it's a fine line between derision and mockery of sick people, and scorn for those who take advantage of sick people (Wakefield, et al)? Do I have to avoid the latter if I want to avoid the former?"

The interesting thing is that there is no contradiction here at all.

The people taking advantage of the mentally ill by telling them that their problems are real ("and I can fix them with my mumbo jumbo for a low low price!") rely on the stigmatization of mental health problems in order to make their con work. If you agree with them, really agree with them that your problem is physical and not one of those contemptible mental problems, then you can prove it by ponying up the money...

So the solution is to point out that the people exploiting them are simultaneously ripping off the mentally ill and profiting off of and encouraging scorn for mental illness.

In terms of their victims, it is important to be able to be compassionate without being condescending, and to try to understand the position they are in in a humane way. But in terms of the people exploiting them, the solution is pretty simple.
posted by idiopath at 3:32 PM on May 9, 2011 [9 favorites]

Reading the article made me itchy.
posted by rtha at 3:35 PM on May 9, 2011 [7 favorites]

Read an article on delusionery parasites... rather sad when the skin specialist has to discretely refer them to a psychiatrist. Sometimes they'll bring the offending bug in a match-box and it was turn out to be a bit of fluff, or a speck of blood or something.
posted by fearfulsymmetry at 3:37 PM on May 9, 2011

Not being a fucking asshole about mental health problems would do a lot toward making sure people with mental health problems got proper and compassionate people.

I don't think the scorn your seeing is scorn towards the mentally ill, but scorn towards the media and communities that encourage the mentally ill to think of their problems as Morgellons or Gang Stalking instead of good 'ole mental illness -- which there is often actual treatment for.

It's the same way I feel about sites that promote anorexia as a viable lifestyle. Or homeopathy as valid medicine. Or vaccines as a cause of autism. Basically, dangerous bullshit that gets propagated because the internet makes it easy for the deluded to delude each other, and because the media makes money by showcasing sensationalistic claims.
posted by Afroblanco at 3:37 PM on May 9, 2011 [18 favorites]

There was a good post on here about itching a couple of years ago, that seems relevent to this.
posted by dng at 3:40 PM on May 9, 2011

Sometimes they'll bring the offending bug in a match-box and it was turn out to be a bit of fluff, or a speck of blood or something.

Dermatologists actually refer to that as "the matchbox sign" and consider it a characteristic predictive sign of delusions of parasitosis.
posted by infinitywaltz at 3:41 PM on May 9, 2011

There's a pretty good psychological horror movie that's about this: Bug with Ashley Judd and Micheal Shannon.

Watching it kind of cured me of those thoughts because it takes the low level paranoia to the extreme.
posted by lumpenprole at 3:43 PM on May 9, 2011 [2 favorites]

But I think it becomes more complicated, Afroblanco, in those cases that are a mix of DoP and and untreated itch disorder? Or like my father, who had to fight for years to get a workable diagnosis beyond "The fact that you've been sleeping 23 hours a day and getting skin lesions is 'just' depression."

In other words, when our own medical practitioners sees mental illness as a dumping ground for symptoms that they can't explain (the classic brain/body barrier that I stopped believing in a long time ago) ... where do we go from there?
posted by muddgirl at 3:44 PM on May 9, 2011 [1 favorite]

I wonder how many of these people are taking speed or ritalin or something similar.
posted by empath at 3:45 PM on May 9, 2011 [2 favorites]

I recently got a little USB illuminated microscope, 400X. I'll tell you, everything is pretty gross. Telephone keypads, in particular, have tiny hairs on them. Seek and ye shall find.
posted by StickyCarpet at 3:49 PM on May 9, 2011 [2 favorites]

Dr Anne Louise Oaklander, associate professor at Harvard Medical School and perhaps the only neurologist in the world to specialise in itch ... surmises that itch evolved as a way for humans instinctively to rid themselves of dangerous insects. When a mosquito lands on your arm and it tickles, this sensation is not the straightforward feeling of its legs pushing on your skin. It is, in fact, a neurological alarm system; one that can go wrong for a variety of reasons – shingles, sciatica, spinal cord tumours or lesions, to name a few. In some cases, it can be triggered, suddenly and severely, without anything touching the skin.

This, Oaklander believes, is what is happening to morgellons patients. "That they have insects on them is a very reasonable conclusion because, to them, it feels no different from how it would if there were insects on them. To your brain, it's exactly the same. So you need to look at what's going on with their nerves. Unfortunately, what can happen is a dermatologist fails to find an explanation and jumps to a psychiatric one."

That's not to say there aren't some patients whose problem is psychiatric, she adds. Others still might suffer delusions in addition to their undiagnosed neuropathic illness. Even so, "It's not up to some primary care physician to conclude that a patient has a major psychiatric disorder."

From the linked article. It might be of interest.
posted by Grangousier at 3:50 PM on May 9, 2011 [6 favorites]

God almighty, The Guardian's headlong rush to become just another cack-peddling shiterag appears to be continuing unabated.
posted by Decani at 3:50 PM on May 9, 2011

Maybe worth noting that the first usage of "Morgellons" seems to be by Thomas Browne - there's a plain text version here, though I can't get that to load right now. This is from "Letter to a Friend" (1690), where Browne is attempting to cheer up a friend who lost a friend. Browne tends to ramble, but he's always entertaining.
posted by with hidden noise at 3:53 PM on May 9, 2011

I thought it was an interesting, thoughtful article, as was The New Yorker article on itching. Which, as reported, makes me itch really badly.
posted by muddgirl at 3:53 PM on May 9, 2011 [1 favorite]

God almighty, The Guardian's headlong rush to become just another cack-peddling shiterag appears to be continuing unabated.

I think they did a fair job. They treated the issue with respect, but presented enough evidence to debunk it as a phenomenon. I would rather this than a newscomic get their hands on it.
posted by Jehan at 3:58 PM on May 9, 2011 [1 favorite]

I found this Jezebel post from 2008 interesting, in that it suggests that Morgellons is dismissed as a delusion because "almost all sufferers are women." I suppose this could be true, or could it be the case that, because doctors dismiss unusual ailments reported by women as hysteria, this actual hysteria being dismissed as a hysteria leads women to believe it's a real physical malady, since their other genuine physical maladies are dismissed as hysteria?
posted by Pants McCracky at 3:59 PM on May 9, 2011

benzenedream: "Lint != Nanobots"

That is exactly what the nanobots want you to think, my friend.
posted by gingerbeer at 4:01 PM on May 9, 2011 [4 favorites]

Maybe worth noting that the first usage of "Morgellons" seems to be by Thomas Browne

Well... that's a bit of circular logic there. The modern manifestation of whatever-it-is which is currently called "Morgellons" was named after the description found in Thomas Browne. Whether there's any connection between what he was talking about and the modern condition remains to be assessed.

Interestingly, Joni Mitchell (yes, that Joni) has basically withdrawn from her music and art careers because she feels she's developed Morgellons.

I have to say, I'm a bit taken aback by the assertion that gang stalking is akin to mental illness, as I was a victim of workplace bullying/mobbing a few years ago, and was actually keeping notes to make sure I wasn't suffering some kind of paranoid psychosis. The lawyers I eventually ended up talking to said I had a strong case, but none of them would take it on pro bono, and by the time you've quit your job after having been forced out by having most of your coworkers make your life so unpleasant that you can't stand to work there anymore, you pretty much don't have the money to pay a lawyer to fight even for hostile workplace unemployment compensation.

(Not saying that people don't imagine gang stalking... but it may be going on more often than not when people assert it is, and to give it a blanket dismissal as mental illness is appalling to me.)

Whatever's going on with the people who feel they have fibers growing inside their bodies, I hope they figure out what is actually happening and give them some treatment. Whether it's mental illness or something else, people shouldn't have to live their lives in physical suffering, which is what Morgellons sufferers endure daily.
posted by hippybear at 4:02 PM on May 9, 2011 [3 favorites]

They treated the issue with respect
posted by Jehan at 11:58 PM on May 9

Precisely my problem.
posted by Decani at 4:02 PM on May 9, 2011

I find it very interesting how many people who read about this report about how doing so makes them itch.
posted by It's Raining Florence Henderson at 4:03 PM on May 9, 2011

Well... that's a bit of circular logic there. The modern manifestation of whatever-it-is which is currently called "Morgellons" was named after the description found in Thomas Browne. Whether there's any connection between what he was talking about and the modern condition remains to be assessed.

Should have made this clear - that's what I meant!
posted by with hidden noise at 4:05 PM on May 9, 2011

Part of what's sad about Morgellon's is the victims have nothing exterior to blame. It's not like "electrosensitives" who are convinced cell phones and wifi nodes are to blame for their illness. Morgellons seems to be unfocussed, some generic technological invasion of the skin. It must be very weird to feel infected and not be able to ascribe the infection to any source.

I'm also reminded of Todd Haynes film Safe (trailer) about a woman who becomes convinced she is allergic to her environment. It's heartbreaking.
posted by Nelson at 4:06 PM on May 9, 2011 [1 favorite]

It seems that there's this assumption that if you are not engaging in proven medical practices, then you are a charlatan who is knowingly exploiting the person who is sick. In my experience, most healers believe in the "illness" they are treating, as well as the treatment they are using. Even if their treatment is wholly ineffective, they intend for it to work.
posted by Deathalicious at 4:07 PM on May 9, 2011 [1 favorite]

To be fair, Joni Mitchell has always seemed a bit crazy. The laugh at the end of "Big Yellow Taxi" is not that of a sane woman.
posted by leotrotsky at 4:08 PM on May 9, 2011 [2 favorites]

Weirdly, I was just thinking about Morgellon's disease this morning, and wondering if people were still showing up with it.
posted by gingerbeer at 4:11 PM on May 9, 2011

In my experience, most healers believe in the "illness" they are treating, as well as the treatment they are using. Even if their treatment is wholly ineffective, they intend for it to work.

And in their belief, they are that much more convincing to those who value sincerity over efficacy. I am not convinced that being a well-meaning, sincere charlatan is any better than being a conniving, deliberate charlatan. Except, I suppose, the well-meaning, sincere charlatan gets to feel good about themselves when they spend their victims' money.
posted by It's Raining Florence Henderson at 4:13 PM on May 9, 2011 [6 favorites]

I recently got a little USB illuminated microscope, 400X. I'll tell you, everything is pretty gross. Telephone keypads, in particular, have tiny hairs on them. Seek and ye shall find.

Exactly.
posted by lumpenprole at 4:16 PM on May 9, 2011 [1 favorite]

Reading Joni Mitchell's insane ramblings about the disease was way more upsetting than the possibility that there are malicious nanobots designed by aliens crawling around under peoples' skin.
posted by clockzero at 4:17 PM on May 9, 2011

I don't want to derail, but I just tried to find an evenhanded explanation of gang stalking, and came up with this pretty thin post.

Does anyone have any links that explain the the concept in more depth? Very reminiscent of the way paranoid schizophrenics I've worked with describe their lives, but I'm interested in the online community aspect of it. Really interesting google search, but very little info.
posted by kittensofthenight at 4:20 PM on May 9, 2011 [1 favorite]

I read about an East Indian physician, who teaches that humans host more foreign organisms than they have cells of their own. The cause of some disease is an imbalance of our predators.

I think that we have bathed this country with pesticides and herbicides and fungicides and mutated our predators to the extent they are different, and manifest differently. It is possible a fungus, has made a new fruit that attaches to nerve cells. Then we scratch, and send it out into the environment.

We also import many goods, fabrics, fibers, fruits, and vegetables from areas that Americans don't frequently travel. In all of this there may be new variations of what were once, benign micro species.

If there is a 97% correlation between Morgollon's itching, and Lyme disease, how much evidence do you need? It takes a long course of Doxycycline (or however you spell that) to get rid of Lyme disease, but it is well worth getting rid of. Doxycycline is cheap!
posted by Oyéah at 4:25 PM on May 9, 2011

I have to say, I'm a bit taken aback by the assertion that gang stalking is akin to mental illness

Don't think we're referring to the same thing. The gang stalking I'm talking about can be found here, and yes, it is evidence of teh crazy.
posted by Afroblanco at 4:29 PM on May 9, 2011 [2 favorites]

Precisely my problem.

Had the writer directly attacked or insulted those claiming to suffer from the condition then the ultimate dismissal would have been less effective. The respect shown is also to the readers, helping them come to the desired conclusion rather than telling them the answer. The paper could have chosen not to cover the issue, but they did, and I feel their approach was fine. I would like to see more like this from the Guardian.
posted by Jehan at 4:31 PM on May 9, 2011 [1 favorite]

It seems that there's this assumption that if you are not engaging in proven medical practices, then you are a charlatan who is knowingly exploiting the person who is sick. In my experience, most healers believe in the "illness" they are treating, as well as the treatment they are using. Even if their treatment is wholly ineffective, they intend for it to work

Their intentions are little comfort to the people they promise they can cure, when the 'cure' fails to work.

The road to hell...etc.
posted by His thoughts were red thoughts at 4:34 PM on May 9, 2011

A couple of years ago, I had a little blemish that cropped up at one side of my mouth. I dabbed some gel on it, it started to heal, and I thought nothing of it.

But it didn't really heal. For weeks, I could get it to shrink by about 50%, but then it would come back. And it didn't really behave like a normal blemish; it itched, it would scab over a bit, but it never really came to a head. Nothing seemed to fix it. One night, while absently itching at it, I felt something... odd.

I made a beeline for the bathroom and, well, started to squeeze at it. What looked like the loop of a clear plastic filament suddenly popped out. I grabbed the tweezers and pulled out a plastic fiber about half an inch long. "OH MY GOD," I thought. "All the crazy people who think they have weird alien-threads-in-their-body thing either aren't crazy after all, or ARE crazy and I am one of them."

It was a little exciting, but mostly unsettling... I mean, I've spent most of my adult life getting diagnosed with various unexpected disorders -- have been called a zebra and a "walking New England Journal of Medicine article" -- and yet THIS is the thing that must remain unspoken?

So the the blemish promptly cleared up within a day or two. I wound up pretty much forgetting about it... until earlier this year, when I was at an appt. with my oncologist. I mentioned one of my abdominal sutures from my surgery in the fall had been bugging me by trying to come out through the skin rather than dissolving like it was supposed to, so my surgeon had performed a little minor in-office surgery and opened up the tissue to snip out the last threads himself.

"That happens fairly often," she said casually. "My mother-in-law had shoulder surgery a few years ago and the dissolving stitches just wouldn't quite dissolve. Several of them migrated their way out through the skin through these mysterious little blemishes that wouldn't go away for awhile. We all joked that she had --"

"-- Morgellons!" I yelped. And suddenly, I realized: my jaw surgery from 2004 had left behind a mouthful of stitches. One of them must have migrated from my gum line into my cheek and eventually out of the tissue, taking several years to make the journey. It was a relief to have figured out the puzzle, but also kind of a let-down. I guess my medical situation is so goofy that even the alien thread beings don't want to colonize me.
posted by scody at 4:34 PM on May 9, 2011 [99 favorites]

It is possible...

Shall we continue the list of possible things for which we have no evidence? It is possible that I have a quarter in my pocket. It is possible that I have a dime in my pocket. It is possible that my middle name is Fred. It is possible that I have no middle name. It is possible that I have no pockets. It is possible that it is exactly 74 degrees in this room as I type. It is possible that I believe it is exactly 74 degrees in this room, but the thermostat is not correct. It is possible that a station wagon just drove by...

It is possible that these people have an as yet undiscovered physical ailment. It is possible that they don't. It is possible that some of them do, and some of them don't. It is possible that if some of them do, they actually suffer from different ailments.

how much evidence do you need

Any?
posted by It's Raining Florence Henderson at 4:34 PM on May 9, 2011 [7 favorites]

It is possible that I have a quarter in my pocket. It is possible that I have a dime in my pocket.

Thief! Thief! Thief! Hensersons! We hates it, we hates it, we hates it forever!
posted by hippybear at 4:39 PM on May 9, 2011 [6 favorites]

I gave it to Frodo. Knock yourself out.
posted by It's Raining Florence Henderson at 4:41 PM on May 9, 2011 [1 favorite]

Reading the article made me itchy.

Same here! No fibers yet though.
posted by cell divide at 4:42 PM on May 9, 2011

I've been amused that Drew of Toothpaste for Dinner has never let this one go.
posted by fiercecupcake at 4:43 PM on May 9, 2011

OMG!!! They're being transmitted through the Internets! I knew all those tubes couldn't be trusted!
posted by It's Raining Florence Henderson at 4:44 PM on May 9, 2011

I did follow the http://www.morgellonsexposed.com/, and learned something very useful from it: having "sex" in the URL isn't enough to get a site blocked by our work filter. Good to know!
posted by Halloween Jack at 4:44 PM on May 9, 2011 [2 favorites]

I actually am starting to feel itchy already!

I don't know if there's any science to back this up, but in my experience, itching can be caused by the mere mention of itching, much like including the word 'yawn' in this sentence might cause many reading it to yawn.
posted by Sys Rq at 5:10 PM on May 9, 2011 [1 favorite]

Reading Joni Mitchell's insane ramblings about the disease was way more upsetting than the possibility that there are malicious nanobots designed by aliens crawling around under peoples' skin.

Exactly. What a sad end to such a brilliant career. It's devastating.
posted by jokeefe at 5:12 PM on May 9, 2011

IT IS NOT FRIDAY!
posted by clavdivs at 5:18 PM on May 9, 2011

Scody:

Whoa.
posted by whimsicalnymph at 5:33 PM on May 9, 2011

I listened an interview with Andy Dick on Marc Maron's WTF podcast that has had me think about the stigma attached to some diseases. Basically, while Dick admits that he has a drinking problem, he's reluctant to attach the word "alcoholism" to it, because people ridicule him on the basis of having what he would otherwise agree to call a disease. He asked why, if something is a disease do we make fun of the people who have it?

"Dammit, Otto, you're an alcoholic!"
"Dammit, Otto, you have lupus!"

He stole that joke from Mitch Hedberg.
posted by drjimmy11 at 5:33 PM on May 9, 2011 [1 favorite]

If it's not psychosis, then a quick run to a GC/MS lab with nicely cleaned morgellon's fibers/grit and a quick comparison with the peaks from bacteria/viruses and the patients ought to be convinced the materials are inorganic.

Of course, I suppose this would only forward the hypothesis that this is some sort of alien implant.

Insofar as a patient is unwilling to accept a diagnosis less exotic than aliens/exceedingly elusive parasites I see no reason a physician ought to consider anything but psychological or neurological diagnosis.
posted by Matt Oneiros at 5:40 PM on May 9, 2011

Since I am totally not a doctor:

Have neurologists looked into this level of intense itching as something like phantom-limb syndrome? I read somewhere that olfactory hallucinations should be checked out since they could indicate a brain tumor, and maybe Morgellons has a similar sort of cause?
posted by ntartifex at 5:48 PM on May 9, 2011

Itching is a very weird thing. A few years ago, out of the clear blue sky, I had a sudden intense itching attack over half my body. It only lasted 5 or 10 minutes but I seriously thought I would kill myself to make it stop. Then it went away. It freaked me out a little and made me think how crazy it would make you if something like this went unchecked.
posted by bongo_x at 5:53 PM on May 9, 2011

Probably allergies from pollen, bongo_x.
posted by clockzero at 5:58 PM on May 9, 2011

♪♪They paved paradise and put up a nanobot♪♪
posted by dr_dank at 6:00 PM on May 9, 2011 [10 favorites]

Insofar as a patient is unwilling to accept a diagnosis less exotic than aliens/exceedingly elusive parasites I see no reason a physician ought to consider anything but psychological or neurological diagnosis.

I see one. Physicians are culpable for sending patients searching for exotic diagnoses, when they don't take the time to listen, to consider, and to explain. They're the ones who have been to medical school for a million years, they're the scientists...so if you come with a question, you expect some kind of answer, or at least the pursuit of an answer. So why is it so hard to find a doctor who does that?

I don't want to be all axe-grindy about this, but really. How many of these folks went to a doctor, or two, or five, and received nothing but "that's eczema, put some cream on it"? Without any explanation of what might be causing their itching, or what they could do long-term about it? I kept seeing things in the story about multiple baths a day...did no doctor take the time to ask them how often they were bathing, the temperature of the water, and explain the drying effect that might have? The poor woman putting bleach on her skin, surely someone should be stopping her from that. And psych meds? Is there any more obvious symbol that a doctor feels you've wasted his time?
posted by mittens at 6:03 PM on May 9, 2011 [2 favorites]

It seems that there's this assumption that if you are not engaging in proven medical practices, then you are a charlatan who is knowingly exploiting the person who is sick.

If you're not sure if someone is a charlatan, here is a quick decision tree to help you figure it out: A) Who are they billing, B) how much are they charging and C) how informed are their patients?

The patient, an ass load, not well informed = A charlatan.

No one, nothing, not well informed = Joseph Mengele.

The patient, very little, well informed = Desperate but well meaning.

My Corporate Masters, an ass load, well informed = The head of a clinical study.

My Corporate Masters, very little, well informed = Non-existent.
posted by Kid Charlemagne at 7:12 PM on May 9, 2011 [4 favorites]

Also 600C is not that hot. An aluminum shaving, for example, would have to get about 60 degrees hotter to melt.

cmoj, 600c is "that hot" for organic fibers.
posted by IAmBroom at 7:16 PM on May 9, 2011

Mittens, key phrase "if the patient is unwilling to accept a diagnosis less exotic than..."

You say:
"I kept seeing things in the story about multiple baths a day...did no doctor take the time to ask them how often they were bathing, the temperature of the water, and explain the drying effect that might have?"

This is a less exotic explanation, if the patient refuses to accept this as a possibility...
posted by Matt Oneiros at 7:21 PM on May 9, 2011

I represented a woman who had told her previous lawyer that her ex was stalking her and was out to kill her. Among the things he did to her was send her poison faxes.

Yes, poison faxes.
posted by flarbuse at 7:24 PM on May 9, 2011 [3 favorites]

Thanks a lot, Metafilter. Now I'm itchy as fuck.
posted by Krazor at 7:49 PM on May 9, 2011 [1 favorite]

Thanks a lot, Metafilter. Now I'm itchy as fuck.

No, no, no. You're doing it all wrong.

"MetaFilter: Thanks a lot. Now I'm itchy as fuck."
posted by The Bellman at 8:10 PM on May 9, 2011 [1 favorite]

The compulsive showering may be involved somehow. It's been shown that showering too much actually damages your skin and causes sores. A minor itch, a suggestible mind, and lots of showering (in bleach!) would do in the resistance of anyone's skin.
posted by texorama at 8:24 PM on May 9, 2011

Plus, everyone knows alien nanotechnology is waterborne, duh! Preserve your precious bodily fluids, people!

But seriously, he has sores in a part of his back he can't reach? Maybe it's 'cause he hasn't been washing there. Just a thought.
posted by Sys Rq at 8:42 PM on May 9, 2011

But seriously, he has sores in a part of his back he can't reach? Maybe it's 'cause he hasn't been washing there. Just a thought.

...maybe the nanobots are scratching for him!
posted by vorfeed at 8:47 PM on May 9, 2011

Wikipedia:

Formication is the medical term for a sensation that resembles that of insects crawling on (or under) the skin. It is one specific form of a set of sensations known as paresthesia, which also include the more common prickling, tingling sensation of "pins and needles". Formication is a well-documented symptom that has numerous possible causes.

The experience of formication may sometimes cause feelings of itchiness, tingling, pins and needles, burning, or even pain. When it is perceived as itchiness, it may trigger the scratch reflex and because of this, some people who are suffering from the sensation are at risk of causing skin damage through excessive scratching. More rarely, susceptible individuals who fixate on the sensation may develop delusional parasitosis, becoming convinced that this sensation is being caused by actual insects, despite repeated reassurances from physicians, pest control experts, and entomologists.

The term is derived from formica, the Latin word for ant.
posted by ovvl at 9:14 PM on May 9, 2011

The term is derived from formica, the Latin word for ant.

Well, that explains the problem in grandma's kitchen.
posted by Sys Rq at 9:22 PM on May 9, 2011 [1 favorite]

Speaking of etymology, I always assumed that formica used formic acid at some point in the synthesis hence the name, and why it would up being the same as the latin word for ant. Apparently it's just a coincidence, and the name actually derives from the description of the product as "a substitute for mica".
posted by Grimgrin at 9:51 PM on May 9, 2011 [4 favorites]

Don't you mean, "speaking for antymology"?

Thank you folks. I'll be here all week. Don't forget to tip your server.
posted by hippybear at 9:59 PM on May 9, 2011 [2 favorites]

This immediately made me think of China Mieville's short story, Entry Taken From A Medical Encyclopaedia (also published as Buscard's Murrain).

From Wikipedia:
Taking, as the title suggests, the form of an encyclopedic entry on a disease, the story describes a strange disease known as Buscard's Murrain (also, "Wormword"). The disease is contracted entirely via uttering of a certain word (which the story gives but never reveals its proper pronunciation). The disease causes insanity and the need to repeat the word over and over to large crowds. This sometimes causes spectators to repeat the word and thus becoming infected themselves.

I was actually a little afraid to keep on reading the article as I was afraid that the meme would somehow burrow itself into my psyche and cause me to contract the disease.

Then I realized that I'm awesome and I never get sick, ever.
posted by Telf at 10:13 PM on May 9, 2011 [1 favorite]

I used to work with a woman who claimed to have Morgollons. I could never get over the fact that, though she claimed to have this horrible disease, she also ate out for lunch every day and then microwaved her leftovers in styrofoam clamshells. Proves that you care about what you care about, I guess.

I guess my medical situation is so goofy that even the alien thread beings don't want to colonize me.

Scody, any alien would be lucky to have you.**

**Comment heavily edited, and originally read as "Scody, if I were an alien, I'd sooo colonize you first!" And that didn't come out quite right. But it's true. In a non-creepy way.
posted by mudpuppie at 10:41 PM on May 9, 2011

This reminds me of a video I saw a long while ago about a bacteria that would attack and eat metal medical implants in humans. This bacteria would then eat away at the biological tissue and leave behind metal deposits. People had half their bodies eaten away leaving behind spiky metal around the voids.

Of course it was all special effects, but it was incredibly creepy.

What creeps me out more than the possibility that this is a real physical disease is how otherwise sane seeming individuals can on closer inspection be totally insane.

I met a woman today who seemed like a well-to-do retiree. We talked about weather and sports and it was a pleasant conversation, up until the point where she explained how she had to buy a new prepaid cell phone every week because her husband would get inside them and control them and track her. I tried to explain to her how that would be close to impossible but she absolutely believed that this guy could somehow figure out when she bought a prepaid cell phone, in cash, and then somehow infiltrate it and track her and listen in on her phone calls. Never mind that if he could track her purchases, he wouldn't really need to track her cell. ( I really didn't want to suggest that maybe she has a gps tracker implant, because I didn't want to fuel her crazy). Anyway, my point is, that just because some of these people seem reasonable doesn't mean they're not crazy. (Sorry, I don't know the politically correct word for crazy)
posted by runcibleshaw at 10:48 PM on May 9, 2011

Also 600C is not that hot. An aluminum shaving, for example, would have to get about 60 degrees hotter to melt.

I can bring in another conspiracy theory here! Those metallic fibers may be the result of geoengineering experiments by the US government.

(Which I believe in a lot more than I believe in Morgellons.)
posted by subdee at 11:00 PM on May 9, 2011

(Goood, my secret plan of getting someone to find that video for me without using an AskMe worked. Muahahaha.)

Not quite as creepy as I remember. I guess the effects seemed less obvious to me when I originally watched it.
posted by runcibleshaw at 11:39 PM on May 9, 2011

They're the ones who have been to medical school for a million years, they're the scientists...so if you come with a question, you expect some kind of answer, or at least the pursuit of an answer. So why is it so hard to find a doctor who does that?

I don't want to be all axe-grindy about this, but really. How many of these folks went to a doctor, or two, or five, and received nothing but "that's eczema, put some cream on it"? Without any explanation of what might be causing their itching, or what they could do long-term about it?

First of all, the reason med school takes a million years is because there is a shit ton of stuff you have to learn. You cannot just impart that knowledge to someone who's latest encounter with even basic chemistry or biology was 40 years ago in highschool in 15 minutes.
You seriously expect an immunology course for your eczema flare up? Than google it, you don't need a doctor for it. Otherwize, just put some of that damn cream on it already.

Secondly, have you even considered the likelyhood of success convincing a victim of alien nanobot attack that he has eczema?
posted by c13 at 12:28 AM on May 10, 2011 [1 favorite]

A lot of GPs don't know what to do with eczema, because it doesn't have a definite cause, there are all kinds of triggers, including psychological/stress. It's like migraine - non-migraine sufferers, if they had one, would be convinced they were having an aneurysm as nothing can hurt that much without there being Serious Problems. Yet, again, people largely don't know what it is.

The stories of sufferers make interesting reading. Regardless of whether this is real or not, there's a Repulsion-esque flavour to them which tells me that these people really are sick.
posted by mippy at 1:44 AM on May 10, 2011

A lot of GPs don't know what to do with eczema, because it doesn't have a definite cause, there are all kinds of triggers, including psychological/stress.

Exactly. So how could you explain all these nuances to an average American that reads at an 8th grade level? In the few minutes you have available?
22% are functionally illiterate, and 27% are marginally literate...
posted by c13 at 2:00 AM on May 10, 2011 [1 favorite]

On NPR the other day, I learned that how many viruses there are, how many bacteria they kill in the ocean each day, and how many live in each of our bodies. (Transcript)

It is possible to get all tripped-out over this stuff. A doctor (not *my* doctor) once told me that students in medical school often become -sure- that they're suffering from the diseases they're studying. The 'dis-ease' goes away when they move on to something else.

And now the answers:
* If you had a lot of spare time and you want to stack all those viruses end to end, they would go about 100 million light years.
* Every day, viruses kill half the bacteria in the ocean.
* Four trillion

And you're worried about a few thousand -nanobots- ???
posted by Twang at 3:43 AM on May 10, 2011 [1 favorite]

Exactly. So how could you explain all these nuances to an average American that reads at an 8th grade level? In the few minutes you have available? 22% are functionally illiterate, and 27% are marginally literate...

I think that reasoning is why docs get to have it both ways: Elevated cultural status, because we all understand that they know something that we don't, and bought this knowledge at great personal price--but also jobs that are basically french-fry-fryer-technologist level, where they follow a simple flowchart and never think.

If you've got a patient with questions, then you don't get to say, Hey you read at an 8th grade level so your questions aren't valid. If the patient is concerned and wants to understand, you don't get to say, I've only got a couple minutes and besides you're illiterate. If you do that, you suck at medicine and should find another job.

That's the kind of attitude that pushes people into the waiting arms of the antiscience crowd...because those folks always have time, and they always have answers.
posted by mittens at 5:05 AM on May 10, 2011 [7 favorites]

hippybear: "Don't you mean, "speaking for antymology"?

Thank you folks. I'll be here all week. Don't forget to tip your server."

My server is many miles from here. Can I tip my hat in its general direction?
posted by Splunge at 5:32 AM on May 10, 2011 [1 favorite]

I've been misdiagnosed a couple of times myself - once scalp dermatitis was mistaken for headlice, which is an easy mistake to make due to the dandruff that happens; as a child, severe appendicitis was diagnosed as a combination of wind and being a big baby, which we realised was wrong when I went to A+E a week later and it burst on the operating table. I can completely see why some, especially in the age of Google and Symptom Checker, people don't feel that their doctor is taking their concerns the way they would prefer - especially with things that don't have a simple explanation. Hence 'Chinese medicine shops' appearing on high streets everywhere, where vulnerable people are pressure-sold into buying dubious herbs and powders.

GPs - how do you feel if someone comes into the office and mentions they've looked up their symptoms online? Does it make your heart sink, or has it ever been helpful?
posted by mippy at 6:20 AM on May 10, 2011 [1 favorite]

This is an interesting story for me because I've spent my adult life with chronic symptoms that could be related to a gazillion different underlying probelms and that are very hard to diagnose. I recently went through a period of almost two years of having debilitating fatigue that my doctor and I just could not figure out--we treated vitamin D deficieny and anemia, tested me for a million different things, and nothing made any difference. I was still exhausted all the time, could barely walk from one emd of my house to the other without feeling completely wiped out, could not stand for more than a few minutes, and was not able to be awake for more than 4-5 hours at a time. (It turned out to be side effects from Celexa and cleared up when I tapered off the drug, which leaves me with a mix of feeling relieved that I didn't really end up like that for the rest of my life, and frustration that my doctor didn't consider medication side effects during the 18-20 months I was seeing her regularly in an effort to solve this problem. But I digress.)

Anyway, I feel like I live in the neighborhood with people whose diseases are driven by their psychology, and who latch onto these crazy-sounding explanations for them. Because it's hard to have no explanation at all, and it's hard when the Miracle That Is Modern Medicine just doens't really have any idea how to help you.

Also, I itch a lot. When I saw an allergist a year or so ago, she told me that some people have cells that love to release histamines and will do it at the slightest provocation: a little heat, a little pressure, a tiny scratch. She demonstarted on me by gently drawing a line on my arm with the plastic cap of her pen, and then watching as a welt appeared. "See!" she said triumphantly. So, after years of trying to figure out if I was allergic to the elastic in my waistbands or had some kind of skin condition or was reacting to something in the environment, I find out that I have this completely known thing. The allergist said, "the treatment for it is basically to find an antihistamine that helps and stick with it," which is where'd I'd ended up on my own anyway. I've taken an antihistamine daily since at least 1988.

So I have sympathy for the itchy, and as I read this article I felt "There but for the grace of God go I." But I alsop wanted to give them all a little Benadryl every day for a month and see if that helped.
posted by not that girl at 7:32 AM on May 10, 2011 [5 favorites]

I bet the Church of Scientology could cure this!
posted by Theta States at 9:17 AM on May 10, 2011

not that girl, I have dermographia too! It sucks! I'm lucky enough that mine came on two weeks before my wedding, and then persisted through a honeymoon on a different continent, even after I washed my clothes in a different country's PFD detergent. Then, several months later, it continued to persist through a road trip that led me through many, many different environments. When I finally saw an allergist, he looked at those two things (which I thought to mention) and said "I want to test for dermographia" and gave me a prick of saline in one arm and pure histamine in the other. When they both reacted equally, he was like "Well there's your problem." (Daily Zyrtec ftw!)

Fibromyalgia is often treated better with antidepressants than with painkillers. Does that mean that fibromyalgeurs are making it all up because they're histrionic and depressed? I've known a couple people with fibro, and I say no. I was talking to a doctor who said that once she stopped saying "The best treatment for fibro is antidepressants" and started saying "Paradoxically, the best treatment for fibro is actually medication that's usually prescribed for depression," the willingness of her patients to try SSRIs shot up. Because, as she pointed out, just because it's treatable with mental health drugs doesn't mean the physical symptoms aren't real. Drawing a bright and stigmatized line between problems of mental health and problems of somatic health stops people from getting treated for either.
posted by KathrynT at 9:56 AM on May 10, 2011 [8 favorites]

What creeps me out more than the possibility that this is a real physical disease is how otherwise sane seeming individuals can on closer inspection be totally insane.

"Totally insane" is sort of a misleading phrase, though. I feel like generally speaking "crazy" is the gap between 100% sane and 99% sane. We all experience the world by processing a tremendous amount of input along a bunch of different input paths into givens and unknowns; crazy is just we call mistaking an unknown for a given or believing that for some bit of information about the world the given is the opposite of what the collective believes.

Alice believes that the sky is blue, that 2 + 2 = 4, that buildings are tall, that the radio is impersonal broadcast media, and a thousand other mundane things.

Bob believes that the sky is blue, that 2 + 2 = 4, that buildings are tall, that the radio is being used to persecute him through subtle coded language, and the same thousand other mundane things.

So Bob is wrong about the radio thing. And depending on how he deals with that weird obsession with the radio, maybe he's eccentric ("don't talk to Bob about the radio, he's got loony opinions") or maybe he's totally insane ("Bob got fired after he started shouting about the radio during a staff meeting and threw a chair") or maybe he just doesn't like listening to the radio when you carpool with him and seems overly pushy about it.

In the mean time, Bob's just a guy who agrees with totally sane Alice about almost everything else about the world, or disagrees only on acceptable unknowns.

Our brains are pattern-recognition machines; we parse input and make deductions and identify correlations and try to make sense of the world by finding information in the noise. For reasons experiential or neurophysiological or psychological we don't always end up with defensibly correct information, and a person ends up taking as a given something that is not a given at all. But the human brain is great at justifying and rationalizing a perception, and so while it's possible to react to "no, Bob, that's not so" with reflection and a revised view of what had seemed like a given, it's also possible to react by finding a way to rationalize that held belief, to insist it is so. And a hallmark of rationality itself is the ability to meet contradictory input with reasoning that shows why what is so is in fact so: why the odd smudge in the photo is not a ghost, why the three strangers who looked at you during your commute today is a coincidence, etc.

Considering how much time people whose sanity is not in question spend arguing over contradictory beliefs about the world, it's not surprising that someone with a specific odd tic in how their brain works regarding one subject or perception or deduction would be just as capable of digging in. But that's where we get crazy: you heartily believe the wrong sort of untrue or unknowable thing, or your constructed defense of that belief is too ornate. How other people react to that depends a lot on the thing and a lot on how that belief affects your outward behavior; if you're grumpy and don't talk about it, it's a non-issue, but if you talk about it with strangers at the bus stop you're totally insane.

I think people with Morgellons are delusional. I don't know why they are; whether it's purely a bad bug in human psychology manifesting from thin air in some unlucky people, or a delusional rationalization of an undiagnosed phantom-nerve thing, or a rationalization of a legitimate untreated skin condition, or some other damned thing: I don't know. The itch, a mystery but manifestly real to the sufferer regardless of why they experience it, isn't the problem; embracing a far-fetched and unjustified explanation is where it gets weird. Hopefully if there is any sort of consistent and treatable physical or neurological etiology underlying the whole thing, someone will figure that out and give these poor folks some relief, because no matter what brand of "crazy" we're talking about they're clearly suffering.

But in the mean time, these crazy folks are 99% sane. That's the goddamnable thing about it.
posted by cortex at 10:33 AM on May 10, 2011 [6 favorites]

I feel like generally speaking "crazy" is the gap between 100% sane and 99% sane.

Your optimism is endearing. But I don't think I've ever met anyone who I'd consider 99% sane. Least of all, me. I strive for 51% sane. Some day I'll get there. It's good to have goals. Meanwhile, I'm probably 3% saner than most of you crazy fuckers. At least I don't believe that the people on the computer monitor are actually talking to me!
posted by It's Raining Florence Henderson at 10:42 AM on May 10, 2011 [1 favorite]

I strive for 51% sane.

It is good to maintain a voting majority on the board.
posted by Theta States at 11:28 AM on May 10, 2011 [1 favorite]

I had a tendon suture from a finger surgery appear five years afterwards (during a college final). I saw a little blue thing on my knuckle, instinctively pulled it, and a three inch long piece of monofilament came out. Now that was something.

I have sympathy for sufferers of this, and CFS, and fibromyalgia, and the like. The line between mental and physical diseases is not even blurry; it doesn't even exist in some cases. It would be nice if there wasn't a stigma for all sicknesses that didn't have a tidy category and a binary diagnosis for, but that is a pipe dream.
posted by norm at 2:23 PM on May 10, 2011

A couple years ago, I was working at my desk and noticed what looked like an extra thick whisker sticking out of my elbow. I tugged on it, and it just kept coming out. It was creepy as hell, and I couldn't figure out what the deal was. Then that evening I was talking to my twin brother on the phone and he told me he'd had the strangest thing happen. He'd been sitting at his desk working when all of a sudden his sweater unraveled and completely disappeared.
posted by It's Raining Florence Henderson at 2:32 PM on May 10, 2011 [10 favorites]

I've diagnosed and treated people with delusional parasitosis, and once been followed along the street by a rather aggressive full-on Morgellon's case convinced that I was part of "the conspiracy". Some of the DPers seemed to have no obvious initial trigger except depression (by scoring), whereas a couple of them occurred in people with high, prolonged and continuous doses of stimulants (some for ADHD) and in whom sleep seemed to be disrupted. And one of them seemed to be a symptom of something flaring, like schizophrenia (given the prodromal pattern of his recent few years after further interviewing). For many of the non-stimulant-induced ones, there was a distinct overlap with OCDish tendencies within the patient and their families. I've met people who were pouring bleach in their ears, or scrubbing with toxic chemicals. Not good. It's also pretty contagious and people can sometimes convince others close to them of their "infection".

My sense of Morgellon's is that it's a dense delusion that's unfortunately becoming increasingly non-bizarre and often not directly attributable to "classic" frontal lobe psychosis and hence difficult to treat alone with typical or atypical antipsychotics. You need to either stop the stimulants, treat the underlying depression and try high-dose SSRIs, and treat it behaviourally: OCD mitigation tactics, stimulus avoidance, CBT/DBT, etc. Of course, convincing many of these people that there are no parasites is tricky and often requires repeated assurances, physical exams, and even mild courses of non-toxic cleaners and skin balms.
posted by meehawl at 3:09 PM on May 10, 2011 [2 favorites]

If you've got a patient with questions, then you don't get to say, Hey you read at an 8th grade level so your questions aren't valid. If the patient is concerned and wants to understand, you don't get to say, I've only got a couple minutes and besides you're illiterate. If you do that, you suck at medicine and should find another job.

Where did you see me saying anything about the validity of the questions? All I said was that there are some concepts that cannot be easily explained to anyone without any background knowledge and poor comprehention skills in a short amount of time. Especially for someone who's training is not in education.
Thank you for illustrating my point.

And dude, seriously, try at least getting accepted into a med school before blathering about what medicine should be like, mmmkay? Meanwhile, feel free to go to an acupunctionist next time you need an abdominal surgery. Or just google the procedure and do it yourself.
posted by c13 at 5:43 PM on May 10, 2011

And dude, seriously, try at least getting accepted into a med school before blathering about what medicine should be like, mmmkay? Meanwhile, feel free to go to an acupunctionist next time you need an abdominal surgery. Or just google the procedure and do it yourself.

Yay! My first Metafilter insult!

Look, I get your point. Telling people technical things is hard. Most patients aren't coming in with a lot of medical background knowledge. That's fine.

But I don't buy the lack of time, lack of ability to educate, all that, because I know docs exist who take the time to explain. A couple of months ago, I had a big cancer scare that ended with a half-hour talk with my doc; he explained what a granuloma is, where it was lodged in my lung, the fact that it probably didn't develop from the moldy house I just moved of, that it wasn't going to kill me, the whole bit. I had a few thousand frantic questions, and he answered them.

But just as contrast, we take my daughter to the pediatrician to see about her ongoing eczema, after years now of trying different steroid regimens, antihistamines, the whole bit, and wondering if maybe the diagnosis is wrong, if there's something simple we're missing (like, tinea or something, not deadly nanofibers). The pediatrician can barely take her eyes off her iPhone long enough to prescribe the same stuff they gave her last time. Then we're just stuck. Do we call another pediatrician and become doc-hoppers? Are we beginning the slow descent into people who won't be happy unless (insert Ancient-Sounding Asian-Sounding Regime here) is tried? Do we suck it up and put the damn cream on, and watch her scratch herself bloody, watch her behavior get crazier and crazier because she's so damned itchy all the time?

So, we doc-hop. Luckily there's another pediatrician at the same practice, and what does she do? Why, she takes the time to talk! To explain! Even the bad news--that we probably weren't going to stumble on a perfect antihistamine at her age, but should keep trying--was gratifying, because it was information. Something we hadn't known before. We're doing a steroid goo that has a few fewer ingredients than the other stuff, we're doing it intermittently, and it's getting better--better enough that when the last pollen burst hit and her skin went crazy, we were FINALLY able to really pin down the pattern. Which wouldn't have happened if no one had taken time to talk to us.

But, you know, it's all fraught. I remember taking studies into a doc, looking for help with an anxiety condition years ago, only to be told, not unkindly, that this was not the way we did clinical medicine...and then was prescribed yet another round of useless meds. You do that enough--try to stay informed, and get brushed off for it, and you really do start to feel like only the doc is allowed to have any knowledge, and he's not sharing.

It's frustrating. I trained as an educator, before moving to my current job working with docs all the time. I spend a good part of my day explaining weird policies and technologies to people who don't get it at first. I draw a lot of pictures and make a lot of analogies. I think understanding is a good thing. And I want to think everyone is like that. When people don't take the time to help you understand something, then yeah, it does feel like you're being told your question is invalid (even if that's not what you said up there, granted).

All of which gets away from the point of YIKES ALIEN FIBERS, I guess...but I doubt a lot of these people start at the YIKES ALIEN FIBERS point. Seems like getting there is a process, with a lot of room to nudge them in the right direction along the way.
posted by mittens at 7:49 PM on May 10, 2011 [4 favorites]

try at least getting accepted into a med school before blathering about what medicine should be like

That is really not a productive attitude to have toward communicating with non-doctors.

Sure there are some nut-bar patients out there who won't listen to anything you say, and those patients are memorable and doctors swap stories about them so they end up seeming like a disproportionate number of patients. But the majority of people are reasonable and will listen to reasonable explanations.

If you're a doctor or going to be a doctor, it's good to be able to give people reasonable explanations. It will make them more likely to take their medicine, more likely to come back (to you or any other doctor), more likely to trust you enough to tell you about that one uncomfortable symptom they are terrified might mean cancer so they've been trying not to think about it, etc. Knowledge helps people make better health decisions, rather than throwing up their hands and going to the witch doctors. Being a doctor is partly being an educator.
posted by LobsterMitten at 10:08 PM on May 10, 2011 [2 favorites]

But the majority of people are reasonable and will listen to reasonable explanations.

But we aren't talking about reasonable people here, are we? We aren't talking about people that, upon hearing that the crap in the matchbox they've got is just lint from the sweater and not an alien nanobot army, go "Wheww, Doc! You're right. Maybe I am just overreacting".
We're talking about people that will either argue with you or think you're in on a conspiracy. Because they educated themselves on the internet, and there's an article there that talks about some condition that produces some of the symptoms they have, so surely that's what they are afflicted with. Nevermind the source, the incidence, or even the fact that a symptom may be present in a zillion other conditions.

Look, I'm not advocating taking doc's recommendation as a word of god. They don't know everything, they make mistakes. Not everything IS known. I just don't get this whole physician as educator stuff. Why? Do you see pilots educating and explaining why and how they do things? And you trust them with your life a lot more than in GP's office.
Take this: they know something that we don't, and bought this knowledge at great personal price--but also jobs that are basically french-fry-fryer-technologist level, where they follow a simple flowchart and never think. and apply it to any other profession. How does that sound? Tell that to your automechanic next time your car craps out on you, see where that will get you.
Anyway, we're talking about fringes here. The wast majority of physicians make an effort to explain and answer all the questions the patient has. And a majority of patients find their experience satisfactory. But there are limits, and alien soda can nanotechnology lies far beyond them.
posted by c13 at 1:13 AM on May 11, 2011

How does that sound? Tell that to your automechanic next time your car craps out on you, see where that will get you.

So...wait, is it not just a common, natural assumption that everyone who performs a service for you, might explain the service--and even enjoy doing so--if you have questions? Our mechanic kept us at the shop FOREVER the other day explaining what a knock sensor was, why he didn't think it was a problem...I mean, he was really loving the chance to explain. His compatriots were rolling their eyes, and we even got an apology from the manager for his long-windedness...but I want EVERYONE to be like that. Yes, pilots too! "The sound you're about to hear is the wheels retracting safely into their little wheel-homes, and it will sound like kerchung, and those of you at the back might feel a vibration"...first-time flyers would probably be much calmer about it!

Ahhh...that's utopia. Now, let me tell you in some detail about my job. See, whe----
posted by mittens at 5:19 AM on May 11, 2011 [3 favorites]

I just don't get this whole physician as educator stuff. Why?

Because, in the pilot analogy, the patient is not just a passenger? A pilot's job involves knowing the technology to fly the plane from A to B, and the passenger comes along for the ride. That technology doesn't affect the passenger once the passenger gets off the plane. A doctor's job involves knowing the anatomy and body processes, and medicine and diagnostic equipment -- but a lot of those things DO affect the patient once they're out of the office.

I'm not saying doctors should be able to fully bring people up to speed on all of anatomy in a single visit or whatever, but explanations like "antibiotics only work on bacteria, not on other things. This disease is not caused by a bacterium because if it were, we would be able to grow the bacteria in a petri dish, but in fact nothing grew. So that is why I'm saying antibiotics won't work on this." are not that difficult. (And sure, I accept there will be some patients - maybe a lot of morgellons patients are among them - who won't accept an explanation like that.)

But the general point is - The patient is going to be making a lot of decisions about their body once they leave the doctor's office, and is going to be the one who decides whether to bring their body back to you when they have another problem (or whether to take it to the voodoo guy). So, basic knowledge about what works and what doesn't is really useful (should I ice this injury or heat it and why? which are the OTC drugs I need to be super-careful about dosage with, and which are more forgiving?), and giving a bit of explanation of the reasoning builds trust and a sense of being respected, which makes people more likely to come back.

I know every profession has its "bitch about the patients/clients/students/etc" culture, and I've been guilty of this too in my own work. But if you look at some of the AskMe questions from people who've had bad doctor visits and then are too scared to go back for years, it's heartbreaking. "I've lost vision in my right eye but I don't want to go to the doctor", it's scary. I know doctors and I think for some of them it's hard to remember what it feels like to be on the wrong end of that knowledge differential, how humiliating and awful it can be. (Sorry, the "try to go to med school before you criticize" remark brought all that to mind.)
posted by LobsterMitten at 11:50 AM on May 11, 2011 [3 favorites]

But we aren't talking about reasonable people here, are we? We aren't talking about people that, upon hearing that the crap in the matchbox they've got is just lint from the sweater and not an alien nanobot army, go "Wheww, Doc! You're right. Maybe I am just overreacting".
We're talking about people that will either argue with you or think you're in on a conspiracy.

I think this does describe some of them. But there are also people whom normal doctors have repeatedly failed. They go to the doctors; the doctors recommend actions that the patients know don't work or haven't worked. The patients try to inform the doctors and the doctors don't register it. When the patient sees the doctor again, often the doctor seems to have forgotten everything from before -- continues to suggest non-working solutions.

Worst of all is the implication that this is all in someone's head. First of all, how is telling someone that a resolution to their problem? If the problem is all in my hand, I can put a lotion on my hand, get some kind of surgery, or, in a worst case scenario, chop the darn thing off. If the problem is in my head, antidepressants or other similar medications may help, but often such meds take a long time to start showing effect, must be taken pretty consistently, and can have unfortunate side effects. And I am having real symptoms. Even if the cause is a messed up body-mind connection, my body is definitely involved.

Even if the problem is mental, the first step is not to convince the person that they are delusional. It is to treat them as someone who is trying to resolve a problem. Okay, so they have crazy itching sensations in their skin? Let's rule out things like dermographia, urticaria, and other skin disorders. Have them try a cycle of antihistamines. Give them a prescription-strength anti-itch cream and instruct them to wear long-sleeved clothing made of natural fibers (the purpose of this is to avoid exposure to possible skin allergens or irritants like synthetic fibers or sunlight, but also to reduce their scratching). Maybe, if they think a solution is being pursued, they will cut down on their scratching and their skin will heal. Rather than giving them a list of "don't"s, give them a list of "do"s: tell them to shower once each day, in the morning, using only lukewarm water and castile soap. This serves two purposes. First, again it avoids potential triggers like allergies to some fragrances or soap ingredients and heat. It also sets them on a pattern of behavior that's healthier for their skin. Tell them it's important that they stick to this ritual in order to factor out any other variables. Tell them if they use bleach or hot water or hundreds of wipes a day that it will be difficult to rule those behaviors out as causes of the condition. Also, ask them to keep a log of their diet and symptoms. Explain that the goal is to eliminate the possibility that something they are eating is causing the symptoms (which is absolutely true -- many people suffering from chronic urticaria find relief from low-histamine diets). A log of diet + symptoms will have two effects: one, almost everyone who keeps a log of what they eat subconsciously begins eating better since they know someone else is going to know what they're eating; second, it will hopefully disassociate the bizarro microfibers from their condition. If they eat tomatoes one day and their symptoms happen to be worse, they may start thinking, "Maybe it's tomatoes" instead of "It's alien fibers". Even if this isn't true either, it is a line of thought that can be pursued in a much saner manner.

So these are all ideas I came up with in the matter of a few minutes. I'm not a doctor and I don't have any experience in diagnosing or treating illnesses, so I'm sure I've made some mistakes here and I'm sure a real doctor could do an even better job. But I do think it shows that there are better options than just throwing your hands up in their air and telling the patient that they don't know what the heck they're talking about.

Assuming they come all the way from crazyland, ideally the conversation should look something like this:
Doctor: What seems to be the problem?
Patient: I have morgellon's.
Doctor: Yes, I've read about this. So you have itching all over your skin? Describe your symptoms?
Patient: (starts talking about the fibers)
Doctor: Well, I understand that fibers are associated with Morgellon's, but I'd like to hear about the specific symptoms your experiencing: where do you itch, when, etc?
Patient: (starts talking about the actual symptoms)
Doctor: Have you seen anyone else for this condition? (If yes, find out what has already been tried in terms of medications and treatments, if not, start suggesting ways to identify the specific skin condition that the patient has and what cures might exist).
Patient: No, I definitely have morgellon's.
Doctor: Well, here's the thing. Currently there's no formal diagnosis or treatment for morgellon's. However, there are many, many causes for skin irritation including a, b, c, and d. If you want to stick to the morgellon's diagnosis then I probably can't help you. But if you're interested in trying other options we can work together to identify what might be going on with you.

If the person is marginally sane, at this point they'll probably be open to pursuing these other options and won't feel like their feelings, opinions, or beliefs have been dismissed. If they aren't sane, they probably wouldn't have gone to the doctor anyway.
posted by Deathalicious at 12:04 PM on May 11, 2011 [1 favorite]

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