I wonder if it’s some kind of mutant ingrown hairs? *shrug* imagine the commercial uses for fireproof naturally fibre ;)
One of my siblings has slowly gone down the FB/YT conspiracy rabbit hole over the last few years - I’ve been sending him links from your piece on how to talk to people but I struggle to show empathy for someone who has done every imaginable recreational drug, yet won’t get a covid vaccine!
Thanks for the awesome work David, you give me some sliver of hope and humour during these dark days <3
I thought it of the hair thing as well, but if it were something as simple and organic as that, it would've burned up when they subjected it to extreme heat, right? The fact that they couldn't identify the fibers is the most intriguing part to me here.
That tripped me the hell out. I am trying to reach the professor at that US university who studies this stuff, but he's very quiet at the moment. Keen to pick his brain.
That's what I was wondering - in another life when I was training as a hairdresser, our tutor warned us not to wear open-toed shoes in the salon even in hot weather because tiny cut pieces of hair ("hair splinters") could work their way into your skin and give you an infection. So maybe it's some sort of synthetic fibre doing the same? I don't know. I hate to think of these people picking apart their flesh trying to get at these things and find it hard to imagine that so many people are suffering from a shared delusion, but I guess the world is full of stranger things.
Maybe if someone went around the festivals telling people it was an experimental drug made from the roots of the giant sequoias and it will help them connect with Gaia and level up as humans on a spiritual level - I reckon they would take it no questions asked.
Well the oil and gas industry have been selling us the worst kind of destructive lies I can imagine, how about saving your contempt for them rather than drug users who only want to feel good in a world where our species has pushed earth systems into overshoot. I'm kind of done with the smugness and condemnation of the vaccinated masses. Yes I'm double double jab jabbed but it doesn't make me better or worse than anyone else.
You’re absolutely right Paddy, I wish my sibling was more focussed on the oil and gas industry and not the FB conspiracy theories (almost always regarding covid or American politics) as I honestly think the algorithm deliberately shifts people away from more important issues, so they’ll fixate on trivial ones… Can appreciate I possibly didn’t word this well (I really do struggle with this issue) and my intention wasn’t smugness or condemnation, more sadness and helplessness. I think he’s essentially being manipulated and I want to try and help him…
Mate we all have these contradictions. This is your sibling. By "I struggle with it" do you mean you are actually doing what it takes to have the empathy required, or does it mean "I prefer the cosy smugness of judgement against recreational drug takers". If its the latter then you are part of the problem. If you want a solution you will need to look within.
I may have misinterpreted your comment but I don't think Anyaj was judging recreational drug takers for taking recreational drugs, many of us have taken them at some point. I think they were pointing out the hypocrisy of recreational drug takers, who'll generally not question the ingredients or source of drugs, being concerned about the ingredients of the vaccines which are highly regulated and have been extensively tested through proper clinical trials.
100% Lise, that’s exactly where I was going thank you! I can only refer to my sibling, but I find it mind boggling that he has freely taken all manner of party pills, papers, herion, p etc etc with zero idea of what’s in them, yet he’s obsessed (he’s posting 40-50 posts a day) with covid conspiracies and refusing all scientific evidence on the vaccine… I can’t help but think back to what the Netflix doco (Was it The Social Dilemma?) predicting society falling apart and it scares the crap out of me :(
Oh crap I've flown off the handle on social media sorry everyone! This vaccination stuff has got me rattled, and when I'm stressed I get all opinionated. Not nice. We are certainly seem to be facing some big issues as a society. I wonder what will happen next. We never really know how things will unfold, and we are always way more vulnerable than we think we are. I reckon the best approach is to work on boosting the morale of your fellow travellers - its like a vaccination against fear and uncertainty. We got this people!
Sorry about your brother. Sounds like he's in really deep with the conspiracies, I wouldn't know what to do. I guess wait it out and hope he finds his way back to reality?
IKR it’s so difficult to know whether to ignore, correct, ask him to explain more (although that usually just means he sends ten looooong rants) :( Tbh, I suspect he’ll probably catch covid and end up in hospital, or worse… All cool Paddy <3 I think we’re all rattled too! I like the safe space David has created here where we can all share our worries - and have a few laughs :)
I'm feel terrible for anyone who has this experience, genuinely horrific and terrifying. I can hold it in a space which requires no conclusion, clearly lots of people believe this is their reality. I hope Andy is OK. To be homeless with a strange illness, whatever the cause, is heartbreaking.
I struggle to accept it has a physical origin but what the hell do I know. If it is psychological in origin it produces significant physical and mental suffering and needs to be understood properly so people can get some help.
I can believe shared psychological experiences can shape perception of reality. I have a family member who thinks Donald Trump is amazing, despite, politics aside, it is pretty obvious he is a shitty human being. This week said family member told me he hates me because I'm such a socialist and I think DT is an arsehole. He was raging like a mad person, no-one should ever be that invested in a political leader, so something else is going on, something insidious, psychological, emotional and shared with the only bit of the world he connects too, (right wing, conspiracy echo chamber section of) the internet. When a person has already laid some serious psyche foundations on the sand of internet bollocks, the final build can be really weird and is maintained by conversations with people who share that delusion.
"I can believe shared psychological experiences can shape perception of reality." Same. I am working on an upcoming newsletter and Armchaired and Dangerous about Mass Hysteria. It's fascinating and terrifying. I think you will dig.
Oh exciting, looking forward to that. I'm halfway through the secret societies one. I listen whilst walking the dog. I looked like a weirdo laughing in the street at thin air when Daxs' Mom was on the phone. Brilliant.
Morgellon’s has been around for a long time so the ‘matchbox sign’ for dermatologists speak iof is more often the ‘ziplock bag’ sign or the ‘USB stick’ sign.
One of the more common causes of delusional parasitosis is cocaine, amphetamine, and alcohol withdrawal after heavy usage which is likely what inspired Phillip K. Dick writing about his student days in the counterculture of the 1960s.
Cronenberg’s 1986 ‘The Fly’ is some seriously squicky body horror. But his 1983 film Videodrome is also awesome and psychotically trippy. I’ve never forgotten the black and white version of ‘The Fly’ that I saw as a kid in NZ on the Sunday Horrors (I think).
Hi Aimee! I just clicked on your profile because I recognise your name from RHR on Facebook (which I've recently deactivated due to frustration over anti-vax nonsense). This is a complete tangent but did your dog actually eat a lightbulb?! They eat such random things. My dog puked up a big disgusting black gloop the other night and we were like "What the hell is that?!" We then worked out that he'd eaten the muck that the plumber had cleaned out of our blocked drain....Sorry for the tangent but dogs are so hilarious!
Kia ora RHR e hoa. Funny! Yes ours loves to eat cat shit, or anything revolting 😄 He actually did eat a light bulb. He had it in his mouth and when I tried to grab it, he swallowed it whole! Luckily it was a plastic outdoor one. I panicked and called the vet who told me his stomach juices would break it down and to just wait. Lo and behold a couple of days later little bits of light bulb all over the lawn 😀 Great tangent
The pets forum is interesting. It makes me think of how Qanon folk might come for the conspiracy, but stay for the community. I suppose there must be an "at last, people who understand me" vibe at the heart of all special communities.
Community is a HUGE part of it. They are finally *heard*. And the internet means they can find these like minded people so, so easily - and all share and amplify their own narrative - and explanations for that narrative!
I am actually on the fence about this one. Think about Lyme disease compared to long covid (one basically a joke for a very long time, in spite of being a very real thing; one affecting men too, and immediately accepted and studied). What could make a person more paranoid than being told they're insane when they clearly have *something* going on.
Also being itchy is hell, if you have a chronic disease that makes you itchy, yeesh, me too but I really sympathize if you get a little bit nuts over it! I don't even think it's safe to say it's "mental" .. historically this is how medicine has treated anything it can't explain, including basic bacterial infections.
Oh, I knew what you meant and didn't intend my comment as a criticism of your wording. The distinction between physical and psychological is inherently sloppy. Nature doesn't really 'do' binary that often. Only Maths and Language does.
That's inherent because Language evolved to summarise and symbolise which is an inherently lossy process from an information theory perspective. Tor Norretrander's book 'The User Illusion' covers a lot of this really well. https://en.wikipedia.org/wiki/User_illusion
I was actually thinking about dualism recently based on my own health issues, and I'm not sure Descartes did us any favors insisting on the absolute split between mind and body. Especially because they still teach it in university psych courses like it's still modern thought (or at least that's how I learned it, 15 or so years ago).
Word. Descartes has a bit to answer for here. and our allegiance to the split between 'mental' and 'physical' health. so I fell down a Medline search rabbit hole and one piece did a short summary of the 'debate' regarding possible link to infectious disease but focused most on what treatment works (as opposed to other studies which either treated people like samples in a petrie dish to poke at). Antibiotics alone did not help participants but in combination with antipsychotics, or with antipsychotic treatment, patients found help. It emphasised that "the condition can become overwhelming and debilitating, underpinning the fact that a holistic approach is crucial in managing these patients" and they had both psychological and dermatological experts on hand to support them through the treatment process. Basically, they made a point to not revert to 'it's just in your head'. the 'just' bit being so problematic as 'the head' is a pretty important bit of us and it's super weird that we not only talk about it like it's separate from our bodies but that its treatment is somehow less deserving....
You're right that a lot of Morgellon's sufferers feel deeply offended and stigmatised at the link to psychosis and delusions - reducing their concerns to being 'just in their head' when it's way more complex than that.
On a somewhat related tangent, one of my psychotherapy lecturers at AUT in New Zealand have been researching offering psychotherapy to chronic urticaria (aka hives) sufferers as part of a holistic treatment protocol.
Very true. My other favourite philosopher, Daniel Dennett has written about this at length. Mind-Body dualism is one of those ideas, like the earth being flat and creationism, that are both natural and appealing, yet completely wrong and misleading at the same time.
The part of the Empathy Exams that really got me is that the author started experiencing symptoms. Terrifying. And shows how powerful our puny little brains are!
I looked this up on the Mayo Clinic page - one of few publicly available sources of medical info that I trust, but that's a lesson for another day - and basically there's nothing. They almost literally say, "yeah, we've no fucking clue." That's disconcerting. The "treatment" section focuses on stuff like forming a trusting and supportive bond with the patient. Not super reassuring for anyone yanking alien fibers out of their skin. This could easily have been an X Files ep, incorporated into the mythology in some way (thinking of Scully's neck implant).
Anyway on a personal level, I'm cursed with madly sensitive skin, and just last night, I was itchy all over to the point where I just actually slathered my entire body in hydrocortisone cream. I also get these itchy little bumps for no apparent reason - yes, they're probably just something like hives, but damn it, David, now you've got me wanting to dissect them and search for mysterious, alien, possibly inorganic little strings. I'll need to get some more hydrocortisone, I think. *shudders*
Oh no! Don't start looking for fibres! One cold shower, stat! Look - I know what you mean. The Mayo Clinic page - and its lack of info - blew my mind too.
Ironically, our reactions to Tickling and getting itching are theorised to be an evolved protective response about avoiding parasites, insects and particularly snakes when we were jungle dwelling primates. https://en.wikipedia.org/wiki/Knismesis_and_gargalesis
Normally, we learn that our clothes moving across our skin is normal and doesn't represent a threat. People with neurodiverse sensory wiring can present with tactile defensiveness. https://en.wikipedia.org/wiki/Sensory_processing_disorder
My understanding is that heavy pressure (e.g. weighted blankets) is experienced as soothing since that uses the same receptors as our light pressure receptors but firing in response to a higher pressure threshold and that ends the feeling of threat.
Well then I have something major in common with chimps, and that's all I shall say on the subject less I succumb to a panic attack. 😂😂 I love evolutionary psych, though, that's fascinating.
I feel ya. I get dyshydrotic eczema from hot weather which is like tiny little itchy bumps that are maddening, the only thing I've found that helps is a corticosteroid ointment which, unlike creams, doesn't smother it and make it worse. I also get formication occasionally with my Hashimoto's and it's fucking horrible - there's no obvious sign but I'll be lying in bed feeling all these moving itchy sensations under my skin :-(
Dunno where in the world you are so I'm not sure if you can get this, but what I've found even more effective than cortisone is topical Benadryl (diphenhydramine) gel. I just didn't have any on hand this time, but there are days i swear i would bathe in the stuff!
here in Aotearoa its sold as Unisom a sleep drug - which I think you have to go through a Dr or pharmacist for. The active ingredient is diphenhydramine HCL 25, an antihistamine though problematic for long-term use. I think I took loratadine and used calendula cream and it helped take the edge off the eczema itch craziness, but def talk to a professional first who knows your medical history and other things you take.... i totally fell your pain - i used to avoid shaking hands because it was so bad they looked like they were decomposing :( .
Thanks, I've used Unisom in the past to help with sleeping during long-distance travel - it's very effective for that at least! I've tried calendula before but mainly the problem is it being in a cream formulation: I might see if I can find some oil and give that a go. Eczema is so awful and frustrating and there's not much you can do when it flares up - I get it on the bottom of my feet and I can barely walk :-(
It's really invasive, isn't it. Bottom of the feet sounds awful! Completely anecdotal, but I know folks who found exposure to certain grasses, dairy, or gluten made things worse. It wasn't so much a full-blown allergy as something that exacerbated things. But again, anecdotal. I hope you find something that helps!
Omfg what did I just read!? 😳 I seriously thought this was your foray into fiction writing & was musing how you got these photos doctored… but it’s (un)real!? Holy hell you stumble across some exceptionally weird sh*t. Otoh I’m glad that sufferers of the disease get some interest, it must absolutely suck - especially seeing there’s little scientific explanation so far.
If it’s tick-based, I swear those little suckers have it out for us! I grew up in mortal fear from tick bites in Austria - ours don’t just give you Lyme’s disease but encephalitis. My cousin caught it at 3, ended up in a coma for half a year, and has been a life-long epileptic! I blame ticks.
Yep - in the developed world, parasitic illness is way rarer than it was in our evolutionary past when it was a big primate mortality concern. Of course, it still is in less developed countries. That leads medical professionals to not consider it as an issue since it's less central in their training which is aimed at more common modern concerns.
Linked to this is the theory that the Western rise in autoimmune conditions (asthma, eczema, hives, etc.) is partly due to our evolved immune defences against parasitic and bacterial illness having not *enough* to do and getting suspicious of and over-reacting to our own cells. i.e. we're too clean and antibacterial cleaning sprays in particular are both growing resistance and messing up our immune balance.
Receiving those images in real time back in 2015 was pretty strange. The text made no sense to me - but then these images were like "Oh okay, God". I really do hope he's doing okay. Something I will probably never know.
Also, there’s a well known YouTuber called TheReportOfTheWeek - he’s a young guy who wears a suit and reviews fast food. He’s a bit naturally awkward which is what makes him fascinating to the internet, I guess. Anyway there was a time where he was convinced he was being stalked - it was scary watching his descent in to paranoia happen video to video. It’s the perfect unintentionally archived study of it.
Very much enjoyed listening to this - thanks. Rather enjoy the new format, which is similar to Bernard Hickey's The Kaka which is a short pod cast as well as the text. Nice, thanks David.
Heard about Morgellans a long time ago - early 2000's? - but always thought it was total conspiracy nonsense. Friend thought he had it, tho he was also rather into his meth and other drugs (_all_ the other drugs, even before meth was a thing in NZ). Always wondered why he couldn't just go into a hospital or GP/specialist, have some pulled and then get a GC/MS on it. I guess someone has, but obviously it'll never find anything useful.... like the lack of UFO photos now we all have phones.
Holy crap, this is such a sad story. Bizarrely my Mom kinda has something similar. In her case it is painful thin cuts on her skin. She started scratching at them and telling us she needed to remove a granule/white ball that was in the cut before it would heal. None of us could see any physical material or the "cuts" so this probably lies more under delusion than anything else. She would send me photos every day of her arms claiming they had thin cuts all over them 😞
It arrived out of nowhere, possibly after a bad psychological shock (fight with my Dad/covid stress), and she had signs of paranoia as well.
She would obsess about these sores on her arms and legs, spending hours in front of a mirror checking her skin for more of these "cuts". She was convinced that they didnt get better unless she removed the granules. She had hundreds of sores all over her limbs :(
How is it now? Well she got anti-psychotic meds from her Dr which gave her auditory hallucinations but stopped the skin obsession. She's feeling a bit better now (she stopped the meds as the hallucinations were far worse). She still thinks she has these cuts, but blames it on "scleroderma'. she has seen several dermatologists and every one said there's nothing wrong with her skin and the sores are self-inflicted. She believes she has scleroderma, and I kind of go along and give her love and sympathy. Nothing else I can do...
Plus she's overseas and I'm stuck in New Zealand unable to visit unless I want to be locked out of my country for months/years 😭
Oh I am so sorry to hear about your mum, Linda. That is rough. It would have been incredibly though to see her going through that obsession. Glad there is at least some light on the other side.
One of the challenges with somatoform disorders is that implying that emotional issues cause physical sensations/symptoms is often shame inducing which just increases the underlying emotional distress. Often it’s better to suggest that someone consider talking to a therapist for help with stress, and not imply it’s causal. The physical symptoms can subsequently resolve since the sufferer develops the capacity to verbally express (and resolve) their relationship distress rather than somatically.
The people who tend to develop somatoform disorders often had families of origin which criticised and pathologised their expression of emotion.
I’ve recently learned about Body Focused Repetitive Behaviours (BFRBs) and so I can’t help but see a link to Morgellons. Also, I’m deeply troubled that my habit of picking at my finger nails and skin is considered a disorder. It’s also classed as dermatophagia - compulsive chewing and gnawing at one’s own skin. Now I’m just venting. Dark times!
These are all on a continuum of course, and only really considered a disorder if it causes you distress or issues in other parts of your life (i.e. work or relationships) due to obsessiveness.
I used to work with kids who had these behaviors in the extreme, to the point that they were in inpatient treatment. The most extreme case which I'll never forget was a very young boy (4, 5) who had actually chewed away the majority of his lips. So you yeah as you said, it's a continuum: I, for one, chomp the inside of my cheek when I'm anxious. Some simply pick at scabs. And then you have people like my patient. Level of intervention depends on where you fall on this continuum. Diagnoses such as these aren't binary.
Maybe. But don't sweat diagnostic labels too much. Self-soothing behaviors would be on the rise for all of us right now. Nothing pathological about that.
That stuff about perception is cool. It makes me think of software development. Like maybe a web app that has components, like templates, that are populated by dynamic data. The raw data and the component don’t have much meaning on their own, but together they render a meaningful web page like a social media page or something. But then what if either the API or the front end has a bug… you can get some weird visuals 🤔
I mean I’m not an expert in either web development or neuroscience so what do I know, but the concerta’s kicking in and I love an elaborate metaphor 😆
As someone who does software development (wearing my other hat) and digs neuroscience, you're on pretty good ground, actually. You're not the first person to use this metaphor.
Maybe some people's minds cause them to experience the earlier drafts before it's stabilised.
Jeff Hawkin's 'On Intelligence' also covers similar ground about how intelligence is built from memory and prediction and that we subjectively experience the prediction. We evolved for 'good enough' making under time and calorie constraints https://en.wikipedia.org/wiki/On_Intelligence
Abso-fricken-lutly! Hofstadter is another of my favourites. He and Dennett also co-wrote 'The Minds I' which preceded that (I think). And then there is Godel, Escher, Bach and... I'll stop now. Major Hofstadter fanboi alert.
Ahhhhh I consider myself fairly empathetic and as I read this I found myself becoming mildly paranoid I’d get it 🤦🏻♀️ Simply just from imagining too well what it would feel like 🧐
I wonder if it’s some kind of mutant ingrown hairs? *shrug* imagine the commercial uses for fireproof naturally fibre ;)
One of my siblings has slowly gone down the FB/YT conspiracy rabbit hole over the last few years - I’ve been sending him links from your piece on how to talk to people but I struggle to show empathy for someone who has done every imaginable recreational drug, yet won’t get a covid vaccine!
Thanks for the awesome work David, you give me some sliver of hope and humour during these dark days <3
I think humor is key - without it we're goners!
I thought it of the hair thing as well, but if it were something as simple and organic as that, it would've burned up when they subjected it to extreme heat, right? The fact that they couldn't identify the fibers is the most intriguing part to me here.
That tripped me the hell out. I am trying to reach the professor at that US university who studies this stuff, but he's very quiet at the moment. Keen to pick his brain.
Yeah, I mean the thing I keep thinking about burning hair is....it smells strongly and BAD. There would be no mistaking it.
That's what I was wondering - in another life when I was training as a hairdresser, our tutor warned us not to wear open-toed shoes in the salon even in hot weather because tiny cut pieces of hair ("hair splinters") could work their way into your skin and give you an infection. So maybe it's some sort of synthetic fibre doing the same? I don't know. I hate to think of these people picking apart their flesh trying to get at these things and find it hard to imagine that so many people are suffering from a shared delusion, but I guess the world is full of stranger things.
Omg yes those that would take a random pill or paper given to them by a tweaking aquaintence whilst already on drugs but no the vax is too far :(
Maybe if someone went around the festivals telling people it was an experimental drug made from the roots of the giant sequoias and it will help them connect with Gaia and level up as humans on a spiritual level - I reckon they would take it no questions asked.
Well the oil and gas industry have been selling us the worst kind of destructive lies I can imagine, how about saving your contempt for them rather than drug users who only want to feel good in a world where our species has pushed earth systems into overshoot. I'm kind of done with the smugness and condemnation of the vaccinated masses. Yes I'm double double jab jabbed but it doesn't make me better or worse than anyone else.
You’re absolutely right Paddy, I wish my sibling was more focussed on the oil and gas industry and not the FB conspiracy theories (almost always regarding covid or American politics) as I honestly think the algorithm deliberately shifts people away from more important issues, so they’ll fixate on trivial ones… Can appreciate I possibly didn’t word this well (I really do struggle with this issue) and my intention wasn’t smugness or condemnation, more sadness and helplessness. I think he’s essentially being manipulated and I want to try and help him…
Mate we all have these contradictions. This is your sibling. By "I struggle with it" do you mean you are actually doing what it takes to have the empathy required, or does it mean "I prefer the cosy smugness of judgement against recreational drug takers". If its the latter then you are part of the problem. If you want a solution you will need to look within.
I may have misinterpreted your comment but I don't think Anyaj was judging recreational drug takers for taking recreational drugs, many of us have taken them at some point. I think they were pointing out the hypocrisy of recreational drug takers, who'll generally not question the ingredients or source of drugs, being concerned about the ingredients of the vaccines which are highly regulated and have been extensively tested through proper clinical trials.
100% Lise, that’s exactly where I was going thank you! I can only refer to my sibling, but I find it mind boggling that he has freely taken all manner of party pills, papers, herion, p etc etc with zero idea of what’s in them, yet he’s obsessed (he’s posting 40-50 posts a day) with covid conspiracies and refusing all scientific evidence on the vaccine… I can’t help but think back to what the Netflix doco (Was it The Social Dilemma?) predicting society falling apart and it scares the crap out of me :(
Oh crap I've flown off the handle on social media sorry everyone! This vaccination stuff has got me rattled, and when I'm stressed I get all opinionated. Not nice. We are certainly seem to be facing some big issues as a society. I wonder what will happen next. We never really know how things will unfold, and we are always way more vulnerable than we think we are. I reckon the best approach is to work on boosting the morale of your fellow travellers - its like a vaccination against fear and uncertainty. We got this people!
Sorry about your brother. Sounds like he's in really deep with the conspiracies, I wouldn't know what to do. I guess wait it out and hope he finds his way back to reality?
IKR it’s so difficult to know whether to ignore, correct, ask him to explain more (although that usually just means he sends ten looooong rants) :( Tbh, I suspect he’ll probably catch covid and end up in hospital, or worse… All cool Paddy <3 I think we’re all rattled too! I like the safe space David has created here where we can all share our worries - and have a few laughs :)
I'm feel terrible for anyone who has this experience, genuinely horrific and terrifying. I can hold it in a space which requires no conclusion, clearly lots of people believe this is their reality. I hope Andy is OK. To be homeless with a strange illness, whatever the cause, is heartbreaking.
I struggle to accept it has a physical origin but what the hell do I know. If it is psychological in origin it produces significant physical and mental suffering and needs to be understood properly so people can get some help.
I can believe shared psychological experiences can shape perception of reality. I have a family member who thinks Donald Trump is amazing, despite, politics aside, it is pretty obvious he is a shitty human being. This week said family member told me he hates me because I'm such a socialist and I think DT is an arsehole. He was raging like a mad person, no-one should ever be that invested in a political leader, so something else is going on, something insidious, psychological, emotional and shared with the only bit of the world he connects too, (right wing, conspiracy echo chamber section of) the internet. When a person has already laid some serious psyche foundations on the sand of internet bollocks, the final build can be really weird and is maintained by conversations with people who share that delusion.
"I can believe shared psychological experiences can shape perception of reality." Same. I am working on an upcoming newsletter and Armchaired and Dangerous about Mass Hysteria. It's fascinating and terrifying. I think you will dig.
Oh exciting, looking forward to that. I'm halfway through the secret societies one. I listen whilst walking the dog. I looked like a weirdo laughing in the street at thin air when Daxs' Mom was on the phone. Brilliant.
While it’s no Tickled, the 2019 documentary “Skin Deep” is about Morgellon’s and quite interesting. https://www.documentary.org/project/skin-deep-battle-over-morgellons
Morgellon’s has been around for a long time so the ‘matchbox sign’ for dermatologists speak iof is more often the ‘ziplock bag’ sign or the ‘USB stick’ sign.
As an aside, Delusional parasitosis and paranoia features deeply in Phillip K. Dick’s SF story ‘A Scanner Darkly’ https://en.wikipedia.org/wiki/A_Scanner_Darkly which was made into an awesome rotoscoped animated film by Richard Linklater starring Keane Reeves. https://en.wikipedia.org/wiki/A_Scanner_Darkly_(film)
One of the more common causes of delusional parasitosis is cocaine, amphetamine, and alcohol withdrawal after heavy usage which is likely what inspired Phillip K. Dick writing about his student days in the counterculture of the 1960s.
https://mindhacks.com/2006/08/14/neuropsychology-and-psychosis-in-a-scanner-darkly/
I was about to say that this made me as uncomfortable as starting to watch A scanner darkly. I never finished that. I only just finished this.
Cronenberg’s 1986 ‘The Fly’ is some seriously squicky body horror. But his 1983 film Videodrome is also awesome and psychotically trippy. I’ve never forgotten the black and white version of ‘The Fly’ that I saw as a kid in NZ on the Sunday Horrors (I think).
you should probably see a psychotherapist.
How did you know!
I've started seeing them everywhere at work.
I think some of them are following me.
On twitter. On facebook. Nowhere is safe.
Except webworm. I don't think any of them have found me here.... yet.
Wait, are you working with THEM?
https://www.youtube.com/watch?v=ysFxrPNjvNA
lol
You might dig this one too, Paul: https://www.youtube.com/watch?v=-OWIk-oFu40
It's much more of an art film than the "whodunnit" of Skin Deep - but I know you will dig it.
PS I really need to rewatch A Scanner Darkly. I think it went over my head at the time.
"a woman scratched through her scalp and her skull using household implements until she was scratching at her own brain" 🤮🤮🤮🤮
I felt quite ill throughout that whole newsletter and enjoyed it immensely. I'm now on a Morgellens Google marathon. Fascinating!
Quite the image, huh. If they make the movie, that will be a key scene!
I loved your ‘The Fly’ reference. I’d never made the Morgellon’s allusion link but it’s so clear. I wonder if Cronenberg did that intentionally.
Surely he did, right? Such visceral scenes as Jeff's body turned on him and started growing big ol' fly hairs!
Hi Aimee! I just clicked on your profile because I recognise your name from RHR on Facebook (which I've recently deactivated due to frustration over anti-vax nonsense). This is a complete tangent but did your dog actually eat a lightbulb?! They eat such random things. My dog puked up a big disgusting black gloop the other night and we were like "What the hell is that?!" We then worked out that he'd eaten the muck that the plumber had cleaned out of our blocked drain....Sorry for the tangent but dogs are so hilarious!
Kia ora RHR e hoa. Funny! Yes ours loves to eat cat shit, or anything revolting 😄 He actually did eat a light bulb. He had it in his mouth and when I tried to grab it, he swallowed it whole! Luckily it was a plastic outdoor one. I panicked and called the vet who told me his stomach juices would break it down and to just wait. Lo and behold a couple of days later little bits of light bulb all over the lawn 😀 Great tangent
A truly terrifying tangent. Glad puppy is okay.
The pets forum is interesting. It makes me think of how Qanon folk might come for the conspiracy, but stay for the community. I suppose there must be an "at last, people who understand me" vibe at the heart of all special communities.
Community is a HUGE part of it. They are finally *heard*. And the internet means they can find these like minded people so, so easily - and all share and amplify their own narrative - and explanations for that narrative!
Absolutely!!
I am actually on the fence about this one. Think about Lyme disease compared to long covid (one basically a joke for a very long time, in spite of being a very real thing; one affecting men too, and immediately accepted and studied). What could make a person more paranoid than being told they're insane when they clearly have *something* going on.
Also being itchy is hell, if you have a chronic disease that makes you itchy, yeesh, me too but I really sympathize if you get a little bit nuts over it! I don't even think it's safe to say it's "mental" .. historically this is how medicine has treated anything it can't explain, including basic bacterial infections.
Actually, a possible link to something akin to Lyme disease is one of the theorised causes for some sufferers of Morgellon’s. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072536/ Just because something is psychological doesn’t mean it’s not subjectively experienced as physically real. https://en.wikipedia.org/wiki/Somatization_disorder
Thanks Paul; I didn't mean to imply that "psychological symptoms are not real", but I certainly did in my sloppy wording.
Oh, I knew what you meant and didn't intend my comment as a criticism of your wording. The distinction between physical and psychological is inherently sloppy. Nature doesn't really 'do' binary that often. Only Maths and Language does.
That's inherent because Language evolved to summarise and symbolise which is an inherently lossy process from an information theory perspective. Tor Norretrander's book 'The User Illusion' covers a lot of this really well. https://en.wikipedia.org/wiki/User_illusion
I was actually thinking about dualism recently based on my own health issues, and I'm not sure Descartes did us any favors insisting on the absolute split between mind and body. Especially because they still teach it in university psych courses like it's still modern thought (or at least that's how I learned it, 15 or so years ago).
Word. Descartes has a bit to answer for here. and our allegiance to the split between 'mental' and 'physical' health. so I fell down a Medline search rabbit hole and one piece did a short summary of the 'debate' regarding possible link to infectious disease but focused most on what treatment works (as opposed to other studies which either treated people like samples in a petrie dish to poke at). Antibiotics alone did not help participants but in combination with antipsychotics, or with antipsychotic treatment, patients found help. It emphasised that "the condition can become overwhelming and debilitating, underpinning the fact that a holistic approach is crucial in managing these patients" and they had both psychological and dermatological experts on hand to support them through the treatment process. Basically, they made a point to not revert to 'it's just in your head'. the 'just' bit being so problematic as 'the head' is a pretty important bit of us and it's super weird that we not only talk about it like it's separate from our bodies but that its treatment is somehow less deserving....
Yeah, mind-body conditions are far from simple.
https://en.wikipedia.org/wiki/Psychoneuroimmunology
https://en.wikipedia.org/wiki/Somatic_symptom_disorder
You're right that a lot of Morgellon's sufferers feel deeply offended and stigmatised at the link to psychosis and delusions - reducing their concerns to being 'just in their head' when it's way more complex than that.
On a somewhat related tangent, one of my psychotherapy lecturers at AUT in New Zealand have been researching offering psychotherapy to chronic urticaria (aka hives) sufferers as part of a holistic treatment protocol.
https://openrepository.aut.ac.nz/bitstream/handle/10292/9532/Urticaria%20article.pdf
its this one....https://www.tandfonline.com/doi/abs/10.1080/09546634.2017.1349868
Very true. My other favourite philosopher, Daniel Dennett has written about this at length. Mind-Body dualism is one of those ideas, like the earth being flat and creationism, that are both natural and appealing, yet completely wrong and misleading at the same time.
Morgellons definitely sounds like nightmare fuel to me, regardless of what it is. Now I'm going to be hyper aware of every itch I have today.
The part of the Empathy Exams that really got me is that the author started experiencing symptoms. Terrifying. And shows how powerful our puny little brains are!
Itching is as contagious as Yawning. Which anyone reading this probably just had an urge to do. https://www.pbs.org/newshour/science/why-are-yawns-contagious-we-asked-a-scientist
I looked this up on the Mayo Clinic page - one of few publicly available sources of medical info that I trust, but that's a lesson for another day - and basically there's nothing. They almost literally say, "yeah, we've no fucking clue." That's disconcerting. The "treatment" section focuses on stuff like forming a trusting and supportive bond with the patient. Not super reassuring for anyone yanking alien fibers out of their skin. This could easily have been an X Files ep, incorporated into the mythology in some way (thinking of Scully's neck implant).
Anyway on a personal level, I'm cursed with madly sensitive skin, and just last night, I was itchy all over to the point where I just actually slathered my entire body in hydrocortisone cream. I also get these itchy little bumps for no apparent reason - yes, they're probably just something like hives, but damn it, David, now you've got me wanting to dissect them and search for mysterious, alien, possibly inorganic little strings. I'll need to get some more hydrocortisone, I think. *shudders*
Oh no! Don't start looking for fibres! One cold shower, stat! Look - I know what you mean. The Mayo Clinic page - and its lack of info - blew my mind too.
This doc is a trip if you can track it down - my friend Penny made it. A meditation on Morgellons more than an expose: https://www.youtube.com/watch?v=jng4uJzBPsg
Ironically, our reactions to Tickling and getting itching are theorised to be an evolved protective response about avoiding parasites, insects and particularly snakes when we were jungle dwelling primates. https://en.wikipedia.org/wiki/Knismesis_and_gargalesis
Chimpanzees react very strongly to snakes. https://www.theverge.com/2017/11/15/16652474/chimpanzees-communication-danger-warning-social-cognition-evolution
Normally, we learn that our clothes moving across our skin is normal and doesn't represent a threat. People with neurodiverse sensory wiring can present with tactile defensiveness. https://en.wikipedia.org/wiki/Sensory_processing_disorder
My understanding is that heavy pressure (e.g. weighted blankets) is experienced as soothing since that uses the same receptors as our light pressure receptors but firing in response to a higher pressure threshold and that ends the feeling of threat.
Well then I have something major in common with chimps, and that's all I shall say on the subject less I succumb to a panic attack. 😂😂 I love evolutionary psych, though, that's fascinating.
I kind of liked your first reply but that's a whole different cultural condition :-)
Ha! It was simultaneously so hilarious and humiliating that i did think for a moment about leaving it.
LOL. And now you've made it 'disappear' which is even more appropriate.
Culture bound delusional disorders are really fascinating.
https://en.wikipedia.org/wiki/Culture-bound_syndrome
Have a look at what in the DSM-4 and ICD-10 lists but not DSM-5. :-)
I feel ya. I get dyshydrotic eczema from hot weather which is like tiny little itchy bumps that are maddening, the only thing I've found that helps is a corticosteroid ointment which, unlike creams, doesn't smother it and make it worse. I also get formication occasionally with my Hashimoto's and it's fucking horrible - there's no obvious sign but I'll be lying in bed feeling all these moving itchy sensations under my skin :-(
Dunno where in the world you are so I'm not sure if you can get this, but what I've found even more effective than cortisone is topical Benadryl (diphenhydramine) gel. I just didn't have any on hand this time, but there are days i swear i would bathe in the stuff!
Thanks, I'll look out for it (I'm in Aotearoa/NZ)
here in Aotearoa its sold as Unisom a sleep drug - which I think you have to go through a Dr or pharmacist for. The active ingredient is diphenhydramine HCL 25, an antihistamine though problematic for long-term use. I think I took loratadine and used calendula cream and it helped take the edge off the eczema itch craziness, but def talk to a professional first who knows your medical history and other things you take.... i totally fell your pain - i used to avoid shaking hands because it was so bad they looked like they were decomposing :( .
Thanks, I've used Unisom in the past to help with sleeping during long-distance travel - it's very effective for that at least! I've tried calendula before but mainly the problem is it being in a cream formulation: I might see if I can find some oil and give that a go. Eczema is so awful and frustrating and there's not much you can do when it flares up - I get it on the bottom of my feet and I can barely walk :-(
It's really invasive, isn't it. Bottom of the feet sounds awful! Completely anecdotal, but I know folks who found exposure to certain grasses, dairy, or gluten made things worse. It wasn't so much a full-blown allergy as something that exacerbated things. But again, anecdotal. I hope you find something that helps!
Thanks David, now I'm just really fucking itchy.
Just don't start looking for threads.
Omfg what did I just read!? 😳 I seriously thought this was your foray into fiction writing & was musing how you got these photos doctored… but it’s (un)real!? Holy hell you stumble across some exceptionally weird sh*t. Otoh I’m glad that sufferers of the disease get some interest, it must absolutely suck - especially seeing there’s little scientific explanation so far.
If it’s tick-based, I swear those little suckers have it out for us! I grew up in mortal fear from tick bites in Austria - ours don’t just give you Lyme’s disease but encephalitis. My cousin caught it at 3, ended up in a coma for half a year, and has been a life-long epileptic! I blame ticks.
Yep - in the developed world, parasitic illness is way rarer than it was in our evolutionary past when it was a big primate mortality concern. Of course, it still is in less developed countries. That leads medical professionals to not consider it as an issue since it's less central in their training which is aimed at more common modern concerns.
Linked to this is the theory that the Western rise in autoimmune conditions (asthma, eczema, hives, etc.) is partly due to our evolved immune defences against parasitic and bacterial illness having not *enough* to do and getting suspicious of and over-reacting to our own cells. i.e. we're too clean and antibacterial cleaning sprays in particular are both growing resistance and messing up our immune balance.
https://en.wikipedia.org/wiki/Hygiene_hypothesis
Receiving those images in real time back in 2015 was pretty strange. The text made no sense to me - but then these images were like "Oh okay, God". I really do hope he's doing okay. Something I will probably never know.
scully: “Victim presents with Morgellons disease. Note the skin irritation and strange fibres around the mouth.
mulder: *throws her a file* “you ever heard of alien body string?”
Also, there’s a well known YouTuber called TheReportOfTheWeek - he’s a young guy who wears a suit and reviews fast food. He’s a bit naturally awkward which is what makes him fascinating to the internet, I guess. Anyway there was a time where he was convinced he was being stalked - it was scary watching his descent in to paranoia happen video to video. It’s the perfect unintentionally archived study of it.
Oh that's really sad. Yeah, the gang stalking thing is super tragic. A lot of it in LA.
HA!
Very much enjoyed listening to this - thanks. Rather enjoy the new format, which is similar to Bernard Hickey's The Kaka which is a short pod cast as well as the text. Nice, thanks David.
Heard about Morgellans a long time ago - early 2000's? - but always thought it was total conspiracy nonsense. Friend thought he had it, tho he was also rather into his meth and other drugs (_all_ the other drugs, even before meth was a thing in NZ). Always wondered why he couldn't just go into a hospital or GP/specialist, have some pulled and then get a GC/MS on it. I guess someone has, but obviously it'll never find anything useful.... like the lack of UFO photos now we all have phones.
Cool - I've done a few of these podcasts now: They suit certain pieces, I think. Glad you dig.
Sorry to hear about your friend: It all gets pretty tragic and sad pretty quickly.
Holy crap, this is such a sad story. Bizarrely my Mom kinda has something similar. In her case it is painful thin cuts on her skin. She started scratching at them and telling us she needed to remove a granule/white ball that was in the cut before it would heal. None of us could see any physical material or the "cuts" so this probably lies more under delusion than anything else. She would send me photos every day of her arms claiming they had thin cuts all over them 😞
It arrived out of nowhere, possibly after a bad psychological shock (fight with my Dad/covid stress), and she had signs of paranoia as well.
She would obsess about these sores on her arms and legs, spending hours in front of a mirror checking her skin for more of these "cuts". She was convinced that they didnt get better unless she removed the granules. She had hundreds of sores all over her limbs :(
How is it now? Well she got anti-psychotic meds from her Dr which gave her auditory hallucinations but stopped the skin obsession. She's feeling a bit better now (she stopped the meds as the hallucinations were far worse). She still thinks she has these cuts, but blames it on "scleroderma'. she has seen several dermatologists and every one said there's nothing wrong with her skin and the sores are self-inflicted. She believes she has scleroderma, and I kind of go along and give her love and sympathy. Nothing else I can do...
Plus she's overseas and I'm stuck in New Zealand unable to visit unless I want to be locked out of my country for months/years 😭
Oh I am so sorry to hear about your mum, Linda. That is rough. It would have been incredibly though to see her going through that obsession. Glad there is at least some light on the other side.
That’s really tough, Linda. I think your intuition wondering about whether increased emotional stress might be right. It makes me think of somatoform disorders. https://en.wikipedia.org/wiki/Somatic_symptom_disorder
One of the challenges with somatoform disorders is that implying that emotional issues cause physical sensations/symptoms is often shame inducing which just increases the underlying emotional distress. Often it’s better to suggest that someone consider talking to a therapist for help with stress, and not imply it’s causal. The physical symptoms can subsequently resolve since the sufferer develops the capacity to verbally express (and resolve) their relationship distress rather than somatically.
The people who tend to develop somatoform disorders often had families of origin which criticised and pathologised their expression of emotion.
Thanks Paul, it was really tough for my family and a really horrid experience for my Mom. She's on the mend now though
I’ve recently learned about Body Focused Repetitive Behaviours (BFRBs) and so I can’t help but see a link to Morgellons. Also, I’m deeply troubled that my habit of picking at my finger nails and skin is considered a disorder. It’s also classed as dermatophagia - compulsive chewing and gnawing at one’s own skin. Now I’m just venting. Dark times!
I'd argue there are much worse things to be doing!
Yes, and there's also Trichotillomania too. https://en.wikipedia.org/wiki/Trichotillomania
These are all on a continuum of course, and only really considered a disorder if it causes you distress or issues in other parts of your life (i.e. work or relationships) due to obsessiveness.
I used to work with kids who had these behaviors in the extreme, to the point that they were in inpatient treatment. The most extreme case which I'll never forget was a very young boy (4, 5) who had actually chewed away the majority of his lips. So you yeah as you said, it's a continuum: I, for one, chomp the inside of my cheek when I'm anxious. Some simply pick at scabs. And then you have people like my patient. Level of intervention depends on where you fall on this continuum. Diagnoses such as these aren't binary.
My fingers hurt 😂
OMG I have dermatophagia 🤣 yuck. But it's nice to have a name for these things I guess 🤔
Maybe. But don't sweat diagnostic labels too much. Self-soothing behaviors would be on the rise for all of us right now. Nothing pathological about that.
Hehe yeah I'm OK. I've done it since I was 10 without a name for it 🤣
That stuff about perception is cool. It makes me think of software development. Like maybe a web app that has components, like templates, that are populated by dynamic data. The raw data and the component don’t have much meaning on their own, but together they render a meaningful web page like a social media page or something. But then what if either the API or the front end has a bug… you can get some weird visuals 🤔
I mean I’m not an expert in either web development or neuroscience so what do I know, but the concerta’s kicking in and I love an elaborate metaphor 😆
As someone who does software development (wearing my other hat) and digs neuroscience, you're on pretty good ground, actually. You're not the first person to use this metaphor.
Daniel Dennett talks about the multiple drafts model of consciousness. https://en.wikipedia.org/wiki/Consciousness_Explained
Maybe some people's minds cause them to experience the earlier drafts before it's stabilised.
Jeff Hawkin's 'On Intelligence' also covers similar ground about how intelligence is built from memory and prediction and that we subjectively experience the prediction. We evolved for 'good enough' making under time and calorie constraints https://en.wikipedia.org/wiki/On_Intelligence
Thanks for the links! I'm always interested in learning more about the consciousness and what it may actually be or arise from.
Have you read "I am a strange loop"? Some fascinating ideas on consciousness. https://en.wikipedia.org/wiki/I_Am_a_Strange_Loop
Abso-fricken-lutly! Hofstadter is another of my favourites. He and Dennett also co-wrote 'The Minds I' which preceded that (I think). And then there is Godel, Escher, Bach and... I'll stop now. Major Hofstadter fanboi alert.
Oh wow, that’s neat!! Thanks for the resources, I’ll have a read!
Ahhhhh I consider myself fairly empathetic and as I read this I found myself becoming mildly paranoid I’d get it 🤦🏻♀️ Simply just from imagining too well what it would feel like 🧐
Yes - slowly back away from those thoughts (I thought exactly the same thing!)