Note: Banner image by Neel Shah
Hello listeners, and welcome to episode 16 of the Mad Scientist Podcast. I hope the first feelings of warmer weather are coming your way, as I know they sort of have here in the mountains of New Hampshire. We had one day that was like 60 degrees recently which was pretty sweet, but it then went back to being nearly 0 at night so yea, back to winter. Before this episode begins, we have some housekeeping once again to take care of, so lets jump right into that before getting into this episode on Morgellons disease.
So number one, a tremendous thank you to everyone who has listened to this show. We hit 10,000 downloads the other day, something that is pretty amazing for something I write and record in my underwear on the weekends as a hobby. My 10,000th downloads wouldn’t of been possible without the help of some amazing friends I’ve made already in my podcasting journey, including TJ at Pints and Puzzles, Scott and Forrest at Astonishing Legends, and of course Marie Mayhew my roundtable co-host. Everyone else in the ARC has been a huge help too, including Tess, Miranda, Rob, and too many other people to name. My podcasting time already has had me investigate things I never thought I would be able too, speak to experts on the sorts of mysteries I used to dream about researching, and adding my small voice to the huge river of podcasting. And it wouldn’t have been possible without those of you who listen to this show every week, or well, every time I get my crap together and publish a new episode.
Another big new thing going on this week is that we have ANOTHER Patreon supporter, and this time in our highest level available. Travis Steinbock, you are the very first stibnite level supporter of the show, and you are awesome. Thanks for the love and I hope to keep you coming back for more! The sticker and thank you doodle is being prepared as I write this. If you would like to join our Patreon team you can do so at Patreon.com/themadscientistpodcast all one word. There are different levels of support, with cool crystal names and everything, so check it out if you can. This show is 100% listener supported at this point, so if you like the show and would maybe like to hear more of it, please consider donating. Already donations have allowed us to upgrade the account to allow for both roundtables and full episodes, as well as create stickers! We also used some of this money to build a website, which is now available and will contain transcribed show notes, links to stuff, funny pictures, and other content. It also has a store where you can buy the stickers! Soon this website will include more merchandise, and Youtube videos as soon as I get my act together.
Finally, on a personal note, this is my last semester as a graduate student. I have finally gotten a firm, no more hand waving date for my dissertation defense, and so soon I will hopefully be a doctor of mad science, or more honestly a doctor of chemical engineering. That means that podcasting in the next few months will be slightly hectic, hence the more often roundtables which really don’t take nearly as much time in planning or editing as these full episodes. Now I am still planning on doing 2 full episodes a month as well as 2 roundtables, and in fact that number may even increase with special interviews and things with some of my friends in the podcasting world, but things may get a little crazy as I get fitted into my wizard robes. So I apologize in advance if I am late on an episode. I would love to turn this into a full time job, but frankly at the moment this is a labor of love. And like all labors of love, sometimes they must be stomped to the curb by the cold hard boot of adulthood.
Ok, housekeeping DONE, commencing podcast proper. This will be one of the last episodes on our series of medical weirdness, with this episode and then the next one likely being the final two. This one is a long time coming for me, and in fact this topic was one of the first ones that made me want to start a podcast in the first place. This episode we will look at Morgellons disease and Electromagnetic Hypersensitivity, two conditions that the medical literature suggests are completely made up, and yet which has suffers numbering in the hundreds. These are what I would term made up diseases, although I’m only doing that because I can’t think of something that rhymes with fake news. As an aside, I think it would be really funny to do an SNL sketch or something where Alec Baldwin’s Donald Trump only says things that rhyme with fake news. Like he’s giving an interview and they ask him about his wife Melania’s modeling pictures, and he dismisses them as “Fake nudes”, or he’s getting flustered and so he shouts at the reporter that she has “Fake boobs”, or he says that these recent bouts of anti-Semitism aren’t really a big deal because he’s read they are being perpetrated on behalf of “Fake Jews”. Just saying, SNL you can have that one for free.
So these conditions are really quite strange, because there are people who claim to have physical, verifiable symptoms but which medical science has not been able to quantify or find evidence for at all. What’s going on then? Is there a history of fake diseases, and if so how can we explain them? Is it a symptom of modern life, or is it a symptom of the human condition generally? Or is there really something medically going on with these people? We’ll try to find out, on this weeks episode of the Mad Scientist Podcast.
EPISODE 16: Morgellons and Electromagnetic Hypersensitivity
Ok, the first thing we need to talk about this episode are memes. In many ways, these two diseases we’ll discuss this episode, and many of the stuff we talk about on this podcast generally, can be dissected and analyzed through the lens of memes and how they spread. I’m sure some of you are scratching your heads here though, since what a meme is may not be clear. To many online now memes are those weird pictures with the white text that make you chuckle. But a meme is actually a pretty interesting concept in anthropology and sociology. Memes were developed and thought about initially as the consciousness equivalent to a gene, and as a gene can be carried or transmitted by a virus or viral host, in biology and were first discussed by Richard Dawkins in his book “The Selfish Gene”. Memes are things in this sense which carry social thought, ideas, symbols, practices, and prejudices, and which transmit from person to person through the media and most famously today via the internet. They become a part of the social consciousness almost on their own, without someone meaning to spread them but simply getting out there, and eventually become parts of the social fabric. Things like “Hasta La Vista, Baby”, that stupid dancing hamster from the 90’s, the Golden Girls theme song, getting down on one knee to propose, all of these are memes which spread around us. And they spread and change and seem to compete with one another for relevance and advantage, in a pseudo evolutionary way, just as genes compete in the replication of those species that continue them. It’s sort of like that line from mean girls, “Don’t try to make Fetch Happen, it’s not going to Happen”. Fetch won’t happen unless it can compete with other silly words to convey that something is fashionable, like “hip” or “cool” or “sick” or “Phat” with a ph. And memes do have with them social advantage right, if your wearing a cape and a trilby hat everywhere people with think you’re a weirdo and stay away from you. Whereas if you sort of get yourself in line with the current social structure, and don’t rebel or non-conform, you will have a much easier time succeeding. And of course, the philosophical team of Adorno and Horkheimer would argue that rebelling itself is a socially accepted means of making that which was previously dangerous to the standard power structure in society no longer dangerous but accepted, so things in this field can get messy quick.
Obviously this gets us dangerously close to Just-so stories, those fake things people use to explain human behavior in terms of evolutionary theory. Saying something stupid like “dudes play guitar because it gets them laid because its better for their evolution” is ridiculous. But saying that “someone might pick up a guitar because it is social advantageous” may not be so silly. And although getting from socially accepted to genetically accepted is a wide leap, I think the concept of memes generally can be really useful when looking at societies and ideas and how they spread.
Secondly, we need to talk about just what the heck is Morgellons and Electromagnetic Hypersensitivity. I think one of the best descriptions of it, and its relationship to the world of memes, is from a letter to the editor titled “Morgellons Disease as Internet Meme” published in the journal Psychosomatics in 2009, from a team at the center for addiction and mental health in Toronto, Canada. I’m going to read the entire letter to the editor here, because I think it makes the point I’m interested in, and gives an intro to Morgellons, better than I could hope to.
“To the Editor: In 1690, Sir Thomas Browne, an English Physician, made mention of a pediatric medical condition that he called “The Morgellons”. “Hairs, which have most amused me have not been in the face or head, but on the back, and not in men,but children, as I long ago observed in that endemial distemper of little children in Languedock, called the Morgellons, wherein they critically reak out with harsh hairs on their backs, which takes off the unquite symptoms of the disease, and delivers them from coughs and convulsions”. The Morgellons faded into obscurity and was rarely mentioned until 2002, when the mother of a child with a skin condition resurrected the term and began the Morgellon Research foundation. According to the Morgellons research fountain, Morgellons disease is newly described illness first noted in 2002. It is characterized by a number of symptoms, such as fatigue, skin lesions, diffuse musoskeletal pain, cognitive dysfunction, and emotional lability. Notably, patients with the illness describe filaments of various colors spontaneously growing from their skin, as well as the sensation that insects are crawling under the skin. There has been much debate over the nature of Morgellons: infectious, environmental, and psychiatric etiologies have been posited.
The term meme was coined in 1976. Meme was chosen to be phonetically similar to the word gene in order to highlight the similarities between the two terms. It is an amalgam of the words memory and gene. Genes can be considered as units of genetic material that “compete” with each other for survival. Similarly, Dawkins suggested ideas are engaged in an analogous struggle with each other to attain dominance in the marketplace of ideas.
The recent success of the Morgellons disease meme is, in part, explained by the fact that the Morgellons label resonates with symptomatic individuals. IN one persons words: “I felt so relieved. I found all these people talking about the same thing I was”. Accordingly, Morgellons disease has been considered a rapport enhancing term in clinical medicine. The dermatology literature indicates that Morgellons disease is likely the equivalent of “delusional parasitosis”, a psychiatric illness in which patients erroneously believe that their skin is infested with parasites. This competing conventional meme has been unpopular among individuals identifying themselves as having Morgellons disease.
For Morgellons disease, most information available to patients exists on the Internet, thus the world wide web is a second important contributor to the proliferation of the Morgellons moniker. With widespread reports dating back only about 3 years, Morgellons has seen explosive growth for a concept dormant for more than 300 years. A large CDC-supported descriptive study is underway: a first formal clinical epidemiologic investigation of the Morgellons phenomenon, involving skin biopsies and fiber analysis. Results will characterize Morgellons as either a novel illness or an internet meme synonymous with one or more previously described disorders.
Andrew Lustic, M.D.
Sherri Mackay, PhD.
John Strauss, M.D., m. Sci.
Center for addition and Mental Health, Toronto, Ontario, Canada”
So Morgellon’s is the string disease, you’ve probably seen posts about it online or funny comics about how silly it is, and in many ways it is somewhat silly. I like to put always tie it back to a really funny sort of carnival trick, which is the magnetic boy or magnetic man. These were, and still are in some parts of the world, people who could supposedly have metallic objects stick to their bodies by some sort of weak magnetic attraction. The show Stan Lee’s Superhumans did an episode on a man who claimed to be magnetic in fact, and its one of my favorite TV pieces ever. They are investigating this guy, and talking about all these crazy things like maybe his body has suction cup like pieces on his skin, or he really is magnetic in some way, or whatever, and so they investigate him. And it turns out, he’s just like…really dirty and sweaty. He’s so sweaty and dirty in fact that the objects can stick to his skin, just from the natural oils and whatever he is making in his pores. So not a superpower, but a potentially handy trick to see if your kids really did use soap in the bath. James Randi did a whole thing where he proved magnetic people were in fact just greasy when he put talcum powder on them, causing them to lose their magnetic powers of attraction.
Anyways, as the letter states Morgellons has really been on the radar of the public since the early 2000’s. Sufferers claim to have rashes or weird growths like fibers coming from their skin, crawling or biting sensations all over their bodies, extreme fatigue, memory problems, and difficulty concentrating. It’s pretty crazy, but that original description from Sir Thomas Browne was from the Langeudoc area of France, where children would often die in horrible agony after suffering from some sort of skin condition that seemed to leave them itching and with horrible rashes throughout their skin. But despite what that earlier letter stated, the condition never really went out of vogue, but simply wasn’t really interesting to the prevailing medical fields. One other early description, as well as the potential “cure” or treatment, is given in the Observat. MEdicae. Rarae by Schenckius from 1610. It states the following:
“There is a type of intercutaneous worm which is wont very frequently to infest infants under six months and not infrequently also children of two years or of about that age. They are born, in preference to all other places, in the muscles of the arms, legs and back, and arise from an excrementory humour which is contained within the pores of the body, and is common at that age. This, because of the repression of transpiration and dispersal, undergoes putrefactive changes and becomes alive and, in proportion to the number of receptacles of the pores, is converted into worms, which have a shape not at all unlike those that are born in putrefying cheese, but very much smaller. They never creep entirely out from the pores, but protrude their little heads, which are distinguished as so many black points. How should they not then be most troublesome, for by exciting a sensation of extreme warmth and, at the same time, of itching, they bring in their train insomnia and restlessness. Where they are packed together in large quantities and are increasing, there they plunder away the living flesh, in the same way as do pediculi, the nourishing humours, taking for themselves that which should have been for tender bodies. Because of this little children pass rapidly into wasting and extreme emaciation. As soon as the women become aware of this, they bring them to the sweating chambers and turkish baths. They first soothingly massage the muscles and affected parts with the hand, and then also anoint them all over with honey. By this device the worms are enticed out as far as possible and so killed. The further prescription of the surgeons that their protruding heads should then be mown down with a razor is not, however, followed by our people so much as it deserves. Our German people refer to these as Mitesser and die zehrende Wurm [sic] from the fact that they seize for themselves and consume the food of the infants whom they infect. The Norumbergians call them die durzemaden [sic] or, as you might put it, the worms that induce wasting.”
These are followed by other decsriptions of similar diseases, for instance strange comedones or blackheads seen in children, and especially in the children of the impoverished areas. So there is some evidence of a continued belief at least in this sort of condition, but not so widespread as to suggest anything like one expects with a real disease. I mean, even very modern understandings of psychological illnesses, which are still quite difficult to diagnose, have historical cases or studies that have been performed. The history of Morgellon’s instead is one of odd rashes and unexplained dermatological issues, something that really, when you think about it, isn’t all that hard to understand. I mean, think about how often your own skin maybe has a weird reaction to some cream or something in the air that causes it to turn red, or maybe a weird pimple that pops up seemingly out of nowhere.
Anyways, modern interest in Morgellon’s centers around two basic camps. The first, that Morgellon’s is most likely something psychological, such as a psychosomatic disorder akin to compulsive skin picking or hair pulling. This is the side of firm medical science, frankly, and has been backed up by some peer reviewed research, although results continue to come in to make a more firm ground for these claims. On the other side you have the Morgellons Research Institute, or the more serious sounding Charles E. Holman Morgellons Disease Foundation. So ok, whats really going on here with Morgellons?
Well, first off who does Morgellon’s affect? Although historically it seems that it has affected children in poor areas resulting in worms coming from the skin, today it affects older people, primarily women, and results in rashes, chronic fatigue, and fibers coming from their skin. Some claim that this is caused by Spirochetes, a class of bacteria that sort of look like fibers, that they believe have infested them and are what is coming out of their skin. Some may believe they have Chronic Lyme disease or Chronic Fatigue Syndrome, other disorders that there are just huge online communities for but which there is no real evidence to support. Chronic Lyme Disease is famous in my circles at least because Yolanda Foster on the Real Housewives of Beverly Hills claims that she has it. This is supposedly also caused by a Spirochete infection, but there is no evidence for chronic Lyme disease, nor for the efficacy of the often expensive and prolonged treatments that quack doctors will try to sell you. Other claims of Morgellon’s being caused by Chemtrails, a whole other can of worms, forgive the hilarious pun, or by environmental pollution or something are also completely unfounded to date. But people do really seem to be suffering. There are a lot of communities online, and people who claim that their lives have been so negatively affected by this that they can’t work or live their normal lives anymore. So what the hell is going on?!
Now for the science. There has been a few good research papers published on Morgellons, but only a few from truly reputable scientific sources. Probably the gold standard comes from an article written by Pearson et al, titled “Clinical, Epidemiologic, Histopathologic, and Molecular features of an Unexplained Dermopathy”, published in the journal PLOS one in 2012.Their analysis was done on Morgellons cases in Northeastern California on peoples over the age of 13 reported during the years 2006-2008 enrolled in the Kaiser Permanente healthcare system in Northern California. To find their study patients, they searched for people who had reported Morgellons like symptoms to their doctors. So they searched through the entire like, 3 million enrollees of the health system, to get their 115 case patients, who were then given online surveys first, and then some who showed continual problems with their skin and were over the age of 18 were brought in for clinical tests.
From this survey study, they found that the prevalence of Morgellon’s was around 3.65 cases per 100,000 people, with no clustering of cases which may suggest an environmental or infectious source. 77% of those suffering were female, and 77% were Caucasian. From the clinical testing of cognitive and psychological function they found that the majority of those tested showed signs of cognitive impairment in some way, with the most dominant being in attention (with 18% showing lowered attention compared to average) and 16% with memory. 63% showed elevated levels of somatic concerns, with somatic concerns being the scientifically polite way of saying they had irrational fears or anxieties about their health. Of those showing these elevated irrational anxieties about their health, 39% had evidence of co-existing depression, 37% had evidence of another co-existing psychiatric condition, 50% tested to levels of severe impairment of cognitive function. And 24% of those showing elevated levels of somatic complaints showed significant past or present drug or alcohol abuse.
From their lab results, the only evidence of a common skin condition was that they all showed some premature skin aging from sunlight. Which I mean, makes sense for people living in California who are like 50 years old on average. A small number showed evidence of inflammation that was clinically significant, while most showed no evidence/were borderline or had previously diagnosed problems like thyroid conditions. Only one patient showed signs of a Spirochete bacteria, although subsequent testing showed this was a false positive. Although 8% did show evidence of roundworm, and another 8% evidence of a threadworm. Problematically, the lav results found that at least one drug was detected in hair samples of 50% (20 out of a total of 40 patients) of case patients who reported Morgellon’s symptoms, including 3 who had taken amphetamine, 1 barbituates, 8 benzodiazepine, c7 annabinoids, 2 cocaine, 8 opiates, 1 propoxyphene. I don’t know if maybe my street cred is starting to drip away now that I’ve got a real job, but I actually had to google propoxyphene. Evidently it’s a opiod pain reliever.
When they looked at their skin, doing biopsies on collected samples (61 total collected samples), they found that 51% of lesions showed signs of solar elastosis or sun aging. 40% showed evidence of excoriation or chronic irritation, which they suggest was in line with anxious skin scratching or picking, or the presence of itchy nodes on the skin. And 16% showed features consistent with bug bites or drug allergies. In the biopsied skin lesions, 43% showed evidence of something there, but in most cases this was found to be cellulose or in other words, cotton. They also found evidence in two cases that people had a wound heal around cotton or silica material, likely from continued picking at the skin or continued excoriation. No weird bacteria was found, and from normal sites everything looked completely normal.
They also looked at the fibers themselves people brought in. 83% of these were protein based, either being skin things or cellulose again from cotton. Some even showed evidence of Dyes, and FTIR proved without a shadow of a doubt that the fibers were in fact cellulose. The only samples that were non-protein were nylon, cellulose nitrate containing bismuth which means it was probably nail polish from skin picking, and polyethylene which they thought may have been a contaminant, but in any case doesn’t grow from the body at all anyways.
The entire study is available on our website, but lets go through it in review anyways. Clinically, they found that a majority of patients with the worst morgellons symptoms had some evidence of a tendency towards irrational anxiety about their health, and half had a history of or currently tested positive for drugs. Even if we ignore the weed, cause like whatever, its California, a large proportion of those with the mysterious skin disease took drugs that historically cause you to pick your skin and create odd rashes and bleeding. Besides these psychological evidences, the skin biopsies and fiber analysis showed absolutely no evidence at all of anything to suggest a natural cause for this disease. Everything points towards Morgellon’s being caused by people picking their skin compulsively, or some other psychosomatic cause that makes them think they have a skin condition. I don’t want to make it seem like I am belittling those with Morgellon’s, because they clearly have a problem that is affecting their life negatively. But I think it is unfair and damaging to not call something that quacks like a duck and walks like a duck a duck. If you are suffering from compulsive skin picking or anxiety issues, please go see a psychologist or tell your primary care physician. There is no shame in having a problem handling anxiety, suffering from depression, or having some other mental health challenge. I myself have spent my life dealing with one, and it is something that you should get in check for the betterment of your life.
Now there is a fly in all this ointment of course. There are papers out there suggesting a link between Morgellon’s and spirochetes, or that these fibers aren’t really non-biological fibers but some kind of skin condition. But as far as I can tell, these are all coming from the same few researchers who work for the Morgellon’s research institutes. And these institutes of course don’t publish under their full name, which has Morgellons in it, instead they publish under the title of Lyme Disease institute or the Charles E Holman foundation. Most of these studies have small numbers of patients, and all surprisingly show positive results indicative of Morgellon’s according to the authors. Like, 100% success rate in finding patients. That seems…..odd. Most of their papers are histological, meaning they are primarily images of these fibers, which yes look weird but again we all know fibers are present in the patients. And none of their results have been verified by outside sources to date. And that’s the real key here. Maybe Morgellon’s is real, despite all the evidence, but right now there are two camps. One from an institute which only exists if Morgellon’s does, and which takes donations of course to cure this horrible disease. And the other, which doesn’t make any money if Morgellon’s does or doesn’t’ exist, and which has a history of scientific rigor and good data. I think you can tell which side of this I stand on.
Morgellon’s disease is probably one of the strangest ‘fake’ diseases to really take the internet by storm, but it isn’t the first glimpses of illness seeming to spread as a meme or viral idea on the internet. If you are a person who grew up online as I did, I’m sure you’ve become aware of fad conditions or diseases that spread from school to school. These are conditions or problems that people, and commonly immature young to teenaged kids, seem to find some identity or explanation of their personalities in. These sort of pop-psychology diagnoses are I think almost a way of disaffected or marginalized young people to find acceptance in a previously set up framework online. Just like those cliché high school movie archetypes like the goths, preps, and jocks exist, so too do online archetypes of the same flavor but condensing around peculiar identifiable traits. And in some ways, I think that one of those identifiable traits has become illness, or at least things like social anxiety or depression or even Asbergers syndrome.
Now I don’t want to make it sound as if I am belittling these very real conditions by lumping them in with these ones that we’ll find out pretty shortly may not be all that real. Mental health problems are a huge challenge, and they require the same sort of careful approach and directed treatment as other lifelong and debilitating illnesses. So when I say that people are going online to find groups to identify with by using these labels, I don’t mean that people who are really suffering from these problems are going online to whine about it to get attention or something. What I mean are those cases where the labeling as being “ill” or having a certain condition bring with them social benefit, and because of this lead to their spread as memes throughout school cafeterias or internet chat rooms. They often utilize real conditions that are debilitating, but which the person using them may view only superficially. Does every teenager who goes online to read about Asberger’s really have it? Probably not, but they are likely awkward and anxious a whole lot. I know I was.
A really recent version of this meme spreading of disease is gluten intolerance. Suddenly everything has gluten free options, even the girl scout cookies I bought yesterday had a gluten free cookie new this year. And one I definitely remember is the fear that cancer could be caused by cell phones held up to your brain. Another interesting version of this is Electromagnetic Hypersensitivity. This is a condition supposedly caused by Electromagnetic radiation, which sufferers claim cause them to feel extreme pain, or fatigue, or headaches, or stress, or aches, or all kinds of things frankly when their body is in the presence of one. Which, ok, besides the fact that we are always in the presence of electromagnetic waves, even if you wear an aluminum blanket like Sauls Brother on Better Caul Saul, there is no reason to suspect some kind of biological component to this disease. And your probably at home saying like, well, ok, if someone has this, then can they really tell the difference between when a electromagnetic wave is present and when its not? And the answer to that question is a resounding no. Tests where electromagnetic fields are shot at a person basically and they asked if they feel it or not show that those suffering from Electromagnetic Hypersensitivity basically show the same rate of correctness as if it was up to chance. So absolutely no evidence that they can feel the waves at all. And in fact, recent evidence shows that the best way to treat this disorder is the same way you treat any phobia, through a method known as cognitive behavioral therapy or CBT, where your fight or flight response is induced by putting you in a scary or uncomfortable situation and you are kept there until your anxiety level drops. This suggests probably strongest of all for a mental or somatic explanation for electromagnetic hypersensitivity.
And I think, frankly, the same sort of treatment will be found to be effective for Morgellon’s. There just isn’t any evidence at all out there to support its efficacy. And look, if someone brings a fiber to a lab and its shown to be caused by a spirochete or something I’ll come on here and say I’ve been wrong. But there just isn’t any good, non-biased, not being run by an institute with Morgellon’s in their name science to support it.
That’s it for this weeks episode of the Mad Scientist Podcast. This week’s music comes from (T-T)b, a band that has one hell of a Chemical Engineer in it. They are amazing, and their latest album is called Slimy Quagmire. Their band name is parenthesis, upper case T dash upper case T, end parenthesis, lowercase b, which is pronounced Tee-Tee-Bee. I had a really hard time picking a song for them, because like every song on this album is comically good, but this one is called Knucklehead. You can find them on facebook, bandcamp, and around Boston, and get links to their pages on the podcast website under the notes for this show!!