Morgellons and Medical Skepticism: Fibers Under Your Skin? You’re Crazy.
Warning: This post is NSFWS (Not Safe For Weak Stomachs). My parents were both nurses, and my mom was in nursing school while I was a kid, so I’m accustomed to discussing body stuff openly. Dinnertime conversation when I was growing up might have included a story about an alcoholic patient whose colon rolled out of his sphincter (“looked like a red blooming rose,” said my mom), and whenever I or one of my siblings was sick, we would have to give a rundown of our symptoms to my parents (post-nasal drip, yellow phlegm, exactly what kind of diarrhea we might be suffering from and how frequently, etc.). I’ve learned that many, if not most, people aren’t comfortable talking about all of that—especially during a meal!—so consider yourself warned. Nothing in this post is too squicky (I think), but some of the linked pages have bizarre images.
And another note: I kind of regret the fact that one of the first things I’m posting here might make you think I’m a crazy person. It’s timely for me, so I’m just going to put this out there.
Last month I was having a casual conversation about random stuff with my boyfriend Ian. My younger sister recently tried to dig a strange blue speck (a microchip, we joked) out of her arm, so we got to discussing anomalies in skin, the body’s largest organ. I mentioned to Ian that I’d had a larger-than-average blackhead on my abdomen for at least five years. It wasn’t bothering me, and I’d half-heartedly prodded it a few times over the years, but it was still there. He offered to get it for me. (How sweet of him, right?)
After a couple of manual attempts, he bounded off to get his super-sharp tweezers from the bathroom cabinet. We chatted about other things while I lay on my back and he poked and squeezed the strange spot.
A minute later, he said, “Hey, this is weird. It’s like there’s a thread in here.” He started picking at it (occasionally over my vocalized ouches) and said that it looked like it was a bunch of…fibers. He picked some out and held them up in the light to show me, but the position of the lamp made it difficult for me to make much out. I sort of thought he was full of it—I mean, really, what the heck was he talking about? Then I remembered that I’d read something online somewhere about a weird “disease” called Magellan’s or Morganon’s or something where people said they had bunches of fibers under their skin, but I also remembered reading that the fibers were probably from clothing and that the rest was in their heads. I mentioned this to Ian.
He managed to snag a sizeable piece and held it up for me to take a look. It was white, very thin, and A CENTIMETER LONG. WTF?! He said, “This is the sort of thing I’ve been picking at, but they keep breaking off into small pieces. This is really interesting! But what is it?” Um. WTF again.
I replied, “We should look up that Morganon’s thing tomorrow. But really, it’s a made-up disease. At least that’s what Wikipedia implied.” We didn’t have a good way to save the weird fibers at that moment, so I stuck one on a piece of tape and soon went to sleep.
Ian came in the next morning and said, “Oh, I looked up the thing you mentioned—Morgellons. You were right. It looks like the medical establishment thinks it’s all in the patients’ heads. By the way, when did you have Lyme Disease?” A year ago, I said. “And how long have you had this dot?” At least five years, I said, since I remember it being there before I moved to New York. “Oh, well, apparently a lot of the people who have Morgellons also had Lyme; there’s a big correlation.”
“I had Lyme Disease when I was fourteen too,” I responded, starting to feel a little freaked out that THERE MIGHT BE WEIRD FIBERS GROWING UNDER MY SKIN.
Off to Wikipedia we went. Here’s some of what we read (emphasis mine):
“Most doctors, including dermatologists and psychiatrists, regard Morgellons as a manifestation of known medical conditions, including delusional parasitosis.”
“Many dermatologists refute the suggestion that this is an actual disease but instead indicate that many of these patients have psychological problems or other common skin disorders.”
“Symptoms associated with delusional parasitosis…are common side-effects of many prescription drugs or drug abuse. The sensations are real, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.”
“Morgellons patients usually self-diagnose on the Internet…”
“…a patient’s belief in some of these oftentimes unscientific sites online may preclude their trust in the evidence-based approaches…”
“…the Internet is important in spreading and supporting ‘bizarre’ disease beliefs…”
“…the ‘World Wide Web has become the incubator for mass delusion and it (Morgellons) seems to be a socially transmitted disease over the Internet.’”
“Although an apparent association of the condition with the presence of Lyme disease has been reported…further research will be needed to help resolve the validity of Morgellons disease.”
“…many patients with Morgellons disease have positive Western blots for Borrelia burgdorferi, the causative agent of Lyme disease…”
The links in the “See also” section of the article weren’t much more encouraging:
- Conspiracy theory
- Delusional parasitosis
- Munchausen syndrome
- Somatoform disorder
Conclusion at this point: I had fibers in my skin that were the result of a delusion spread by the Internets! They’re not real; it’s all in my head! And my boyfriend’s too!
There was also a link to the Wikipedia article on the Morgellons Research Foundation, so we checked that out. The last sentence of the article reads, “The MRF and the subject of Morgellons have been a repeated topic on the popular conspiracy radio program Coast to Coast AM.” Great. I had to remind myself that I wasn’t the one who pulled fibers out of my skin; otherwise I might have started believing that I was a paranoid delusional conspiracy theorist hypochondriac.
Later at work, I told a few people about the weird fibers pulled out of my tummy. The first person was grossed out even before I reached the good parts of the story. Before I described how the strange fibers looked to the second coworker, he said, “Nah, that’s just an ingrown hair. It’s not a weird disease. I get those all the time. C’mon, be skeptical. It’s nothing special.” But I asked if his ingrown hairs are clear or white, thin, and in weird thread-like bundles. Apparently, they aren’t.
A third coworker remembered seeing an article on Morgellons in the most recent issue of Skeptical Inquirer magazine (March/April 2011). Exciting! We fetched an issue. The one-page article by noted skeptic Benjamin Radford, “The Mysterious Morgellons Malady,” is a summary of some of the same research found in the Wikipedia article. Ben’s piece ends with the following:
Indeed, “At least one scientist—albeit not an expert in the field—is taking it seriously. ‘Morgellons patients have masses of dark fibers visible at x60 magnification under the unbroken skin, while unaffected individuals do not,’ says Randy Wymore, assistant professor of pharmacology at Oklahoma State University. ‘That took away any possibility that this was not a real thing.’” Other researchers have concluded that the fibers come from mundane sources such as clothing, carpeting, or pets. Perhaps Wymore and other researchers will find good evidence of a real disease, but until then, Occam’s razor principle suggests that Morgellons is a mental disorder. (highlighting mine)
Conclusion at this point: Morgellons is probably made up, and if you think you have it, you’re crazy.
Typing “Morgellons” into Google was also disheartening. The first page of search results includes a link to a YouTube video titled “Is Morgellons Disease Caused By Chemtrail Spraying?” Yep, frickin’ chemtrails. *sigh*
I’m glad I took the time to watch the video, though. Disregarding the misleading title, I found that it’s actually a CNN report featuring Randy Wymore, the Morgellons researcher mentioned in Radford’s article. Wymore works with other scientists at Oklahoma State University who are pulling weird fibers out of the skin of Morgellons sufferers and taking a good look:
From the video at 1:33:
“Now they’ve seen about 25 patients, and the OSU doctors are convinced Morgellons is real. But the medical establishment says they are wrong. ‘Morgellons is not real…it’s all in their heads. This is somebody that’s picking at themselves.’ Dr. Noah Scheinfeld is assistant professor of dermatology at Columbia University.”
“Still, no matter who you believe, there was one question no one here could answer for us.
[Reporter:] You’ve looked at these fibers under the microscope. What do you think they are?
[Wymore:] Oh, I have absolutely no clue.”
They also interviewed a biologist at SUNY Stony Brook who found a gene inside the skin of Morgellons patients that only exists in plants (!!). Fascinating!
So, what should one think? How skeptical should I be? I’ve seen with my own eyes some strange fibers that were pulled out from my skin, and I have a witness. Should I be skeptical of the medical skeptics and believe that Morgellons is real? Or should I be skeptical of my own experiences?
Here’s what I actually know:
- There were unusual-looking, thin, clear or white fibers just under the surface of my skin not too far from my navel.
- I’d never seen anything like them.
- I found a few pictures online, including the first two images on this page (NSFWS), that resembled what I saw. The condition described was called Morgellons Disease.
- Many Morgellons sufferers also had Lyme Disease. I had Lyme Disease, twice.
- I do not have many of the Morgellons symptoms listed (skin-crawling sensations, collections of lesions, chronic fatigue, other odd black spots, etc.).
- Morgellons is thought to be a mental disorder by many (or most) in the medical establishment.
- The fibers are thought by some to be from clothing or other “mundane” sources.
- I still do not know what the heck those fibers coming out of me were.
- Best as I can tell, there are scientists out there researching Morgellons who don’t yet know what the Morgellons fibers are either.
Here’s what I believe:
- There are some individuals who think that they have unknown fibers coming out of their skin. Some of those people are delusional.
- Since I haven’t found weird fibers anywhere else on my person, and I don’t have the other Morgellons symptoms listed, I shouldn’t be concerned (yet). But it’s wise for me to keep my eyes open for other skin anomalies and any new research (from reliable, scientific sources—no chemtrail theories!) on Morgellons.
As I mentioned above, my parents were both nurses, and I know that conditions aren’t always easy to diagnose. I also know that doctors are reluctant to give unusual diagnoses. When I was a teenager, I visited multiple doctors for years complaining of pain, numbness, and tingling in my hands and wrists before insisting on the EMGs that finally diagnosed bilateral carpal tunnel syndrome ten years after my initial complaints—because doctors thought I was too young to have CPT. I’ve heard stories from people who have been diagnosed by some doctors with fibromyalgia or chronic fatigue syndrome, but have been told repeatedly by others that it’s all in their heads. I’m personally comfortable ignoring my case for now—unless I see some other strange specks on my skin some day, at which time I’ll check to see if freaky fibers are coming out of them. As for Morgellons, I’m fascinated to see what the research on the fibers shows in the future.
I’m including a couple of links below, both skeptical and skeptical-of-the-skeptics, for those who would like to read more.
Resources that seem to support the existence of Morgellons:
- Center for Health Sciences at Oklahoma State University
- Centers for Disease Control and Prevention (CDC) entry on “Unexplained Dermopathy (also called ‘Morgellons’)”
Skeptical perspectives (or, “Morgellons? You’re Crazy!”):
- Morgellons Watch, with the tagline: “RESOURCES FOR MORGELLONS INVESTIGATORS. SKEPTICAL ANALYSIS AND DISCUSSION.” Articles include:
- “Bad science, done badly. It’s bad.” From White Coat Underground (PalMD) at scienceblogs.com (5/13/2010)