Morgellons Disease
This Month on Beyond the Human
Welcome to Field Notes from the Beyond!
Imagine having tiny blue and red filaments growing out of your skin and an itch that will not stop, no matter what you do. Imagine there is gelatinous material and a glittery substance exuding from your skin that gets all over everything around you. Now imagine that you go to your doctor and are told, without an examination, it’s all in your head. How would that make you feel? This is what patients with Morgellons Disease experience every day from their doctors and, at times, the people closest to them. It ruins lives and causes suicidal ideation and, sometimes, completion.
In this episode of Beyond the Human, we dive into one of the most mysterious and controversial medical conditions of the 21st century: Morgellons Disease. This condition is labeled as “delusions of parasitosis” by the mainstream medical community, led by the United States Centers for Disease Control and Prevention (CDC). Delusions of parasitosis is characterized by the belief that there is something crawling under your skin or that you are infested with parasites with no evidence of it.
People with Morgellons Disease have these feelings, but they also have evidence that there is something else going on. They have microscopic filaments growing out of their skin made of keratin and collagen, natural substances produced by the body, but in this case growing in very unnatural ways. These filaments can be blue, red, black, or clear. They fluoresce under UV light and sometimes have a glittery appearance. Morgellons patients have been told by gastroenterologists and gynecologists that these filaments can be seen on colonoscopy or pelvic examination. Veterinarians have seen these filaments emerging from household pets. Yet Morgellons patients are regularly told by physicians they are delusional and require psychiatric treatment. They are dismissed without undergoing an examination.
Is Morgellons Disease real? Yes, it is real. Real people suffer from it every day in many different parts of the world. These are not crazy people. They are just like everyone else, but are suffering from something terrible and debilitating. Not only do they experience filaments growing out of their skin, but they have open lesions that itch and are painful. They have incapacitating fatigue, demonstrable changes in mental acuity, and severe joint pain, among other things. They suffer from incredible stigma causing them to feel ostracized by the medical community, friends, and even family members. They become suicidal because of the severity of their illness and, more disturbingly, the fact that no one believes them.
Join us as we explore the history of this condition, from 17th-century medical texts to the CDC’s highly contested 2012 study. Through an anthropological lens, we unpack why Morgellons has become a “contested illness,” how medical gaslighting pushes sufferers toward alternative explanations including nanotechnology, chemtrails, and even extraterrestrials, and what this case tells us about power, credibility, and belief in Western biomedicine.
We also examine the leading theories behind Morgellons: Lyme disease and spirochete infections, stress and immune dysfunction, trauma, and even the fringe explanations. We will focus on the lived experience of people with Morgellons based on our own research. Beginning in January of 2024, we conducted nearly 80 interviews, including 70 with patients from three countries on two continents, the rest with family members of patients, providers who see patients with Morgellons, and researchers studying it. These in-depth interviews lasted up to two hours and documented what people with the disease go through every day. The goal of the project was not the argue causation or identify a disease-causing organism, but rather to understand people’s realities and stories. We’re still analyzing the interviews, but listen to Beyond the Human this month to get a glimpse of the kinds of things we learned!
Dr. Ginger Savely
Dr. Ginger Savely is a nurse practitioner who regularly sees Morgellons patients and has written the most comprehensive book on the disease, Morgellons: The Legitimization of a Disease. We highly recommend it!
Below are some additional pictures from this book. These and more are available on her website in full color (https://gingersavely.com/morgellons-book/).
For more information about Morgellons:
Charles E. Holman Morgellons Disease Foundation (https://thecehf.org/)
Fantastic movie, Skin Deep (https://www.imdb.com/title/tt10146070/), written and directed by Emmy winner Pi Ware (https://piwarefilm.com/)
· Available to view FREE on youtube:
Coming Up Next
Next in Field Notes from the Beyond:
9/5: Defining the Paranormal
9/8: This Day in Paranormal History
9/10: Cryptid Compendium: The Loch Ness Monster
9/12: Defining the Paranormal
This Month on Beyond the Human: The Medical Mystery known as Morgellons Disease
Next Month on Beyond the Human: The Culture of Ghost Hunting
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