Morgellons Disease is labeled as “delusions of parasitosis” or “delusional infestation” by the mainstream medical community, led by the United States Centers for Disease Control and Prevention. This condition is characterized by the belief that there is something crawling under your skin or that you are infested with parasites with no evidence of this being true. Individuals who have 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. But Morgellons patients are regularly told by physicians that they are delusional and require psychiatric treatment rather than physical treatment. They are often dismissed without even 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 these filaments growing out of their skin, but they have open lesions on their skin that itch and are painful. They have incapacitating fatigue, demonstrable changes in mental acuity, and sometimes severe joint pain, among other things. They also suffer from incredible stigma that causes them to feel ostracized and dismissed by the medical community, friends, and even family members. They even become suicidal because of the severity of their illness and, more disturbingly, the fact that no one believes in them.
This research project is designed to help understand Morgellons Disease from the perspective of patients, family members, and providers willing to see Morgellons as a physical ailment. It seeks to understand how patients first realized that they had this condition and the process through which they were diagnosed (or not diagnosed). It hopes to see how patients live their everyday lives from treating the symptoms to handling interactions with others to whom they turn for comfort and support. We want to show Morgellons patients as real people who need help, not stigmatization.
We do not know what causes Morgellons Disease. The truth is that the medical community does not know what causes this disease. There is a growing body of evidence that it is linked to Lyme disease or may be a manifestation of Lyme disease. It may also be a different spirochete infection that is transmitted by ticks, often in conjunction with Lyme disease, which many infectious agents are. However, the large-scale, rigorous studies that need to be done cannot be done without appropriate attention to the disease and funding. The one small study done by the CDC is preventing the needed research from being done because it is touted as “definitive”. It is not. There is evidence available that contradicts it. When this occurs in medical research, the research continues.
We hope to continue the research. This study is about understanding the patients and what they go through. The next step is a rigorous and methodologically sound epidemiologic study of a much larger scale than that done by the CDC. There are people trying to do some of this research, but the prevailing medical belief that Morgellons Disease is psychiatric in origin is preventing them from obtaining funding and being taken seriously as medical researchers. We hope that this project can help shed some light on why the research needs to get done. If you are interested in hearing some of our thoughts on Morgellons, please listen our podcast episode on Beyond the Human:
This newsletter will provide information about the study and what we learn, as well as information about Morgellons Disease itself. If you have an interest in learning, please subscribe! If you are unwilling to consider the possibility that the diagnosis of delusional infestation or delusional parasitosis is incorrect in at least some cases, please don’t. An open mind is necessary for understanding and for ultimately doing something about this disease or any other. We believe that instead of dismissing, we should have an open dialogue.
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The Lived Experience of Morgellons Disease research project is actively recruiting patients, family members, and providers who are willing to talk with us. We are particularly looking for Morgellons patients who are men, people of color, and people living outside the United States. We are also looking for providers and family members. Message us on Substack if you are interested or email us at researchmorgellons@gmail.com. We hope to hear from you!
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