Pi Ware’s documentary Skin Deep: The Battle Over Morgellons examines whether a skin condition called Morgellons disease is real. To answer that question, he travels a long and tortured road attempting to arrive at a cogent description of the condition, as well as a working definition of “real” in this case.
Morgellons is a contested disease, that is a disorder that has no documented scientific support and for which academic scientific studies have returned negative results. The symptoms of Morgellons vary, but common to most reports of the disease are skin lesions that often have mysterious fibers growing from them. The typical diagnosis is psychiatric, rather than dermatological, “delusions of parasitosis:” delusions that parasites have infested one’s skin. The lesions are generally believed to be caused by scratching or digging at the skin. The fibers are thought to be human-made textiles from clothing or washcloths.
The documentary follows those who’ve self-diagnosed, and the organization they’ve created advocating for sufferers, led by a nurse with the condition named Cindy Casey. Ware interviews doctors who’ve treated these patients, including dermatologist Dr. Stephen Feldman from Wake Forest, who was willing to attend a conference and speak to the group, despite knowing he’d be cast as antagonistic to their cause. He says of the disorder, “What is real? Patients are suffering, and we should help them… “
“…examines whether a skin condition called Morgellons disease is real.”
The Charles E. Holman Morgellons Disease Foundation advocates for recognition of the disease by the medical community, insisting that it’s not a psychiatric disorder. These assertions are problematic for obvious reasons: a self-selected group is demanding that science validate a hypothesis they have already concluded is true. This is not how the scientific method works. When doing experimental research, validation isn’t on the table. Experiments are devised that test various theoretical answers to a question. If the results of the experiment are negative, then that theory is not considered to be true. So far, no research has established a predictable, repeatable root cause that rationalizes all the reported symptoms. They promote pseudo-science, and many members come across as conspiracy theorists. Like UFO enthusiasts, they often argue that the lack of evidence constitutes evidence of a cover-up or neglect.
The filmmaker is biased, declaring his support of Morgellons as real, and for more research (never a bad thing). But also demands the disease be recognized without scientific proof. The film concludes with a pitch for donations. Despite his position, Ware does a credible job of balancing the Morgellons community, and the scientific investigations into the disease. He neither lionizes nor demonizes either group, which is impressive.
The name of the disease goes back to 1609 when Sir Thomas Brown described an illness characterized by “outbreaks of harsh hairs” on the backs of children in Languedoc, France, where the disease was called Morgellons by the locals. Thus, modern sufferers who have organized around their ailment call it the same.
There’s a nurse practitioner named Ginger Savely who rents ballrooms in hotels to “treat” Morgellons patients with a variety of unorthodox methods. Noble as that seems, she goes by Dr. Savely, despite having no MD degree or license. So, are these people in pain being cared for or taken advantage of?
"…What is real? Patients are suffering and we should help them…"