Cindy Casey-Holman, documentaries, Edward Hu, Ginger Savely, Harry Quinn Schone, Kelly Pickens, Marianne Middelveen, Morgellons, movies, Pi Ware, Randy Wymore, reviews, skin care, Skin Deep: The Battle Over Morgellons, Steven Feldman
March 31, 2020
by Carla Hay
Directed by Pi Ware
Culture Representation: Taking place in various parts of the United States, this documentary (which interviews mostly white people and a few Asians) examines the controversies over the medical validity of a debilitating skin condition that’s known as Morgellons, featuring commentaries from patients and medical professionals.
Culture Clash: People in the documentary disagree over whether not Morgellons should be officially recognized as a disease by the Centers for Disease Control and the U.S. Department of Health and Human Services.
Culture Audience: “Skin Deep: The Battle Over Morgellons” will appeal mostly to people who want to learn more about what’s being done about Morgellons and will also appeal to people who like watching documentaries about rare medical conditions.
The documentary “Skin Deep: The Battle Over Morgellons” takes an up-close and personal look at what is currently a controversial medical mystery: Morgellons. Is it an undiagnosed skin disease or is it a figment of mentally ill people’s imaginations? The medical community is divided over what is the real answer. This documentary (directed by Pi Ware) responsibly presents both sides of the argument, but the film unquestionably sides with the patients who say that they have Morgellons.
People who say they have Morgellons have similar physical characteristics: They have painful skin lesions and open sores that often have hair or different-colored fibers growing out of these sores. The people with this condition also say that they feel like bugs or small animals are trying to crawl out of their skin. In addition, they also report having memory loss or other signs of neurological degeneration. (These are also characteristics of heavy methamphetamine use, but many of the people who have Morgellons are not meth users.) Because Morgellons seems to be a very rare condition that is not officially recognized by the Centers of Disease Control (CDC), many medical professionals are reluctant to diagnose patients with Morgellons.
Complicating matters is that fact that people with this skin condition often use extreme measures to try and get rid of it, which might or not not be indications of mental instability. In a medical consultation on camera with nurse practitioner Ginger Savely (who’s a Morgellons patient advocate), one Morgellons-stricken man in the documentary tells her that he’s been using a homemade, medically unapproved “remedy” of a topical paste that includes DDT (the main ingredient of insecticide) to treat his skin condition. The patient swears that this home remedy has been working for him. Savely, who is only consulting with him and is not his main medical professional, literally cringes and says that the DDT ingredient is “toxic.”
This inclination to treat the problem with self-remedies is why many medical professionals think that people who say they have Morgellons are really just mentally ill and should not be coming up with their own medical solutions to a problem that isn’t fully understood yet. People who have Morgellons are often accused of causing their skin sores through self-mutilation.
The documentary points out that there are some people who think they have Morgellons, but they actually don’t, and it’s those misinformed people who are giving the “legitimate” Morgellons patients a bad name. But herein lies the problem: Even if doctors believe that Morgellons is a medical condition, they often don’t agree on what would make a “legitimate” Morgellons patient.
Cindy Casey-Holman, a former registered nurse, is one of the leading activists to get medical professionals and health-related government agencies to take Morgellons seriously. In the documentary, she said she first noticed that she had the characteristics of Morgellons in the mid-1990s. In addition to the skin sores, she had a low-grade fever, swollen feet and a lot of anxiety. Betsy Anderson, one of her friends and a former co-worker, is interviewed and confirms this information.
Since no doctor could diagnose what was wrong with her at the time, Casey-Holman said that she did the best she could to try to get better, and the symptoms eventually went away. However, the symptoms returned about seven or eight years later at one of the worst times imaginable: close to her wedding date. She’s had the condition in varying forms ever since, although she says at the end of the film that it’s nowhere near as bad as it was for her back in the 2000s.
Casey-Holman’s husband Charles Holman (who has since passed away) and an advocate named Dr. Greg Smith teamed up to co-found a nonprofit activist organization called the New Morgellons Order. That organization has since morphed into the Charles E. Holman Morgellons Disease Foundation, of which Casey-Holman is the director. She says in the documentary that she is based in Hughes Springs, Texas, after living in San Francisco for many years.
She is also the chief organizer of an annual Morgellons Conference, which gets a lot of screen time in the documentary. The movie doesn’t specify what year that the featured conference took place, but it’s mentioned that the conference was at a hotel in Austin, Texas. It’s a small event. Casey-Holman says in the film that the conference has less than 100 people attending per year. And in a room for panel discussions and speaker presentations, it looks like there are about 50 people or less in the room at any given time.
Casey-Holman says that people who believe they have Morgellons began to find each other through the Internet, beginning in the late 1990s/early 2000s. It was around this time that the media began reporting that people had this skin condition. People who say that they have Morgellons were once relegated to just Internet chat rooms to share their stories with others, but then they were starting to be interviewed on national television in news reports about Morgellons. And that’s when this skin condition started to get even more media attention.
The medical skeptics about Morgellons say that the publicity over Morgellons is one of the reasons why they think Morgellons is a medical hoax. Dr. Timothy Berger, a University of California at San Francisco dermatologist who used to be Casey-Holman’s doctor, comments on Morgellons: “I believe this was an Internet-associated situation. I hadn’t seen patients with the fiber complaint until the fiber story got universally spread.” Berger then compares people who say they have Morgellons to Vietnam War veterans who blamed their sicknesses on Agent Orange.
Another medical skeptic about Morgellons is Dr. Steven R. Feldman, a dermatologist based in Winston-Salem, North Carolina. He gets the most screen time in the documentary’s presentation of anti-Morgellons viewpoints, and he’s the closest thing to a “villain” in this movie. For starters, Feldman comes across as arrogant and condescending. He freely admits that in dealing with patients, what he says isn’t based on the individual but is often pre-rehearsed, canned talk. He also admits that he can appear to have a cheerful demeanor with patients, but it’s actually forced. “It’s for show,” he says.
When commenting on Morgellons, Feldman says, “Doctors can’t find anything objective causing these sensations … Morgellons and delusions of parasitosis, to many physicians, are exactly the same thing.” And to further drive home the point that Feldman is the “jerk” of this story, during his lecture presentation at the Morgellons Conference featured in the documentary, he tells the attendees that they’ll get better results in doctors’ cooperation if they are polite and nice to their doctors.
But what really sets off some of the attendees to respond angrily is when Feldman makes this outrageous statement more than once during his lecture: “I don’t believe that there are any bad doctors.” (Tell that to state medical licensing boards that have revoked numerous medical licenses for doctors due to malpractice or other reasons. There are also many doctors who have been convicted of medical-related crimes.)
Feldman’s statement that there are “no bad doctors” causes one particular conference attendee, Morgellons activist Kelly Pickens, to shout a rant at Feldman before storming out of the room. She later confronts Feldman again in a hallway after the lecture. Pickens has a tragic story that is told in this documentary, but that information won’t be revealed in this review.
Another Morgellons patient who’s featured in the documentary is Edward Hu, a former attorney in San Francisco whose medical condition became so severe that he had to leave his job as a federal public defender. His medical problems led to a falling-out between him and his younger brother Brian, a doctor who’s been skeptical that Morgellons is a real medical condition. The documentary shows Edward Hu in various states of his condition (some better than others) over time, as well as the two brothers’ attempts to reconcile.
Are there any doctors who believe Morgellons is real? Yes. The documentary interviews some of them. One is Raphael Stricker, an internist who considers himself to be a Morgellons specialist. He says that people who believe that they have Morgellons should try to avoid bringing in their own skin samples (often called “matchbox signs”) for doctors to test, unless those samples are specifically requested. As Stricker says in the movie: “Doctors make fun of the matchbox sign, because they see it as proof that they [the patients] are crazy.”
Another advocate for Morgellon patients is veterinary microbiologist Marianne Middelveen, who teamed up with Stricker to test a hypothesis that Morgellons could be caused by bacteria. The study’s results, which are shown in the documentary, suggested a strong correlation between bacteria and this skin condition.
The documentary also covers the long-held belief that Lyme disease could linked to Morgellons, since the symptoms for Lyme disease are similar. Another theory is that Morgellons is caused by a source within the body (such as a genetic defect) and not from a source that was introduced to the body, such as external bacteria. None of these theories has been medically proven.
In the documentary, Harry Quinn Schone, a medical historian and author of “Contested Illness in Context” mentions that for decades, medical professionals thought ulcers were caused by stress until it was proven that ulcers were caused by bacteria. But it took a lot of controversy, skepticism and scientific research before that conclusion was reached by the medical community. Schone suggests that Morgellons is in a similar misunderstood gray zone that ulcers used to be in, when it was believed that the cause for ulcers was more emotional/psychological than physical.
Another medical expert who is an advocate for Morgellons patients is Randy Wymore, an associate professor of pharmacology at Oklahoma State University. He believes that the CDC conducted a very flawed study that concluded in 2012 that Morgellons had no underlying medical condition or no infectious source. Wymore says that the sample size for the study was too small; he claims as little as 12 people actually participated in the study.
And according to Wymore, the long questionnaire that the CDC gave to people who were potential study participants showed a lot of bias in favor of the theory that Morgellons patients had psychiatric problems. The documentary does not mention if the filmmakers made any effort to contact the CDC for comment. The good news, says Wymore, is that because of continued testing, he’s seen that doctors are becoming less skeptical of Morgellons and are becoming more curious about how to treat this condition.
“Skin Deep” is undoubtedly sympathetic toward the patients, but there’s very little investigation into how authentic their stories are. As viewers, we’re supposed to take their word for it that the sores on their skin just mysteriously appeared with no explanation. While it might be true for some, it might not be true for others. The documentary doesn’t really try to prove the credibility of anyone identified in the film as a “Morgellons patient,” except for Casey-Holman, who has the aforementioned friend backing up her story.
“Skin Deep” director Ware also injects some melodrama by including re-enactments using actors. These re-enactments are borderline manipulative/cheesy and don’t seem very appropriate for a documentary about a topic as serious as people’s medical problems. Despite these flaws, “Skin Deep” does make it clear that even though people can disagree on what causes Morgellons, there are physical manifestations clearly showing that something is definitely wrong with these patients. The issue is what is really causing these skin sores and other problems associated with Morgellons.
As shown in the movie, because Morgellons is such a mysterious condition, patients are often not believed not just by medical professionals but also by family, friends and other loved ones. Several of the Morgellons patients in the movie say that Morgellons has ruined their health and ruined the relationships they’ve had with many loved ones. The suicide rate for Morgellons patients is extremely high, says Savely.
Nurse practitioners Savely and Melissa McElroy Felser, who are advocates for Morgellons patients, stress the importance of having compassion for those who are suffering. Whether or not Morgellons is a real disease, the suffering is real. And, as “Skin Deep” concludes, that suffering in and of itself is cause for alarm and for the medical community and other concerned people to do their part to address this problem.
Gravitas Ventures released “Skin Deep: The Battle Over Morgellons” on digital, VOD and DVD on March 31, 2020.