An Odder Science

by Mitch Gilliam

04/17/2015

I pulled up behind Dr. Randy Wymore’s pickup right as he pulled up in front of Sidney Presley’s house.

“Sorry I don’t look like a journalist,” I apologized, explaining I’d smeared bike grease on the button-up I’d laid out for the evening.

“Oh, that’s okay,” Wymore half-laughed. “Do you think I look like a scientist?” In slim-fit denim jeans, a sleeve-rolled dress shirt, and pierced ears, the shaggy-headed doctor wasn’t advertising his occupation. “I’ve been growing my hair out for a while,” he said as we walked up the cobbled path. “I’m going as Woody Harrelson’s character from The Hunger Games this weekend.”

Tall, twisting, dark trees lined both sides of the walkway, their leaves the color of the ripe jack-o-lanterns dotting the neighborhood. The front door of the broad, two-story home opened just up the trail from us.

“Come on in, Randy,” said the woman at the door. “Sid will be so glad to see you!”

Cheri Ward, Sidney Presley’s stepdaughter, greeted us after hugging Dr. Wymore and led us into the dining room where the 78-year-old Presley was waiting.

“Oh Randy, I haven’t seen you since Tom’s funeral,” Presley said, before embracing him with the warmth of an old friend. We sat down at her table, as the sunset cast a soft, natural glow through the windows of her kitchen. Ceramic strawberries lined every corner of the dining room, and Presley wore a pink sweatshirt and glasses that matched her choice decoration. Her face was only slightly wrinkled, and I caught myself stealing glances at what I thought might be her scars.

“It hit me on May 13, 1985,” Sidney said, “but the lesions didn’t start right away and were only on my face.”

Sidney spoke of the thick, white fibers she, and her stepdaughter, pulled out of her facial lesions. She spoke of life events missed because she couldn’t stand the shame her appearance brought her. She’d left doctors’ offices, more of them than she could remember, in tears.

“There was only one doctor that didn’t mistreat me,” she said, “and that was just because I was bringing him Randy’s papers to read.”

Dr. Randy Wymore was present not just at Sidney’s insistence, but because he is an associate professor of pharmacology at the OSU Center for Health Sciences in Tulsa. He is also one of a handful of scientists in the world who believes in Sidney’s affliction.

The controversial disease Presley claims to have suffered from since the ‘80s is Morgellons. Most mainstream medical journals dismiss it as a purely psychological disease, but thousands believe they have it. It is characterized by claims of nonhealing lesions, stroke-like neurological symptoms, and, most famously, the formation of alien fibers in unbroken skin. It was only given a name in 2002, and in 2006 Dr. Wymore was the first—and only—researcher to establish a university center devoted to its study. For Sidney, Wymore’s research amounted to an answered prayer. For Wymore, and a small global clique of researchers, the key lies in tiny bugs resembling the seeds on Sidney’s ceramic strawberries.

“Did I ever imagine I’d become the spokesperson for an entire disease? No,” Wymore said. In 2005, Wymore was researching muscle tissue when he stumbled upon what would become his life’s work.

Googling for muscle fiber information, Wymore came upon a link detailing a “fiber disease.” He read the Morgellons piece for about 10 minutes, thought, “This is crazy,” and closed the article before heading home.

“That was a Friday,” he said, “and the whole weekend it just kept popping into my head.”

The following Monday, thinking that it would be easy to prove the disorder was indeed delusional, Wymore contacted several Morgellons websites and asked for samples to be sent to the university. Wymore expected them to offer two excuses common with delusional conditions: only people with the condition themselves could see the specimens, or they’d be happy to send them, but knew they’d just disappear in the mail. Within two days, though, the Fed-Ex packages started arriving.

Placing the samples under microscopic scrutiny, he was surprised to see how much they differed from the environmental contaminants he typically analyzed in his lab. The dissimilarity didn’t exactly prove anything, but it whet his interest. Wymore set about contacting sufferers nationwide.

“Sidney is probably one of the few people behind my decision to really dig into this,” Wymore said. Throughout the ‘90s, Sidney maintained an online forum for desperate sufferers. Wymore had reached out to her and other influential players via email. One of those early figures was Mary Leitao, who coined the term “Morgellons” and founded Morgellons.org. Another was the current executive director of The Charles E. Holman Foundation, Cindy Casey-Holman. The Charles E. Holman Foundation is the leading philanthropic body in the Morgellons legitimization effort. Recently they donated $15,000 to OSU-CHS for Morgellons research, and Cindy was the first sufferer Wymore ever met in person.

Having reached out to Cindy via email, Wymore met with her and her late husband, Charles, for dinner in San Francisco in 2005. Wymore is not a physician, and is therefore unable to examine patients, but said just meeting with Cindy and Charles in person went a long way toward convincing him that she had a physiological disease, and not a delusion.

“Crazy is a sickness, and there’s a biological component to it,” Wymore said. “But, no. No, this was something completely different.”

After enlisting the help of current head of the department of pediatrics at OSU-CHS, Rhonda Casey, Wymore approached the university board to create the OSU-CHS’s Center for the Investigation of Morgellons Disease.

Wymore and Rhonda Casey published a joint statement in 2006 on behalf of the OSU-CHS. In it, they outlined the symptoms of Morgellons sufferers and how those symptoms differ from delusional parasitosis. The statement addressed the dismissal the patient population had received from the medical community and recommended a compassionate approach from clinicians. A community fighting the label “delusional” was finally vindicated. They couldn’t have known that, soon, a government report would set their hopes back by years.

In the initial days of the Center for the Investigation of Morgellons, Wymore’s phone rang non-stop. Patients, elated to have a scientific ear turned toward them, soaked up Wymore’s days with their stories. The first official Morgellons meet-up, More Jamm, was held in Tahlequah, Oklahoma, in Wymore’s honor. Conference-goers wore hats baring the phrase “Way more Wymore!” Sufferers began showing up to OSU-CHS to see Wymore and Rhonda Casey, and one of them provided a specimen that would become key to the national media buzz around Morgellons.

Reporters from ABC’s Nightline, CNN, and Psychology Today interviewed Wymore and Casey. Media hype focused on a fiber Casey pulled from a patient who claimed to have Morgellons. The sample was sent to the Tulsa Police Department’s Forensic Laboratory Division and compared to a database of 800 fibers. With no match found, forensic scientist Ron Pogue put the fiber against the 100,000 fibers in the FBI’s database. Again, not a single match was returned, prompting Pogue to tell Nightline that Wymore and Casey were dealing with “some strange stuff.”

Armed with a new name for their disease and substantial media coverage, people claiming to be longtime Morgellons sufferers pressured the Center for Disease Control to investigate. A small group of new faces entered the Morgellons scene as well, including Marianne Middelveen and Dr. Raphael Stricker. Their papers comparing Morgellons filaments to bovine digital dermatitis, a long established concern for cattle farmers, provided a new perspective in the conversation. With the growing coverage and patient base, Morgellons was thrust into the spotlight of scientific study, and Wymore found himself at the frontlines of its controversy.

“ The only way to describe it was ‘hate mail,’ ” Wymore said, recalling the early emails from debunkers and dermatologists. Thankful patients and curious journalists had divided his time, but a community Wymore calls “the militantly skeptic” found a new target in the Morgellons talk.

Why are you doing this?” Wymore said, recounting the emails. “You’re feeding into their delusions and You’re just as sick as they are, and so forth.” Wymore said the skeptics’ level of emotion was so high that it shocked him. He was accustomed to hearing opposing views professionally presented at conferences, where those present would go have a beer together afterward. “But, wow,” he exclaimed, “these were very angry people!”

Just a year after publishing the initial joint statement, Wymore published another statement to the OSU site. Miles from the calm plea of the year before, the tone turned adversarial and challenged the skeptics directly. Wymore wrote:

If an amateur debunker… feels that they can compete in the professional scientific arena, let them submit an abstract to a conference or a manuscript to a scientific journal (a legitimate, peer-reviewed scientific journal). The results would be laughable; probably not to the debunker, but the reality of the world is that none of the mainstream journals that are peer-reviewed would publish such a manuscript.

Wymore explained the shift in tone as a logical response to just how toxic the conversation had become.

Cindy Casey-Holman was laughing with me over the phone when she confirmed that her foundation was first called The New Morgellons Order.

“Charles was sick of being dismissed and wanted a strong, militant name for the Morgellons community,” she told me through a chuckle. When he passed away, Cindy decided to honor him by renaming the foundation after him. She also took the opportunity to put space between her foundation and “the craziness,” as she calls it.

“The opposition is so strong you can see why people become conspiratorial,” Cindy said. Years of medical dismissal have driven a large chunk of the conversation to the shadowy hypotheses of conspiracy forums. Googling “Morgellons” instantly brings one to sites blaming pollution, aliens, or even Bill Gates for the mysterious fibers.

Though Cindy understands why the desperate population turns to such theories, she says she has no patience for them. Cindy’s foundation runs an annual conference that is integral to the Morgellons community. When asked if any skeptics have ever tried to undermine the conference, she said their only infiltration was by chem-trail theorists—those who believe the streaks in the sky we see following jets are unknown chemicals sprayed for nefarious reasons. Some members of the chem-trail community believe Morgellons is a byproduct of this secret government program. Cindy denied them a chance to speak, fearing her conference would be associated with “fringe” theories. Later, it was discovered a group of chem-trailers were inviting conference-goers to their hotel room for their own presentation. “We have a hard enough time being taken seriously as it is,” Cindy sighed.

In 2007—after several years of increasing pressure from patients, media, and politicians—the Center for Disease Control announced it would investigate Morgellons. A wave of hope surged through the Morgellons community with the prospect of having their suffering truly acknowledged.

That wave peaked and broke back in 2012 when the CDC published their findings: Morgellons is a psychological condition and has no physical manifestations. The patient population was crushed; the skeptics were overjoyed.

“ ‘Heartbroken’ is the only word that could describe it,” said Marianne Middelveen, regarding the community’s reaction to the CDC report. She had joined the Morgellons movement after the initial surge in media coverage, only to see her and her colleagues’ efforts swept into doubt in a just few years.

“Oh, I mean, a couple people wanted to talk,” Wymore laughingly said of his board at OSU. The CDC/Kaiser Permanente study called the entirety of Wymore’s research into question. He sat on the CDC paper’s peer-review board, and said he and his fellow scientists at OSU easily recognized what they saw as flawed methodology in the CDC’s design.

Participants in the study, he explained, were put through a several-hours-long survey with most questions evoking an iteration of the word “delusional.” Wymore said the patients he knew personally who endured the belittling survey eventually dropped out when they discovered they’d have to strip and be photographed. For those accustomed to being dismissed as delusional, the design appeared to be a bait-and-switch, he said.

A hundred thousand signed up for the CDC’s research, but only 115 case patients made it through the questioning and examination. Wymore said he isn’t sure if any of the 115 had what he would consider Morgellons. Middelveen agreed with his assessment, asserting that her team has only ever done research on patients with filaments embedded in, or protruding from, unbroken skin. She claimed the CDC study gladly took everyone who simply said they had fibers or insects crawling out of their bodies.

Wymore said his board at OSU-CHS was unfaltering in its support of his Morgellons research in the wake of the CDC report. Interim Vice President Dr. Johnny Stephens echoed this in an email to me, saying, “While the results of one study might provide insights for scientists, it usually requires many studies over many years to provide solid scientific conclusions.”

Although the paper was a blow to sufferers and the popular opinion of the disease, Wymore and Middelveen said it didn’t affect their efforts in any way. “I don’t dispute their data,” Wymore said, “just their design and population.”

Although he is critical of the CDC paper’s design, Wymore is quick to dismiss any talk of a government cover-up. “Is this a big CDC conspiracy? No,” he told me.

“It’s not chem-trails, not nano-technology gone crazy, it’s not bio-warfare,” Wymore said. “Those things would have actually jumped out at us!” Unlike the linear spread of diseases like West Nile, the spread of Morgellons appears random. Wymore explained that people claiming to suffer from Morgellons are evenly present in every class, race, continent (except Antarctica), and, most importantly, every climate. Wymore and Middelveen’s teams have pursued a common culprit in all these demographics: the small parasitic arachnids that we call ticks, and the bacteria they transmit through bites.

 “I’ve spent the last nine months, several thousand dollars’ worth of reagents, and nine months of my undergrad researcher’s life betting on that,” Wymore said, referring to the association between Morgellons and Lyme disease.

Lyme disease and Morgellons have been tied together in one way or another since Morgellons first received its name from Mary Leitao. A significant number of people claiming to have Morgellons also have Lyme. Middelveen, who has Lyme but not Morgellons, first became aware of the disease while seeking treatment from Dr. Stricker for her Lyme symptoms. Middelveen began working with Stricker to find a link between the diseases. In February 2015, the two researches, along with an international team of co-authors, published a paper in BMC Dermatology demonstrating that association by identifying the tick-borne bacteria Borrelia burgdorferi in patients believed to suffer from both Lyme and Morgellons disease. According to Middelveen, this association confirms the physical reality of Morgellons disease.

In a press release from The Charles E. Holman Foundation, Middelveen stated, “With this detailed scientific study we have shown the somatic nature of the disease and put the final nail in the coffin of delusional infestation.” In a phone call with Middelveen I asked, if this was indeed the case, why hadn’t their findings been published in every medical blog, magazine, and morning show on the planet?

Middelveen claimed the unorthodox nature of Morgellons, the hysterical conversation surrounding it, and the CDC report have made the press weary of latching onto news involving the disease. “New Scientist magazine used to cover it,” She told me. “You’d think they would have picked this up… but no, they think it’s already solved because they think the CDC did an adequate job of it.” She theorized her team’s work may follow the same slow path to acceptance of Barry Marshall and Robin Warren. Initially dismissed for their stomach ulcer research in the 1980s, the two shared the 2005 Nobel Prize in Physiology or Medicine for their discovery of the bacterium Helicobacter pylori and the role it plays in peptic ulcer disease.

I asked Wymore if Middleveen’s team had discovered what his own center was after, and how it affected his research. “It has no impact on our research,” he told me. “That is not meant in any way to minimize the paper or their research. It simply means that we are not altering what we do based on what anyone else does.”

Wymore explained the importance of continuing research in the face of the fanatic nature of the Morgellons debate. “Is there anything that might sway the diehard believers in delusional infestation? Possibly,” he said. Wymore believes the tipping point will be when several papers show the “precise mechanism” whereby the bacteria cause the formation of fibers. “Not an association, but the specific molecular or sub-cellular mechanism” is the ultimate goal of his research. Middelveen agreed with Dr. Wymore in this regard, but joked, “I’ll leave that for Dr. Wymore! There’s only so much I can do.”

The goal of identifying and publishing these links between the tick-borne bacteria is to build a case for more involved research in the physician-to-patient field. “If you’re a researcher at a university and you want to work on humans, you’re going to have to get it through a board,” Wymore told me, “and the risk-reward ratio has to be looked at.” Biopsies, spinal taps, and blood analyses are all unexplored methods in the world of Morgellons research. According to Wymore, a few more published papers regarding a probable cause of Morgellons could easily tip the scales towards actual human research being possible. That human research could someday lead to a cure. Until then, researchers like Wymore will continue to investigate the disease that was once deemed a myth.

“I’ll just be here with my microscope,” Wymore said with a smile.

 


 

Originally published in This Land: Spring 2015.