An Odder Science

Laboratory specimens for Morgellons Research. Photo by Nicole Lupardus

Laboratory specimens with a view to Morgellons Research. Photo by Nicole Lupardus

This thing was originally published on This Land Press.

I pulled up backward Dr. Randy Wymore’s pickup seemly as he pulled up in forward part of Sidney Presley’s house.

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

“Oh, that’s okay,” Wymore moiety-laughed. “Do you think I take notice like a scientist?” In narrow-fit denim jeans, a sleeve-rolled align shirt, and pierced ears, the shaggy-headed doctor wasn’t advertising his employment. “I’ve been growing my hair away for a while,” he declared as we walked up the cobbled route. “I’m going as Woody Harrelson’s disposition from The Hunger Games this weekend.”

Tall, twisting, rayless trees lined both sides of the walkway, their foliage the color of the ripe jack-o-lanterns dotting the district. The front door of the tolerant, two-story home opened just up the trail from us.

“Come forward in, Randy,” said the woman at the avenue. “Sid will be so cheerful to see you!”

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

“Oh Randy, I haven’t seen you considering Tom’s funeral,” Presley reported, before embracing him with the fervency of an old friend. We sat downward at her table, as the ~ting cast a soft, natural glow through the windows of her kitchen. Ceramic strawberries lined every corner of the dining room, and Presley wore a paragon sweatshirt and glasses that matched her uncommon decoration. Her face was only negligently wrinkled, and I caught myself larceny glances at what I thought force be her scars.

“It fortune me on May 13, 1985,” Sidney declared, “but the lesions didn’t wince right away and were only without ceasing my face.”

Sidney spoke of the indistinct, white fibers she, and her stepdaughter, pulled extinguished of her facial lesions. She spoke of life events missed as she couldn’t stand the propriety her appearance brought her. She’d left doctors’ offices, other thing of them than she could remember, in tears.

“There was barely one doctor that didn’t mistreat me,” she said, “and that was righteous because I was bringing him Randy’s papers to versed in books.”

Dr. Randy Wymore was gift not just at Sidney’s importunity, but because he is an coadjutor professor of pharmacology at the OSU Center as being Health Sciences in Tulsa. He is furthermore one of a handful of scientists in the cosmos who believes in Sidney’s wretchedness.

The controversial disease Presley claims to have suffered from since the ‘80s is Morgellons. Most mainstream medicinal journals dismiss it as a completely psychological disease, but thousands believe they be the subject of it. It is characterized by claims of nonhealing lesions, rap-like neurological symptoms, and, most famously, the creation of alien fibers in unbroken hide. It was only given a title 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 inquiry amounted to an answered prayer. For Wymore, and a petty global clique of researchers, the elucidation lies in tiny bugs resembling the seeds put ~ Sidney’s ceramic strawberries.

• • •

“Did I ~more imagine I’d become the spokesperson in favor of an entire disease? No,” Wymore before-mentioned. In 2005, Wymore was researching muscle mass when he stumbled upon what would turn to his life’s work.

Googling as being muscle fiber information, Wymore came concerning a link detailing a “fiber ailment.” He read the Morgellons literary production for about 10 minutes, thought, “This is crazy,” and closed the paragraph before heading home.

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

The following Monday, mind that it would be easy to show the disorder was indeed delusional, Wymore contacted divers Morgellons websites and asked for samples to have ~ing sent to the university. Wymore expected them to exhibit two excuses common with delusional terms: only people with the condition themselves could remark the specimens, or they’d have ~ing happy to send them, but knew they’d condign disappear in the mail. Within two days, though, the Fed-Ex packages started arriving.

Placing the samples less than microscopic scrutiny, he was surprised to know how much they differed from the environmental contaminants he typically analyzed in his lab. The diversity didn’t exactly prove anything, on the contrary it whet his interest. Wymore appoint about contacting sufferers nationwide.

• • •

“Sidney is probably one of the few people after my decision to really dig into this,” Wymore declared. Throughout the ‘90s, Sidney maintained one 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 name “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 governing philanthropic body in the Morgellons legitimization stretch. Recently they donated $15,000 to OSU-CHS toward Morgellons research, and Cindy was the at the outset sufferer Wymore ever met in someone.

Having reached out to Cindy by way of email, Wymore met with her and her ~ly husband, Charles, for dinner in San Francisco in 2005. Wymore is not a medical man, and is therefore unable to study patients, but said just meeting by Cindy and Charles in person went a to a great extent way toward convincing him that she had a physiological ailment, and not a delusion.

“Crazy is a illness, and there’s a biological composing to it,” Wymore said. “But, no. No, this was something completely manifold.”

After enlisting the help of current form a ~ of the department of pediatrics at OSU-CHS, Rhonda Casey, Wymore approached the universal school board to create the OSU-CHS’s Center in quest of the Investigation of Morgellons Disease.

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

• • •

In the in the first stages days of the Center for the Investigation of Morgellons, Wymore’s phone rang non-shut in. Patients, elated to have a according to principles ear turned toward them, soaked up Wymore’s days with their stories. The first official Morgellons ~ with-up, More Jamm, was held in Tahlequah, Oklahoma, in Wymore’s womanly ~. Conference-goers wore hats baring the christen “Way more Wymore!” Sufferers began showing up to OSU-CHS to attend to Wymore and Rhonda Casey, and one of them provided a specimen that would be proper for key to the national media whisper around Morgellons.

Reporters from ABC’s Nightline, CNN, and Psychology Today interviewed Wymore and Casey. Media hype focused without ceasing a fiber Casey pulled from a quiet who claimed to have Morgellons. The example was sent to the Tulsa Police Department’s Forensic Laboratory Division and compared to a database of 800 fibers. With ~t one match found, forensic scientist Ron Pogue entice the fiber against the 100,000 fibers in the FBI’s database. Again, not a upright match was returned, prompting Pogue to tell Nightline that Wymore and Casey were business with “some strange stuff.”

Armed by a new name for their indisposition and substantial media coverage, people claiming to be longtime Morgellons sufferers pressured the Center by reason of Disease Control to investigate. A molecular group of new faces entered the Morgellons spectacle as well, including Marianne Middelveen and Dr. Raphael Stricker. Their papers comparing Morgellons filaments to bovine digital dermatitis, a extended established concern for cattle farmers, by stipulation a new perspective in the confabulation. With the growing coverage and invalid base, Morgellons was thrust into the spotlight of philosophical study, and Wymore found himself at the frontlines of its polemics.

“The only way to delineate it was ‘hate mail,’” Wymore reported, recalling the early emails from debunkers and dermatologists. Thankful patients and inquisitive journalists had divided his time, on the contrary a community Wymore calls “the militantly skeptic” rest a new target in the Morgellons report.

“Why are you doing this?” Wymore before-mentioned, recounting the emails. “’You’re feeding into their delusions’ and ‘You’re conscientious as sick as they are,’ and likewise forth.” Wymore said the skeptics’ bring to the same ~ of emotion was so high that it shocked him. He was habituated to hearing opposing views professionally presented at conferences, in which place those present would go have a beer in the same time afterward. “But, wow,” he exclaimed, “these were real angry people!”

Just a year afterward publishing the initial joint statement, Wymore published any other statement to the OSU site. Miles from the unruffled plea of the year before, the cadence turned adversarial and challenged the skeptics soon. Wymore wrote:

If an amateur debunker… feels that they be possible to compete in the professional scientific scene of conflict, let them submit an abstract to a meeting for consultation or a manuscript to a philosophical journal (a legitimate, peer-reviewed scientific journal). The results would be funny; probably not to the debunker, but the reality of the world is that not a part of the mainstream journals that are fellow-reviewed would publish such a written.

Wymore explained the shift in vigor as a logical response to fair-minded how toxic the conversation had be suitable to.

• • •

Cindy Casey-Holman was mirthful with me over the phone then she confirmed that her foundation was at the outset called The New Morgellons Order.

“Charles was morbid of being dismissed and wanted a impetuous, militant name for the Morgellons common,” she told me through a crow. When he passed away, Cindy unwavering to honor him by renaming the base after him. She also took the suitable to put space between her base and “the craziness,” in the same manner with she calls it.

“The resistance is so strong you can know why people become conspiratorial,” Cindy declared. Years of medical dismissal have driven a great chunk of the conversation to the unreal hypotheses of conspiracy forums. Googling “Morgellons” instantly brings any to sites blaming pollution, aliens, or not only so Bill Gates for the mysterious fibers.

Though Cindy understands wherefore the desperate population turns to of that kind theories, she says she has no patience for them. Cindy’s bottom runs an annual conference that is entire to the Morgellons community. When asked grant that any skeptics have ever tried to sap the conference, she said their barely infiltration was by chem-trail theorists—those who confident the streaks in the sky we view following jets are unknown chemicals sprayed because of nefarious reasons. Some members of the chem-trail community believe Morgellons is a byproduct of this mysterious government program. Cindy denied them a fall out to speak, fearing her conference would have ~ing associated with “fringe” theories. Later, it was discovered a assemblage of chem-trailers were inviting discourse-goers to their hotel room during the term of their own presentation. “We be in actual possession of a hard enough time being taken in earnest as it is,” Cindy sighed.

In 2007—following several years of increasing pressure from patients, media, and politicians—the Center conducive to Disease Control announced it would follow up Morgellons. A wave of hope surged through the Morgellons community with the perspective of having their suffering truly acknowledged.

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

• • •

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

“Oh, I illiberal, a couple people wanted to rumor,” Wymore laughingly said of his council at OSU. The CDC/Kaiser Permanente study called the wholeness. of Wymore’s research into motion. He sat on the CDC paper’s pry-review board, and said he and his peer scientists at OSU easily recognized which they saw as flawed methodology in the CDC’s design.

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

A hundred thousand signed up toward the CDC’s research, but without more 115 case patients made it through the questioning and inquisition. Wymore said he isn’t sure if any of the 115 had the sort of he would consider Morgellons. Middelveen agreed by his assessment, asserting that her team has but ever done research on patients with filaments embedded in, or protruding from, continuous skin. She claimed the CDC study gladly took everyone who merely said they had fibers or insects crawling finished of their bodies.

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

Although the news~ was a blow to sufferers and the easy opinion of the disease, Wymore and Middelveen said it didn’t affect their efforts in somewhat way. “I don’t squabble their data,” Wymore said, “condign their design and population.”

Although he is carping of the CDC paper’s design, Wymore is expeditious to dismiss any talk of a body politic 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-struggle,” Wymore said. “Those things would consider actually jumped out at us!” Unlike the lineal spread of diseases like West Nile, the distribute of Morgellons appears random. Wymore explained that the million claiming to suffer from Morgellons are evenly not heedless in every class, race, continent (except Antarctica), and, most importantly, every meteorological character. Wymore and Middelveen’s teams be favored with pursued a common culprit in completely these demographics: the small parasitic arachnids that we style ticks, and the bacteria they send forward through bites.

• • •

 “I’ve exhausted the last nine months, several many dollars’ worth of reagents, and nine months of my undergrad researcher’s life betting in successi~ that,” Wymore said, referring to the fraternity between Morgellons and Lyme disease.

Lyme sickness and Morgellons have been tied in concert in one way or another after Morgellons first received its name from Mary Leitao. A indicative number of people claiming to acquire Morgellons also have Lyme. Middelveen, who has Lyme unless not Morgellons, first became aware of the distemper while seeking treatment from Dr. Stricker because her Lyme symptoms. Middelveen began acting with Stricker to find a step between the diseases. In February 2015, the two researches, along with an international team of co-authors, published a written instrument in BMC Dermatology demonstrating that guild by identifying the tick-borne bacteria Borrelia burgdorferi in patients believed to be put to inconvenience from both Lyme and Morgellons malady. According to Middelveen, this association confirms the natural reality of Morgellons disease.

• • •

In a com~ release from The Charles E. Holman Foundation, Middelveen fixed, “With this detailed scientific study we be the subject of shown the somatic nature of the ailment and put the final nail in the burial chest of delusional infestation.” In a phone invitation with Middelveen I asked, if this was indeed the sheathe, why hadn’t their findings been published in every medical blog, magazine, and morning interpret on the planet?

Middelveen claimed the heretical nature of Morgellons, the hysterical converse surrounding it, and the CDC record have made the press weary of latching onto news involving the disease. “New Scientist magazine used to cover it,” She told me. “You’d muse they would have picked this up… ~-end no, they think it’s before that time solved because they think the CDC did some adequate job of it.” She theorized her team’s work may follow the same slow way to acceptance of Barry Marshall and Robin Warren. Initially dismissed instead of their stomach ulcer research in the 1980s, the pair shared the 2005 Nobel Prize in Physiology or Medicine in the place of their discovery of the bacterium Helicobacter pylori and the role it plays in dietetic ulcer disease.

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

Wymore explained the weightiness of continuing research in the impudence of the fanatic nature of the Morgellons contest. “Is there anything that efficiency sway the diehard believers in delusional infestation? Possibly,” he said. Wymore believes the tipping point determination be when several papers show the “starch mechanism” whereby the bacteria cause the arrangement of fibers. “Not an conjunction, but the specific molecular or sub-favose mechanism” is the ultimate goal of his careful search. Middelveen agreed with Dr. Wymore in this regard, moreover joked, “I’ll leave that towards Dr. Wymore! There’s only likewise much I can do.”

The goal of identifying and publishing these links betwixt the tick-borne bacteria is to form a case for more involved exploration in the physician-to-patient domain. “If you’re a researcher at a universal school and you want to work up~ humans, you’re going to be obliged to get it through a enter,” Wymore told me, “and the dare to undertake-reward ratio has to be looked at.” Biopsies, spinal taps, and consanguinity analyses are all unexplored methods in the earth of Morgellons research. According to Wymore, a few more published papers regarding a presumable cause of Morgellons could easily tip the scales towards actual human careful search being possible. That human research could someday take the ~ of to a cure. Until then, researchers like Wymore elect continue to investigate the disease that was one time deemed a myth.

“I’ll reasonable be here with my microscope,” Wymore uttered with a smile.

Originally published in This Land: Spring 2015.

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