Illustrated by: Kelsey Dake
A scientist went looking for genes that cause cannabinoid hyperemesis syndrome. But a public spat with a cannabis influencer who suffers from the disease may have derailed his research.
Alice Moon couldn’t stop throwing up.
She had made a name for herself as an online cannabis influencer, but after a weed-infused dinner in a Malibu home in 2018, she spent more than two weeks constantly puking—unable to keep down food or water, going back and forth to urgent care for IVs, and at one point growing so weak she passed out in her yard. She was finally ready to accept it was the marijuana that had made her sick.
It was an unexpected turn of events. Moon, now 33, was a fixture at the marijuana mansion parties and lavish networking events that characterized the frenzied period after California’s November 2016 ballot initiative legalizing weed. Dressed in a polychromatic raver style, she had gone from working at medical marijuana dispensaries, where she leaned across the counter in neon eye makeup to explain which gummies hit the hardest, to writing reviews of weed-infused snacks and drinks, and selling flower crowns on Etsy that concealed a pipe so you could sneak pot into Coachella.
“She was trying very hard to be a cannabis influencer,” a former coworker at a weed company says. “Cute blond girl eating edibles: that was the premise.” By 2016, Moon had amassed over 14,000 followers on Instagram.
Then she started vomiting. She puked every few months at first, and then every time she got on an airplane, and then every day. Her mom got her an appointment in early 2018 with a gastrointestinal specialist who suggested, to Moon’s horror, that her digestive issues might be caused by all the cannabis she was consuming—a rare disorder called cannabinoid hyperemesis syndrome, or CHS.
“I had heard about CHS before but didn’t think it was real,” Moon recalls. It didn’t make sense, she thought, since one of pot’s best-known therapeutic uses is alleviating the stomach trouble brought on by chemotherapy: “We know weed helps with nausea, so why would it also cause nausea and vomiting?”
At the time of her diagnosis, only a few hundred CHS patients had been identified in the medical literature, and very little was known about the condition. Doctors told patients they had it after a process of elimination. There was no definitive biomarker indicating someone had CHS; only a set of symptoms. Those who did suffer from it were heavy cannabis users who became prone to multiweek vomiting spells that often landed them in the hospital. Patients also frequently reported a compulsive need to take hot showers and baths, which somehow relieved the urge to throw up. When Moon first heard about CHS, the condition sounded absurd. To her, it reeked of moral panic, like the Tide Pod challenge: a fabricated concern intended to scare.
Alice Moon had amassed a large social media following as a cannabis influencer. Then she started getting sick. COURTESY OF ALICE MOON
That skepticism was the default view in pothead circles. After decades of seeing the federal government vilify marijuana and ignore evidence of the drug’s medical potential, many stoners trust their own observations over institutional science and are reflexively resistant to the idea that weed could cause any harm. When it comes to cannabis science, it can be hard to know who to trust. Everyone seems to have an agenda, or a product to sell. Despite its widespread use, there is little peer-reviewed clinical research involving weed. The studies the American government does help fund and approve are much more likely to support the argument that pot is bad for you, distorting the available evidence and fomenting doubt, confusion, and conspiracy theories.
As a result, much of what most people know about marijuana and its effects on the body and brain, positive or negative, amounts to little more than folklore. Indeed, scientific investigations into cannabis often reference types of historical documents seldom mentioned in other fields. One 2007 paper published in the journal Chemistry and Biodiversity cites an ancient Egyptian papyrus advocating cannabis and honey “to cool the uterus and eliminate its heat” during childbirth; Assyrian clay tablets suggesting weed “for or against panic”; and certain translations of Exodus 30:23, in which cannabis may have been included in a recipe given to Moses by God for a holy anointing oil.
That paper’s author is Ethan Russo, a neurologist and psychopharmacologist. “Ethan has more experience researching cannabinoids than almost anybody else. He’s been doing it for decades,” says Peter Grinspoon, a physician at Massachusetts General Hospital and an instructor at Harvard Medical School. Grinspoon describes Russo as “a leader” in the field, with “broad knowledge of both disease and cannabis.”
A balding and bespectacled 70-year-old, Russo first became interested in marijuana back in the 1990s, when he noticed the relief that many of his patients got from the drug. He began trying to organize a clinical trial around pot and migraines, but like many of the well-meaning folks who have tried to study the therapeutic effects of cannabis in human beings, he couldn’t get government approval in the United States. This brought Russo to the UK-based GW Pharmaceuticals, where it was easier to do legal research, and to a position of authority that would ultimately put him on a collision course with Moon.
Moon and Russo have never met in person, but they have spent the past few years embroiled in a bitter online battle over Russo’s attempt to research CHS.
The influencer and the scientist have little in common—Moon never graduated from high school, and Russo doesn’t quite understand how to use Instagram—but still, I was surprised to see their conflict spin out with such vehemence. There have been accusations of scamming and sabotage, social media trash-talking, and an incident in which hundreds of people backed out of a scientific study. It is not an exaggeration to say their inability to get along may have forever warped the public conversation around CHS, just as the disorder is becoming increasingly common in emergency rooms across the globe.
As a journalist covering the insular marijuana industry, I’ve known both Moon and Russo for several years. Both have kept me updated on their respective sides of the squabble. This intensely personal dispute feels like a heightened microcosm of our current moment, when established hierarchies are being upended and no one knows what to believe. As far as modern medicine has come, there are still so many things we do not know and cannot fix. Most diseases and injuries come not with a silver-bullet cure but a panoply of interventions and options: opportunities to weigh costs against benefits, side effects against incremental improvements, lifestyle changes against denial. The system of how we care for each other and what we understand about the body is already so twisted by the demands of the market, by assumptions and traditions and wealth and race and power. Finding the right path to health and safety can seem utterly overwhelming, if not downright impossible.
Cannabis science has long been contentious. In 1937, the American Medical Association opposed a congressional crackdown on weed, asserting: “Since the medicinal use of cannabis has not caused and is not causing addiction, the prevention of the use of the drug for medicinal purposes can accomplish no good end whatsoever.” The feds succumbed to the myth of Reefer Madness anyway, and essentially made pot illegal. In 1970 marijuana was classified as a Schedule I drug, meaning it has zero medical applications, even though government researchers at the University of Mississippi were at that very time in touch with scientists in Brazil who found that cannabis looked promising for stopping seizures, and with researchers at UCLA who saw indications it could relieve glaucoma.
Now, just as marijuana laws are changing and groundbreaking research into the plant is beginning to attract funding and legitimacy, our collective faith in truth and science is falling apart. Social media teems with hoaxes, vaccine disinformation, and QAnon truthers who believe that Joe Biden was fraudulently inaugurated on a Hollywood soundstage. Advice about health has become particularly vulnerable to exaggeration, on both sides of the political aisle. Celebrities from Gwyneth Paltrow to Alex Jones peddle dubious tonics said to combat toxins, capitalizing on our insecurities and fears.
When we are not feeling well, tensions between the holistic and the pharmaceutical can feel like an irrelevant fight between people trying to sell you things: a patient in distress might dabble in anything that promises to work. When you follow those online prompts to “do your own research,” it’s easy to fall into a cesspool of anecdotal recommendations. Influencers push ivermectin, psychedelics, adaptogens, essential oils.
Then again, it’s true that which compounds have been rigorously tested and are now commonplace medications is in many cases an accident of history. An absence of proof may only mean that we haven’t been looking, or that it’s been too difficult or expensive to do proper research.
Because while detailed, peer-reviewed science on, say, the efficacy of Moderna’s covid-19 vaccine is easily accessible, reliable information about marijuana remains very hard to find. Pot is the most commonly used illicit drug in the world, but the plant’s therapeutic uses haven’t been widely studied in human subjects. University scientists lament that the wide variety of cannabis available at state-licensed dispensaries dwarfs the few strains of schwag legally available for them to use in studies. Even in Canada, where the drug is completely legal, weed businesses are far more interested in marketing than in science, in part because cannabis formulations are so easily replicable that any findings would likely end up also helping a company’s competitors.
Published: July 20, 2022
Founder & Interim Editor of L.A. Cannabis News