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.
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.
So at the same moment when there is great concern and indignation that Americans are trusting jewel-toned Instagram slideshows made by wellness gurus over the scientific method, marijuana is weirdly stuck in an even more exaggerated information vacuum, where the experts indicated by SCIENCE IS REAL signs know relatively little about the clinical value of a plant that over 90% of the country believes has legitimate medicinal uses.
This means patients looking for facts around medical cannabis or a disease like CHS face a landscape that is “largely terrible” and flooded with sales pitches, according to Hunter Land, the former head of research for Canada’s largest legal cannabis company, Canopy Growth. “We have tons of information that is readily available through a variety of outlets,” he says. “Now the task is, how do you determine which one is accurate, and who do you put your trust in?”
Even though Moon didn’t quite believe what the gastroenterologist had told her about CHS, she was desperate to stop vomiting all the time, and as a test, she decided to quit using pot for three months. But first she wanted to go out in style, at a cannabis-infused five-course “high fête” spring equinox dinner party deep in a Malibu canyon, on an estate overlooking the ocean. I saw her at the end of that night in 2018, struggling to maneuver her enormous new SUV down the winding driveway, at one point plonking it down over a two-foot dirt curb. She called out to see if anyone in my car wanted to accompany her, to guide her down the mountain. No one did.
A month later, she emailed me with an update:
I was diagnosed with cannabinoid hyperemesis syndrome … That dinner was my last night of consumption and I highly regretted it. I spent the night throwing up and then every day afterwards for almost 3 weeks I continued to violently throw up everything I tried to eat or drink … My weight dropped to 105 and it got really scary … No more consuming for me for quite some time but I still love and appreciate the plant. I hope to educate the community on cannabinoid hyperemesis because it is a real thing that we shouldn’t ignore … I feel like I’m the perfect voice to this syndrome because I do not want to create fear in the industry, I just want to educate and let people know about this possibility so no one has to endure the hell I went through! xoxoxo
Moon quickly became a prominent figure in the online CHS patient community, which often meant withstanding disbelief and vitriol from people she used to consider her friends. “When I looked at Alice, where’s case number two to back up that this exists?” one cannabis company CEO said to me. (There are, in fact, hundreds of people diagnosed with CHS.)
Some accused her of working for the government, and of trying to keep weed illegal. After all, cannabis has never been known to kill anyone in an overdose, but the serious medical problems arising from CHS have caused a handful of deaths. This raised suspicions. Decades ago, Ronald Reagan’s drug czar supported spraying illicit marijuana farms with the toxic herbicide paraquat, leading to terror among the High Times set. Now many potheads theorized on blogs and message boards that CHS was an occasional but deliberately overhyped side effect of a pesticide used to grow cannabis—making Moon either a dupe or a shill for anti-pot propaganda.
“Nobody wants there to be a negative aspect to cannabis,” she says. “People said, ‘There is no scientific evidence, so I’m not going to believe it until there is.’”
The haters were demoralizing, but Moon found solace in connecting with her fellow patients on social media: listening to their stories, swapping tips, and considering how she could advocate for better treatment and more research.
She had read on the internet that she should rub capsaicin cream, made from chili peppers, on her stomach; it burned her skin, but the heat alleviated the vomiting. She composed a survey, eventually taken by over 300 CHS patients, to try to channel their collective experiences. Moon was appalled to learn that many CHS patients had been misdiagnosed with gallbladder inflammation, and had their gallbladders removed. She was determined to learn all she could about the condition and help others do the same.
Much of that work took place in a Facebook group called Cannabinoid Hyperemesis Recovery. Here, thousands of patients from all over the world commiserated about what it was like to live with CHS: the dehydration, the weight loss, the weeks in the hospital, the unnecessary surgeries, the kidney problems, the struggle to give up smoking weed, and the relief that only came with hot showers or capsaicin cream.
I was going in and out of consciousness for several days (to the point where I was in the bathtub with the water running, went unconscious and flooded the entire house for several hours before being woken up), one person posted.
Eventually the doctors said I had endometriosis and the only way to be able to function was to have a hysterectomy. I complied and after surgery my doctor informed me there was no sign of endometriosis. I finally tried quitting smoking weed for 60 days and it was like I was 100% cured, wrote another.
im currently having another chs attack cuz I was an idiot and toked, confessed a third.
We are gonna lose our son to this illness, one man wrote. What can we due [sic] to save our son.
The group had been started by a CHS patient named Erica, a 37-year-old artist who had looked online for resources after her diagnosis and, finding nothing, had decided to establish “basically a blog of my full recovery process and all the things I’ve discovered along the way.” (Erica preferred not to use her last name, because of the backlash that comes with publicly discussing CHS.) She pinned posts recommending magnesium supplements and listing lesser-known CHS symptoms, such as seizures and “scromiting”—that is, screaming and vomiting at the same time. Before joining, members must agree to a set of rules, including “No posts of theories or unproven methods … This group is for proven methods and truth only.”
Erica and Moon became fast friends, despite living across the country from each other. As the group grew, accumulating as many as a thousand new members every month, the two women felt they were uncovering crucial information, including which prescription drugs were best for this condition and which trigger foods (cacao, rosemary) might also cause CHS patients to puke. “There’s so many of us that we can actually use ourselves as guinea pigs,” Erica told me. “The articles that have been written by doctors themselves are actually wrong.”
For example, she explained, she’s been told that some doctors recommend that CHS patients try using non-psychoactive CBD products. But when Moon tried taking CBD capsules, about six months after that dinner in Malibu, she ended up in the emergency room, with three ulcers, two hernias, and a bacterial infection. Now she and Erica worked to convince new members to the group that in order to be healthy, they had to quit all cannabis, for good.
“We have saved thousands of lives,” Erica claims.
In September 2019, after she spoke on a panel at a cannabis medical conference, Moon was excited to hear that a researcher named Ethan Russo was interested in studying the condition. From 1998 to 2014 Russo conducted research for GW Pharmaceuticals, the only company with a plant-derived, FDA-approved cannabis drug (Epidiolex, a treatment for childhood epilepsy that is 98% CBD). Russo’s early belief in the promise of medical cannabis, combined with the imprimatur of a white coat, has made him something of a folk hero among pot lovers.
Russo had been following the nascent research into cannabinoid hyperemesis syndrome, including a 2012 study showing that patients like Moon were spending as much as $95,000 in testing and hospitalization costs before receiving a CHS diagnosis. He thought the theories about CHS being caused by pesticides were “bullshit” and was curious about why CHS affected some stoners and not others, hypothesizing that a genetic mutation might be responsible. He figured if he could compare the genomes of a large group of CHS patients with the genomes of a control group of potheads who hadn’t developed CHS, he might be able to offer both patients and doctors some clarity.
“The original idea was, can we develop a diagnostic test for this?” Russo told me. “A $180 genetic test can maybe save people a lot of grief,” he said. And perhaps it could give parents of the many teenage and 20-something CHS patients who refused to believe that weed was making them sick “more ammunition to say, ‘Hey, Johnny, no toking for you.’”
He decided to team up with a genetic testing company called Endocanna Health, which had been using its DNA kits to offer individualized cannabis recommendations based on a person’s genetics. Russo, who doesn’t particularly like using cannabis himself, had taken the company’s DNA test and claimed its assessments of how his body was genetically predisposed to respond to weed were startlingly accurate.
Others are less convinced.
“As far as I know, this is still science fiction,” says Vincenzo Di Marzo, a biochemist who studies cannabinoids, molecular genetics, and the microbiome at the Université Laval in Quebec. “It’s just based on statistics,” he adds, explaining that Endocanna Health’s correlational, big-data approach, which involves associating the presence of certain genes with certain responses to cannabis, “doesn’t tell you anything about the expression and the function of the genes.” That, he says, is crucial in understanding how someone might respond to various cannabinoids.
The cannabis plant can contain permutations of hundreds of compounds, which seem to work differently for different people in different combinations. THC famously gives many people “the munchies,” for example, but another compound, THC-V, seems to take away your appetite. Endocanna’s appeal reflects how eager many consumers are for better information about how to buy weed tailored to their medical condition, or that won’t make them too paranoid or anxious.
Endocanna Health’s CEO, a former physical therapist named Len May, knew Moon from the cannabis event circuit, and as plans came together for a genetic study, he told Russo she could be useful. “Maybe we can get Alice involved and have her send this out to her community and build a cohort from there,” May said. He separately spoke to Moon to get her on board: “She was complaining and crying that nobody takes her seriously, and I said to her, ‘In order for people to take you seriously, let’s add some science to it.’”
Moon gave May permission to use some of the questions from her survey of CHS patients to help him and Russo in their screening process, and in November of 2019, the Western Institutional Review Board approved the study. A few weeks later, Russo e-mailed Moon.
I am not sure that we’ve ever met, he wrote. I understand that you have access to a number of people who carry this diagnosis. We would really like your help in directing patients with this diagnosis or possible diagnosis to the following online survey URL.
Moon replied two days later.
I just took the survey but there are some wording changes that need to happen before I share it—as some questions aren’t clear enough and can result in confused answers, she wrote. Let me know when you can chat!
Russo says he was surprised to see that this influencer wanted to tweak the language in his study, but Moon was confident that she knew more about CHS and how to speak to patients than he did.
By now it had been almost two years since her diagnosis, and she had learned a lot, in part from reading published research papers but mostly through her own experiences and on social media, particularly in the Facebook group.
Around the same time that Russo was developing his genetic study, a hospital pharmacist named Alice Watt reached out to Moon for help developing an informational pamphlet about CHS for the Institute for Safe Medication Practices Canada, to be distributed in emergency rooms across the country. “I learned so much from her,” Watt told me. “She’s kind of an encyclopedia of everything you want to know about CHS, because she’s heard it all. Everyone tells her their story. I think she’s a really good resource.”
Watt was careful to incorporate Moon’s feedback on how to make the pamphlet “digestible” and “at a literacy level that’s, you know, not too hard to read,” so Moon assumed that Russo would be just as receptive. However, Russo replied that it was too late to change the wording of his screening questions, since the study had already been approved by the Institutional Review Board. No survey is perfect, he wrote. I’m afraid that it will need to stay as is.
Moon responded 17 minutes later.
That’s unfortunate. The question ‘are you experiencing nausea’ really stood out to me as it is not a clear question. I am not experiencing nausea, but I did for two years. I answered no because I stopped using cannabis a year ago. That was just one of many questions that was worded so poorly that it could be misinterpreted. By not asking clear questions, your data will be flawed. This carelessness makes me concerned about the efficiency of the work that will be done on this study and I am hesitant to encourage anyone to be involved.
I am curious, she went on, why wasn’t I consulted before this was submitted to the review board?
Former Canopy Growth research director Land told me that Russo, whom he considers a mentor, is a trustworthy source in part because “he was never true Pharma” but “he was never fully holistic, ‘just guess’ about things.” He added: “Ethan, in our field, is one of the most honest, nonbiased sources for information you can get.”
But to Moon, Russo represented the for-profit medical industry. From the moment they first reached out to me, she later wrote, my gut felt off. Still, she worried, maybe my gut was actually just my ego getting in the way, and she reconsidered, emailing Russo again:
after doing some reading on studies and how they are conducted, I now understand where you are coming from … I have shared it with my network … We should have a few hundred submissions by the end of next week.
Within a few weeks over 500 people had taken the survey, and a computer program randomly selected 205 who fit the criteria for genetic testing. In late January 2020, an email went out from Endocanna Health to those 205 CHS patients with details about how to receive and complete the DNA tests.
Moon did not receive this email, but several people forwarded it to her. She realized she had not qualified for genetic testing. Now she was livid. She emailed Russo and May:
Why wasn’t I included to participate in the study? Did I answer something to disqualify me? Why wasn’t I kept in the loop? Why wasn’t my name in the email sent out?
Moon also pointed out that “HIPAA,” the patient privacy protection law, had been written as “HIPPA,” and noticed that the e-mail included Endocanna Health’s standard marketing language about providing people with personalized cannabis recommendations based on their DNA testing.
Why did y’all say in the email that you will help participants find the right cannabis dose for them? she wrote to May and Russo. I am very disappointed that you are giving people false hope … This is super unprofessional … I am losing faith that this test is truly to help cannabinoid hyperemesis syndrome patients. It feels not right and I am disappointed with the lack of respect
May wrote back explaining that the selections were anonymized and random, so they had no way of knowing why she hadn’t been chosen.
“Then things got weird,” Russo told me. He regretted that Endocanna Health had included its standard language about cannabis recommendations in the email: “That was an error. I didn’t know they’d use the regular kits,” he said. “We’re not trying to give cannabis to these people.” But now nothing he or his team said could convince Moon that their work was meant to benefit patients like herself. It didn’t help that May was less apologetic about the language offering to help patients find the right cannabis. “Some people are interested in that as part of the benefit of participating in the study, and would like to learn more about their specific genotypes,” he wrote to Moon. By this point, a publicly traded Canadian cannabis firm had acquired a 30% stake in Endocanna Health.
“There is a business aspect of everything we do,” May told me later, “because we have a company with shareholders, but at the end of the day I would want to know if I have a certain predisposition.”
Moon posted on Facebook recounting what had happened:
I need to make a statement on the Endocannahealth study that I posted for y’all to participate in. I didn’t qualify to participate in the study. ME! The one who has been a face of this for over a year now.
She listed the many aspects of Russo’s research that didn’t sit well with her, including the poorly worded questions and the HIPAA spelling error. Later, she posted, they are sending participants test results that talks about doses of cannabis that people can use. We all know for a fact that continued use = continued symptoms, so I think that the “study” might do more harm than good.
Another CHS patient who did qualify for the genetic testing replied, referring to Russo and Endocanna Health as “scammers” and saying, I’m so glad I didn’t submit my sample so my dna could be floating out ‘somewhere’ with no real CHS testing in mind.
Out of the 205 patients who qualified for the study’s genetic testing, only 99 agreed to receive test kits in the mail. Out of those 99, only 28 people actually returned a completed kit.
“She single-handedly dissuaded a very large number of people from returning their kits,” says Russo’s business partner, Nishi Whiteley. “That is a very low number, 28.”
“It’s crazy. I could not believe it,” May told me. “Like, we’re trying to help you guys.”
Even with only 28 CHS patients in the study, and a control group of 12 other potheads who agreed to genetic testing, Russo soon felt his hypothesis had been confirmed as correct. He reached out in the summer of 2020 to let me know he found that 96% of the CHS patients they had tested had a genetic mutation found in only .004% of the general population.
“It obviously means something,” he said. “And obviously there are commercial implications.”
At the same time, Russo was trying to figure out how to get more patients to return their DNA testing kits, so he would have more data before trying to publish his findings and develop a diagnostic CHS test. “I hate to say it, but it seems like our patients with CHS, a lot of them are really crazy,” he told me. “The paranoia in this group is unbelievable.”
He and May created a plodding, 29-minute YouTube video trying to address all of Moon’s concerns, but this did not achieve much, so he decided to reach out to Moon directly once again, making liberal use of bold text and cc’ing his attorneys.
I thought you would like to know the Cannabinoid Hyperemesis Syndrome (CHS) study I am pursuing with EndocannaHealth has identified a potential signal which could be the key to quickly diagnosing and treating CHS … However, we need your help … Your public criticism of this study on social media, most especially in the Facebook CHS groups, has directly and profoundly interfered with the progression of the study … Your actions serve to prevent the advancement of science and medicine … Your public support of the study is a necessity at this point … I am asking you to take the following actions within 10 days: 1. Publish a retraction in any online forum in which you have commented and to encourage patients to participate in the study. 2. Contact any individuals with whom you have had other communication, whether verbally, electronically or in writing to the same effect to reset the dialogue. 3. Confirm within the 10 days that you have taken these steps.
“When I saw the email,” Whiteley told me, “I knew in that moment: she is not responding, and this is just going to piss her off.”
Moon did see this email as a threat. “I’m like, what the fuck?” she told me. “I felt very confident in my stance of not supporting this study. It doesn’t feel right to me. They have an agenda. It’s either financially driven or DNA collection driven, to help the Endocanna company.”
She and Erica coordinated to block any mention or representative of the study from their Facebook groups, convinced that Russo’s primary motive was money.
“They’re just full of a lot of shit, and they’re just preying on the weak,” Erica told me. “Anyone that is not going to benefit from the research, I trust a lot more. This Endocanna—they are doing it purely just for their own benefit.”
These accusations infuriated Whiteley. They had “invested over $50,000 of our own money” into the CHS study, she told me—“mostly Ethan’s life savings.” She explained that Russo wanted the diagnostic CHS test they were developing to be as affordable as possible, and that they would eventually need to sell at least a thousand diagnostic tests to break even on the total cost of the research. “We’re not the greedy bastards we’ve been made out to be,” she said. “There’s nothing wrong with a for-profit corporation doing research. It’s the only way it’s going to get done.”
As each side grew more entrenched in its convictions, I recalled a conversation I’d had with Russo in the summer of 2019, when I stopped by his home on a stunning island off the coast of Seattle. We sat on his deck with his golden retriever, overlooking the conifers and Puget Sound. He was trying to explain the challenges of figuring out what to study when there were so many unknowns around cannabis, so many potential avenues for investigation, and yet so little money available to fund good research. He had recently started his own company with Whiteley, not long after leaving a company that I had written critically about because it was acquiring broad utility patents on many different strains of cannabis plants. I wondered whether my investigation had made him feel ethically compromised—whether he had quit because he thought he’d been caught up in a very wealthy man’s apparent ploy to start the Monsanto of weed.
Russo told me his friends from medical school were now all retired to the golf course, but he was convinced his life’s work was nowhere near complete. In spite of the adulation he received from many within the cannabis culture, he was frustrated and dissatisfied. How could he best balance the needs of patients with the realities of the market? What could he study that would both be useful and provide a modest opportunity to sell a product?
He had landed on CHS.
In early 2021 Russo emailed me with an update: there had been a mistake. The 28 CHS patients did not share one ultra-rare mutation. The results are impressive, but perhaps not quite the blockbuster that we thought previously due to a software glitch on the preliminary results, he wrote. Instead, in comparing the genetic data of the 28 CHS patients and the 12 controls, the study had found five genes with statistical significance, including one found in 71.5% of the CHS patients that was associated with pain, heat, and gut motility.
That March, Russo submitted the study to the Journal of the American Medical Association, but he told me the journal pushed back on why he only had genetic data from 28 of the 205 CHS patients that qualified for testing.
In the end, he published in Cannabis and Cannabinoid Research, a journal where he also sits on the editorial board (the journal’s editor in chief, University of California at Irvine professor Daniele Piomelli, wrote me in an email that editorial board members “don’t get any special treatment” and their papers “are carefully reviewed like all others by non-conflicted reviewers”). Russo also convinced Whiteley they should spend an additional $3,200 to make the study public, instead of putting it behind a $35 paywall.
By the beginning of 2022, Russo’s $199 test to “identify if you have the genetic markers associated with CHS” was for sale. Moon, who regularly searches for CHS-related keywords, noticed almost immediately, and posted to Facebook: There is no legit DNA test to tell you how much you should or shouldn’t consume if you have cannabinoid hyperemesis syndrome. Don’t be fooled by the companies preying on those with this syndrome. They are a scam.
When someone replied asking her what she was talking about, she wrote, Y’all I’m not linking to this atrocity.
Over the phone, she told me she couldn’t believe Russo was selling a diagnostic test based on the DNA of only 28 patients. “They don’t have sound data of if this is a genetic condition or not,” she said. “It’s alarming.”
Di Marzo, the cannabinoid biochemist in Quebec, agreed. “You have to validate it with much larger cohorts,” he said. “I would have used a thousand patients, not just 28.” Cannabis research is a small world, so Di Marzo knows and respects Russo: “Ethan is a valid scientist who knows a lot about cannabinoids, but maybe he knows a bit less about genetics.” He began to laugh. “If they set up a company based on this, they are very, very courageous, very brave.”
It had been a difficult couple of years for Moon, especially with the isolation of the pandemic, but her physical health was a lot better: she hadn’t vomited since 2019. She recently gave a talk in conjunction with the UCLA Cannabis Research Initiative, calling again for more research into her condition. And even though she really missed smoking weed, she knew that the work she was doing on social media, reaching out to doctors with treatment suggestions and counseling other patients, was “literally changing lives.”
But some people in the cannabis industry remain wary of Moon and her motives. Lee Hopcraft, an entrepreneur, told me he had blocked her on all his social media. “She just kept going down these failed paths based on her grandiose ideas of herself, and realized that if she can’t impress people, she could at least get sympathy from people,” he said.
Liz Blaz, who works in cannabis and also has CHS, watched the controversy over the study unfold with great interest. She is one of the 28 patients who agreed to send back a genetic test. And unlike Moon, Blaz is able to smoke weed again without vomiting, though she only uses regeneratively grown cannabis. She thinks she can handle her pot now because she has made changes to a host of health factors she believes to be related to CHS, including diet, hydration, hormones, dental health, and a tight psoas muscle, which she describes as a product of stress and anxiety.
In the feud between Moon and Russo, Blaz had the most measured take.
“It’s a fine line between wanting to share information and wanting your voice to be heard,” she says. She sympathizes with Moon—“She’s done a very brave thing to stand up and talk about something that’s really unpopular”—but in the end, if she had to pick, she’d side with Russo. Still, “It’s not that he’s right or she’s wrong,” she says. “There is no right answer.” Everyone is operating with such little solid information about this condition, and about cannabis in general, that no one should be looking to either Moon or Russo as a single, omniscient source of truth: “There is this jockeying for who is right and it’s like, that’s just not how it goes.”
This is what often gets lost in conversations about health, whether public or personal: a sense of humility. Science is not a monarch asking for obedience, or a religion asking for faith. Research is meant to be iterative, to explore new possibilities, to find conflicting results, to strike out in wild directions and make mistakes and take risks and fail, so that someone else might come along and see everything in a new way, try the experiment again, and unravel one tiny aspect of the mysteries of life. A lot of us are so quick to deify Anthony Fauci, to condemn anyone still wearing a mask, to dismiss other people’s choices as inherently harmful, stupid, and, well, evil. In the process, we forget how fallible we all are. Life is short. The universe is infinitesimally complicated. You can only become an expert in so many things. You may be fluent in one corner of the internet but lost in another. Navigating any quest for answers online can so often be treacherous.
I thought of Blaz again in early April, when Russo and Whiteley sent me an email with a shocking subject line: Eminem has CHS. For a moment, I was floored. Eminem? As in, Slim Shady? Marshall Mathers? Detroit icon, owner of Mom’s Spaghetti? Wasn’t he off all drugs these days?
Ethan and I were recently informed Eminem has CHS. Whiteley wrote. We are trying to connect with his team.
It took about an hour of poking around for me to confirm that one of the most famous rappers in the world did not, in fact, have the unusual disorder. But a pot podcast host had sent Russo and Whiteley an Instagram post from a marijuana news and meme account, dated April 1, claiming Eminem was a CHS patient.
The researchers had fallen for an April Fools’ joke.
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