The group was founded by a CHS patient named Erica, a 37-year-old artist who searched online for resources after her diagnosis and, finding nothing, decided to “basically start a blog of my entire recovery process and all the things I discovered it along the way.” (Erica preferred not to use her last name, due to the backlash that comes with discussing CHS publicly.) She pinned posts recommending magnesium supplements and listing lesser-known CHS symptoms, such as seizures and “scromiting”—that that is, yell and vomit at the same time.Before joining, members must agree to a set of rules, including “No posts about theories or unproven methods… This group is for proven methods and truth only.”
Erica and Moon became fast friends, despite living on the other side of the country. As the group grew, accumulating as many as a thousand new members each month, the two women felt like they were discovering crucial information, including which prescription drugs were best for this condition and which foods (cocoa, rosemary) might trigger . puke. “There are so many of us that we can use ourselves as guinea pigs,” Erica told me. “The articles written by doctors themselves are actually wrong.”
For example, she explained that she was told that some doctors recommend CHS patients to use non-psychoactive CBD products. But when Moon tried to take 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 of 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 speaking on a panel at a medical conference on cannabis, Moon was delighted to learn 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-based, FDA-approved cannabis drug (Epidiolex, a 98% CBD treatment for epilepsy in children). Russo’s early belief in the promise of medicinal cannabis, combined with the imprimatur of a white coat, has made him something of a folk hero among cannabis enthusiasts.
Russo followed emerging research on cannabinoid hyperemesis syndrome, including: a 2012 study showing that patients like Moon spent as much as $95,000 in testing and hospitalization costs before receiving a CHS diagnosis. He thought the theories about CHS caused by pesticides were “bullshit” and was curious as to why CHS affected some stoners and not others, hypothesizing that a genetic mutation could be responsible. He thought that if he could compare the genomes of a large group of CHS patients with the genomes of a control group of potheads who had not developed CHS, he could offer both patients and doctors some clarity.
“The original idea was: can we develop a diagnostic test for this?” Russian told me. “A $180 genetic test might save people a lot of grief,” he said. And maybe it could give the parents of the many CHS patients in their teens and 20s who refused to believe that weed made them sick “more ammunition to say, ‘Hey, Johnny, don’t smoke for you.'”
He decided to partner with a genetic testing company called Endocanna Health, which had used its DNA kits to make individualized cannabis recommendations based on a person’s genetics. Russo, who isn’t a big fan of cannabis himself, had taken the company’s DNA test and claimed the assessments of his body’s genetic predisposition to respond to weed were surprisingly accurate.