The group was started by a CHS patient named Erica, a 37-year-old artist who, after her diagnosis, looked for resources online but found nothing, and decided to build “basically a complete recovery process about me. Found out along the way with bloggers of all things.” (Erica would rather not use her last name, because openly discussing CHS would cause backlash.) She topped the post recommending magnesium supplements and listing lesser-known CHS symptoms, Examples include seizures and “scromiting” – screaming and vomiting at the same time. Before joining, members must agree to a set of rules, including “posts without any theories or unproven methods…this group is only for proven methods and truths.”
Erica and Moon became good friends, despite living with each other across the country. As the team grows, with up to 1,000 new members a month, the two women believe they are discovering important information, including which prescription drugs are best for the condition and which trigger foods (cocoa, rosemary) can also cause CHS The patient vomits. “We have so many people that we can actually think of ourselves as guinea pigs,” Erica told me. “The article written by the doctor himself is actually wrong.”
For example, she explained that she was told that some doctors recommend CHS patients try non-psychoactive CBD products. But when Moon tried taking CBD capsules about six months after dinner in Malibu, she ended up in the emergency room with three ulcers, two hernias and a bacterial infection. Now, she and Erica are trying to convince the new members of the group that they must quit all marijuana forever in order to stay healthy.
“We saved thousands of lives,” Erica claimed.
Moon was delighted to hear that a researcher named Ethan Russo was interested in studying the condition after she spoke on a panel at the Cannabis Medicine Conference in September 2019. From 1998 to 2014, Russo conducted research for GW Pharmaceuticals, the only company with an FDA-approved plant-derived cannabis drug (Epidiolex, a 98 percent CBD drug used to treat epilepsy in children). Russo’s early belief in the prospects of medical marijuana, coupled with the White Coat’s approval, made him a folk hero among marijuana enthusiasts.
Russo has been following nascent research into cannabinoid hyperemesis syndrome, including a 2012 study showing that patients like Moon spent up to $95,000 in tests and hospitalizations before a CHS diagnosis. He dismissed the theory that CHS was caused by pesticides as “nonsense,” and was curious as to why CHS affects some drug users and not others, and hypothesized that a genetic mutation might be the cause. He thinks that if he can compare the genomes of a large group of CHS patients with the genomes of controls without CHS, he might be able to provide patients and doctors with some clear information.
“The original thought was, could we develop a diagnostic test for this?” Russo told me. “A $180 genetic test might save people a lot of pain,” he said. Maybe it could give the many parents of teens and 20-somethings with CHS who refuse to believe marijuana makes them sick “more ammo to say, ‘Hey, Johnny, don’t serve you.'”
He decided to partner with a genetic testing company called Endocanna Health, which has been using its DNA kits to provide personalized cannabis recommendations based on a person’s genes. Russo himself, who isn’t particularly fond of marijuana use, took the company’s DNA test and claims its assessment of his body’s genetic predisposition to respond to weed is very accurate.