The group had been started by a CHS patient named Erica, a 37-year-old artist who had searched for resources online after her diagnosis and, finding nothing, had decided to establish “basically a blog of my complete recovery process and all the things. I’ve found out along the way. “(Erica preferred not to use her last name, due to the reaction involved in publicly speaking about CHS.) now convulsions and “escromiting”, that is, screaming and vomiting at the same time.Before joining, members must accept a set of rules, such as “No publications of theories or methods untested … This group is for tried and true methods only “.
Erica and Moon quickly became friends, even though they lived all over the country. As the group grew, accumulating up to a thousand new members each month, the two women felt they were discovering crucial information, including which prescription drugs were best for the disease and which triggers (cocoa, rosemary) could also cause CHS patients to vomit. “There are so many of us that we can use ourselves as guinea pigs,” Erica told me. “Articles that have been written by the doctors themselves are really wrong.”
For example, he explained, he has been told that some doctors recommend that patients with CHS try to use non-psychoactive CBD products. But when Moon tried to take CBD capsules, about six months after that dinner in Malibu, he ended up in the emergency room, with three ulcers, two hernias and a bacterial infection. Now she and Erica worked to convince the new members of the group that in order to be healthy, they had to quit cannabis, for good.
“We’ve saved thousands of lives,” Erica says.
In September 2019, after speaking at a panel at a medical conference on cannabis, Moon was thrilled to learn that a researcher named Ethan Russo was interested in studying the disease. From 1998 to 2014, Russo conducted research for GW Pharmaceuticals, the only company with an FDA-approved cannabis drug (Epidiolex, a treatment for childhood epilepsy that has 98% CBD). Russo’s initial belief in the promise of medicinal cannabis, combined with the primer of a white robe, has made him a sort of popular hero among pot lovers.
Russo had been following nascent research on cannabinoid hyperemesis syndrome, including a 2012 study that showed patients like Moon spent up to $ 95,000 on testing and hospitalization costs before receiving a diagnosis of CHS. He thought theories about CHS caused by pesticides were “shit” and was curious to know why CHS affected some smokers and not others, and raised the hypothesis that a genetic mutation might 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 that had not developed CHS, it could provide clarity to both patients and physicians.
“The original idea was, can we develop a diagnostic test for this?” Russo told me. “A $ 180 genetic test can save people a lot of pain,” he said. And maybe I could give the parents of the many teenage CHS patients and about 20-year-olds who refused to believe the weed made them sick “more ammunition to say, ‘Hello, Johnny, there’s no such thing 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 to use cannabis, had taken the company’s DNA test and said his assessments of how his body was genetically predisposed to responding to weeds were surprisingly accurate.