The group was started by a CHS patient named Erica, a 37-year-old artist who searched for resources online after her diagnosis and found nothing, decided to start “basically a blog about my full recovery and all the things I discovered along the way. ” (Erica didn’t want to use her last name, because of the backlash that came with public discussion of CHS.) She pinned posts that recommended magnesium supplements and listed lesser-known CHS symptoms. such as convulsions and “headaches” – i.e. screaming and vomiting at the same time. Before participating, members must agree to a set of rules, including “Do not post theories or methods. unproven… This group is for proven methods and facts only.”
Erica and Moon quickly became friends, despite living across each other’s countries. As the group grows, accumulating up to a thousand new members a month, the two women feel they are uncovering important information, including which prescription drugs are best for the condition and which foods stimulate them. Any taste (cocoa, rosemary) can cause CHS patients to vomit. Erica told me, “There are a lot of us who can really use ourselves as guinea pigs. “The articles written by the doctor themselves are actually false.”
For example, she explains, she’s been told that some doctors recommend TYT patients try non-psychoactive CBD products. But when Moon tried CBD capsules, about six months after that dinner in Malibu, she was hospitalized, with three ulcers, two hernias, and a bacterial infection. Now she and Erica have worked to convince the new members of the group that to be healthy, they must give up all marijuana.
“We’ve saved thousands of lives,” said Erica.
KELSEY DAKE
In September 2019, after she spoke during 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 an FDA-approved, plant-based cannabis drug (Epidiolex, a treatment for childhood epilepsy. I have 98% CBD). Russo’s early faith in the promise of medicinal cannabis, combined with his white coat mark, made him a folk hero among pot lovers.
Russo followed early research on cannabinoid vomiting syndrome, including a 2012 study found that patients like Moon spent up to $95,000 on testing and hospitalization costs before receiving a diagnosis of CHS. He considers theories of CHS caused by pesticides “bullshit” and is curious as to why CHS affects some stoners and not others, theorizing that a sudden Genetic variation may be the cause. He thinks that if he can compare the genomes of a large group of CHS patients with the genomes of a control group of people who have not developed TYT, he could provide both patients and doctors with some things are clear.
“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 grief,” he said. And perhaps it could give the parents of many teenage and 20-year-old CHS patients who refuse to believe weeds are making them sick “additional bullets to say, “Hey, Johnny, no need. where for you. “
He decided to partner with a genetic testing company called Endocanna Health, which used its DNA toolkit to make individual cannabis recommendations based on a person’s genetics. . Russo, who is particularly averse to using marijuana, took the company’s DNA test and claimed their assessment of how his body is genetically predisposed to react to weed was shockingly accurate. surprised.
