A new support group that aims to assist those with diseases that are often misunderstood will hold its first meeting Tuesday in Orillia.
Action CIND (Chronic Immunological and Neurological Diseases) is a registered charity founded by Brechin resident Alison Rae. There are support groups in Toronto, but Rae noted there aren’t any in this area. Thanks to a grant from the Community Foundation of Orillia and Area, that is changing.
Action CIND is for those who have myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and/or multiple chemical sensitivity (MCS)/environmental sensitivities. Rae has all of them.
“I can pretty well speak to what it’s like to live with them,” she said.
In short, it’s not easy.
“It took me about four years to be diagnosed. I was told I was just depressed,” Rae said. “It’s not taught in Canadian medical schools. We’d love to get them into the med schools. Some doctors just don’t believe in it and tell people they’re just depressed.”
While there is “some good research happening,” there’s a long way to go.
“I haven’t seen a lot for fibromyalgia and there’s very little for MCS, which is unfortunate because living with MCS is unbearable,” Rae said.
Tuesday’s meeting will take place in the Don Shave Meeting Room at the Barnfield Point Recreation Centre, 500 Atherley Rd., from 1 to 3 p.m. Further meetings will take place at the same time and place on the third Tuesday of each month.
Rae encourages people to attend to learn more about the diseases and be among like-minded people.
“Having support from someone who ‘gets it’ is incredible. It just validates you. For so many people, even their families don’t understand. When you get into a room with people who understand it, you can talk about it and learn how to manage it,” she said. “It’s a safe place. You’re not criticized. You’re not judged.”
Tuesday’s meeting is a scent-free event.
For more information, email Rae at [email protected].
For more on Action CIND, check out its website.
