We just finally after 3 years of fighting found out today that my 8 year old daughter has this and because of the way this has been going the doctor does not think that she will be one of the kids that will grow out of this but we have finally gotten an answer after so many many many different doctors and appointments and I cannot tell you how much of a weight was lifted from me the moment our doctor said “we finally have a diagnosis!” It was so overwhelming in a happy way that now we know and can try to fight this thing, this monster, with the right weapons and get her back to being a normal 8 year old little girl! Thank you Chandra Wilson for being an advocate for this and in the coming weeks while watching everything you have put out there about this I cannot wait to learn more about it.

🎉 I’m still waiting to be diagnosed. I’m 44 and have horrible episodes four times a year. Thank you for advocating!

Thank you!!!! I only started cycling a little over 2 years ago and I'm a woman in my mid-50's. It's awful! Thank you! xo

The number of times I was told this sickness was from smoking pot. Even tho I wasn’t smoking pot the first 20 years I suffered with this before I had to go to the er. I have ptsd from the crappy drs I’ve had to deal with about this.

I began last year when I was 25 I’ve been treated as though it’s: celiac, endometriosis, food poisoning, and others Glad I found this video

Anyone suffer with cycles of horrific nausea but can’t be sick? My cycles last up to two weeks and I’m totally fine in between. The nausea isn’t just “feeling a bit sick”. It’s EXTREME. The only way I can describe it is as such a severe discomfort that you can’t think straight, you’re lying on the floor squirming and begging for it to end, trying to make yourself sick for relief, and if there was a button to end it all you would press it! No anti emetics work. It’s a living hell.

Thanks you so much.

Unnecessary surgery for me. ✌️

Thankyou. Much luck.😅

My 17-year-old daughter has had all the symptoms for the last two years. It comes and goes. The only thing is, she doesn't vomit all the time. She will occasionally vomit. But not non-stop. Could it still possibly be CVS?

Are there groups where people share their experiences? After being sick for seven years I was just diagnosed with CVS, but after years of no answers I still feel skeptical. I guess I am seeking validation of having the disease from others who suffer.