I don't wish anybody ill here, but I have had ET for many years, and I ran a FB group and blog for several years when you couldn't find support or info on ET. I had 6,000 patients from every continent except Antarctica on the FB page at its peak, and I learned these lessons. Please excuse the length of the post.

1. Supplement sellers often pose as patients on support sites and claim that whatever they're selling will control platelets. First it was resveratrol, then turmeric, then CBD oil, now apparently 'shrooms. Mostly the claims say how GREAT they feel and they offer some very tenuous studies to support their claims. God knows, I wish dark chocolate bonbons and smoking dope would cure or control ET. But they don't.

2. Cancer patients are sitting ducks for other people's conspiracy theories about traditional medicine. Many do not confide in friends and relatives because they don't need to hear that when they're hit with a cancer diagnosis.

3. There are many people who use the "everyone is different" mantra to justify making scientifically unsound medical decisions and, by example, encouraging others to freelance. Sorry, but ET pretty much works the same way in all patients. Some patients do better on Peg than HU, some patients will be more likely to have bone pain or strokes. But it's not like we're so different that I need chemo, but you just need a glass of red wine every night.

4. Many patients obsess over platelet counts without understanding that ET isn't just about platelets, but about a genetic mutation that affects blood production in the bone marrow and causes fibrosis in the bones themselves. ET also seems to have system-wide effects by triggering histamine/inflammatory responses, which are still poorly understood.

5. Doctors do a terrible job explaining ET and what the treatment will do. They also vary a lot in how well They keep up with the latest research. They gripe about patients googling things, but can only spare you 10 minutes once or twice a year to talk to you. It's how American for-profit care works. Their treatments do work. Holistic practitioners tend to spend a LOT of time with people and offering loads of empathy and treatments supposedly tailored to their specific bodily needs. Their treatments do not work.

I don't really have anything else to add here, so I'll get off my soap box. I hope it's food for thought. I hope people trying alternative treatments are consulting with doctors and being monitored.