Binkie4
Senior Member
- Messages
- 644
@trishrhymes ( edited to add user name)
This was exactly my position. I was diagnosed in 2008, joined AfME, why that organisation I can't remember, and read their magazine quarterly. I had no awareness of its history or where its approach differed from MEA. I did look at reMEmber but it seemed a local organisation. Perhaps I just googled ME.
I can't remember either when I heard of Phoenix Rising. It was when David Tuller published his blog that I began to understand the magnitude of the damage created by the PACE trial and I started following ME news avidly. I think I joined at the end of 2015 or early 2016 so there were several years when there was plenty of information out there that I wasn't accessing.
I agree with @trishrhymes that there may be many other pwme who would be glad of more information but the term " Phoenix Rising" isn't naturally linked with ME.
Am not suggesting a change of name by the way. Or maybe that would be worth it if we seriously want to grow by reaching more people???
I know I would have liked more information earlier but if we want our numbers to increase, we need to reach out particularly to newly diagnosed members, maybe via the ME charities fb pages. ( EDIT)
Before I joined PR I had difficulty finding out the bigger picture about PACE, etc because these 2 charities chose to put littleor nothing about this on their websites and FB pages. I wasn't aware of Tuller's workuntil I came here, even though I've had ME for decades and have intermittent followed the work of these charities.
There must be many. other pwme similarly uninformed through no fault of their own.
This was exactly my position. I was diagnosed in 2008, joined AfME, why that organisation I can't remember, and read their magazine quarterly. I had no awareness of its history or where its approach differed from MEA. I did look at reMEmber but it seemed a local organisation. Perhaps I just googled ME.
I can't remember either when I heard of Phoenix Rising. It was when David Tuller published his blog that I began to understand the magnitude of the damage created by the PACE trial and I started following ME news avidly. I think I joined at the end of 2015 or early 2016 so there were several years when there was plenty of information out there that I wasn't accessing.
I agree with @trishrhymes that there may be many other pwme who would be glad of more information but the term " Phoenix Rising" isn't naturally linked with ME.
Am not suggesting a change of name by the way. Or maybe that would be worth it if we seriously want to grow by reaching more people???
I know I would have liked more information earlier but if we want our numbers to increase, we need to reach out particularly to newly diagnosed members, maybe via the ME charities fb pages. ( EDIT)