Phoenix Rising presentation at IoM meeting Jan. 27th

[Bob]

Here's the video for Phoenix Rising's presentation:
www.youtube.com/watch?v=NxoRs4SCQE0&list=PLGTMA6Qkejfj8CzsYdyxTcHb6ZrhM6Jpn

 

[SOC]

There are many ME patients out there who still work but only part time eg a couple of days per week.

I guess I qualify as working, but honestly, saying I'm "employed" is only strictly accurate and otherwise more like misinformation. I have an MS in Mechanical Engineering. I worked in engineering research. I taught engineering. I did engineering consulting work. Now I tutor 12-15yos in math and science 15-20 hours a week. Yes, I'm employed after a fashion. I don't work in my field, or up to my training. I don't have insurance or retirement benefits of any kind. It only marginally feels like being employed in any real sense.

I hate this kind of statistics. They hardly ever represent the real situation.

 

[WillowJ]

The severely ill don't spend time on message boards either. It is difficult to know how many PWME are still working.

Also the most ill do not show up at the doctor and may not have anyone who would answer surveys on their behalf. It is indeed difficult to quantify anything here.

 

[Nielk]

New PR article as an overview of the IoM meeting: http://forums.phoenixrising.me/inde...inition-first-open-meeting.28225/#post-430021