• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Seeking Facebook Activists

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I'd like to start raising some issues with federal handling of CFS, and I'd like to do it on the relevant government pages. But I don't think it would do much if I did it alone. As far as I can see, a single post without responses won't do anything. Are any of you interested in joining me in working out how to do this, and then carrying it out.
 

Nielk

Senior Member
Messages
6,970
I'd like to start raising some issues with federal handling of CFS, and I'd like to do it on the relevant government pages. But I don't think it would do much if I did it alone. As far as I can see, a single post without responses won't do anything. Are any of you interested in joining me in working out how to do this, and then carrying it out.

I'm ready, willing to do whatever you think will get some results.:)
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Am I the only one receptive to this?

I hope not, I cannot commit firmly, I work and come rather tired most days and often don't go on Facebook, but I do subscribe to the Forums and am pretty good at voting on something daily, when that occurs.

GG
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I've been trying to find another thead here with no luck. Or maybe I saw this on a site. It is a list of facebook pages that are sponsored by DHHS. I'm trying to figure out which one would be best to post on regarding CFS and or CDC. Anyone know?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I found this. http://www.hhs.gov/facebook/

Even though I have a facebook account, I don't participate. I don't understand the culture. Can someone point me to a facebook page where a group of people are voicing complaints. The topic doesn't matter.

BTW, despite that fact that I started this thread, I am only able to get to this every few days. CFS is not the only illness I have.