#PoliticalActionFromMyBed
OMG LOOK! I CAN EDIT THIS!!!!
Click the down arrow by the heart on the right. From there, you can Delete or Edit (they call it Update though).
But you still can't edit -- fine, Update, whatever -- a COMMENT on a journal post. ("It's a swing and and miss!)
I've been thinking of awareness-building and political action tools to advocate for ourselves. Without further ado... (drum-roll please):
“I'd like to introduce you to what will be, with your help, the newest, soon-to-be #white-hot #hashtags on the Internet:
#StopTheStigma! #SpeakOut!
#Research #Treat #Cure #Invisible #Illnesses
#FUNDING.
Also?
#TeamSid #SEID #MECFS #MillionsMissing
#YourInvsibleIllnessHere
“For the sake of all of us, please share widely. Thank you.
“Good Health! Love, Light & Laughter to All”
[or your tagline here]
Perhaps we can enlist people to help us make these hashtags go viral. Surely there are a number of us here on DS and among our FB and Twitter friends who can and would share and re-tweet these. We'll want to disseminate educational URLs too, like:
The National Academies of Sciences - Engineering - Medicine Report on CFS:
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness: (http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx)
Report Brief (PDF) http://bit.ly/1XlkWji
Key Facts (PDF) http://bit.ly/1WJN3Ke
Diagnostic Algorithm (HTML) http://bit.ly/295dQdo
Proposed-Diagnostic-Criteria (HTML) http://bit.ly/297Bgkt
ME/CFS Clinicians’ Guide (PDF) http://bit.ly/298AJ3w
Presentation (PDF) http://bit.ly/297B6tp
As well as actionable links like:
http://www.openmedicinefoundation.org/donate-today-to-the-severely-ill-big-data-study/
http://solvecfs.org/donate/
www.house.gov/representatives/find/
http://www.senate.gov/general/contact_information/senators_cfm.cfm?OrderBy=state&Sort=ASC
(or http://1.usa.gov/1GnZr7i)
mailto:nihnmb@mail.nih.gov
I did these pretty quick; surely we and the others who will join us can think of more. It seems to me that if all of us with #Invisible #Illnesses join in, we'd have a pretty mighty voice.
Your ideas are welcome! Thanks to All!
Replies
Thanks for the info, Jack. I'm going to go back over this again later and check out the links. I am the only human on Earth without a Twitter, Instagram or Facebook. You'd think I was 90 years old. Oh, well, it's one of my endearing qualities :). Smiles.
Or use them here! Other than messages and journal entries not marked public, the whole site is open to search; completely Google-able.
(Instagram sucks, imho...)
Thanks, Jack. I especially liked the Clinician's Guide, I might give the link to a doctor at the local community clinic next time I go there with a life-threatening issue. Or maybe I could persuade somebody at reception to pass it to him. Can't see where it would do any harm to try educating them. They tend to live in their own world here in Southwest Florida.
BTW, try the new tutorials on DS. I found them helpful.
Thanks, Richie. I'll give them a shot. Let us know if you have any luck educating the infallible.