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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Yes, it is disappointing.I've been trying to get everyone I'm friends with on facebook to vote for P.A.N.D.O.R.A.. I have sent invites to over 100 people and helped generate about 15 votes.
I'm really having a hard time understanding why we as a community cannot be winning this contest. There are so many of us with NEI illesses/CFS. There are so many people that are on this web site and facebook fans of the cfids association and so forth. Yet last I checked PANDORA has 174 votes leading all CFS charities.
This is a chance for us to do something that actually only takes the click of a button.
C'mon everyone ask evevryone you can on face book, send them personal invites on the iivite choice to vote for PANDORA. Lets help them and help ourselves.
There are lots of other CFS charities too. WE CAN DO BETTER! WE could even WIN the 250,000! Let's make it happen for each other!
Well, if PANDORA gets in, it's quite possible that a couple of others could also if the same people voted for them.I hope at least PANDORA stays in the top 200. Having many different organisations is not always an advantage, look at the different autism groups participating.
Just to say: I think there is something to what you say: it is possibly easier to mobilise people behind one or two groups (in this case PANDORA or WPI and PANDORA). It was just when somebody else was moaning about more people not voting, I thought I'd moan too!it's true but it's difficult to bring that message..
Another one is:
http://apps.facebook.com/chasecommu...-association-for-chronic-fatigue-syndrome-inc
IACFS/ME=AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC
Patients could show their support for researchers and professionals in the area. They'd like to fund research also but have no money or not much, as far as I know.
Just to say: I think there is something to what you say: it is possibly easier to mobilise people behind one or two groups (in this case PANDORA or WPI and PANDORA). It was just when somebody else was moaning about more people not voting, I thought I'd moan too!
Not sure what you are saying, GG?Yes, but I believe that we can only vote for our favored 1s once, until the 20th vote?
GG
Maybe you're right that a lot of people don't know?Also I wonder if everyone realizs you get 20 votes. I mean if your going to vote for one CFS org why not vote for 20 of them?