Discussion in 'Action Alerts and Advocacy' started by charityfundraiser, Dec 8, 2009.
I don't understand. I've contacted several facebook groups on ME, CFS, FM with more then 20.000 members. I've also contacted the most popular me/cfs forums in Belgium and Netherlands, plus this forum and the prohealth board. But still only 262 votes and on 11 december the first voting round ends. There are a lot of charities that have over 1000 votes, why isn't that possible for us? Please speak up for these last days so we can make top 100!
A lot of people are probably unwilling to vote, as signing up to vote releases all of your personal information from Facebook to Chase.
People allow all kinds of app.s access to that information with far less expectation of good. I don't put any information on FB that I would not publish in the newspaper. I think it's a good rule of thumb.
What do people typically do? Secondary email address? Pseudonym? I have not joined, but I'd like to to vote.
I agree, and I've voted too. I don't mind if Chase finds out my Facebook ID number.
Your FB profile won't show your friends what charities you've voted for, and you don't have to be a Fan of any of the charities on their FB pages.
I hope others vote. Instead of sending WPI and other CFS charities a check $25 or $250, why not put them in the running for getting $25,000 or more for free from the deep pockets?
I don't know the answer to the question about multiple accounts, but if you don't already have an FB account, I know you can set a new one up using a pseudonym and a secondary email account.
Have I missed something there?
The links to the two charities in the first post seem to be WPI and CFIDS Ass.
Is the 2nd one the CAA?
And if so, from what I've read here and other places, voting for them would be a bad idea wouldn't it?
Well, the winners have been announced and the WPI doesn't appear to be on the list. Not that I thought it would but ah well, good try anyway people.
around 270 votes weird for such big community
I know were really sick
but sometimes I feal like we do a really bad job advocating and fighting for ourselves as a community. I voted and it took 1 minute. Why we did not have more votes really bothers me.
Well, we only have 470 active members on this forum... out of the millions that have this DD. Pretty amazing. People must simply be uninformed, disconnected and/or apathetic.
Can you imagine how much progress would be/would have been made if even a fifth of people diagnosed with this illness were active in changing things? There is no way Reeves, Wessely, et al. would have mismanaged this illness and oppressed us for so long.
This isn't something exclusive to our community, however. I mean, just look at how many people bother to vote in elections...
I'm pretty baffled too. What we need most is funds to advance the research, and this was a FREE way to get some without having to leave one's home.
I get why CFS patients haven't organized the equivalent of an MS Walk or convened mass public protests in Washington but WPI has more than 1,600 public fans on Facebook alone; CAA has more than 2,500. I just don't get why more of them couldn't click their mouses to vote in such a highly publicized contest.
Considering the puny amount of funds being spent on this disease by the government and how hard it is to raise private funding, $1 million could have made a real difference.
Agree with all the above. I joined facebook just so I could vote for the WPI. I also voted for the CAA despite the fact that I don't even like them, just out of loyalty to others who do like them.
We have to learn lessons from this and do better next time.
I posted on several international me-forums and on the pages of several me, cfs, fm and mcs groups on facebook
I posted about this a few times on facebook, but no friends voted (well, one did, but I made them sign in on my computer when they were here and did it for them).
Unless someone has an interest, they probably won't bother.
I think the way facebook now splits feeds may have something to do with it though. I posted a couple of stupid pictures, and got comments almost instantly.
Just got to keep chipping away at every angle I guess. Small steps, but always moving forward.
Added: I looked at some of the charities in the 100 and was very disappointed. I've just been back to look again, and don't want to single any out as 'underserving', but ffs. Years of being mistreated, misdiagnosed, ignored and abused, and we get less interest than some on the list. Insane.
The 100 that got through the first voting round
Wow, that makes it even worse.
You can also try a Google Site Search
Separate names with a comma.