• 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.

Chase Community Giving - Your Vote Could Be Worth $1 Million in Donations!

Frank

Senior Member
Messages
850
Location
Europe
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

Aftermath

Guest
Personal Information

A lot of people are probably unwilling to vote, as signing up to vote releases all of your personal information from Facebook to Chase.
 

MEKoan

Senior Member
Messages
2,630
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.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
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.
 

shiso

Senior Member
Messages
159
Voted

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.

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?
 

shiso

Senior Member
Messages
159
Andrew

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.
 

blackbird

caged.
Messages
100
Location
UK
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?
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
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.
 

dipic

Senior Member
Messages
215
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...
 

shiso

Senior Member
Messages
159
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. :(
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
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.
 

Frank

Senior Member
Messages
850
Location
Europe
I posted on several international me-forums and on the pages of several me, cfs, fm and mcs groups on facebook :confused:
 

blackbird

caged.
Messages
100
Location
UK
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
 

dipic

Senior Member
Messages
215
^ But I posted it several times on FaceBook both WPI and CFIDS Association pages have a few thousand fans, and Andrea Whittemore posted it a few times too on the front Wall and even through a mass e-mailing.

Considering I know that other friends who don't have this illness and not on any of these sites also voted to help out, I'd guess the participation rate of people on the various forums was less than 10%.

Did 90% really think the privacy issue was really that big of an issue? And couldn't spend 5 minutes to register another account just to vote?

I wonder how we expect anyone else to help us if 90% of us won't even click a button for a million dollars to help ourselves.
Wow, that makes it even worse. :(

*sigh*