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    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.

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Very important!

shiso

Senior Member
Messages
159
Good idea Dolphin, though I wonder if we've tapped our resources here on this particular forum for votes. I suppose/hope people who have already voted themselves may get motivated to spread the word to friends. Patient Alliance (Pandora) has now dropped down to 85th (dropping 8 places since yesterday) with 736 votes, with the next charities in the rankings in close pursuit.

Please vote for 20K for Pandora! It's free, it's easy, it's for OUR cause.
 

citybug

Senior Member
Messages
538
Location
NY
There was controversy last time for winners about new voters. Offer to set facebook up for some cfs friends.

Don't give up! July pepsi fresh won't require facebook.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
(In case I forget) It might be worth storing the final votes to see what the thresholds are in future. So we could say: last time you needed x to get top position, y to get fifth position, z to get 200th position. There may be a use e.g. in an initial E-mail blast.

Good idea!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I will be looking for some CFS-related forums, where I can post info about the contest and P.A.N.D.O.R.A. I sent an email asking the CFIDS Association to include information in their July CFIDSLink. I sent info to www.fightingfatigue.org, but am not sure if that's the kind of thing they can post. Posted on the ME/CFS board at www.dailystrength.org. Will be looking for other places. Perhaps local support groups could help get the word out.

I already sent the email to 2 of the support groups I attend, but I don't know how many people are on Facebook? Can't be there to hold there hand, even though I would like to help people out more than I can/do!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Tuha, I think people don't realize how easy it is to vote and perhaps they think their vote isn't going to make a difference.

Reminds me of a friend of mine, supposedly never votes in any elections, I just say I don't want to hear the complaints then!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
2-3 days ago PANDORA was 300 votes before the organisation on the 200 th place. now we have only around 220 votes more - so we lost a lot. there is still a lot of days to vote - till 13. july.

I think a lot of organisations will accelerate their efforts on the last days and they will get many votes. we have to do the same because i am really afraid that we will lose by only some votes and this will be really frustativ and the people will even vote less for the next time. so please if you didnt vote, find 5 minutes and go to vote - it can help us. not only the things about xmrv are important - we have to support all cfs activities.

An perhaps some of efforts in this and other avenues will pay off! We need to remain hopeful but realistic.
 

Dolphin

Senior Member
Messages
17,567
On leaderboard at the moment
PANDORA: 762
200th position: 550
And that was after a good day for PANDORA.
 

Dolphin

Senior Member
Messages
17,567
There are lots and lots of ME/CFS and Fibromyalgia Facebook groups where one can write on their wall and ask people to vote. Although probably best not to do too many at once as I think Facebook notes spammers (I was given a warning before). But if a few of us could do some, it could cover lots of groups. By writing to Facebook groups, you are writing to people who are already signed up to FB. Don't just do US groups - there is no reason people in other countries couldn't vote.
 

Frank

Senior Member
Messages
850
Location
Europe
Dolphin the leaderboard is not updated constantly, i meant the cause in the 200 th position
 

Dolphin

Senior Member
Messages
17,567
Dolphin the leaderboard is not updated constantly, i meant the cause in the 200 th position
I think it's best to go by the leaderboard even if it hasn't been updated for a little while. If one clicks on the charity that was in 200th position, it isn't necessarily in 200th position with the votes one sees when one clicks on it - it could be in a better or worse position than 200th position.

Of course, maybe in the final 48 (say) hours of the competition, one might want more regular updates but best then to look at 196-200th or 191-200th positions.

(or can you see 200th position in some other way than the leaderboard????)
 

Dolphin

Senior Member
Messages
17,567
On leaderboard at the moment
PANDORA: 762
200th position: 550
And that was after a good day for PANDORA.
So the gap on the leaderboard was: 212

Now it's 206 (6 closer - not too bad):

PANDORA: 788
200th position: 582
 

Dolphin

Senior Member
Messages
17,567
So the gap on the leaderboard was: 212

Now it's 206 (6 closer - not too bad):

PANDORA: 788
200th position: 582
PANDORA dropped one place to 88th

However gap is now 210 (4 further away! :Retro smile: )
PANDORA: 806
200th position: 596
 

Dolphin

Senior Member
Messages
17,567
PANDORA dropped one place to 88th

However gap is now 210 (4 further away! :Retro smile: )
PANDORA: 806
200th position: 596
Still 88th

However gap is now 203 (7 closer)
PANDORA: 817
200th position: 614

The situation is looking better than I thought 48 hours ago.
 

citybug

Senior Member
Messages
538
Location
NY
Oww. I was all over facebook, even the Yankees. local newspapers have lots of followers. On the way I wrote letter to oprah for mcs. they are writing to oprah to cover topic on july 3 and 4th.
Pandora says pepsi refresh spots filled up in 3 minutes, couldn't get on for next month.