Helping to win $900,000+ for ME/CFS research - brainstorming for Round 2, Chase comp

[frenchtulip]

I did a less-than-thorough google check for an article about the Chase wins in the Charlotte Observer and the Reno Gazette-Journal (or is it the other way around?) and didn't find anything. Maybe an article will still come out. The winners were listed in some financial newspapers. I would be happy to contact the CAA or the WPI or both to suggest the idea unless someone else would like to do it.

Charityfundraiser, I like the idea about contacting researchers and so forth. I have been trying to think of an easy way to do this--there may be researcher groups on Facebook. And email addresses should be fairly easy to find. I did have this thought--Isn't there a "Research Triangle" in NC? I will try to check and see what kind of research goes on there--some technological, I think. But there may be some relevant to ME/CFS, too. Oh, just had a humorous thought--we could ask the CDC to help us--at least the CFS division. Oh, and also the NIH and the CFSAC. It has been posted on the IACFS Facebook page, I believe. I don't know if Dr. Bell would put it on his website, but maybe.

 

[helen41]

As a contester, usually a cash prize would be considered unsportmanlike, and I would worry about being disqualified. People who play games like farmville, hatchlings, frontierville, etc seem to have a way of giving people "missions", such as votes, for rewards within the game. That seems to be ok, because it's virtual, no money changes hands. If anyone has a contact who plays these games, it could be a huge resource.
I'll take care of the bring on the vote exchange site- this time I'll start a couple of days early. Round one I voted for so many people in one day that Facebook prohibited me from posting for 24 hrs! I guess they thought I was a spammer. I was horrified!

 

[charityfundraiser]

Poll: What percent of your FaceBook friends who "Like" the CAA or WPI voted for them?

1) To see how many of your friends voted:

Go to Chase Community Giving app.
Go to "Leaderboard" -> "My Friends".

2) To see how many of your friends "Like" the CAA or WPI:

Go to the CAA (or WPI) page.
In the upper right corner, it shows how many of your friends "Like" the page.

Report back with the numbers from #1 and #2 above (or #1 divided by #2) for both the CAA and WPI.

My numbers:

CAA: 1/8
WPI: 1/7

If your numbers are anywhere near as low as mine, we can make a lot of headway just by directly messaging our FaceBook friends. For example, I have experienced the huge difference in participation rates via wall posts vs. direct e-mails when using Causes Birthday Wish.

How have you been contacting your friends to vote (in Round 1)?

a) Posting on your FaceBook wall
b) Posting on your friends' walls
c) Direct FaceBook message
d) e-mail
e) other

In Round 1, I only posted on my FaceBook wall, then when I looked at my numbers above, realized that very few FaceBook friends ever see your wall posts. I myself "hide" most of my FaceBook friends. Many of them have hundreds and thousands of FaceBook friends. There is no way most of them will see your Wall posts.

So, better option is to send them a FaceBook message directly, or post directly on their Wall. They should get notifications for those unless they have turned them off. Also, other people can see posts on their Walls.

 

[Nielk]

Another issue I would think is important is to make them understand that they should ONLY vote for WPI and CAA and not to vote for other charities (unless it directly involves them)
I know that in round one, we told them to vote for us and any other charities they chose.
It might be politically incorrect to ask them not to vote for others but, I feel that it is crucial for us if we want to win.

If for example if someone votes for WPI and another charity, we have gained nothing. Unfortunately, we are pitted against each other. A vote for another charity is a loss to us. I'm not sure everyone understands this point.

 

[Dolphin]

Another issue I would think is important is to make them understand that they should ONLY vote for WPI and CAA and not to vote for other charities (unless it directly involves them)
I know that in round one, we told them to vote for us and any other charities they chose.
It might be politically incorrect to ask them not to vote for others but, I feel that it is crucial for us if we want to win.

If for example if someone votes for WPI and another charity, we have gained nothing. Unfortunately, we are pitted against each other. A vote for another charity is a loss to us. I'm not sure everyone understands this point.

That's true. It's one reason why I have a bit of a preference for mobilising people with ME/CFS to vote as hopefully they might be more committed. Family members and partners might be pretty good; after that, people may "stray". But votes from anywhere are still good as even if they vote for 3 or 4 others, it still means 95 didn't get a vote.

ETA: perhaps people with ME/CFS wouldn't be any more loyal to the CAA. I have two ME/CFS friends who each voted for the WPI and 4 other charities but not the CAA!

 

[beesknees]

Another issue I would think is important is to make them understand that they should ONLY vote for WPI and CAA and not to vote for other charities (unless it directly involves them)
I know that in round one, we told them to vote for us and any other charities they chose.
It might be politically incorrect to ask them not to vote for others but, I feel that it is crucial for us if we want to win.

If for example if someone votes for WPI and another charity, we have gained nothing. Unfortunately, we are pitted against each other. A vote for another charity is a loss to us. I'm not sure everyone understands this point.

What if instead we teamed up with causes that are not competing in Chase? The Pepsi Refresh contest is still running. There are four categories, 5,000, 10,000, 25,000, and 50,000. We can pick one cause/charity in each category and ask them to vote for us on Chase and we vote for them on Pepsi. If we did this we wont have direct competetion and could get extra votes. However, I wouldn't email friends and family as to not confuse them on who to vote for, but I think there is enough of us on here to get a couple hundred votes on Pepsi.

 

[Dolphin]

Poll: What percent of your FaceBook friends who "Like" the CAA or WPI voted for them?

1) To see how many of your friends voted:

Go to Chase Community Giving app.
Go to "Leaderboard" -> "My Friends".

2) To see how many of your friends "Like" the CAA or WPI:

Go to the CAA (or WPI) page.
In the upper right corner, it shows how many of your friends "Like" the page.

Report back with the numbers from #1 and #2 above (or #1 divided by #2) for both the CAA and WPI.

My numbers:

CAA: 1/8
WPI: 1/7

If your numbers are anywhere near as low as mine, we can make a lot of headway just by directly messaging our FaceBook friends. For example, I have experienced the huge difference in participation rates via wall posts vs. direct e-mails when using Causes Birthday Wish.

How have you been contacting your friends to vote (in Round 1)?

a) Posting on your FaceBook wall
b) Posting on your friends' walls
c) Direct FaceBook message
d) e-mail
e) other

In Round 1, I only posted on my FaceBook wall, then when I looked at my numbers above, realized that very few FaceBook friends ever see your wall posts. I myself "hide" most of my FaceBook friends. Many of them have hundreds and thousands of FaceBook friends. There is no way most of them will see your Wall posts.

So, better option is to send them a FaceBook message directly, or post directly on their Wall. They should get notifications for those unless they have turned them off. Also, other people can see posts on their Walls.

Good idea.

I've broken my figures down into ME/CFS and non-ME/CFS Friends - I think the non-ME/CFS Friends give a better idea of what difference my activity might have made as the ME/CFS Friends probably would heard about it from other sources (as they are active on the internet):

Non-ME/CFS friends & family who didn't get direct messages (but loads and loads and loads of activity was posted on my activity - I posted on around 150 groups/pages/causes):
WPI: 0/4
CAA: 0/4

Non-ME/CFS friends & family who got direct Facebook messages
WPI: 3/3
CAA: 3/3
(These are my three siblings so a bit of a biased sample)

Non-ME/CFS friends & family who joined Facebook specifically following a request from me to join so they could vote:
WPI: 1/1
CAA: 1/1
(That's my mum who isn't my "Facebook friend" at the moment - think she'd prefer an "anonymous" account.

ME/CFS friends who didn't get direct messages:
WPI: 8/23
CAA: 4/23

(I have tended to avoid adding people as FB friends except an initial batch when I was "young and innocent" )

Other data:
I wrote to 3 people (complete strangers) who had voted for other charities down the bottom of the 100 and had posted in the charities' boxes, saying I'd vote for their charity if they voted for mine (and said they could Google my name to show I was reliable). This was not done at the end of the contest. I then wrote to them to say that I wanted a reply by a certain day as I wanted to offer my vote to others.
Data: 0/3

 

[Dolphin]

I realised something earlier which I thought I'd highlight:

Charities only get one shot at round 2 - after the one, both the WPI and the CAA will never be eligible again*.

So we need to make an all-out effort.

*Indeed this time next year, there may be a contest for charities with turnovers of over $1m where there are no eligible ME/CFS charities.

 

[Dolphin]

I hope people more would share their data. I think, as I alluded to, that my ME/CFS Facebook friends are particularly active people - a lot/most are "leaders" in one way or another so it would be interesting to see other data.

If people don't know whether somebody has ME/CFS (or an ME/CFS-type illness), they can also create a separate category called something like "don't know if they have an ME/CFS-type illness or not" - a lot of people probably "pick up friends/friends pick them up" and they can forget after a while who the people are! I've always been a bit of a "people watcher"/had an amateur interest in psychology (or maybe I'm just nosey!) so I found it fascinating/great to be able to see who voted (and then work out who did not).

 

[Dolphin]

Posting on other FaceBook groups/pages/causes is a good effort and I will be doing that too, but again, very few people ever see those posts, probably even lower rate than personal FaceBook wall posts, because people have to specially go to the page and view the posts, not just follow the news feed from their own home which only shows page admin posts, and some pages default to page admin posts only view. If anyone has a good relationship with the organizations/admins of the pages, it would be great if they could be convinced to make a post about it themselves, as then it would show up on their followers' news feeds.

Ok, good point. And probably slightly more relevant in a contest lasting 7 days than 14 days where with the latter there is more chance that people would go to sites.

E-mails to patient organisations could perhaps specifically mentioning asking them to write to Facebook members - many of these groups would have Facebook pages. The more different people posting info the better - be it lots of us, or lots of support group leaders as one individual can get tuned out.
It would also be good if more people would "like" posts when they see them as readers can pay more attend to them. Few of my posts seem to have been "liked" and I see Faith Wong posting to lots of groups at the moment and few of her posts have been "liked" by anyone.

 

[justinreilly]

Potential Allies:

Other Illness/ Medical Orgs in the Contest (finalized list, place a end of Round 1):
13. Dogs for the Deaf
26. Intl Rhett Syndrome Foundation
28. Nat Marfan F
44. FANCONI ANEMIA RESEARCH FUND
53. The National MPS Society
65. FLORIDA'S VISION QUEST
69. EPILEPSY FOUNDATION OF FLORIDA INC
93. Infant Welfare Society of Chicago
96. Treatment Action Group (AIDS)
98. Cancer Care Services

 

[Dolphin]

Offer to help people if they have problems voting

I came across various people on Facebook who were having problems voting. There should be ways around such problems - a lot of seemed to be able to get around them. Using a different browser worked for quite a few people.

I was talking to another person today who tried to vote but couldn't and gave up. We need to minimise losses like this - there could easily be hundreds of votes lost in this.

I'm going to put my E-mail address and Facebook account details on some plugs I'm giving to people in my area i.e. contact me if you're having difficulty. I don't want the world contacting me so I thought I'd point that those who are willing to do this could plug it.

 

[Nielk]

You are correct in preparing in advance and try to find ways to overcome the hurdle of people not wanting to vote from their fb account because they were worried about the privacy of their account. That was my experience too when I asked people to vote in round 1. It's really a shame that that's the only way to vote, though be comforted that all the other groups/organizations have the same problem to deal with.

It seems to me that younger people are more apt to have a fb account and would be more open to voting and sharing their personal info. I don't have an idea though how to target that younger age group.

 

[Dolphin]

(Not exciting) Comments sought for a flyer for seats at an ME/CFS meeting

I'm doing up a flyer to leave on seats at an ME/CFS meeting on Thursday. This is what I have at the moment. It's nothing special. It's double-sided and the "background" bit is in a smaller font. I'm doing the steps in alternative colours. Nothing exciting as I say but even small corrections are useful. Feel free to PM me if you prefer. Also, has the WPI got a video that can be linked to?

ETA: I've added the file as an attachment (see end) (it's there twice but doesn't matter). I don't claim it's amazing, just something I did up quickly. Want to print it off for somebody in around 19 hours.

Help Win US$900,000 for ME/CFS Research on Facebook:
(if you are not on Facebook, perhaps you could give this to somebody who is?)



How to do it:

Do the following sometime between Thursday May 19 and Wednesday May 25, 2011 (actually people in Ireland can vote up till 5am, Thursday May 26 because of the different time zones)

Step 1: When you logged into a Facebook account, go to: http://apps.facebook.com/chasecommunitygiving/

Step 2: Click the like button near the top of the page

Step 3: Type Whittemore Peterson Institute in the Search for charities box further down the page

Step 4: Find the info on the page about Whittemore Peterson Institute and click on it

Step 5: Click on Vote now

Step 6: Go up to the Find Charities box and type in the CFIDS Association of America.

Step 7: Find the info on the page about CFIDS Association of America and click on it

Step 8: Click on Vote now

Step 9: (Optional) Feel free to send me an e-mail xxxxxxxxxxxxxxx when you have voted I will then E-mail you back when the competition is over to let you know if we win or not and how much was won. Alternatively, follow the leaderboard at: http://apps.facebook.com/chasecommunitygiving/ to see the positions it is more fun to do that!

---------------------------
There's also a video explaining how to vote at:
http://www.youtube.com/watch?v=Z0tikeIGtc4

The CFIDS Association of America have made a video at:
http://www.youtube.com/watch?v=NpbWknMYw6s
-----------

Problems? If you have any problems voting, E-mail me at: xxxxxxxxxxxxxxxxx (Facebook: xxxxxxxxxxxxxx) and I will try to help you. Often there are ways around the problems. Note: only people on Facebook can vote. It doesnt matter if you didnt vote in Round 1

---------------- Side 2 ---------------

Help Win US$900,000 for ME/CFS Research on Facebook:

***See overleaf for instructions on how to vote***




Background:


A company in the US gives out millions of dollars to charities each year. One way it decides which charities should get the money is by voting competitions and see which charities get the most votes.

It has been doing this for a few years. If a charity wins money, it is not eligible to win again so a lot of the charities who are very good at getting votes have already won. However, it means we only have one shot at this.

At the moment it is running a competition just for charities that have turnovers of between US$1m and US$10m.

Two charities that fund ME/CFS research are in the running. They are the Whittemore Peterson Institute for Neuro Immune Disease and the CFIDS Association of America (CFIDS = Chronic Fatigue and Immune Dysfunction Syndrome). The CFIDS Association of America do various activities but have said that the winnings in this competition "will support research aimed at better diagnostics and treatments for CFS." The Whittemore Peterson Institute is a relatively new institute. It was researchers from that Institute that published the paper in 2009 linking ME/CFS with the retrovirus, XMRV.

They both came in the top 100 in round 1 (April 21-May 4) so they each have already won $25,000.

The prizes in round 2 are:

$500,000 to the Charity receiving the most votes (rank 1);
$400,000 to the runner-up Charity (rank 2);
$300,000 to the next runner-up Charity (rank 3);
$200,000 to the next two runner-up Charities (ranks 4-5);
$100,000 to the next five runner-up Charities (ranks 6-10);
$40,000 to the next five runner-up Charities (ranks 11-15); and
$20,000 to the next ten runner-up Charities (ranks 16-25).

If the placings in Round 1 were to be repeated, the Whittemore Peterson Institute for Neuro-Immune Disease would get $200,000 and the CFIDS Association of America $20,000 on top of the $25,000 they each won in Round 1.

It is unclear how many votes will be required to get prizes. Round 2 is half as long as Round 1 so it could be a smaller amount or it could be more.

We are trying to get as many people as possible to vote. People anywhere in the world can vote. If you can get others to vote also, it would be brilliant. In Round 1, people contacted all sorts of people to try to get extra votes.

View attachment Asking people to vote - without my details.pdfView attachment Asking people to vote - without my details.pdf

 

[Nielk]

Great job Dolphin!
Thank you for all the hard work you have been putting into this.
It's amazing and much appreciated!

 

[Dolphin]

Great job Dolphin!
Thank you for all the hard work you have been putting into this.
It's amazing and much appreciated!

Thanks Neilk. :Retro smile:
Thanks for what you've done yourself.

 

[Dolphin]

FWIW
I posted it on 2 lists for group leaders (partly as an excuse to jog their memory). One person said:

Well done xxxxxxxxxxx

Just one thing - If they are going to be ineligible another time as they have
already won $25000 then I think something like

'Please vote - this is their only chance as they will not be eligible another
year'

should be at the very top of the flyer on the front page not tucked away at
bottom of the second!

and

Just to clarify I meant it should be at top of the instructions how to vote page
as that is the first one I saw but looking again the 'one shot' actually is near
the top of the second page - tho think it would be better in bold - which might
be the first page depending how you look at it!!

It seemed a long way down to me as I had read a lot before I came to it and I
hadn't realised we only have one shot and think that could chivvy more people!

 

[Dolphin]

Updated flyer - can be used anywhere worldwide

As I mentioned above, I made up a flyer for the seats of a meeting this week. I thought I'd post it in case it might be of use to other people. One should use this one rather that the one above.

I don't expect to win any design contests with it but if people don't have time to do anything fancier, hopefully it'll do the job. Feel free to adjust for your own purposes if you want, although it should work anywhere (hopefully).

It can also be linked to at:
http://bit.ly/mLgsxO
or
http://www.co-cure.org/Flyer_CCG_Round_2.pdf


Here's the flyer attachment:

 

[Dolphin]

Idea: if people are E-mailing local/State/regional/national/international groups, they could link to the flyer I made, attach it (or, if they do something better, send that). Such groups could have meetings that they might be able to hand it out at. If anyone has the time, it might be good to start writing now esp. for groups that don't have English as their first language so they have time to translate info. This time voting is only 7 days so there is not that much time to get everyone to vote (especially as if you get some people to vote, they might get excited and encourage other people to vote if they have enough time).

 

[Dolphin]

It could be good to get lots of votes at the start - if we're in the top few, people might think $500,000 or whatever is much more realistic than if we're down towards the bottom, and with the former be more willing to put in extra effort. Easier said than done of course.