Very important!

[frenchtulip]

Let's get more votes!

Invite your family and friends to vote and post blurbs on NEID-related websites and Facebook pages.

 

[*GG*]

frenchtulip, great idea. if you like, make also commercial for these organisation - they have around 30 votes - its not too much but with better commercial it can work:
NATIONAL CFIDS FOUNDATION, INC.
AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC
NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC 11

I voted for a couple of these based on the email sent by Tom Kinlon on the co-cure email. I recieved an extra vote that I sent to Cort, not sure what the status is off that? I Facebooked him and will send a PM on this site. Not sure how many votes I have cast yet? I do not think it has been 20? But not certain.

So perhaps we just need more orgs that we would like to see win, so that we can extra votes to boot?

 

[*GG*]

(May be re-posted of course)

From what I'm seeing, the WPI are no longer involved (possibly because their
income or expenditure is too big?).

Don't forget there are lots of other groups people can support with their 20
votes.

PANDORA is one that already is doing well (99 votes at the moment):
http://tinyurl.com/3akev42 i.e.
http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-al
liance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

------------

If one searches for:
- CFIDS
- "chronic fatigue"
And
- CFS
and one can get in and around 20 (it is unclear to me from their name
whether a few of others are ME/CFS groups or something completely
different).

Other groups that might have a chance if people got behind them include:

-------

1) IACFS/ME (listed as: AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME
INC)

The mission of the IACFS is to promote, stimulate and coordinate the
exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient
care and treatment. In addition, the IACFS periodically reviews the current
research and treatment literature and media reports for the benefit of
scientists, clinicians and patients.
http://tinyurl.com/35ssm4q i.e.
http://apps.facebook.com/chasecommunitygiving/charities/731416680-american-a
ssociation-for-chronic-fatigue-syndrome-inc


---------

2) National CFIDS Foundation
http://tinyurl.com/36sfkby i.e.
http://apps.facebook.com/chasecommunitygiving/charities/43350621-national-cf
ids-foundation-inc

They has supported a lot of interesting research over the years

------------

3) CFSKNOWLEDGECENTER INC
http://tinyurl.com/37oyecn i.e.
http://apps.facebook.com/chasecommunitygiving/charities/943443312-cfsknowled
gecenter-inc

and lots of others which show up if one puts in "CFIDS", "chronic fatigue"
and CFS.

Tom

 

[Dolphin]

Not sure how many votes I have cast yet? I do not think it has been 20? But not certain.

If one is in a Chase Community section and press "leaderboard", and then press "my votes", one will see how many organisations one has voted for. Subtract that number from 20 and that will the number left (there may be exceptions).

 

[*GG*]

I typed in fibromyalgia, one of my conditions, and found many orgs to choose from!!!

 

[shiso]

Pandora is in 44th place right now with approximately 270 votes.

The top 7 leaders each have more than 1000 votes. One of them is a charity that helps blind cats, with 1230 votes. My point is not to knock other charities, but to press our own cause which can really use the funds for research and advocacy we desperately need.

We shouldn't settle and we should go for the top prize of 250K!! We can only do this by working together (since we each have maximum of 2 votes per organization) and spreading the word.

 

[KnightofZERO]

Hey Everyone God Job, we can definitely do at least a few thousand since there are 4,000+ members of the CFIDS Facebook page and 2,500+ members of the WPI page. Lets keep it up, just this forum is over 2 thousand people!

Here's Franks directions again for voting for PANDORA(hope it's fine to repost):


PANDORA is in the top 200 and wins $20 000 at this point in time. (7-17)

Simple steps:

1)Log-on to your Facebook.

2)Search for 'Chase Community giving(product/service)'

3)Click 'Like' button

4) Go to the search charity box on the page and search for " NEUROENDOCRINEIMMU " or " Patient Alliance " --> (you'll find P.A.N.D.O.R.A.)

5)Click Let's get started to vote (green button); Give permission! (to the Chase application)

6)Click vote (there will be a button to the right of the name)

Additional Information: You can vote up to the 13th of july (you have 20 votes in total to use for different orgs.)

 

[frenchtulip]

Have posted on some of the NEI-related pages at Facebook

http://www.chasegiving.tk/
I have posted messages about the Chase Community Giving program on some of the NEI-related pages at Facebook and included the above URL. I plan to keep moving the message to the top frequently so that members will be sure to see it and deleting the old message.

 

[*GG*]

Cort posted on his Facebook not to send him anymore "gift" votes. I need someone to send mine to. I friended Frank, Tom Kindlon and a couple others. Please let me know who else might/wants to accept extra votes to use!

search Gaston on Facebook and you will come across my profile. Please send a message, so I know what the contact is about.

Take Care

GG

 

[frenchtulip]

Please vote for these organizations

Please vote for the following organizations. Each has over forty votes. The New Jersey Association funds CFS-related scholarships. The American Association for Chronic Fatigue Syndrome is comprised mainly of researchers and physicians and is affiliated with the International Association for CFS/ME. The National CFIDS Association has funded quite a lot of research and is staffed exclusively by volunteers. All are making worthwhile contributions. It would be great if we could move them up to be in line for $20,000.

New Jersey Association of Chronic Fatigue Syndrome Inc.
http://apps.facebook.com/chasecommu...rsey-chronic-fatigue-syndrome-association-inc

American Association for Chronic Fatigue Syndrome
http://apps.facebook.com/chasecommu...-association-for-chronic-fatigue-syndrome-inc

National CFIDS Association
http://apps.facebook.com/chasecommunitygiving/charities/43350621-national-cfids-foundation-inc

Thanks for your help!

 

[*GG*]

From Pandora Facebook page:

P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. Chase Community Giving update: PANDORA's link: http://apps.facebook.com/chasecommu...rineimmu-disorders-org-for-resech-amp-adv-inc


We are now ranking number 45 on the leaderboard with 325 votes. We need so many more votes to get to the top 20. Keep on voting. Our p...ersistence will pay off. We are resilient, let's not forget! Give your gift vote to a friend so he/she can vote again for PANDORA.

For every vote you give to another charity, leave a comment on their page asking others to to vote for PANDORA with the link provided above. Some of you are finally getting through, others are still trying. Keep on trying! Spread the word.

I failed to do this and all my 20 votes are used and it does not appear that I will be getting any more votes?! FYI

 

[Dolphin]

For every vote you give to another charity, leave a comment on their page asking others to to vote for PANDORA with the link provided above. Some of you are finally getting through, others are still trying. Keep on trying! Spread the word.

I failed to do this and all my 20 votes are used and it does not appear that I will be getting any more votes?! FYI

One can add comments on charities' comments sections at any stage.

 

[Frank]

I think it's not realistic to think pandora will get in the top 5, maybe we should concentrate on a second cause, which other CFS cause has the most votes?

 

[Dolphin]

I think it's not realistic to think pandora will get in the top 5, maybe we should concentrate on a second cause, which other CFS cause has the most votes?

NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC
76 votes on leaderboard
(but now 86 votes)

200th position on the leaderboard (bottom of 10th page i.e. not going by the numbers which are wrong i.e. with two in 1st place, the next place should be numbered 3rd place): 130 votes.

So it is quite feasible it could get up there.

The charity with 200 votes on the leaderboard is in 108th position.
i.e. 109th-200th position are 130-199 votes.
So should be able to get in there.

 

[Frank]

Yes the numbers are wrong, good way to check if the organisation is winning, if it's whitin the first 20 pages

 

[Dolphin]

Yes the numbers are wrong, good way to check if the organisation is winning, if it's whitin the first 20 pages

first 10 pages (20 charities per page)

 

[Tuha]

I am not sure if we should stop to concentrate on PANDORA. Maybe its not realtistic to get in the top 5 but the organisation on the 200 th place has 137 votes and its not so much behind. There is still a lot of time till 13 th of July. I am not pesimistic but I saw already quite many organisations which came from behind with more than 100 votes a day and they passed easily over PANDORA.
I think the other CFS organisations with the most votes are:
NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC (88)
AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC (52)
NATIONAL CFIDS FOUNDATION, INC. (47)

I am not sure if I saw all the best CFS organisations. They are not so much behind - with little bit more effort - they could get to the top 200. I am also still waiting if it will not move more up with PANDORA. Someone wrote here that there is a CFS facebook page with 40 000 fans - so its a big potential and maybe thouse people will wake up.
If you post somewhere about PANDORA, write also about emergency action list - it will be next time much easier for us:
http://action.aboutmecfs.org/
We got faster some more members after a small commercial on facebook

 

[Dolphin]

Disappearing votes

A lot of the smaller CFS/CFIDS/Chronic Fatigue (Syndrome) groups I voted for (on the first day) seem to have lost votes and are now saying that they have just 1 vote or another low number.

For example, if you look at CFIDS EMERGENCY RELIEF SERVICES, INC.:
http://apps.facebook.com/chasecommu...631155572-cfids-emergency-relief-services-inc
- it has three people's images as having supported them but is down as 1 vote!

I don't think it has affected the top 5 (incl. WPI) of the CFS/CFIDS/Chronic Fatigue (Syndrome) groups

 

[frenchtulip]

Massachusetts and Wisconsin

I thought both groups had at least 10 votes. I looked recently and they each had one, I think. I wondered what might be happening to votes.

 

[Tuha]

i think, its a technical problem