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Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Very important!

Discussion in 'Action Alerts and Advocacy' started by Frank, Jun 15, 2010.

  1. frenchtulip

    frenchtulip Senior Member

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    Let's get more votes!

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

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    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?
     
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    (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
     
  4. Dolphin

    Dolphin Senior Member

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    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).
     
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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

    shiso Senior Member

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    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.
     
  7. KnightofZERO

    KnightofZERO

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    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.)
     
  8. frenchtulip

    frenchtulip Senior Member

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    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.
     
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    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
     
  10. frenchtulip

    frenchtulip Senior Member

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    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!
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    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
     
  12. Dolphin

    Dolphin Senior Member

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

    Frank Senior Member

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    Europe
    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?
     
  14. Dolphin

    Dolphin Senior Member

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    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.
     
  15. Frank

    Frank Senior Member

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

    Dolphin Senior Member

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    first 10 pages (20 charities per page)
     
  17. Tuha

    Tuha Senior Member

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    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
     
  18. Dolphin

    Dolphin Senior Member

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    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
     
  19. frenchtulip

    frenchtulip Senior Member

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    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.
     
  20. Tuha

    Tuha Senior Member

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    i think, its a technical problem
     

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