1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

Discussion in 'Fundraising' started by eric_s, Aug 14, 2011.

  1. Nielk

    Nielk

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    I think that even before tackling friend and family, we need to get the support of the patient community. After all, we are a big community. For example at this point there have been 1,607 viewings of this thread. I could be that the same people have been viewing it a few times. still, 1,607 is a far cry from 78 member on the facebook page, If we can't count on our peers who can we count on? What is holding people back to join The facebook page? I for example have my own facebook page and anyone reading it will right away realize that I am ill with ME. There are so many references to it. since when do we have to be embarrassed that we are suffering from this illness. As far as friends and family: what is wrong to be associated with a charitable entity. would they feel the same if it was a page raising money for cancer? would they be embarrassed then? They should be proud to be associated with a charitable organizations. I really don't understand the issue?
    We complain that no one is appropriating moneys for research for us. But, when you are asked to do a simple press of a button, you hesitate?

    If you are brave enough to join to let us help you here is the sight: http://www.facebook.com/?ref=home#!/...15200951912652. I will be looking out for you there.
    WillowJ likes this.
  2. Frank

    Frank Senior Member

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    Eric thanks, just joined
  3. paddygirl

    paddygirl Senior Member

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    John Lewis

    Just joined the facebook group - or at least applied. Quick question - is the John Lewis vote daily? I'm not the smartest cookie today and can't figure that out. :rolleyes: Will this mean a daily link/reminder by Facebook as on the WPI/Vivent contest?
  4. Nielk

    Nielk

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    Queens, NY
    I believe it's once per month.
  5. Nielk

    Nielk

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    Queens, NY
    WillowJ likes this.
  6. WillowJ

    WillowJ Senior Member

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    WA, USA
  7. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    We just welcomed our 100th member. We have 3 daily contests on right now to benefit our community
  8. frenchtulip

    frenchtulip Senior Member

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    I have been glad to see some of the officials from the various ME/CFS organizations joining recently--Pat LaRosa from the NJCFSA, Paul Shepherd from O.F.F.E.R., Dan Moricoli from the ME-CFS Knowledge Center. Hopefully, they will like the fundraising group and spread the word to other members of their individual groups.
    WillowJ likes this.
  9. eric_s

    eric_s Senior Member

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    Switzerland/Spain (Valencia)
    Also we have started an event, where you can get daily reminders for the contests that are active at a given moment. You can join it here: https://www.facebook.com/event.php?eid=261080323929865

    This is an easy solution for the people who are only looking to vote and like to get a reminder sent to them.
    WillowJ likes this.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
  11. taniaaust1

    taniaaust1 Senior Member

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    I just want to say that I did plan to vote this chase contest towards the end of it (I wanted to see how it all went first so where to put votes) but now that Im trying to do so.. Im completely confused and hence havent yet.. I cant work out the instructions (the ME makes doing anything new hard for me and I struggle a lot with instructions).

    (my head isnt good enough to go throu all the posts here to work out here.. its hurting from reading jsut two pages of posts at PR so I now got to go and lay down and rest and unable to read more right now). :(

    Some of us are needing others to set things up for us.. its also another reason why some here dont join FB.. I know its supposed to be just a matter of signing up etc but some of us still cant work it all out (I know this appears ridiculous as we appare to be okay at this site due to posting okay..but trying to learn a new thing and actually do it for some of us is extremely hard and sends us into confusion).


    (If i cant work it all out before voting ends.. I may need someone else to help me so I can have my votes go in.. Im finding it distressing coming to the decision that Im going to vote in this way but then finding its all too much for me to fully work out so now I feel like let down and hopeless.
    (Ive been here nearly 2 hrs so far constantly trying to work it out and getting as far as I have and now my hurt really really hurts and im close to tears).

    When i went to vote at chase it asked me if they can check various aspects of the face book i just set up including friend lists etc... so Im thinking they may be not counting accounts which appear maybe not real ones.

    I also went and asked help for all this throu the PR chat but the person there said she couldnt help me either as she'd had trouble herself and her votes when she tried to vote werent going throu. I also got told this is happening to others too with many of the votes not appearing.. hence i think Chase is actually now checking things and not accepting votes from accounts which dont really appear real ones eg no friends on list, no info added to profiles etc.. either that or this facebook/Chase stuff is just being too hard for some of us. Maybe someone else can explain why some of the chase votes arent going throu?).

    Anyway.. I got to go and lay down now.. Im feeling very sad as I feel like my brain has failed me and let me down once again for something I wished to really do.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I would say just do what you can and do not make yourself sicker over this. Unfortunately some people are much sicker than others and will not vote. I don't really see what can be done about this, except for perhaps if someone was at your home and guiding you thru the process. Some things just get lost in translation and are much harder for some to deal with than others!

    GG

    PS If you you are logged into Facebook and just click on the links in my signature, then you should be able to vote for 5 orgs.
  13. Aileen

    Aileen Senior Member

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    Hi Tania, Sorry you are having so much trouble.:( Hopefully I can help.

    First you are wondering what they are thinking when they ask you to "ALLOW" them on Facebook (check various aspects of your page). I really think that has more to do with gathering information for marketing purposes. Your interests (favourite books, movies, music etc.) and that of your friends so that products can be marketed to you. Good old advertising. I don't have any info on my page so nothing for them to see and all my privacy settings I've changed so that only I can see them.

    VOTING INSTRUCTIONS FOR NOVICES

    Once you have logged onto Facebook:

    A) Click on the link next to the charity's name in the list below. You will be taken to the charity's voting page.

    The FIRST TIME ONLY a box will appear asking you to ALLOW Chase. Click ALLOW.

    B) On the charity's voting page, click LIKE in the right corner beside the name of the charity.

    C) Click the green VOTE AND SHARE box

    D) In the box that appears click SHARE.

    repeat for each charity you are voting for.

    CHARITY LIST

    1. Cfsknowledgecenter Inc. http://bit.ly/lkvWpU

    2. American Association for Chronic Fatigue Syndrome, Inc. (IACFS/ME) http://bit.ly/s48mcK

    3. Rocky Mountain CFS/ME and FM Association http://bit.ly/s5fAJh

    4. Wisconsin Chronic Fatigue Syndrome Association, Inc. http://bit.ly/mlmr0c

    5. New Jersey Chronic Fatigue Association, Inc. http://bit.ly/tXpa46

    6. Massachusetts CFIDS Association, Inc. http://bit.ly/sJXeQ9

    7. Enterovirus Foundation, Inc. San Francisco, CA http://bit.ly/lzhRfi

    8. Chronic Fatigue Syndrome Fibromyalgia Org. of Georgia, Inc. http://bit.ly/kdavB3

    9. Connecticut Chronic Fatigue and Immune Dysfunction Syndrome Association, Inc. http://bit.ly/uqIqF7
  14. Dolphin

    Dolphin Senior Member

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  15. WillowJ

    WillowJ Senior Member

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    I'm sorry you feel sick, Tania. Sending hugs.

    Also I found I couldn't get the app to work at all with a certain browser, but it worked with another. Could be my computer, which is pretty old, as I also can't comment on many kinds of blogs and that isn't supposed to be a problem with both of the browsers I have installed (only a known problem for one of them).

    Still, if you follow the steps, for example, in Frank's video that Dolphin posted and it still doesn't work, try switching to a different browser, if you have two on your computer.

    But please don't anyone make yourself sick over this. We still have a bit more time, and once you get started right it's easy. And if you can't manage due to illness, that will be ok. Your first priority is always your immediate health. Long-term goals like funding is a second priority.

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