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Good science for ME CFS in Spain, please support it!

Discussion in 'Action Alerts and Advocacy' started by bambi, Apr 18, 2014.

  1. bambi

    bambi

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    I have taken it on to help out raising awareness for the immune study in Spain because I believe it is an important study. They are not doing to well with donations the past few days and time is running out. Also my time and energy is very limited, so if some of you could help and repost the links and information on social media it might help.

    I compiled all information, which I think is important, to forward.



    New Immune Marker Study in Spain

    “Characterization of the T regulating cells in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” is the name of the project we are seeking funds for. The objective of the study is to establish new tools for diagnosing, as well as understanding better the causes of ME/CFS and possible therapeutic directions. This project gives continuity to the study published last year by the same researchers which proves that there are 8 molecular alterations in people with ME/CFS which seem to be related to a faulty functioning of the immune system.

    To donate:

    http://www.verkami.com/locale/en/projects/8246#


    For information from Dr. Blanco directly


    For the science interested on the topic "T regulatory cells" and immune markers
    Last edited: Apr 19, 2014
    Sean likes this.
  2. Sasha

    Sasha Fine, thank you

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    @bambi - I'm just sending you a PM - please check your inbox in a few minutes! :)
  3. Sasha

    Sasha Fine, thank you

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    @bambi - couldn't PM you for some reason - sorry!

    How about renaming your thread something like:

    IrsiCaixa study halfway there! Crowdfund needs only 13,000 euros/$18,000 in last 11 days

    People like to donate to a winning project and this one is doing well.

    If you want to change your title, you can hit the 'report' button on your own post and request it, or send a private message to Kina.

    I hope this is helpful - I'd like to see this project succeed.
    Sean likes this.
  4. bambi

    bambi

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    Thanks @Sasha for your reply.

    I also like this project to go ahead - as soon as possible!

    The thing is, the fundraising was doing well initially, but the past few days all donations have stopped. I am watching the count. It is Easter and lots of other stuff is happening; only 10 days left and we need to keep it going if we want to get the remaining 13 000 euros in. Not dollars !

    This thread was not directed at people to donate here (I think all of us who wanted to donate have already done so), but what i meant is that patients help with the effort and forward the information I have provided (just copy the entire thing from "New Immmune Marker Study……"onwards. Send it to friends or family.

    But I can change the title to a more positive one if you like.

    Bambi
    Sasha likes this.
  5. peggy-sue

    peggy-sue

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    All the donating page takes me to is something where I "pledge" something. I can't see a way of just making a payment. I have paypal, so I could make a payment now, if they take paypal.
    I don't like these "pledge-y" things. If I do that, then can't find a way of paying, I'll just mess things up.
  6. bambi

    bambi

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    Hi @Peggy, the thing " pledge" means you donate but it is on hold until the whole amount has been collect by end of this crowed funding date. You can choose how much you want to pledge, there are different amounts on the site to the right, it will lead you to your paypal account and it will be deducted from your pay pal account once the fundraising is concluded.

    Hope that helps.
  7. peggy-sue

    peggy-sue

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    I'd far rather they took the money now. :(

    Can I do that?

    I don't like things disappearing at later dates when I'm not expecting it. The funds might not be there. I keep the account empty and only put money in when I know I have to use paypal.

    Would it be in 11 days time? If I know when it would be, I can make sure it's there.
    Last edited: Apr 18, 2014
  8. bambi

    bambi

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    @Paggy darling, I also rather would like it they take it now and start with this study already now. But it will be charged and it is only a few days to go!

    Thnx for your donation ! It will changes lives; first for those who will get their complete immune profile done in this study and will have something to show for. Validation is already half way there. Than I hope we all get there and clinical trials with all kinds of meds can be accompanied by markers.

    Hugs B.
    peggy-sue likes this.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Bambi,

    You can change the thread title yourself. Just click on "thread tools" and then "edit."

    Best wishes,
    Sushi
    bambi likes this.
  10. knackers323

    knackers323 Senior Member

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    On the site it says 16000 of 5000 raised. What does that mean?
  11. bambi

    bambi

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    @knackers323 ,

    I am not sure how in detail the crowd funding stuff works, but as I was told: they initially set the goal of collecting a minimum of 5000 euro to start the study at all. If they collect more the better and they can go ahead with no further ado. If they do not manage to get the funds through this crowd funding project, the patient organization in Spain has to somehow find a way to collect the rest. What Clara told me is that they have in general problems raising money because of the severe economic difficulties in Spain. (Half of the young be people in Spain are unemployed.)

    Bambi
  12. bambi

    bambi

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    I got some reports that people have problems trying to donate and it does not show up in their pay pal account.
    If more people have problems, let me know.

    Thanks Bambi
  13. bambi

    bambi

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    I have had no further complains and donations are coming in. They have reached nearly 17 000 EU , which is great! :thumbsup::thumbsup::thumbsup:

    Just keep reposting it in FB and other social media !

    Thanks all

    Anushka
    SOC and ukxmrv like this.
  14. peggy-sue

    peggy-sue

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    I have just checked my account, to see if the pre-payment thingy is active.

    It's not. I did eventually manage to find it, but paypal have deactivated it behind my back, without telling me.
    They did send me emails to tell me I had done it.

    I may have to organise resending it. (I hate payapl. I really, really hate them.)
  15. bambi

    bambi

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    @peggy-sue,

    Thanks for reporting back. I had the same problems and did not find it in my account.

    I passed on the complains to Clara Velverde, but she is apparently out of wifi coverage area.

    Also the old link was suddenly not working and I sassed out two others which work.

    A new link is now working

    http://www.verkami.com/projects/824...de-diagnostico-del-sindrome-de-fatiga-cronica

    And this one lands you direct onto the donations page

    http://www.verkami.com/projects/824...-cronica/contribute/select/52459#reward_52459


    Anyway, we are near to 18 000 Euro. Another week to go !

    Keep circulating the right links please !
    natasa778 likes this.
  16. bambi

    bambi

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    19 000 are in ! If we could make another effort and circulate it in the next 24 hours to make it over 20 000 that would be so cool :cool:;)
  17. bambi

    bambi

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    19'700 have been raised.

    Thanks to all those who have donated and helped.

    I will try to keep you updated.
    Cheesus, peggy-sue, Sean and 2 others like this.
  18. Sean

    Sean Senior Member

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    The actual payment was collected from my bank account today, so the system seems to be working. :)
    peggy-sue likes this.
  19. peggy-sue

    peggy-sue

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    I've had notification of the payment being made, despite the email I had telling me it had been disabled.
    I'll keep an eye on things to make absolutely sure it has gone through.:thumbsup:

    It's brilliant that it did reach enough for the payments to be made.:angel::balloons::thumbsup::balloons::angel:

    (I just wish it wasn't so confusing for folk who are old enough to prefer doing everything in hard, real cash.)
  20. bambi

    bambi

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    @peggy-sue and everyone


    Yes, I am also glad the payments went through and the study is funded to go ahead. Even more, they going to continue to work with IrsiCaixa on more projects.
    peggy-sue likes this.

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