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!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 21, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,019
    View the Post on the Blog

    View the Post on the Blog
     
  2. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    Thank you som much for all your support.
    I just want to share this Facebookpage with you. It really tells us why we want this to be done:

    This is hard to read and has been posted on the Facebookwall to Lars TH Narvestad, former Vice President of Hydro, a huge oilcompany. One of his friends has posted this for him. This is the reason for MEandYou:

    ____

    "Dear friends, family, neighbours, former colleagues and teammates,

    For more than 40 years I was able to lead a rich and privileged life, taking me to many parts of the world and enabling me to meet and engage with fantastic people. I am eternally grateful for all the good times and the numerous "Kodak"-moments I shared with so many of you. It was a journey of a full lifetime,Thank You!

    It is therefore not with bitterness I tell you that I for the last 8 years have been bedbound with a devastating neuro-immune illness known as ME (CFS). In my case, the disease appears progressive, now tying me to my bed for 22 hours a day, isolating me from everyone and everything that I hold dear.

    Despite its seriousness and chronic nature, this disease is largely ignored by the medical community, conveniently explained with psychiatry, and without any meaningful public funding.

    If you feel compelled to help me and hundreds of thousands of ME-sufferers, please support a crucial, world-leading research study of the most promising drug in the history of this disease. You can do so by clicking on the link below, "like" and share with your friends, and donate whatever you can spare (and read more about the study and its importance):

    http://www.meyou.no/donate/

    for norwegians: http://www.meyou.no/

    Donations so far have varied from 20 NOK (USD 3.5) to 100.000 NOK (ca. USD 16.000)

    All the Best,
    Lars Th./ Theo"

    PS. This message has been posted to my wall on my behalf, as I am unable to be on Facebook."
     
    ahimsa, justy, Svenja and 3 others like this.
  3. snowathlete

    snowathlete

    Messages:
    2,251
    Likes:
    2,799
    UK
    Thanks for your work to fundraise for this important study. Its great that you have some health at the moment, and I hope it lasts a long time for you. I think we all want to see this research happen, so that many of us have a chance at health or something close to it, and on an ongoing basis. I think it is very sad that the Research Council of Norway are not funding it. Sure, they support it, and even agreee it should happen, but if they don't help, what good are they? It's the same story in the UK and elsewhere. It shouldn't be like this. But it is.
    So, I agree that we have to raise the funds ourselves, because no one else is going to do it for us. I'll be making a donation and I hope other people do as well. I would encourage anyone who does, to post here saying so, as this helps encourage others to do likewise.
     
    justy, ggingues and Svenja like this.
  4. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    Thank you for your comment, snowathlete. Great if those that have the capacity shares thoughts.

    I agree, it should not be this way, but this is the way it is. The Research Council of Norway refuses 9 out of 10 projects, and there are many good ones.

    This time, we surpass the regular channels, and do fund this important trial ourself, together with friends, colleagues and others that cares for knowledge. The good part is, we are a huge group. People that did not know anything about ME starting to engage.
    I love it!

    As I always said - it´s the healthy ones that should care for and help the sick. One day it´s the other way around.
     
    justy and ggingues like this.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,123
    Likes:
    976
    Concord, NH
    I donated some time ago, perhaps I will/can make another donation.

    GG
     
  6. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    Great with your former donation, ggingues, and also, consider inviting your friends and share this information:

    http://www.meyou.no/donate/share-info-about-us/

    :)
     
  7. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    Reddit is a site where everyone can vote for newscases. If a case get a lot of thumbs up, the journalists will look more careful.

    Do you want the world to be aware of what we all are doing in MEandYou?

    Click this link, register, and then push the arrow which point upwards to give the article a point. Please leave a comment. Thank you.

    http://www.reddit.com/r/medicine/comments/1ak3ab/norwegians_tries_to_crowdfund_important_mecfs/?sort=top
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,255
    UK
    Hi Maria - I just registered on Reddit (took a few seconds, doesn't require your email address) but I can't find this arrow. Can you tell me where it is (or can anybody mark it on a screenshot)?

    Edit: Oh! Seen it. At the extreme top left of the screen there's a little green cartoon man with red eyes. Right underneath him there are two pale grey buttons. We need to hit the 'up' arrow.
     
  9. SpecialK82

    SpecialK82 Senior Member

    Messages:
    897
    Likes:
    475
    USA
    Hi Maria,

    Thank you for heading up this terrific campaign. Do you know if anyone has asked the Rituximab manufacturer if they would supply the drug at a reduced cost for this study? As I understand, the patent on Rituximab is expiring shortly and they may have no incentive to do so. But still, it is the difference of 140 patients using this drug (if the money is raised) or none of these patients using the drug. I would think that some quick math by the manufacturer would show that it is better to reduce their profit margin and supply the drug than to have no profit at all on these patients.
     
    Sasha likes this.
  10. Tally

    Tally Senior Member

    Messages:
    154
    Likes:
    115
    I've been a Redditor for a long time, it is really great site for seeing interesting links around the web, and really easy to sign up for - just choose username and password.

    However, asking people to upvote a link is against their rules, so please everyone be careful when you ask around. It would be a pity to get banned when it's for such a worthy cause.
     
  11. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    Hi SpecialK82,

    No, they have not asked the manufacturer, and I do not think they will do that either. They might think that its best to be totally independent in their research.

    These money will be raised. I´m confident. Just imagen how many who are sick, know someone who are sick etc. If everyone invite, we will be there in short time :)
     
    justy likes this.
  12. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    Oh, I did not know!
    Thank you for your warning.

    I am not going to tell anyone that they should click the link and give an arrow-up anymore.
     
  13. Maria Gjerpe

    Maria Gjerpe

    Messages:
    46
    Likes:
    119
    Oslo, Norway
    12!
    NOK 612 239
    EUR 81 300
    US$ 105 000

    (I don´t know how to add a pic, but it is suppose to come with a number "12" :) Take a quick look? https://www.facebook.com/MEYOU.no )
     
  14. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    First off, thank you, Maria, for putting this together. It's an excellent idea.

    Is there a way that we could do this in such a way that people's donations would go through only if the goal is reached and the study is able to go forward (in the style of something like a kickstarter campaign)? I feel like many more people would be willing to participate that way. People are very motivated by specific goals, and this is a great one. But I think there will be much more reluctance if their money may not end up doing what they had hoped it would. I could see my friends, relatives, etc. being willing to put some funds forward to help if it was set up that way. I would also personally be willing to put a much higher amount towards it under that framework.
     
    dannybex, wdb and snowathlete like this.
  15. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,255
    UK
    £69,000! :)
     
    Maria Gjerpe and justy like this.
  16. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,079
    U.K
    I Have donated a small amount today. My son who is 12 has donated the £25 he raised from a sponsored walk. I emailed a link to the PR story on this to a good (healthy) friend - she has donated £10 (out of a very low income) and has remailed to a larger group of her friends.

    This is how to get the money together. But we must keep going. This is such an important campaign. Please, please, please get behind it, even if you cant afford to donate - ask someone who can.

    I pray the study goes ahead and that the results continue in the same way as the smaller studies. Then i will be showing it to every doctor who thinks they can insult and abuse me.

    All the best,
    Justy.
     
  17. maryb

    maryb iherb code TAK122

    Messages:
    2,925
    Likes:
    2,061
    UK
    I agree Justy we need to get behind it as much as we are able - every little helps. How fantastic if the total was reached?
     
    Maria Gjerpe and justy like this.
  18. Purple

    Purple Bundle of purpliness

    Messages:
    1,400
    Likes:
    2,312
    Follow these steps to add this fundraising campaign's banner to your forum signature and make it into a link that takes people straight to the page where they can donate by Paypal. It is simpler than it looks!

    Note: there are two images - the purple one like the one in my signature and a white one - choose whichever one you like.

    (1) go to ‘Signature’ by dropping down the arrow next to your name on the forum (top right of the screen)

    (2) click the ‘Insert/Edit Image’ icon that looks like a tree

    (3) a box pops up asking for URL of the image – paste in this for the purple banner: http://phoenixrising.me/wp-content/uploads/MEYou_490.png
    or this for the white banner: http://phoenixrising.me/wp-content/uploads/MEYou_white_490.png

    (4) click ‘Insert’

    NB – the banner is not a clickable link yet but just a static image. To make it a clickable banner that takes people to the Paypal donation link:

    (5) while still in your signature, click the banner image that you just inserted – it will become highlighted and blue

    (6) click the ‘Insert/Edit Link’ icon that looks like a chain

    (7) a box pops asking for the link URL – paste in this: http://www.meyou.no/paypal/

    (8) click ‘Insert’

    (9) click ‘Save’ to save the changes to your signature


    For people who find the banners in the signature hurt their eyes, you can turn off people's signatures:
    At the top of the page, click the down arrow (triangle) next to your name and choose 'Preferences'. Scroll down until you see 'Options' and untick the box that says 'Show people's signatures with their messages' and click the 'Save' button at the bottom.
     
    Maria Gjerpe, Svenja and justy like this.
  19. taniaaust1

    taniaaust1

    Messages:
    8,312
    Likes:
    5,253
    Sth Australia
    Thanks PR and Maria for this article. I cant think of anything more important right now.
     
  20. snowathlete

    snowathlete

    Messages:
    2,251
    Likes:
    2,799
    UK
    Well done to your son Justy; what a star! You must be very proud!
     

See more popular forum discussions.

Share This Page