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!
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.

Voting on ads within 48 hours MCWPA Posted: Sunday 21 November at 3:30pm

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by muffin, Nov 21, 2010.

  1. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Vote on ads within 48 hours ME/CFS
    Posted on Sunday 21 November at 3:30pm


    http://apps.facebook.com/causes/posts/590436?m=9ac39973

    After getting feedback from Washington Post on how we can say our message and still get the cheaper charity rate, three ads have been submitted for final vote. We are waiting on one more. We expect to be able to present these to the patient community for a vote within the next 48 hours. We are also waiting for the website change in servers to be complete, which should be by Monday evening.

    A poll of some of the advisors working behind the scenes has determined that seven days is a good time to allow for patient voting.

    We have two websites as backups if the mcwpa.org hosting server changes are not complete.

    We will show pdfs and then will direct you to a survey where you will choose your favorite.

    On another note, Sita and others are working now to fine-tune the press release. They are asking for more donations so that they can get the press release to more news wire agencies. They want US, UK and Brussels, which we have been told will get us into much of the rest of Europe. Reminder, the first $1,000 donated to this part of the campaign will be matched. Donate here: http://apps.facebook.com/causes/?m=ed...

    Referrals. We have a list of people we plan to refer news media to when they call. This last week, we have been contacting these individuals to ask if we can have a short-notice phone number and e-mail address. We include some who can tell the history, clinicians, researchers, pediatric cases, patients (including men), experts and patients that can show it is fatal, oversees patients. So, we welcome any patient offering to do news media interviews. You will have to be ok with name (full), face, illness story being public. You will have to tell us your short-notice phone number, e-mail address and what city and state you live in, or what country you live in.

    After website server change is complete, we will be adding more content to the website.

    The "Time for Action" team, Bob and Charlotte, are working to take this ad and turn it into direct political pressure. The ads will be designed to get a news reporter to do a story which then puts pressure on politicians. It makes them accountable to the public at large. But, a more direct approach will be included. This may include e-mails, mailing copies of the ad to congressmen or other efforts. This is in discussion now. We hope to bring you more info on this soon.

    Karen is working on getting products with the ME/CFS logo and a slogan. She is looking at setting up a store account through Zazzle. Look for more information on this soon.

    Tina
    MCWPA Team

    http://apps.facebook.com/causes/posts/590436?m=9ac39973
     
  2. Andrew

    Andrew Senior Member

    Messages:
    1,977
    Likes:
    1,267
    Los Angeles, USA
    It would be helpful to have a link to the ads.
     

See more popular forum discussions.

Share This Page