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!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 12, 2010.

  1. muffin

    muffin Senior Member

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    Thanks GG. Don't know what happened here. Will go get the post but the gist is that we do need volunteers very badly to do all sorts of things - big and small - when time and energy permits the patient. We have databases that need filling and all sorts of other outreach things to be done. So there is something that all of us sick can do for a few minutes or if more energy is available, hours!!!

    Please contact Tina Tidmore at volunteers@mcwpa.org ---- IF you want to help in ANY way for how ever much time and energy you have.
     
  2. muffin

    muffin Senior Member

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    Calling for MCWPA Volunteers! Repost. NEED Help in BIG and small ways!

    Calling for MCWPA Volunteers!

    Posted on March 27th, 2011

    Calling for ME/CFS Worldwide Patient Alliance (MCWPA) Volunteers!

    Hello MCWPA Members:

    The Fundraising/Publicity Team is looking for volunteers to assist in populating a contacts database. I promise it won’t be too complicated and you can help when you are up to it.

    We are also looking for a project manager to take over monthly faxing/letter writing campaigns. With Awareness Month coming up this job is of vital importance.

    In addition, we have other small tasks that need to be done on Facebook and other forums as well.

    Please email, volunteers@mcwpa.org if you are able to help.

    Meanwhile, ALL members can assist the cause by reposting MCWPA bulletins on their Facebook page and other forums.

    Thank you,

    The MCWPA Team
     
  3. muffin

    muffin Senior Member

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    MCWPA.org Website and Forum Changes!!

    MCWPA.org Website and Forum Changes
    Posted by Andie Pring (MCWPA WebMistress)


    We are pleased to announce that the MCWPA website has recently been updated with new content and a more intuitive navigation bar.

    http://mcwpa.org/

    In addition, the FAQs section of our forum has also been updated with new information.

    http://www.forum.mcwpa.org/viewtopic....

    If you want to stay abreast of the important work we are doing, please visit the website and forum regularly. We also welcome your continued feedback on the forum, which was created as a means to share ideas and discuss actions.

    http://forum.mcwpa.org/

    Best Wishes,
    MCWPA Website Team
     
  4. muffin

    muffin Senior Member

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    http://www.causes.com/causes/511536?m=f042604e
    Your Voice on Public Service Announcement
    Posted by Tina Marie Miller Tidmore at 10:25pm yesterday
    The MCWPA team is pleased to announce that five entries have come in for the public service announcement contest. We are now inviting the patients to go to the Patient Discussion Board and give their feedback between now and April 3 at midnight EST.

    http://forum.mcwpa.org/viewforum.php?...

    You will find it under Print and Video Advertisements with each entry having a separate thread.

    After April 3, the contestants will decide what, if any, changes they will make. And then you will be able to vote on which one you prefer.

    This PSA is going to be distributed to T.V. stations around the nation. A letter is being prepared now to be given to patient organizations asking for help in getting the PSA to the cable companies. We would also like to have print advertisements in newspapers across the nation that is designed in a similar look and message to the PSA that wins the contest. MCWPA will be giving $150 per advertisement in co-op money with local organizations pay the balance.

    Our goal for the print ads is $3,000 for 20 of them. At this point, we need $1,400 more.

    Action request 1: Please post this message on Facebook, message boards and every other place on the Internet you can find to get more input. We would like to see this blasted everywhere.

    Action request 2: Please donate at least $10 toward this cause.

    MCWPA Team
     
  5. caledonia

    caledonia

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    Cincinnati, OH, USA
  6. muffin

    muffin Senior Member

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    Thanks Caldenonia!

    The links get shortened no matter what I do. Then of course they do not work.

    "http://forum.mcwpa.org/viewforum.php?f=8&sid=53944e1a88b1ac41ea6db9609c546aed"
     
  7. muffin

    muffin Senior Member

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    Time to Contact Patient Organizations for the Public Service Announcements!!!

    Time to Contact Patient Organizations​


    http://apps.facebook.com/causes/posts/711549?m=90525af8


    Posted by Tina Marie Miller Tidmore 30 March

    May 2011 will be big for ME/CFS awareness. Awareness means getting the message to the public. One way to do this is through advertising, which leads to news coverage. We need your help in inviting patient organizations to do their part. You might send an e-mail to them that says:

    I am helping with MCWPA to bring awareness to ME/CFS in May. Ads are being designed now for local organizations to distribute or publish. MCWPA is designing the ads and offering to help with the cost. Please read either of these documents to see more information.

    "http://mcwpa.org/wp-content/uploads/2011/03/MCWPA-Awareness-Month-2011.pdf"

    "http://mcwpa.org/wp-content/uploads/2011/03/ME-CFS-Awareness-Month-ads.docx"


    Also, this is the form to fill out if you would like to participate: "https://spreadsheets.google.com/viewform?hl=en&formkey=dHpfNFdqNjZWNEZaUWFOS3RBOFZtU3c6MA#gid=0"

    Tina Tidmore
    MCWPA Administrator (www.mcwpa.org)
     
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So the help can be provided online and no need to travel etc.. Correct?

    GG
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, no travel. please contact me.

    Tina
     
  10. muffin

    muffin Senior Member

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    ((Note: I had to put the links into " " since they get cut off when copying/pasting. Please copy/paste the links into your browser. Sorry for this.))

    May: ME/CFS and other NEIDs Awareness Month
    Posted by Karen Mascuch Ravitz on 3 April 2011

    "http://www.causes.com/causes/511536?m=f042604e"

    Awareness Month is Quickly Coming Up!

    We as patients, advocates, friends and family can make a positive impact this year on ME/CFS awareness, biomedical research funding and treatment.

    We are Invisible No More & Silent No More!!!

    Here is a list of some of the sources for May Activities:

    PANDORA:
    "http://campaign.r20.constantcontact.com/render?llr=f4utbb44&v=001o1NWE3yaJ-pp_Hc8w6aTvOHYlkY_RsgENiogeN5vXhI1pJQzeHxrbEQrL0DErysYKqEmvOGuFc3J4Yxy1K4G_sF3uSHbBI9v-Vb5LcXzvWX8X5EvjjolvTT8W-AN-r3I"

    ANIDA:
    "http://anida.co/" Yes, it is .co and not .com

    CDC Demonstration:
    "http://www.facebook.com/event.php?eid=120491348028075#wall_posts"

    RESCIND 10 Letters Campaign:
    "http://www.rescindinc.org/"

    Tweet for Neuroimmune Disease Awareness:
    "http://www.actionnow.co.uk/"

    Please let us know on our FB Causes Home page if there are other Awareness Month Events that need posting.

    Lets do whatever we can to become involved and make this the most productive May ever!

    Please spread the word. Click "I read this", and post on your facebook page.

    Thank you for all your support!

    The MCWPA Team

    www.mcwpa.org
    www.cafepress.com/mcwpa
    www.zazzle.com/mcwpastore

    (Great stores!! I now have 5 tee shirts with the heavy slogan on the back that tells all the diseases that the WPI believes this Retrovirus may cause. I wear those tee-shirts out in public and I do get attention - which is what I want. People MUST read my back when they are waiting in line behind me - also, I'm 5'10 so a big walking billboard - buy from the stores!!!):thumbsup:
     
  11. muffin

    muffin Senior Member

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    http://apps.facebook.com/causes/posts/716200

    Have Your Say!

    Posted by Andie Pring on 5 April 2011

    Want a voice? Feel like no one is listening to you? Well, here's an action you can be involved in that will help educate the public on what it truly means to have this disease.

    We have a section on the website dedicated to what experts have to say "http://mcwpa.org/change-needed-now/our-forum" and now want to dedicate a whole section to what YOU have to say. We are asking you to leave comments on the forum (see link below) and we will choose a sampling to add to our website.

    So, tell us what you think about the government stance, the name, physician education, public awareness and research funding. Share your worries and hopes. Let others know what it's like living in your shoes. Let the public know what patients really have to say.

    Please visit our forum and add your voice to the mix: "http://www.forum.mcwpa.org/viewtopic.php?f=61&t=822"

    Best Wishes,
    The MCWPA Website Team
     
  12. muffin

    muffin Senior Member

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    Time to Vote for PSA - Time to Vote For ME/CFS Worldwide Patient Alliance (www.mcwpa.org)

    http://www.causes.com/causes/511536?m=f042604e

    Posted by Tina Marie Miller Tidmore on Apr 11

    You get to have your say with MCWPA. We are now calling for ME/CFS patients and their families to vote on the final versions of the PSA contest entries. After receiving patient feedback, the designers made changes.

    View PSA #1 Hallmark here:"http://www.youtube.com/watch?v=rcPkcg9Rj-w"

    View PSA #2 Serious here: "http://www.youtube.com/watch?v=x07VKqkBhzg"

    View PSA #3 Prevalent here: "http://www.youtube.com/watch?v=ik-FeVruYWg&feature=channel_video_title"

    View PSA #4 Whirlwind here: "http://www.youtube.com/watch?v=g3j2mEeiTVM"

    Be sure and view the above videos before going to the survey.

    To take the survey, please go here: http://survey.constantcontact.com/survery

    Please note, if you share this link for others to cast their vote, be sure the url address ends with "start". You must copy it directly from this bulletin or people may get a message that says they have taken the survey even if they have not. You can also direct anyone to see them here: http://forum.mcwpa.org/viewtopic.php?...

    The winning designer will received $400 from the MCWPA donations. An anonymous donor has also offered to give $100 to the winner's favorite charity. The second place winner will receive $200 and the third place winner will receive $100.

    Voting ends on April 18 at midnight EST.

    Please share this through your facebook account and forward to all other ME/CFS patients and their families.

    We also are asking people to help in distributing these PSAs to local news media. Please e-mail volunteers@mcwpa.org to help.

    Please click on "I Read This" and then share with others through Facebook. You can also forward this notice to others through e-mail.

    These are exciting times of unprecedented advocacy.

    Support the cause. Be counted:
     
  13. muffin

    muffin Senior Member

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    LINKS ARE IN " " SO PLEASE COPY AND PASTE INTO YOUR BROWSER. WE HAVE BEEN HAVING PROBLEMS WITH FACEBOOK CAUSES CHOPPING OFF THE END OF THE LINKS. PLEASE CHECK OUT THE VIDEOS AND VOTE!!!!

    Time to Vote For ME/CFS Worldwide Patient Alliance - Public Service Announcements

    http://www.causes.com/causes/511536?m=f042604e

    http://www.causes.com/causes/511536?m=f042604e

    Posted by Tina Marie Miller Tidmore on Apr 11

    You get to have your say with MCWPA. We are now calling for ME/CFS patients and their families to vote on the final versions of the PSA contest entries. After receiving patient feedback, the designers made changes.

    --->>>>>PLEASE NOTE THAT I HAD TO PUT THE LINKS INTO '' " BECAUSE THE SYSTEM CUTS OFF THE ENTIRE LINK. PLEASE COPY AND PASTE THE LINKS INTO YOUR BROWSER TO SEE THE VIDEO FOR EACH ONE. SORRY ABOUT THIS, BUT TOO MANY PROBLEMS WITH FB CAUSES CUTTING OFF LINKS:

    View PSA #1 Hallmark here:"http://www.youtube.com/watch?v=rcPkcg9Rj-w"

    View PSA #2 Serious here: "http://www.youtube.com/watch?v=x07VKqkBhzg"

    View PSA #3 Prevalent here: "http://www.youtube.com/watch?v=ik-FeVruYWg&feature=channel_video_title"

    View PSA #4 Whirlwind here: "http://www.youtube.com/watch?v=g3j2mEeiTVM"

    Be sure and view the above videos before going to the survey.

    To take the survey, please go here: "http://survey.constantcontact.com/survey/a07e3om8elwgmcak3h3/start"

    Please note, if you share this link for others to cast their vote, be sure the url address ends with "start". You must copy it directly from this bulletin or people may get a message that says they have taken the survey even if they have not. You can also direct anyone to see them here: "http://forum.mcwpa.org/viewtopic.php?f=8&t=834&p=3458#p3458"

    The winning designer will received $400 from the MCWPA donations. An anonymous donor has also offered to give $100 to the winner's favorite charity. The second place winner will receive $200 and the third place winner will receive $100.

    Voting ends on April 18 at midnight EST.

    Please share this through your facebook account and forward to all other ME/CFS patients and their families.

    We also are asking people to help in distributing these PSAs to local news media. Please e-mail volunteers@mcwpa.org to help.

    Please click on "I Read This" and then share with others through Facebook. You can also forward this notice to others through e-mail.

    These are exciting times of unprecedented advocacy.

    Support the cause. Be counted - www.mcwpa.org Team
     
  14. citybug

    citybug Senior Member

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    I hope people are looking at these.
     
  15. ukxmrv

    ukxmrv Senior Member

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    Yes, done.
     
  16. muffin

    muffin Senior Member

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    The Winning Public Service Announcement (PSA) Is....

    And the Winning Public Service Announcement is....drum roll...



    Public Service Announcement Winner in the MCWPA Contest
    Posted by Tina Marie Miller Tidmore on Apr 18

    See the winning video of the MCWPA Contest. Congratulations to Lynn. Please share this video to anyone and everyone. Let's go viral.
    ME/CFS Research

    Video: ME/CFS Research

    "http://media.causes.com/1059171?"


    [video=youtube;ik-FeVruYWg]http://www.youtube.com/watch?v=ik-FeVruYWg[/video]

    Can you help spread this important message?

    MCWPA Team http://www.causes.com/causes/511536?m=f042604e
     

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