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ME/CFS Worldwide Patient Alliance (MCWPA) is BACK! We need your input and ideas!

Discussion in 'Action Alerts and Advocacy' started by muffin, Jan 12, 2011.

  1. muffin

    muffin Senior Member

    We did it! We got that 1/2 page Ad out into the Washington Post and do believe that that AD gave the Federal health organziation heads and policy makers a rather big shake up. We are seeing changes for the positive and we are being treated differently - more respect and not being ignored. I think we proved to the Washington policy crowd that we are indeed a major force to be dealt with and that super powerful AD was proof of this. IF we could put out an ad such as that in the nation's major newspaper, The Washington Post, then what more will we be doing that scares them?

    Good question. What more will we be doing? We have come up with many ideas that will be posted on the Facebook Causes site and also on our www.mcwpa.org site. Please review and make comments. We will again ask you to vote on what YOU want to see done next round. Remember, YOU the members are the decision makers on what MCWPA does. And you all did a fantastic job on that AD.

    Please hit the MCWPA Causes site at: http://www.causes.com/causes/511536?m=f042604e and also the www.mcwpa.org website. The website continues to be populated with outstanding research that everyone can reference. There is also a forum for YOUR ideas, input, and when the time comes - voting on what you all would like to see done.

    MCWPA is the media organization that pushes the messages of the ME/CFS sick out to the public, journalists, policy makers, researchers and everyone else. That's ALL we do - MEDIA CAMPAIGNS to get the attention that we should have gotten 30 years ago.

    We hit the ball way out of the ball park with the Washington Post 1/2 page AD. Now, let us see what next we do to get more messages out for funding for research and grants to organizations like WPI.

    Get back in the saddle guys!!! Time to ride!
  2. markmc20001

    markmc20001 Guest

    great job

    Hi Muffin,

    I saw the billboard in New York City and also the washington post ad. Great Job!

    Got kind of lost in that facebook link you posted.

    I would like to give a suggestion though. How about trying to raise money from wealthy individuals, especially those with neuroimmune disease, autism, and cancer in the family? The concept would be many science oriented people here could make the case for more research needed outside the government. The argument could be based on the WPI paper, and the FDA paper. Along with the confusion by the UK clowns.

    The government is slowing down progress, and science can't move ahead without real science. The false contamination crowd is NOT going to go away easy. We need large sums of money to get it done without government. Just like the WPI has so astutely done with releasing a good study without any help.

    Patients can help with letter writing campaigns from around the world without out even leaving the house.
  3. muffin

    muffin Senior Member

    Thanks Mark! The AD and PR did their jobs quite well. But we need to keep pushing in so many other areas and that does mean big money. All non-profits are looking for the Angel donors - the wealthy people who give large amounts of money. We too need those people but finding them and convincing them is rather hard. So, if you have ideas on WHO to hit, HOW to hit them, etc. please shoot them at us. We need all ideas, no idea is too out there for us. We LIKE out there ideas as those are the ones that others have not tried and are novel and may well be the big kicker.

    Please do see the Facebook Causes page and also the www.mcwpa.org site. We will be putting out a document with ALL of the major government contacts including Congress people, agency heads, etc. with email and telephone/fax so that we can react very fast. Tina Tidmore has also placed several great documents that have been written so that it takes a sick person really nothing to just copy/paste and send. I will hunt down her post with those letters. On the Advocacy page she has posted a great letter for the newspapers that anyone can and should do if possible. We have to keep fighting on ALL fronts and we will. If WE do not fight NOW, my fear is that that window will close and the sick that come in behind us will be left with nothing. Additionally, if we do not get research money and grant money for the Retrovirus family now, just how many millions and millions worldwide MAY suffer and die from diseases and cancers that may be caused in whole/part by this retrovirus?
    We need to know and we need massive research funds for ME/CFS and this retrovirus family. We need that money NOW.

  4. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Thank you, MCWPA!! What you are doing is exactly what we need- real, effective advocacy. The Wash Post ad was so on point. Also, we do need a very user-friendly web-based email writing tool with suggestions and sample text of appropriate hard-hitting demands and pleas and contact emails like you are planning to do. These are things that CAA should be doing but is not or has only done in a watered-down fashion. Again thank you so much for your work; it will save many lives!
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Survey results are in:

    Top five are: Send press release announcing next big biological finding in ME/CFS- 67%
    Public service announcements to be aired on T.V. and airports- 50%
    Support "Doctors Need to Know" information campaign- 49%
    Design a print ad and give coop money for orgs to run May 12- 35%
    Send letters to patient organizations of other illnesses associated with retrovirus- 35%
  6. muffin

    muffin Senior Member

    Washington Post Ad - Donate $50, get the Historical Ad - Help us FUND more campaigns!

    From the ME/CFS Worldwide Patient Allliance (MCWPA) - Donate 50 - Get a Piece of ME/CFS History

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

    On December 6, 2010, ME/CFS patients worldwide made history with the publication of the Virus ad in the Washington Post. It is our voice, our message, a piece of ME/CFS history and testimony to the unique collaboration of thousands of patient advocates worldwide who are no longer invisible, no longer silent.

    To celebrate our success and raise funds for future advertising/media projects we want to share this piece of ME/CFS history with you. For a limited time, make a minimum one-time donation of $50 or a monthly donation of $10 to the MCWPA and we will mail you the original newspaper page with the Virus ad; the ad that each one of us helped to make.

    Quantities are very limited and available on a first-come, first-served basis. Get your piece of ME/CFS history. Donate today, and help us begin our next project.

    Make a verified minimum one-time donation of $50 or a monthly donation of $10/month on the MCWPA Facebook Causes page at http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance.
    Make a donation of $50 to MCWPA through PANDORA www.pandoranet.info.

    IMPORTANT: Donations must be made between Jan. 24 and Feb. 7. After you make the donation please fill out the following form to submit your address so that we can mail you the ad. https://spreadsheets.google.com/viewform?formkey=dHJncVkwYkhSSHhtc1ZuR0JUWGNHRmc6MQ.

    Your submission must be received before 2/10/2011 to receive the ad. One ad per household. Please allow 4-6 weeks for delivery.

  7. muffin

    muffin Senior Member

    Tina Tidmore posted the member survey results above. This is the priority of what YOU the patients want to see next from the MCWPA.

    We need money to make things happen. Join, donate if possible, give us ideas on the Facebook Causes site or on our website (www.mcwpa.org).

    Also, we do have a limited supply of the real Washington Post newspaper with the Stunning AD available. Please read the above to see how you can get your piece of ME/CFS Advocacy history. This AD was the start of a very serious campaign to push all governments do get us funding and to make changes in their policies towards us.

    You all have seen the AD and know how powerful it is. We do believe it will be a historical document and one that several of us (ME) have protected and locked up for the future.

    Help us continue to push our messages out to the governments and the world's public. We really started off with a BANG but do need to continue - and this means donations.

  8. Mark

    Mark Former CEO

    Sofa, UK
    Hurrah! Four out of my five there, not bad at all! A most excellent plan - great minds think alike! :)

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