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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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    USA!
    Please post your ad comments on the www.mcwpa.org forum not here http://forum.mcwpa.org/index.php

    You can register for access to the site and then hit the forum "Print Advertisements-
    Ideas and feedback"
    Password: action

    You can chat about your ideas on the ADs here if you like but if you want the Advisors to read your comments and take them into consideration for changes then you must go to the forum site shown above. We have gotten quite a bit of comments and they are really insightful, thoughtful, and helpful. So please keep looking and adding. You have until 31 Oct to respond!

    We want your ideas and comments so that the ADs are even better with more eyes and brains looking at them. So please go there and not here to give us your input. Voting is also on the website/forum as well. Thanks! The MCWPA Team

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    Want attention, funding and real research? Major media campaign launched!

    Go to the Facebook page: http://www.causes.com/causes/511536?m=f042604e

    This major media campaign is a patient driven campaign with the support of multiple organizations. The campaign was started about a week ago to obtain members and funding quickly in order to get half and full page advertisements in the major newspapers and other media. Examples of the major newspapers include The Washington Post, which is read by every person in Washington DC including the President, VP, Congress people, investigative organizations, researchers, journalists, muck rakers, Federal employees (Those that work at the Social Security Administration and need ME/CFS background information to do their jobs) and millions of very bright, public policy people in and around the Washington DC metro area (which includes the Maryland and Virginia suburbs). This major media campaign will hit those very critical targets of people and organizations and GRAB their attention to get them informed and involved. I lived in the DC area and just about everyone reads the Washington Post.

    The half page or full page advertisement is in the major development stages now with this group killing themselves to make this happen in a timely fashion. These people know that this HUGE message on ME/CFS and XMRV must come out shortly or we lose our most critical time window for greatest impact and effect. The advertisement will have logos/graphics donated by CFIDS professionals, and the ADS will be signed by the ME/CFS support groups and the online websites that support the ME/CFS people. All of these groups together on one page show a very powerful, credible, and united front - and this is important. All groups that sign will also have their website address posted, thus they too get more members and funding and will be able to get more people informed and involved.

    I think that everyone can agree that this is a fantastic idea and one that MUST be done NOW. We all understand what our window of opportunity is and we all know we must take advantage of that open window before it closes on us again. So please, get to this Facebook page, become a member and give money. These good people need money for major newspaper ADS as they are costly but will have the greatest impact on informing everyone in the Washington DC area about ME/CFS and XMRV. Stating the facts with good, solid research will help to challenge and change how our health organizations fund, research, diagnose, and treat us. And it is way past time that this major challenge and change take place - wouldn't you say?

    What will this media campaign get us? Major attention from all areas and players in Washington DC. Your Congress people and their staff read the Post. The media people read the Post. The public policy and watchdog groups read the Post. Doctors, researchers (esp. those in the Federal government and in the large bio-technology areas of both suburban Maryland and Virginia) read the Post. Lawyers and lobbyists read the Post. Everyone reads the Post to see what's in it for them and how they can grab information and use it. Happily, those that do internal investigations on Federal organizations read the Post.

    We all used the Post for ideas, information (of course), and to find out what was really going on in the Federal government. The Post is great for breaking dirty stories that involve the Federal agencies, Congress, etc. That's their business. And this media AD will garner more attention on this entire situation that any other means that the CFIDS community has tried in the past - including lobbyists, marches, pleas to Congress via emails, etc.

    The second major newspaper under consideration is the New York Times (NYT). The NYT is the Nation's newspaper. The NYT is read everywhere and can be found in the most remote and rural places in the US and abroad. The NYT spreads the information net on ME/CFS and XMRV research far and wide across the world. It hits all countries and does much the same in informing the public, public policy people, government types, and the researchers, doctors, and others who must diagnose and treat ME/CFS. NYT is the BIG NET.

    Please, get to the Facebook page and become a member - get others to become members and give money to this incredibly critical project. THIS is how we all will get the attention, funding and research that we so badly need.

    I am a huge supporter of this idea and believe that at this point in time this is the only thing that is going to work and bring the attention (massive amounts of attention) to ME/CFS, XMRV and the failure of our Federal health care organizations to deal with our disease and this newly discoverd Retrovirus. You all have read that XMRV is believed to be a possible cause for an aggressive form of prostate cancer. And you all probably believe that there is merit in the belief that XMRV may also cause other diseases (MS, Autism, other diseases) and cancers. There is also speculation that many millions of people worldwide are either infected with or are carriers of this virus. Now, wouldn't you like the government and policy people with the POWER and FUNDING to take note of these mind-blowing facts? I do. And so do over 600 other people. This Ad campaign has raised over $1,100.00 and has 624 members as of 9pm EST tonight. Those numbers are pretty incredible for a campaign that just started and especially given that we ME/CFS sick don't have the extra money to give to efforts that we don't believe will have an enormous bang for the buck.

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

    Links for donating are set-up and other means for providing money to this project can be done if you prefer. If you would like to donate but not through Facebook, then please use the PayPal link through PANDORA's site http://www.pandoranet.info. This PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. The PayPal button is at the top left of the PANDORA website. The hardworking folks are getting the Campaign's PayPal link up and running but until then, please use PANDORA's PayPal Link.

    If you prefer to send checks instead of the above payment methods, contact the Administrators on the Facebook page and ask how to get your money to them. Should you have questions regarding this Campaign, contact the Admins. These folks are busy trying to get this ready to go, but they will respond.

    Time is of the essence now - we ALL agree on that. Help these people move it out as quickly as possible to get the money to do a really bang-up job that gets a huge response from the readers of the Washington Post and New York Times newspapers. This really is going to be the biggest and far reaching bang for your buck/Euro there is. And it will generate far more research money than what we sick alone can do.

    Finally, note that this media campaign is intended to be an on-going initiative. The major newspapers get hit first and then, with more donations, the other media outlets will be used. So, money, money, money is badly needed. The Admins of this group have been told by the Post that other advertisements like this one have gotten a great deal of media attention and interest. THIS intense attention and interest is what we need NOW. Thanks!!!


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

    Frickly Senior Member

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    Go Muffin! I am convinced! I am a member and have already donated. I hope everyone that can will give something. Even if it is $5, this will make a huge difference!
     
  3. awol

    awol *****

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    I have no idea why the thread for Project ENOUGH!!! was just locked, but since we spoke about "Our Voice, Our Message, Our Lives" in that thread, it only seems fair to mention Project ENOUGH!!! here.

    I am reposting my last comment from that thread:

    muffin,

    I believe you that it will work and I support this project. What we have going on with Project ENOUGH!!! is quite different and complementary.

    - An advertizing campaign can not write scientific rebuttals. We can, and already have. You saw our Retrovirology letter.
    - An advertizing campaign can not provide concise history of the CFS saga to newspapers to ensure appropriate coverage. We can and have started.
    - An advertizing campaign can not counter disinformation whenever and wherever it appears. We can and the more people we have doing it, the better we will be at it.
    - An advertizing campaign CAN raise awareness and sympathy to set the ground for alliances and better funding, but it can not actually build those alliances. We can, and aim to, if more people will volunteer for this role.

    Project ENOUGH!!! Supports "Our Voice, Our Message, Our Lives". The way to help with that is mainly financial.

    We would appreciate it if "Our Voice, Our Message, Our Lives" would also support us. The way to help us is mainly very small commitments of time.

    These are complementary projects.
     
  4. muffin

    muffin Senior Member

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    AWOL: Please. I recognize that both forums have so much to give and do. I am a member of both too now. I only want advocacy and not arguements. At this point I have only the energy and money for this project. Later, when this project is off and running, I will move over and help you guys with all that you are doing as I believe in what you are doing.

    But, there is more than enough evidence out there that shows when you get to the public, and esp. a targetted public with information that they did not even know about, they WILL go looking for more info, they will hit those sites with info, and they may get mad when they realize what has gone on or not been done by their own governments.

    Agree. Complementary projects and we know that synergy is the best way to get things done.
     
  5. muffin

    muffin Senior Member

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    Frickly: Thank you so much for becoming a member and donating. I have watched the membership climb in just an hour or so so I do belive people really understand the need for this type of campaign.
    So that AWOL and others know, although my husband and I do not have much money, like other CFIDS sick people (we both are terribly sick) I have given money to WPI at the same time that I gave it to this project so that WPI can continue to do the research that is needed for us all. I am trying so very hard to be a good advocate and do and say the right things.
     
  6. awol

    awol *****

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    yay! Teamwork.
     
  7. Dorothy

    Dorothy

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    I agree that this is a good cause! But could you double check the link to paypal in Post #1? When I click on it, I get the dreaded "404 page not found". Thanks!
     
  8. calzy

    calzy Senior Member

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    is there a way to donate thru paypal? sorry if this was asked already, cant find the info for paypal.
     
  9. sensing progress

    sensing progress Senior Member

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    I'll make a donation. Curious, how much will it cost to do 1/2 or full page ads in Washington Post and NY Times?
     
  10. V99

    V99 *****

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    This will really get the attention of the media, public, and Government. Come on guys, just a bit of money. There are millions of us worldwide, we can make this happen.
     
  11. Tuha

    Tuha Senior Member

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    great job muffin. I wanted to do it tomorow but you motivated me a lot so I did it now befor sleeping - so thats why I donated more than I wanted because I couldnt see good the numbers anymore :).
    now with finding XMRV is the right time to support CFS organisations and campaigns - we cannot lose more time - maybe its our last chance so lets take it. We can cry all the time that there is a small support of CFS from governement but now its on us and we can show if we want to do something for improving of our bad situation or if we gave up competly.
    V99 - this is my question all the time - where are the millions of us?
     
  12. V99

    V99 *****

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    I think most don't have computer access, and then there is the slight over estimate by the CDC.
     
  13. sensing progress

    sensing progress Senior Member

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    I tried the Paypal link but get this error:

    404 Not Found
    The requested URL '/us/cgi-bin/we...758e707b997bca' was not found on this server.
     
  14. muffin

    muffin Senior Member

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    USA!
    PAYPAL LINK QUESTION - http://www.pandoranet.info PayPal on Left Side Links to MEDIA

    The hardworking folks running this campaign are getting the Paypal link fixed on this Facebook campaign site. But for now, the PayPal link through PANDORA's site http://www.pandoranet.info/ will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description . This ensures that donations go to this media campaign.

    At the top of the PANDORA website, there is a Pay Pal button on the left, click on that, and then be sure and put "Our Voice, Our Message, Our Lives" in the description.

    Thank you all for making a donation. Keep an eye on the Facebook page for this campaign as there are updates from the Admins and you can watch the members and donations climb - and climb toward the goal of getting a strong message out at this super critical point of time.
     
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I can address the cost issue. I have called one. I have tried but not made contact with the other one.

    There are many factors in considering the cost. For example, color or black and white. Another factor is the size, of course. Then a factor is whether the advertising committee at the newspaper decides if it is an "advocacy" message or a "charity" message. Another factor is whether we require them to run it on a certain date or allow them to run it whenever they have space, within a two-week window.

    We have a group of advisors. When I get the price for the other newspaper, I will pass this on to the advisors and they will then present it to the patient community for a vote.

    So, let me hold off on revealing that right now, ok? I will say though, this is doable.

    This is just my personal opinion. When we have the ad ready to go or we have the NIH study released, we will see how much money we have at the time and will get as much as we can with what we have.

    My overall, big picture is that we will do the best we can with what we have at the time. But the key is to do more than what is being done now, which is _______________________........ well............... you fill in the blank.

    Tina
     
  16. muffin

    muffin Senior Member

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    Tuha: Thanks for making that donation. This is a very doable situation and if my husband and I have to eat cereal for several weeks, well, he and I both believe in this campaign just that much.
    Now is the time to strike.
    Let me say that the people running this campaign are doing a fantastic job. These guys are really working hard and have real professionals donating their time to get this right. CFIDS people do have super strong skills from their past lives as healthy people. All money goes to the cost of the Ads, as the work is being done by the ME/CFS people.

    Great job guys!!!
     
  17. muffin

    muffin Senior Member

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    I believe that in additioin to V99's astute comment that many ME/CFS sick don't have access to computers, that there are maybe other reasons for why you don't "see" the millions of sick.

    First, the CDC did not do their job in really counting the true CFIDS sick. They grabbed people who were fatigued for any reason, but not real ME/CFS.
    Second, we do not have doctors that know what ME/CFS looks like and thus can not and do not diagnose correctly. These poor people are misdiagnosed and not getting the treatment they need. I would bet if we had real solid data that the true numbers of sick in the US alone would be significantly higher than what the CDC says. I know several people who have ALL the symptoms of ME/CFS but do not have that diagnosis and they are so terribly sick and bedridden. My neighbor's friend is a classic ME case along with a previous breast cancer. She has the wired/tired, passing out in minutes during the day, hot/cold body temperature issues, major cognitive issues (they say she speaks childishly and that was not the case 10 years ago), and a bunch of other symptoms that are just so ME/CFS. But not the diagnosis.
    Third, people don't have insurance or money to get to a doctor, knowledgable or not. So they hide and remain sick and uncounted, undiagnosed and untreated. I would bet many self-medicate with OTC's, alcohol, drugs, and anything else they can get their hands on to help get them through the day and night and drop the pain.

    So I do think that we are very underdiagnosed and when finally we get real data on ME/CFS, I am betting those numbers will be astounding. I'm not talking the fatigued for other reasons sick, but the real and true ME/CFS people. Just me...
     
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Muffin, don't forget the folks with a diagnosis of depression who really have CFS.

    Tina
     
  19. caledonia

    caledonia

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    Hi, I was able to donate using the Paypal button on the Pandora page. I ended up donating the $5 or so I had left over sitting in my Paypal account. Wish I could donate more, but that's all I have for now.

    If Pandora has a 501c-3 non-profit status (which I think they do), they should be able get a 20% discount on advertising. If you advertise with a newspaper, then you should be able to get "free" publicity i.e. an article written about the campaign. Businesses do this all the time; you just have to ask for it.
     
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    caledonia, we are discussing tailoring the ad to bring media attention.

    Tina
     

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