A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Now Is The Time for a National PR Campaign for ME

Discussion in 'Fundraising' started by caledonia, Nov 13, 2014.

  1. caledonia


    Cincinnati, OH, USA
    "HHS, NIH, fasten your seat belts and return your tray table to the upright position because it's going to be a bumpy ride:)" Susan Maier (NIH)

    I'm sure Ms. Maier didn't realize just how prophetic her statement would become. ME patients are disgusted and disgruntled with the mistreatment perpetrated on this extraordinarily sick population by the NIH and CDC. We're mad as hell, and we're not going to take it anymore!

    With FOIA access gained to internal documents from the IOM and P2P projects, the upcoming final P2P workshop, as well as upcoming IOM and CDC Multisite results, the time is now perfect for an all-out publicity campaign.

    Let's Blow The Lid Off This Thing!
    As great as our grassroots efforts have been, it's clear we need to apply even more pressure to achieve our goals. First, we must demand that the three redefinition projects, the IOM, the P2P and the CDC Multisite Study, are stopped immediately. Their possible achievements are dubious at best and a waste of taxpayers’ money. Secondly, we must demand that the Canadian Consensus Criteria (CCC) be adopted as the official definition. Research using various definitions and cohorts renders the results uncertain. It’s imperative that a single clear definition, which includes the hallmark symptom of post exertional relapse, is used for diagnosis and research.

    We're talking about turning up the heat 1000 degrees and blowing the lid off this thing. We’re talking about an all-out campaign which will make both the US public and our policy makers in Washington sit up and take notice. We're talking about demonstrations and having our spokespeople in the national media.

    How can we possibly pull off such a thing? Because all of us are incapacitated to some degree, this type of national campaign has never been done before. The obvious answer, therefore, is to hire an innovative public relations firm to handle most of the work for us!

    As a community, we have raised $20,000 for the documentary, "The Forgotten Plague", and a whopping $213,000 for, "Canary In A Coalmine". So we know that for the right project, big money can be raised. We are asking for $26,400 which will finance a 6 month public relations campaign. The amount is not small, but we feel it's quite doable. Are you fired up? Are you ready to get this done once and for all?! We think you are!

    Are you fired up? Ready to get this done once and for all?! We think you are!

    The Proposal
    Here is the proposal from our intended PR firm, Crowds On Demand:

    With a strong Public Relations campaign, the fight to stop the unjustified redefinition of ME is an issue that we believe will resonate well with the American public.

    Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high profile policy maker. To be blunt, most Americans don’t know the reality of ME!

    Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations.

    Crowds on Demand will contact media, arrange for interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors.

    We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within 6 months and promise a 50 percent refund if the organization is not satisfied.

    A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media.

    We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting the CCC universally adopted.

    Adam R. Swart

    Email: adam@swart.org

    Cell: 650-353-0083​

    Please Donate
    ME Advocacy.org is a project of May12.org. As May12.org is a 501(c)(3) not-for-profit corporation, all donations are tax deductible.

    Both sites are run by patient volunteers, with none of the waste on salaries, buildings, and overhead associated with the large patient organizations. We are not affiliated with any government agency, and operate independently to enhance and support the campaigns already put in place by our patient advocates.

    For your convenience, donations can be spread over 6 monthly payments. Please donate today!
    Last edited: Nov 22, 2014
  2. caledonia


    Cincinnati, OH, USA
    Just found out, I can post the actual proposal we (ME Advocacy.org) received from Crowds On Demand. It provides more information than our donation ad. I hope you will find it helpful in making a decision to support this campaign.


    Crowds On Demand

    Public Relations Campaign for ME Advocacy

    October 24, 2014


    · Introduction to Crowds on Demand (Page 2)

    · Campaign Details (Page 3)

    · Case Studies (Page 4-5)

    · Pricing Information (Page 6)


    Crowds on Demand is an award-winning innovative event marketing and publicity firm specializing in developing PR “stunts” and marketing campaigns. We have developed and implemented strategies and programs involving media placement, event planning and execution, and digital marketing for a wide variety of clients in diverse categories globally.

    Our clients include governments, tech start-ups, entertainers, blue chip brands, television shows and political candidates. We have produced strong, measurable results for our clients, including media coverage, increased sales and effective crisis management. Based on this work, we have developed a strong network of media contacts, including national and international outlets, local broadcast and print, industry trade publications and digital press, including bloggers. Our philosophy in working with the media is to understand their needs and interests, provide them with great stories and support, and always treat them with dignity and respect. This media relations approach has worked extremely well for us, resulting in excellent media coverage for our clients.

    In particular, we are experts at putting together campaigns involving media placement, demonstrations and specific media targeting efforts. This helps us to publicize our clients to get their names out there and then ensure that their image is being portrayed in a positive light.

    Our Campaign

    The unjustified redefinition of ME is an issue that I believe will resonate well with the American public through our media campaign. Healthcare related issues are very popular media topics particularly in the last few years. Both liberals and conservatives in the United States believe in reforming the bloated and dysfunctional healthcare system. We can portray the redefinition of ME as an example of government bureaucrats and politicians (the NIH) going up against patient autonomy. Both liberals and conservatives feel strongly about these issues. Conservatives don’t like the NIH for many reasons and particularly do not want the government dictating a patient’s treatment. Liberals do not like the bureaucratic system of healthcare where they believe the government and insurance companies work together to provide inadequate service to patients particularly low income patients. By framing the redefinition issue as part of the broader problem, we can get a great deal of media attention for the movement.

    If you retain the services of Crowds on Demand, we will focus on the following

    1. Securing Media Attention. In particular, I will target the following:

    A. Morning shows (Good Morning America, The Early Show, etc). Emphasize the human interest story element. Also emphasize the struggle of patients

    B. Public Radio (NPR, etc). Emphasize the need for a real substantive debate on redefining diseases

    C. Conservative Media (Fox News, Breitbart, etc). Emphasize the NIH taking away patient autonomy

    D. Liberal Media (MSNBC, Huffington Post). Emphasize the fact that low income patients are suffering from these cost cutting measures

    E. Healthcare Publications. Emphasize that patients are unhappy with decisions made in Washington, D.C and their desire to have more autonomy with their care

    2. Conducting Demonstrations featuring demonstrators (and attracting media). In particular, in these locations:

    A. Outside the NIH redefinition conference

    B. Outside Capitol Hill

    C. At various medical conferences throughout the country

    3. Swaying Policymakers

    A. We will meet and arrange meetings with influential elected officials

    B. They will be more likely to meet with us and support our cause after seeing demonstrations and significant media attention

    Case Studies

    These are only a selection of the projects we have undertaken. We are the most adaptable Public Relations firm in the United States and have a proven track record putting together all types of campaign.

    Case Study #1: Publicity for a Start-up

    Virurl (now revenue.com), a start-up digital media advertising firm, hired Crowds on Demand to build hype at the Advertising Week Conference in New YorkCity. They wanted a catchy campaign that would grab attention in a way that would focus on their product, an alternative to Internet banner advertisements. Together, we developed a plan for a protest against banner ads, featuring 50 protesters holding signs saying "No More Banner Ads,” "Banner Ads Suck" and other similar signage. The rally was heldin front of the conference center on the opening day of the conference and featured speeches from executives. The event led to a popular #nomorebannerads hashtag, industry media coverage and an increase in sales of 500 percent immediately following the conference (according to CEO Francisco Diaz-Mitoma in a January 2013 NPR piece).

    Case Study #2: Taking Fashion to the Next Level

    A popular fashion designer hired Crowds on Demand to further his brand and enhance the celebrity stature of his products to justify price increases and increase sales. At a series of fashion shows and product expos, we provided attractive and well-dressed attendees to create buzz for the designer and to impress top decision makers. They wore his clothes and came up to him and praised his work. This complemented our other approach of using paparazzi and “fans” to approach him when he went out on the town in major cities including Los Angeles, Las Vegas and NYC. All of these strategies bolstered the designer’s image, leading to substantial coverage in TMZ, a doubling of his Twitter following, increased sales, and most importantly a lucrative deal with a major department store chain.

    Case Study #3: Bringing a New Vodka Brand to Market

    A start-up vodka brand hired Crowds on Demand to generate more buzz and thus break into selling product at bars and nightclubs. First, we focused on developing celebrity appeal for the product by surrounding the founder by paparazzi and organizing event sponsorships at nightclubs in Miami and Los Angeles. Second, we created a YouTube series involving models who were aspiring entrepreneurs. They were mentored by the founder as they navigated the challenges of alcohol sales. The models learned how to build up their own businesses and sell products through this process. These tactics led the brand to break into being sold in the urban nightclub market in Los Angeles and Miami. The YouTube series is now being adapted into a pilot to pitch television networks.

    Case Study #4: Presidential Public Opinion

    A foreign government hired Crowds on Demand to help generate a positive reception for its newly elected leader during the UN General Assembly. The concern was ensuring that the leader was well received by a US audience and given positive press for his work at the UN General Assembly conference. We created demonstrations of support with diverse crowds. We also used the media (primarily local and national outlets) to bring more attention to these demonstrations, which led to mostly positive press coverage for the country’s leader. The crowds that we deployed drew in additional supporters from NYC, creating a strong presence for this leader at the UN and improved perceptions of him by the American public.

    Case Study #5: Japanese Television Program

    NDTV, one of Japan’s largest television networks, hired Crowds on Demand to assist with public relations efforts associated their filming in the United States. We dealt with the public in locations across the US, particularly surrounding issues such as road closures which were the result of their shooting footage. Instead of the negative publicity that comes with a foreign entity inconveniencing people, we were able to get positive publicity for the network. This enabled them to more effectively get what they needed done effectively and quickly. Furthermore, we assisted them with getting extras to participate in scenes often on very short notice. In one instance, with only a day’s notice, we got together 100 extras in a rural region in Colorado.

    Pricing Information

    Investment of $4400 per month is all-inclusive. It includes pitching media outlets, arranging interviews, helping spokespeople for the movement prepare for interviews, spinning the story on blogs, setting up meetings with policymakers and everything in between.

    In order to achieve success for the campaign, we require a 6 month minimum for the campaign. Thus, the total pricing is $26,400 for 6 months.

    If you are not satisfied with the services we have provided, we will issue a 50% refund at the end of the 6 months. However, we are very confident in our ability to generate tangible results that will lead to increased media attention, increased fundraising numbers and most significantly, a real debate on the redefinition issue.


    If 440 people donated $10 per month for 6 months (a total of $60) we would achieve our goal. I believe this is an amount that would be affordable for many people.

    Please donate today! https://meadvocacy.nationbuilder.com/donatepr
    Last edited: Nov 22, 2014
    catly likes this.

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