"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 challenge the three redefinition projects, the IOM, the P2P and the CDC Multisite Study where they are weak or harmful to ME patients.
Secondly, we must demand that Myalgic Encephalomyelitis (ME) be officially recognized as its own disease. ME has a 60 year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969. ME already has an ICD-10-CM medical billing code (G93.3) ready and waiting, we need to use it.
Thirdly, we must demand that a single clear definition for diagnosis and research, which includes the hallmark symptom of post exertional relapse, be adopted as the official definition for M.E. Examples are the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC) or an even better definition with the CCC and/or ICC as starting points. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease.
Fourthly, as government funding for ME research has been trivial up to this point, we must demand that the government make available appropriate amounts of funds to study this devastating disease, similar to the amounts being spent on diseases such as Multiple Sclerosis, Autism, Lupus, Crohn’s Disease, Inflammatory Bowel Disease, Parkinson’s Disease and Alzheimer’s Disease.
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!
Here is the proposal from our intended PR firm, Crowds On Demand:
With a strong Public Relations campaign, the fight to get ME recognized 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 ME recognized.
Adam R. Swart