Thanks to everybody who has already donated to the Campaign, we were able to hire the PR firm, Crowds on Demand. They started work January 1, 2015. As we’re just getting started, there are many exciting things in the works, but nothing concrete that I can link to just yet. There are several smaller media outlets lined up to interview our spokespeople. We have four spokespeople in total (Mindy Kitei, Charlotte Von Salis, Anne Keith and Tracey Temple Smith). A representative from the PR firm was present at the Congressional Inauguration on our behalf on January 6, 2015, looking for new Congresspersons who might become a champion for ME. We did one-person protests at the NIH and CDC in conjunction with that. We also have an upcoming 60-second radio ad, which will air on Midwestern health podcasts and on various FM/AM radio stations throughout the country.  While we have the first month’s fees paid for, donations have dropped off due to the holidays, and we are behind for February. We need an additional $3000, for a total of $10,000, by January 21. In addition, there is a $1000 matching challenge grant running until January 21, midnight EST. Anything donated, up to a total of $1000, will be doubled. The IOM report will be coming out February 10.  The P2P is also wrapping up and may be completed in late January or early February. Continued funding is crucial to combat these two redefinitions. Please donate! https://meadvocacy.nationbuilder.com/donatepr  

Whether you have sent comments to the P2P and/or CFSAC or you're boycotting the whole process, we need to collect all comments opposing the P2P, so that they can easily be shown to our Congressional representatives as further proof of our opposition. Simply post (or repost) your comments opposing the P2P in the Comments section below this article! We are also working on a petition opposing the P2P - I will post a link as soon as it's ready.

FOR IMMEDIATE RELEASE   Disabled Americans Protest US National Institutes of Health's Pathways to Prevention (P2P) Workshop Demonstrations at NIH in Bethesda, MD Bethesda, MD, December 8, 2014 -- On December 10, 2014, disabled Americans will protest to voice their anger over continued mistreatment by the U.S. National Institutes of Health (NIH) and Department of Health and Human Services (HHS). The demonstration is slated for this location and time: in front of the NIH Gateway Center on South Drive, Bethesda, MD, 7:30 a.m. – 2:30 p.m. Protest organizers Tom and Christine Jarrett, of Westfield, IN, will be taking a stand for patients who have ME (myalgic encephalomyelitis). In doing so, he will be calling attention to the plight of one million disabled Americans suffering with ME and their neglect and mistreatment by their government. The protesting patients and their supporters demand a halt to the ill conceived disease redefinition report produced by the NIH's P2P meeting, which they think will set back their cause by decades. They are also demanding the immediate adoption of the Canadian Consensus Criteria (CCC) to define the disease and the cancellation of the IOM (Institute of Medicine) contract to redefine ME. Fifty experts in the disease have written to the Secretary of HHS that they have adopted the CCC, subject to updates (including the ME International Consensus Criteria). Thousands of advocates have supported these experts with emails, blog posts, tweets, and other means for months. For nearly 30 years, people with the debilitating disease, ME, often referred to in the US by the disparaging name of “chronic fatigue syndrome”, have suffered the ravages of a neuro-immune disease that has left many confined to their beds or homes in pain and dysfunction. But since the outbreak of the disease in Incline Village, Nevada in the mid-1980s, nearly nothing has been done by the federal government to support research into the disease. A scant 5 million dollars per year has been allocated for research into a disease that affects more than 1 million Americans and which costs this country more than $17 billion annually in lost productivity and medical costs. So little has been spent on educating physicians about the disease that fewer than 15% of doctors can explain what it is. ME patient Tom Jarrett is among those who have lost their livelihoods to this disease.  But as a former estate and certified financial planner, he has not lost his fighting spirit. “NIH is not truly listening to what the patients say.  Internal NIH emails obtained through a FOIA lawsuit stating ‘File all these responses. No need to answer them directly’ prove this claim. They have a pre-set agenda for this P2P workshop and the corresponding IOM redefinition effort, and they intend to carry it out regardless of what patients and their doctors say. We are here to protest these redefinition projects that waste taxpayer money and harm patients by moving research backward in time, away from neuro-immune biomarkers, and toward the generic symptom of fatigue,” he says. "There is so much at stake here for my family and for the ME community," Tom says. "Will the P2P meeting and resulting report result in decades more of neglect, while my sons grow up without a healthy father, and patients with ME suffer and die, saddled with a vague disease definition, a trivializing name, and no hope of a cure? I don’t think so, because we patients will keep fighting until the NIH stops and truly listens to our voices."      

I’m not sure if I like the idea of using hired demonstrators or actors. Isn’t that phony? Won’t we be ridiculed? For normal healthy people, the idea of hiring demonstrators is somewhat controversial. Politicians and other groups actually do this all the time, but it's done secretly. It’s called "astroturfing" which is the opposite of "grassroots" - so called fake advocacy. This is not our situation. We are very much grassroots and very much not healthy and not able to do our own demonstrations, or we would have taken to the streets decades ago. We have been put in a position where we have been forced to do this to get our message out.  The actors will represent patients who are too sick to demonstrate themselves.If we frame it that way, it can be turned into a positive - something that will gain us sympathy from the American public. Also we're going to use our own knowledgeable spokespeople to represent us at demonstrations, and when talking to the media. So it's not all actors; there should always be at least one patient, caregiver or someone close to us representing us. Here is some additional information provided by Adam Swart (CEO of Crowds On Demand) regarding the use of hired actors for demonstrations:"First off, not all of our events involve paid protesters. Sometimes, clients prefer that we act as an organizer and facilitator of a protest. One option we do frequently is to provide a few of our own protesters to act as group leaders for the demonstration and then organize other interested groups to act as the bulk of the group. So then, we're not really providing a fake protest, rather, we are helping to organize things." I have already gotten an offer from a similar disease group to provide volunteer demonstrators to help us out. How much are the additional expenses (payment of actors and other expenses)? That's all included in the firm’s fee. There are no additional expenses. Many of us have been involved in doing M.E. advocacy work for years.  What is your background?  Can you provide us with references indicating that you have been successful in other advocacy projects?  Who is involved with this project? We are a grassroots group of ME patients, patient advocates and volunteers. Between us, we have decades of a variety of relevant skills and ME advocacy experience. ME Advocacy.org has partnered with May12.org, an existing 501(c)3 not for profit corporation, so we could get up and running quickly. All donations are tax deductible. For more info, see the About page: http://www.meadvocacy.org/about Is this the Crowds On Demand and Adam Swart that you are talking about:http://crowdsondemand.com/ https://www.facebook.com/crowdsondemand https://www.linkedin.com/pub/adam-swart/1a/797/b31   Yes, That is correct.   Can you provide examples of successful advocacy campaigns done by Crowds on Demand which used hired actors?  Please see the full proposal, which has five examples of successful campaigns. http://www.meadvocacy.org/read_the_full_pr_campaign_proposal   How much did the example clients of Crowds on Demand pay the public relations firm?  Adam Swart, CEO of Crowds On Demand, says "I unfortunately cannot share info on how much other clients paid, however, I can say that a $10,000 retainer is typical for this type of service and that we have offered discounts to non profit organizations in the past." Patients have made various attempts at media publicity over the years, and none of them were successful. Why would you expect this to be any different? These were one-off promotions, which while admirable, are not the same as a sustained campaign done by a professional public relations firm. If we did demonstrations like ACT UP did for AIDS, who would cover the cost of the bail for demonstrators that got arrested? While ACT UP, in many ways serves as a good model for getting media and policy maker attention, we’re not going to get violent. Whatever we do would be peaceful and legal. Nobody would get arrested. No matter what anyone spends on something like this, I don’t think those government people are going to listen. We can’t know that for sure unless we actually try. Nothing like this has ever been tried like this before for our disease, even though this has been a successful model for other diseases. The Freedom of Information Act (FOIA) documents received by Jeannette Burmeister indicate that the government is sensitive to what is said in the media. We’ll also be talking to policy makers in Congress who control the Department of Health and Human Services. These are the “bosses” of HHS. Other groups, such as AIDS, have been successful with a similar approach, so why not us? What if the government mocks us; they don’t care about ill patients. It’s all about the money for them. Adam Swart (CEO of Crowds On Demand) thinks their likely response will be to defend the redefinitions as something that's needed and necessary. Then we will respond to that with our message about how terrible these definitions are and how the Canadian Consensus Criteria, International Consensus Criteria or other definition made by ME experts only needs to be adopted instead. If they start mud-slinging, they will look very bad as they are bullying the disabled. We can use that against them to gain sympathy for us. Do you know how the donations will be allocated/spent if the $26,000+ needed to hire this PR firm is not met? Crowds On Demand has generously agreed to work with us at a reduced scale if we can't get the campaign fully funded. So our options would be to hire them at a reduced scale or refund people's money. We wouldn't take it and spend it on something people hadn't agreed to. I've also often wished we had an "anti-defamation league" to respond to so many mischaracterizations in the media, on government/medical sites, even the ridiculous "sleepy executive nodding off at desk" photos that often accompany articles on ME/CFS. Providing proper ME photos on the stock photo sites (where journalists  and designers go looking for photos) is another project I hope I can get to. An article about your “PR” campaign appeared on the Phoenix Rising Forum, sometimes abbreviated as “PR”. Does this mean the money would go to Phoenix Rising? I don’t want to donate to them. A "PR" campaign means "public relations" campaign and doesn't have anything to do with Phoenix Rising (other than they were kind enough to give us some promotion). The money donated will go to ME Advocacy.org, which is linked to in the article. It will not go to Phoenix Rising. You can find out more about ME Advocacy.org on their about page: http://www.meadvocacy.org/about I’ve heard the NIH is planning their own media campaign for when the P2P comes out. What's the time frame for that? The Freedom of Information Act documents received by Jeannette Burmeister state that the NIH is going to be doing a media campaign to promote the results of the P2P.https://www.dropbox.com/s/rwhll0ybmladpy4/FOIA_P2P_Batch#1a.pdf?dl=0Pages 106-107 NIH Media Coverage of the P2P results, starting in mid-February 2015: Mainstream Media Blogs Trade Publications Twitter We need to be ready to counter it with our own media campaign. Ideally, we would like to start in January, so we can start talking to new Senators and Representatives and possibly find a champion for ME. This was something that Llewellyn King talked about as a goal for lobbying in Congress. With a champion, our chances of getting increases in research funding are much greater.   https://www.youtube.com/watch?v=IC1_O67xgis&list=UUxrPmgVwJ7-gLqZJK_qLeFg We can also get our message out there first before the P2P even comes out. So that means we need to be funded by the end of December 2014. Note: at the December CFSAC meeting it sounded like the P2P report may be ready as early as late January. I live outside the US. Why should I donate to this American campaign? Like it or not, whatever happens in the US will have worldwide repercussions. If the Americans can get a proper definition adopted for ME, this will provide a model for other countries to follow. This should improve the situation for ME patients worldwide. Our donation app accepts international payments. https://meadvocacy.nationbuilder.com/donatepr I live outside the US. I hesitate to donate to an American charity. Is this the only way I can help get the Canadian Consensus Criteria adopted? Short answer: yes. The only other major initiative we know of is Jeannette Burmeister’s legal actions. She is not accepting donations. I agree that this is a good plan forward. Before contributing I would like to know how "Crowds on Demand" can guarantee the major media outlets will discuss and investigate this disease without being edited into more mental/behavioral health crosshairs," yea, so I get tired too", or other damaging and misleading all's well with the world type of conversations. Reply from Adam Swart, CEO of Crowds On Demand – “When we start the campaign, we will formulate a media strategy that emphasizes the disease as a debilitating physical rather than mental condition. When we take it to the major media outlets, they will likely solicit the NIH and others for comment. It’s impossible to guarantee anything when it comes to media coverage. The media often does come up with its own narratives. However, what I can say is that the perspective of the patients that we have will be extremely powerful. That is, if a doctor from the NIH is saying this is psychological while a patient is saying they are suffering, the viewers and the American public are going to believe the patient.” If we spend this money on a Professional PR Firm, I am sure the Government, Health Care Professionals Lobby Groups, Education Lobby Groups and all the Fantasy Healers are going to out spend and counter any hope a fateful message those of us who are more severely ill have been reduced to. How are the seriously ill ME Patients whose lives are never going to be restored going to be portrayed in the media when every time I see a media interview it is with a perky somebody who claims they had this disease, and are healed and back to running marathons in their lives again. If a positive attitude and some elimination diet were the answer, we would not be tragically ill. So, how does this PR Firm plan to approach this trauma?" Reply from Adam Swart, CEO of Crowds On Demand - “Like I mentioned, our most powerful weapon is the fact that we have all of you who can testify to the fact that this disease is truly a physical condition and that however much you would like to be able to be cured and run marathons/etc, that is just not possible. It will be obvious to the media that you don’t want to be in this position. Anecdotes about patients who have tried the exercise/diet/attitude approach and either died or gotten worse will be helpful in this regard. Most importantly though, once the NIH and company starts hitting back, that’s where we will know we would have made an impact! If they’re responding and engaging in a debate with us, that means that the debate is really happening and we are getting our message out there. It means the organization will be able to dramatically increase fundraising and get taken seriously by the NIH and appropriate policymakers.”   Is MEadvocacy.org connected to PANDORA or the CAA (now called SCMI)? There is absolutely no connection with PANDORA or CAA. We are a group of independent ME patient advocates, very much a grassroots operation. We have a fiscal sponsor, May12.org, and they are a 501(c)(3) not-for-profit corporation. We borrow our 501(c)(3) status from them. We went with having a fiscal sponsor, so we could get up and running quickly and with a minimum of hassle. So to make this absolutely clear, neither May12.org nor MEadvocacy.org has any connection with PANDORA or CAA/SCMI.   Are May12.org and/or MEadvocacy.org tax exempt? Yes. As May12.org is a newer organization, with a small budget, it is currently under automatic exemption. Groups under automatic exemption do not show up in the IRS tax exemption database. As the organization has grown, we have filed for regular exemption in a timely manner. However, it still takes some time (up to 6 months) to process the application and show up in the database. All donations are and will be tax deductible retroactive to the formation of May12.org (2012). Anyone who says anything different is not knowledgeable of IRS regulations.    --------------------------------- Questions or Concerns? Make a post below to get a discussion going. Please Donate Please donate today! If 440 people donated $10 a month for 6 months (a total of $60) we would reach our goal. We feel that this is an affordable amount for many people. https://meadvocacy.nationbuilder.com/donatepr