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=0 Pages 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
Over the weekend, the NIH released an offensive flyer regarding the upcoming December 9-10 "Pathways to Prevention Workshop for ME/CFS". A group of ME patients on Facebook came up with their own "corrected" version of the flyer. Thanks to Laura Vitale for the great artwork. Please share!
Here is the full proposal sent to us by Crowds On Demand, the PR firm we intend to hire to help us with a National PR Campaign for ME. It provides additional information which you should find helpful in envisioning what a 6 month media campaign will look like: Crowds On Demand Public Relations Campaign for ME Advocacy October 24, 2014 Enclosed: Introduction to Crowds on Demand (Page 2) Campaign Details (Page 3) Case Studies (Page 4-5) Pricing Information (Page 6) Introduction 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: Securing Media Attention. In particular, I will target the following: Morning shows (Good Morning America, The Early Show, etc). Emphasize the human interest story element. Also emphasize the struggle of patients Public Radio (NPR, etc). Emphasize the need for a real substantive debate on redefining diseases Conservative Media (Fox News, Breitbart, etc). Emphasize the NIH taking away patient autonomy Liberal Media (MSNBC, Huffington Post). Emphasize the fact that low income patients are suffering from these cost cutting measures Healthcare Publications. Emphasize that patients are unhappy with decisions made in Washington, D.C and their desire to have more autonomy with their care Conducting Demonstrations featuring demonstrators (and attracting media). In particular, in these locations: Outside the NIH redefinition conference Outside Capitol Hill At various medical conferences throughout the country Swaying Policymakers We will meet and arrange meetings with influential elected officials 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 York City. 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 held in 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. ---------------------- 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
If you're not familiar with Karina Hansen, she is the young lady in Denmark who was abducted and taken to a pysch hospital because she has ME/CFS. She hasn't been able to see her parents for at least a year and a half. If you missed sending a physical birthday card to Karina for November 7, you can still sign this eCard. The card will go to her mother, as Karina is being blocked from receiving cards herself. http://www.groupcard.com/s/E5VNSbN2s_H&ec=1kqLwnKqilV You can keep up with what's going on with Karina here: https://www.facebook.com/JusticeForKarinaHansen?ref=br_tf
Use our easy One Click app to tell Sylvia Burwell, Secretary of the Department of Health and Human Services to stop the P2P Workshop for ME/CFS. The outcome of workshop will negatively affect ME patients for decades to come. You may edit the letter to personalize it. Expires December 15, 2014, so act now! If you can't see the letter, click on the title of this post to get to the full blog post. After you send the letter, please share it widely on message boards, social media and email. We have found out that HHS is monitoring our online posts and the media, so make HHS sweat by sharing, liking and commenting! Continue reading
As many ME patients also have Lyme or suspect they have Lyme, but can't get a diagnosis, we feel this will be of interest to you. The current two-tier Lyme testing is actually designed not to find Lyme. A Facebook group called CALL TO ACTION! CDC: NO MORE TIERS! has been created to address this issue with the CDC. Join the group here:https://www.facebook.com/groups/cdcnomoretiers/ to learn about this issue and how you can help.
Karina Hansen is another European child with ME who has been locked away against her will. She has been locked away since she was 24 years old. Karina will be 26 on November 7th. The following information has been reposted from the ME Global Chronicle. It is Karina Hansen's birthday on November 7th. She has been moved from the hospital in Hammel and is now being held here: Tagdækkervej 10, 8450 Hammel, in a home for people with brain damage! No one knows why… Karina's parents are still not allowed to visit her and are kept out of her ‘case’… and Karina herself still has a guard, who is not very talkative or helpful. We all dearly hope that she has not been injured by the treatment she has had in the Hammel Neurocenter. I hope you will all send Karina a card for her birthday. A lot of cards will show that she is NOT forgotten, and that she will never be forgotten. You can send a card to Karina at the hospital at the following address. It will likely not reach Karina, but it will send a message to the hospital that we are watching them: Karina HansenTagdækkervej 108450 HammelDenmark Then send another card to Karina's parents at this address: Per og Ketty HansenKløvermarken 87500 Holstebro, Denmark Karina's parents will try to give all the cards they get from you to Karina on the day of her birthday. So please show Karina Hansen and her parents that they are not forgotten, by sending cards for Karina on her birthday on the 7th November. Editor's note - to get updates regarding Karina and her case, sign up for the Karina Hansen Facebook page:https://www.facebook.com/JusticeForKarinaHansen
This has been reposted from the ME Global Chronicle. Joanne – Now Almost A Year In Hospital Against Her Will In November it will be a year that Joanne, the 14 year old girl with severe ME, is incarcerated in a German hospital against her own and her mother’s will. (Read about her fate in the former issues of The Global Chronicle.) The Child Protection officers together with her father obtained a respective court decision to forcibly admit her in a neuropaediatric ward in November 2013, and so far none of our combined attempts to get her free or to at least stop the detrimental “treatment” approaches of the hospital doctors and therapists have born any fruit. Mother has lost custody in February this year because she tried to protect her daughter from the “activation programme” and the resulting deterioration,and she will most probably never get back her parental rights. (Dr.) Nigel Speight unremittingly supports Joanne’s mother and tries to give advice and influence the doctors and other institutions involved, among them the ethics committee of the hospital whose job would have been to assess the constant violation of Joanne’s human rights and her explicit refusal of all the “activation therapies” they enforce on her. Continue reading
As many ME patients also have chronic Lyme, we feel that this information will be of interest to the ME community. In concurrence with ID Week (Infectious Disease Conference Oct. 8-12, 2014, Philadelphia, PA, USA), Lyme protesters will be holding a candlelight vigil in honor of those who have died from Lyme disease, Friday, Oct. 10, 8:00pm at the downtown Marriott. There will also be a protest Saturday October 11, from 8:00am to 3:00pm at the Philadelphia Convention Center (where the ID Week conference will be taking place). The protest will bring attention to the harm and discrimination caused to Lyme patients by the establishment's current definition and practices and promote patients' rights and compassionate care.