Offensive NIH Flyer Worked Over By ME Patients

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!  

Read The Full PR Campaign Proposal - Get The Rest of the Story

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, 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.  

Send an eCard to Karina Hansen for Nov. 7

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. You can keep up with what's going on with Karina here:  

Tell Secretary Burwell To Stop The P2P!

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

Two Tier Lyme Testing Doesn't Work

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: to learn about this issue and how you can help.  

Send Karina Hansen a Birthday Card

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:

Joanne Locked Away Against Her Will

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

Lyme Vigil and Protest Oct 10-11, Philadelphia, PA, USA

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.    

Vote Daily to Win Money for Research - Aviva Community Fund

Canada's National ME/FM Action Network (famous for the Canadian Consensus Criteria) want to set up a biomedical research fund and want to win $100,000 to start it.Free money, my friends! Free research money and as ever, biomedical research helps us wherever we are in the world. You can vote from anywhere in the world. Voting for Round 1 starts September 29, 2014 and runs through October 13, 2014. It's daily voting and doesn't need Facebook. Go here and vote! Join this Facebook page to get a daily reminder to vote Let's help Canada win this one! It will help patients in every country! Thanks!

Join the "Stop The P2P" Saturday Tweetstorm

 Let’s Get Started With Twitter! Have you wanted to add your own voice to the Saturday night Tweetstorm to stop the P2P committee?  Have you been hesitant to join in because you don’t how or what to tweet?  Then this article is for you. First of all, you will need to set up your own personal twitter account.  Let’s do a little preparation beforehand.  In addition to your name (public), email and twitter password, you will need a public username or ‘handle,’ the wording which follows the symbol @.  You will have 15 characters for your username which can include spaces, and it can be changed at any time under “settings” in your account.  Once you enter your name, Twitter will offer a couple of suggestions for your username.  It’s your personal decision whether to go public or anonymous or both with your name and username.  Many users are quite creative. It will look like this:  “[email protected]”.   Let’s sign up for Twitter To find Twitter, type “twitter” into your search engine. Click on the site link to go to the Twitter website. Once you get to the site, Create an account by filling in your name, your email, password and username.  (See the discussion above.)         There are four more steps in the process.  Now you will choose some personal interests which Twitter will use to find examples of people or things you might want to follow.  Put a checkmark in the boxes next to your interests and click the continue button.         Based on your interests, Twitter will suggest a number of people/things you can ‘follow.’  In the upper right, click the “Follow 39 & Continue” button (the number will vary.)             Tweets by those that you follow will show in your twitter ‘stream.’  You can ‘unfollow’ them when your account is set up if you choose. You will then be asked to upload your email contacts.  If this makes you uncomfortable, you can choose to “skip this step” (lower right.)             Finally, your twitter page appears!  You can customize it by adding a profile picture (optional).  Use the search feature to find friends and contacts to follow, but first you must go to your email and confirm your Twitter account.  Notice the menu across the top.  You might want to click on these items and do a little exploring.  The Compose New Tweet box in the left column and the feather at the top right, both enable you to type and send a Tweet.         Let’s tweet! A good place to start, for those interested in the Tweetstorm, is to search for “Anne LiConti, founder of the StopP2P Tweetstorm.  Search for Anne by typing her name in the search option.  Her name will pop up.  Click on her name, and it will take you to her page.          Click on the Follow button (upper right) to follow her.         ­­­      Please follow Anne because she sends out notices ahead of time to alert twitterers about the Saturday night Tweetstorm (7:00pm EST or anytime so everyone can participate.)  To view the Tweetstorm tweets, search the hashtag “#StopP2P4ME.”  On the under “advocacy,” there is a thread devoted to the Tweetstorm which is available for public viewing.,20389.0.html?PHPSESSID=su1qvmuk8e4iuqvis37q10rjr4 On this thread are many tweets to copy and paste.  As Anne notes, “Re-tweets do NOT trend the hashtags – in order to trend the hashtags, we MUST copy/paste.”   Retweeting might be your comfort level when just starting out.  Then you might want to copy and paste.  Finally, with your newfound confidence, you won’t hesitate to compose and tweet your originals. Now you’re ready to Tweetstorm the P2P committee! ­­