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.
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!https://www.avivacommunityfund.org/ideas/acf19712 Join this Facebook page to get a daily reminder to vote https://www.facebook.com/events/436713819800556/ Let's help Canada win this one! It will help patients in every country! Thanks!
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: “name@username”. 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 mecfsforums.com under “advocacy,” there is a thread devoted to the Tweetstorm which is available for public viewing. http://www.mecfsforums.com/index.php/topic,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!
The United States District Court for the Northern District of California ruled that HHS and NIH (government) violated the Freedom of Information Act (FOIA) when they improperly withheld documents from Jeannette Burmeister in response to her FOIA request regarding HHS’s contract with the Institute of Medicine (IOM) for the study of diagnostic criteria for ME/CFS. The IOM contract was entered into with secrecy and amazing speed for a government action, despite patient, physician and researcher protest. These stakeholders are entitled to know what happened. Burmeister attempted to find out via an information request from the government, but didn't receive adequate information. In January 2014, she sued the government for this violation of her rights. Now with this decision, the court agrees that Burmeister's rights were violated and that the government has to provide the information requested within 60 days. Burmeister believes that holding HHS and NIH legally responsible for their violation of federal law is a tremendous victory for the ME/CFS patient population. You can read Jeannette Burmeister's original blog post here: http://thoughtsaboutme.com/2014/09/03/us-district-court-hhsnih-violated-federal-law-in-response-to-foia-request-for-iom-documents/
MEAdvocacy.org announces the release of a Youtube video documenting the May 12, 2014 demonstrations in San Francisco and Washington, D. C., titled "30 Years of Neglect". You can watch the video here: https://www.youtube.com/watch?v=SofiW7RGLHc Please share the video widely on email, message boards and social media.
Lyme Disease has been called the "great imitator". Many people have been diagnosed with ME and/or CFS only to find out years later they have Lyme. The same tactics used by the CDC against Lyme patients are also being used on ME patients and others, as pointed out by the Cure The CDC campaign. Therefore, no matter what disease you have, it's important to support Lyme initiatives such as this petition calling for a Congressional Investigation of the Centers for Disease Control (CDC), Infectious Disease Society of America (IDSA) and American Lyme Disease Foundation (ADLF). Click here to sign the petition: http://www.change.org/petitions/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf