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
VIA Justin Reilly (thank you!)"Abuse is widely and systematically carried out by the medical profession, the courts and federal and state governments against people with 'contested illnesses' such as mitochondrial disease, ME'cfs', Lyme, GWI, Fibro, etc.By far the biggest reason is money, chiefly for the purpose of saving insurers- insurance companies and federal governments, particularly the US and UK governments- from having to pay out the massive short term liabilities to which they would be subjected if they acknowledged these were severe organic diseases. The ABUSE MUST STOP NOW!IF YOU DON'T CARE BECAUSE YOU ARE HEALTHY, let me tell you that these are extremely disabling, often deadly disease and that combined, these diseases are exceedingly common. CDC itself estimates there are 300,000 new cases of Lyme in the US every year and only 30,000 of them are diagnosed; CDC estimates 4 Million cases of Fibromyalgia in the US; CDC estimates 1 Million cases of ME 'cfs' in the US and on and on. THE NEXT VICTIM COULD VERY WELL BE YOU OR YOUR CHILDREN!Take action now by supporting "Cure the CDC": like this page and share the posts widely! Thank you!"#CureTheCDChttps://www.facebook.com/REAvsCDC
CFSAC Written/Public Comment Eileen Holderman June 17, 2014(Note: Below is my written comment which contains variations/edits from my public comment because HHS imposed severe time restrictions on speakers during the CFSAC Meeting) Good morning. My name is Eileen Holderman - I'm an advocate for ME, GWI, and other neuroimmune diseases. Welcome to the new Committee Members, especially the new Patient Advocate. I wish all of you the very best going forward. Sometimes it's important to look back to see what stands in the way of moving forward. For the past 4 years, I served as the Patient Advocate on the CFS Advisory Committee; was Chair of 2 Subcommittees; and was a member of the Leadership Committee. The Leadership Committee helps to set agenda for CFSAC Meetings. About 2 years ago, we managed to get the critical issue of case definition on the agenda. After, in October, 2012, CFSAC made a recommendation to convene a workshop using only ME/CFS experts (researchers, clinicians, advocates, and patients) to reach a consensus on a research and clinical case definition starting with the Canadian Consensus Criteria (CCC). Thereafter, in Subcommittee Teleconferences, HHS began to hijack CFSAC's recommendation and impose their will. Committee Members objected to all the changes HHS tried to make to our recommendation. In my Subcommittee for Education, Patient Care and Quality of Life, HHS began tampering with our recommendation which led to conflict. In Jordan Dimitrakoff's Subcommittee for Research, which I attended as a guest, similar contention arose when Committee Members sought information about the NIH's Evidence-based Methodology Workshop (EbMW), now named the Pathway to Prevention (P2P). Many of us asked why another HHS initiative, that in part was to address case definition, was needed - because we just made a recommendation to convene a workshop to address case definition. We expressed concerns about the NIH P2P such as: costs, timelines, the use of non-experts in ME/CFS, no patient input, and no transparency. Soon after, Jordan Dimitrakoff permanently shut down the Research Subcommittee. Next, 3 CFSAC Members received phone calls from the Designated Federal Official (DFO), who used intimidation tactics and the threat of eviction from the Committee for expressing our views - the very thing we were called upon to do when we took the official pledge to serve. Then I was removed from the Leadership Committee, which resulted in no patient input into the CFSAC agenda for the past year and a half. During the May, 2013 CFSAC Meeting, I publicly disclosed that I and 2 fellow Committee Members were threatened. HHS did not take the allegations seriously - but advocates did. Advocates sent a letter to General Counsel, with over 40 signatures from independent advocates and advocacy organizations, asking for an investigation. Months later, Dr. Howard Koh, Assistant Secretary of Health, sent a letter in reply which the ME community viewed as completely dismissive. While I don't wish to speak about the personal effects of the threats, I want to talk about it as it applies to how HHS continually dismisses and obstructs the good work and authority of CFSAC. HHS's mission to silence Committee Members is indicative of how they have operated in secret, with an iron will, and with disdain toward the ME community. Instead of implementing CFSAC's recommendation for a case definition workshop with ME/CFS experts, HHS embarked on an aggressive campaign to redefine ME/CFS and enlisted the aid of NIH, CDC, HRSA, ARHQ, and The Institute of Medicine (IOM). HHS did this in spite of mass opposition to their 3 initiatives (IOM, P2P, CDC Multi-site Clinical Study) from the ME community such as: * 50 ME/CFS researchers and clinicians signed the Expert's Letter urging HHS to refrain from reaching out to groups such as the IOM to redefine ME/CFS using non-experts, because they reached a consensus on a research and clinical case definition called the Canadian Consensus Criteria (CCC). The experts also urged HHS to adopt the CCC in all Government agencies.* Over 170 advocates wrote a similar letter as the experts to HHS.* Nearly 10,000 patients, caregivers, advocates, and medical professionals signed 2 petitions stating objections to the HHS/IOM Contract and urged HHS to adopt the CCC.* Advocates appealed to Congress with calls and meetings on Capitol Hill.* An advocate-attorney filed a law suit in US District Court against HHS and NIH for non-compliance with a FOIA request pertaining to the IOM Contract. That same attorney filed legal complaints with the Office of the Inspector General for IOM's organizational conflict of interest and related legal issues.* Attorney-advocates filed FOIA requests pertaining to the HHS/IOM Contract.* Advocates participated in radio, TV, and online interviews with the press about HHS's plans to redefine and rename ME/CFS.* Advocates demonstrated in San Francisco and Washington, DC to protest the HHS/IOM Contract.* Advocates from the ME/CFS community collaborated with advocates from the Gulf War Illness (GWI) community because of similar concerns with the VA/IOM reports.* Advocates submitted a position paper, wrote articles, blogs, and opinion posts on Internet forums to protest the HHS/IOM Contract. HHS has not listened to the 50 ME/CFS expert researchers and clinicians who sent the letter to Secretary Sebelius; nor have they listened to the advocates, patients, caregivers, or stakeholders. HHS's mission is to control the message - they decide who can speak and who is silenced, who is on the Advisory Committee and who is off the Advisory Committee, what information they will divulge and what information they will hide. HHS's mission is to redefine ME/CFS with yet another broad, erroneous case definition, which will include countless people who do not have ME/CFS, so they can recommend CBT, GET, and anti-depressants, and so they can bury the scientific, biomedical evidence of ME/CFS. HHS will then not have to fund research into this biomedical disease or fund clinical trials or pay for long term disability and other Government entitlements. Once HHS develops their new definition and name for this disabling, neuroimmune disease, they will embark on their next phase of (mis)educating the medical and scientific communities, the press, and the general public. HHS is acting in bad faith toward the ME community. Last December, during a CFSAC "webinar," I thanked many people in the ME community, especially my fellow Committee Members, the 50 ME/CFS experts, and the advocates. So, I will end with a special acknowledgement of one advocate, Jeannette Burmeister, whose intelligence, resilience, and courage inspires me and other advocates in our movement to help the 17 million worldwide suffering from ME. Thank you.
Vote in the Direct Debit Big Break for Charity contest to raise money for June's ME charity - ME Research UK. (This is a different charity than the one for May.) This is a great opportunity to help biomedical ME research just by voting wherever you are in the world. The charity with the most votes wins the £2000 prize. In order to vote online you will need to be logged in with a valid Facebook, Twitter or Google account. When you vote, Direct Debit will use your email address and IP address for the purpose of ensuring your vote is valid and to prevent multiple votes being logged. Personal information will not be used for any other reason.https://www.directdebit.co.uk/DirectDebitPromotions/BigBreak2014/Pages/CauseDetail.aspx?CauseId=727 Or you can vote via text if you're in the UK - instructions are included at the same page. ME Research UK is currently in 1st place with over 600 votes, but it's still early in the month, and anything can happen - the contest ends June 30, 2014, so act now!
Vote in the Direct Debit Big Break to raise money for the ME Association. This is a great opportunity to help biomedical ME research just by voting wherever you are in the world. The charity with the most votes wins the £2000 prize. In order to vote online you will need to be logged in with a valid Facebook, Twitter or Google account. When you vote, Direct Debit will use your email address and IP address for the purpose of ensuring your vote is valid and to prevent multiple votes being logged. Personal information will not be used for any other reason. https://www.directdebit.co.uk/DirectDebitPromotions/BigBreak2014/Pages/CauseDetail.aspx?CauseId=381 Or you can vote via text message from your cellphone/mobile but this particular method is only available for UK residents. Text and other voting involves clicking on your chosen cause's logo. The ME Association’s logo is purple.x https://www.directdebit.co.uk/DirectDebitPromotions/BigBreak2014/Charity/VoteForAGoodCause/Pages/VoteForAGoodCause.aspx The ME Association is currently in 6th place with only a few thousand votes needed to be in 1st place - the contest ends May 31, 2014, so act now!