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. Continue reading
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 CommentEileen HoldermanJune 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). Continue reading
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!
It's not too late! Sign up for the Thunderclap now, and on May 5 at 9am, tens of thousands of messages will automatically be sent via social media, announcing our boycott and protest of the IOM open meeting for the redefinition of ME. Click here for info on how to participate.
This is a petition to get the Canadian Consensus Criteria definition for ME adopted in Northern Ireland. Anyone can sign - you don't have to be from Northern Ireland. https://secure.avaaz.org/en/petition/Minister_Edwin_Poots_Fully_Adopt_CCC_for_ME_in_NIreland/?pv=2 This petition expires May 31, 2104, so act now!