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!
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!
Those of us with ME have been following the very similar case of the Gulf War Illness renaming and redefinition effort by the IOM. In an amazing reversal, the IOM has recommended a return to the name Gulf War Illness and two existing case definitions. Furthermore, the IOM states that it is not equipped to create case definitions, and that project was a waste of money ($850,000). As our case is extremely similar, we are asking everyone to take action now - contact Congress and tell them, if the IOM can't define GWI, they need to also stop work on "ME/CFS" now. Follow this link for a sample letter and Congressional contact form: http://cfstreatment.blogspot.com/2014/03/making-hay-while-sun-shines.html This artlcle gives more background information and also more ways that you can protest: http://cfstreatment.blogspot.com/2014/03/iom-retracts-chronic-multi-symptom.html We also ask that you share this information widely, on message boards, social media and email.
This is a promotional trailer for M.E. Advocacy.org, explaining the current major issue facing ME patients and encouraging people to come to this site to advocate. If you like this video and this website, feel free to share this with all your social media.