To All My Fellow Canaries, One of the best ways for multiple voices to amplify a message is by taking the message out into public view using our “outside” voices. It sure feels to me like the ME patient community is long overdue in staging a public demonstration to shine a spotlight on the U.S. Dept. of Health and Human Services (HHS) contract with the Institute of Medicine (IOM), as well as addressing the pitiful amount of funding and resources that the U.S. Government has allocated to this illness. If you feel the same way as I do and you are interested in joining me in San Francisco on December 9th and/or in Washington D.C. on December 10th for a series of demonstrations to very publicly raise your concerns with the IOM/HHS contract and funding for this illness. Then I welcome you to join me in together raising our voices in support of ME (CFS) patients throughout the world. I am handling the logistical side of the planning of these demonstrations, which includes the location in downtown S.F. of the Regional Office of HHS, the headquarters of HHS located in Washington D.C., and the U.S. State Capitol and White House, also located in Washington D.C. I will have props to assist us in getting out our message, as well as alerting media outlets of these planned demonstrations. On December 10th, I will also be hand delivering the online IOM/HHS petition (on behalf of Patricia C.) to HHS Secretary Kathleen Sebelius, select members of Congress and President Obama at the White House. See, https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/ I will be in S.F. in front of the HHS S.F. office on Monday, December 9, 2013 at 10:00 am. The following day (Tuesday, Dec. 10th) I will be in Washington D.C. at HHS headquarters at 9:00 am. At approximately10:00 am, I will move a short distance up the street to the nation’s Capitol. Finally at approximately 11:00 am I will move to the White House located approximately 12 blocks from Capitol on Pennsylvania Avenue. I will try to capture the events on both of these days in photographs and on video (subject to the number of extra pairs of hands available on either of those days) to share these activities with patients (and others) who want to support these demonstrations, but are unable to attend in person. For more details about the demonstrations scheduled for December 9th and 10th, please contact me through this thread on the Phoenix Rising Forum, or the posting I have made on the MECFS Forum, or directly through my e-mail address at WallaceAlvinCleaver@gmail.com. In addition to the HHS's headquarters in Washington D.C., there are 10 other regional offices spread across the U.S. in the following cities: 1) Atlanta, 2) Boston, 3) New York, 4) Philadelphia, 5) Chicago, 6) Kansas City, 7) Denver, 8) Dallas, 9) San Francisco and 10) Seattle. See, http://www.hhs.gov/about/regions/ and http://www.hhs.gov/about/hhh.html. If you are interested in holding a similar demonstration at one of these locations, I would be glad to share with you the steps required to set up such a demonstration.. No matter what size of a group shows up to demonstrate, even a small group can make an impact on a wider audience if their message is delivered with clarity and passion. We need to be able to find ways to interest the media into covering our story, so we can leverage the reach of their audience to our advantage. As well as using social media to spread our message even if many patients can only dream about participating in life outside the confines of their home/bed. We already have seen how this type of a demonstration can bring much needed awareness of this illness to mainstream media outlets as demonstrated by patient advocate Rivka Solomon in the 2011 demonstrations she planned in both S.F. and Washington D.C. These demonstrations helped bring national and international media attention to the plight of patients with this illness. By shining such a bright public light on the government's track record of doing very little to adequately investigate, study, research, allocate funds to support those patients and families who suffer the consequences from this illness. I acknowledge that this illness steals so much life out of patients (and their families) that it can seem overwhelming to consider extending even more energy to speak up about this illness. However, I also know that there is great satisfaction in knowing that whatever you do to advocate to move treatment and understanding of this illness forward does make a difference. Without the advocacy of those who have come before us and those who are in the fight right now, we would be completely lost in our efforts to push for change. So please consider doing something to honor yourself and those just like you who are suffering and join in the fight for this illness. I promise if you show up to participate in one of these demonstrations, the work you will be doing will feel empowering and exhilarating and you just might make a few new friends in the process. Here are the two pressing issues that I plan to highlight at the both the S.F. and Washington D.C. demonstrations. 1) The HHS's contract with the IOM, which has with the potential to redefine this illness and cripple 30+ years of knowledge, research and resources desperately needed to treat and solve this illness. The HHS's secretive, hurried and ill-conceived contract with the IOM, I believe is a direct attack on patients, their families, clinicians and scientists who are living with this illness and/or have knowledge and expertise to help us with this illness. See, 1) http://forums.phoenixrising.me/inde...vents-of-the-hhs-contract-with-the-iom.25933/ and 2) http://www.mecfsforums.com/index.php/topic,17973.0.html and 3) http://www.mecfsforums.com/index.php/topic,17972.0.html and 4) http://www.mecfsforums.com/index.php/topic,18046.0.html and 5) http://thoughtsaboutme.com/2013/10/...hting-the-iom-contract-is-a-moral-imperative/ and 6) http://cfstreatment.blogspot.com/2013/09/what.html and 7) http://cfstreatment.blogspot.com/2013/10/clearing-air-or-breaking-wind-comment.html, and 8) http://cfstreatment.blogspot.com/2013/10/misconceptions-about-physicians-letter.html and 9) additional references appearing on blogs such as “Thoughts About Me” at http://thoughtsaboutme.com/ and “Occupy CFS” at http://www.occupycfs.com/, as well as the subforums created specifically for this topic on the Phoenix Rising Forum at http://forums.phoenixrising.me/index.php?forums/institute-of-medicine-iom-government-contract.114/ 2) Our government’s limited funding and allocation of resources notwithstanding the conservative estimate of 17 million people worldwide who suffer from this illness. The monetary cost of this illness is conservatively estimated to be in excess of one billion dollars. Funding for this illness during the last 25+ years has averaged between $3,000,000 to $6,000,000 per year. In contrast, male pattern baldness receives funding of approximately $16 million per year. Illnesses such as multiple sclerosis and HIV, which have a number of similar symptoms to ME(CFS) receives funding from the U.S. government in amounts 10 to 100 times more than what is allocated to ME(CFS). Dr. Ian Lipkin (a noted world class virus hunter - virologist) has estimated that he needs approximately $10 million to just continue the research he is conducting in search of potential pathogens that may have an important relationship to understanding the cause and treatment for this illness. Other ME researchers/clinicians like Dr. Andreas Kogelnik, Dr. Jose Montoya, Dr. Nancy Klimas and Dr. Dan Peterson have also outlined a minimum amount of funding that they believe is necessary to move the understanding of this illness on to the next level. (See, Dr. Klimas in the trailer to the “Canary in a Coal Mine” documentary at and , and the proposed research plan of the clinicians and researchers who are members of OMNI-Merit group. See, http://openmedicineinstitute.org/research-initiatives/mecfs-merit/. I am just one patient who is trying to stand up and be heard, won't you please consider joining me in making your voice be heard as well. I am not willing to give up and together I do believe we can make a difference. http://youtu.be/0d87N9GIW2I This song is for every patient who needs a helping hand to hold onto to keep fighting and not give in. This song is dedicated to the memory of Tom Hennessy, who like so many before him fought fiercely to bring awareness to this illness until his own struggles became too much to bear. Unfortunately, many people suffering with this illness do understand the struggle Tom and others face and we are saddened that they left “…the stage in the middle of their song”. To all of the patients who are no longer with us, we promise to continue to let your/our song be heard. (See, memorial article written by Cort Johnson about Tom Hennessy at http://www.cortjohnson.org/blog/201...m-hennessy-fierce-advocate-memorial-tomorrow/ and the memorial wall of ME patients at http://www.ncf-net.org/memorial.htm). http://www.youtube.com/watch?v=j3_85GXsKqk I know that it can be scary to think about taking a stand when you are already going thru hell, but if we just keep moving forward together rather than alone, we can give the “devil” a run for his money and keep the fight going to solve this illness. http://youtu.be/FXL65Nd_O1o Come on stand up, sit up or even just raise your hand and be counted. Me and my friends thank you for considering hanging out with us. It should be one hell of a good time getting to use our “outside voices” and speak our own truth. I am hopeful that these people will give you the inspiration that it is far more effective to be heard than to rollover and pull the covers back over your head. http://youtube/SE1xO44FlME and http://youtu.be/Z2NaN_QNFUo. and for my fellow countrymen/women http://www.youtube.com/watch?v=0heL2Czeraw Very truly yours, Wally (A.K.A. - Susan Kreutzer) -Who am I? A ME Patient (also referred to in some circles as CFS, CNIED, Non HIV/AIDS, Post Viral Syndrome and/or Post Polio Syndrome.) I had a sudden onset of this illness 22 years ago, It took 19 years before I was diagnosed with ME(CFS, CNIED). I am currently disabled and unable to work. My prior occupation was an attorney at law. -Patient Advocacy. Somewhat limited due to the years it took me to get a diagnosis. For a very long time I fought the battle to find answers to my illness on my own. Since finding out that I don’t need to be alone in my quest to find answers to this illness and also never wanting another human being to ever feel as lost and alone as I did, I am stepping out of my comfort zone to let my voice be heard. Here are the ways that I have started to advocate for myself and other patients. -Demonstration participant in 2011 on behalf of ME/CFS patients at the U.S. Dept. of HHS Regional Office located in San Francisco, California. See, http://thoughtsaboutme.com/2011/06/...stration-at-hhs-san-francisco-on-may-25-2011/ -Provided Public Testimony About My Experiences With This Illness at the Spring 2012 CFSAC Meeting. Testimony begins at 35 minute mark and ends at the 40 minute mark at -Signed the patient advocates letter to Secretary Sebilius in support of the “experts” letter objecting to the contract entered into between HHS and the IOM. https://www.dropbox.com/s/3rewnlskfkfhmjz/Updated Signatures.pdf -On-line commenter on the online MECFS Forum and the Phoenix Rising Forum with occasional dabbling in other arenas where ME topics are discussed. See, http://www.mecfsforums.com/index.php and http://forums.phoenixrising.me/index.php -Telling the ME/CFS story to who ever’s ear I can corner either in person, by phone, by snail mail, e-mail or online (however I have still not conquered the world of Facebook and Twitter, but it is next up on the agenda for my cognitively challenged brain). -Participation in the online petition at (https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/) to object to the contract entered into between the HHS and IOM. -Planning M.E. demonstrations on both sides of the United States (San Francisco and Washington D.C.) scheduled for December 9th and 10th, 2013 as set forth in the post above.