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ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

Discussion in 'Upcoming ME/CFS Events' started by Wally, Nov 26, 2013.

  1. Wally

    Wally Senior Member

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    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.
     
    Last edited: Nov 26, 2013
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  2. Keela Too

    Keela Too Senior Member

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    This is amazing. I'm in N.Ireland so not much use for the days. However, I can share this info "out there" :) Everybody should be talking about this!!
     
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  3. Delia

    Delia Senior Member

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    There is a federal building near every US citizen: the US Post Office. Those can often be used for protests too. If people can't go anywhere. If people want to do this Send the press release to all the local media outlets, so you can get coverage.

    If you feel alone in your city, you might ask to represent other ME patients who can go and have their photo or names with you, with their permission...
     
    Last edited: Nov 26, 2013
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This is inspiring and exciting. I hope there is a huge turnout. I'm afraid I can't join you - too far away!
     
    Delia likes this.
  5. Iquitos

    Iquitos Senior Member

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    Thank you so much Wally! I'll be with you in my fantasies Dec.10 in Washington and in my thoughts Dec. 9 in SF.

    Will the canary be our new totem.symbol?
     
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  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    In addition to its Atlanta headquarters, the CDC has other locations in the United States and Puerto Rico. Those locations include Anchorage; Cleveland; Cincinnati;Fort Collins; Hyattsville; Morgantown; Pittsburgh; Research Triangle Park; San Juan, Puerto Rico; Spokane, Washington; Detroit; and Washington, D.C.

    Also, there are local Social Security Offices practically everywhere. Or you could protest in front of the offices of your US Representative or Senators.

    Not sure protesting at the post office is that effective. i think it would just result in some confused postal clerks, but maybe.

    And remember to video yourself even if its just you and post to youtube!
     
    Last edited: Nov 26, 2013
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  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for doing this Susan. As you may know, Rivka has made a demonstration checklist and has a banner you might be able to use. I would suggest contacting local support groups to get locals interested and perhaps offer a small stipend to them to defray travel costs, say $15 a person. I can help with some money. Charlotte von Salis, another former lawyer advocate lives in DC. It would probably be worth contacting her to see if she can help your DC efforts. Thanks and Good Luck!!!
     
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  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    btw, you said $1B per year in costs. I think the study say something like $19Billion in direct lost work costs (and with medical care added in I think something like $50Billion not including the shortened lifespan, self care (nonmed) costs, and pure misery)
     
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  9. SickOfSickness

    SickOfSickness Senior Member

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    This is a great idea. Anyone who wants to go shouldn't be stopped by money. Many who can't go would be willing to donate. I would like to see an organization just for accepting donations and giving them for advocacy of this type.
     
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  10. lnester7

    lnester7 Seven

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    I will help with money too I am too far to travel. I can pay a person to represent me for the day. Also let me know if you need any background work to help!
     
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  11. Mark

    Mark Acting CEO

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    I haven't checked with the board yet, but I think it's quite possible that PR may be able to pass on donations for this purpose and perhaps even use some PR funds to help people to attend demos. We may have some admin to set up in order to do this and we're extremely busy with end-of-year stuff right now, so I'm not promising anything for this demo right now, but in future I think we should be able to help with this sort of thing.
     
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  12. aimossy

    aimossy Senior Member

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    @Wally I havnt seen this on fb hope its all over it shortly:)

    edit: seen it on fb now.....done my sharing!
     
    Last edited: Nov 26, 2013
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  13. Wally

    Wally Senior Member

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    Thanks to all of you and those contacting me by e-mail to let me know that you support the idea of these demonstrations and for all of your suggestions. I will try to consider each of your ideas and if I am not able to incorporate them into this demonstration, I have a feeling that we will have opportunities to do more of these in the future.

    I truly organized these demonstrations as a way for me to express my own frustration with how this illness is recognized in this country and throughout the world. I had the sense from online discussions, as well as the remarkable response to Patricia Carter's IOM/HHS Petition that people were feeling like I was. I certainly have not had the cognitive skills or stamina to do what many others have been doing to advocate for this illness, but I thought dreamed that I might be able to contribute by doing some behind the scenes planning (e-mailing and phone calling) that is needed to organize a demonstration and put the final touches on how the petition will be presented.. I would never have tried to take on such a task without the remarkable skills of other patients and advocates. Thank you Patricia Carter, thank you Rivka Solomon, thank you to everyone who has touched my life whether you know it or not. Even if you are half way around the world, just being a voice on line helps me have hope that we can move mountains even if only one stone at a time.

    Please know that these demonstrations are really for both you and me.. Hopefully, one more little ripple in our pond will help inspire someone else to think outside of the box. Think of what Jen Brea has done from her bed. She is remarkable, but I am sure that she would say that she could never have done what she has without the support, help and inspiration of many unsung heroes.

    Justin I watch how you and others are working so tirelessly to bring information about this illness to others. So, so many people are doing so much to try to be part of this community. These demonstrations are just my attempt to pitch in just a little bit. I currently have somewhat functioning legs and arms, so I can use those to help Patricia deliver her petition. I also have a rather tenacious spirit that allows me to plow through government bureaucracies to find ways to make events happen. As a former government lawyer, I figure there are some skills that I still have left that give me a unique perspective to trudge through layers and layers of rules, regulations,Indians and Chiefs.

    For those who feel that they don't have much to contribute, I do understand that feeling because this illness has brought me to my knees where contemplating how you are going to survive one more minute or one more hour of this illness seems almost insurmountable. It is o.k. to just hold on tight to make it through to another day. We need to try to be here here for each other. Your life is important to all of us. Together I do believe we can make our world a better place.

    I am having a bit of a challenge typing tonight, my brain and fingers are refusing to work in harmony, so sorry if I don't get a chance to respond to all of your thoughts and suggestions. I am here watching and reading taking everything in. Lots of work to do this week and next week, but I know that together we can make something good come out of this.

    Love you guys. I'll be back tomorrow to check in and let you know what I am seeing from inside of my crystal ball. :) :) :)

    Wally (Susan)
     
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  14. taniaaust1

    taniaaust1

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    I hate to say it but Im so glad someone like you got sick, we need more with your skills to help this illness get the attention it deserves. Most of us are struggling to just adovcate for ourselves at very basic levels thou we certainly are trying. (I even held my own demonstration once which did work wonders but I then was too sick to follow up on the new door it was opening up due to my protest. The power of just one person demonstrating shouldnt be underestimated).

    I wish I could join you. I hope you get others turning up to support the very good thing you are trying to do there.

    To all no matter where you are in America.. please support Wally even if it means the same day holding a demonstration in support outside your local centrelink office or whatever. Gather attention that you are doing it to support a demonstration happening elsewhere and to help our cause. (people can also use it as an opportunity too to teach others about our illness if you print off some good info on ME/CFS to hand out to people). umm I wish I knew where my protest material was put as an example (im still not unpacked from moving)



    Thank you Wally (Susan).
     
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  15. Nielk

    Nielk

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    From Wally:



    How true this statement is! I started looking into doing a demonstration at HHS in Washington DC about a month ago but, did not have the energy, stamina to carry it through. I am so happy and grateful that you are doing this. This is exactly was is needed right now. I hope that many will join in but like other have shown before even a small demonstration can be very effective.

    Please let us know how we can help out.
     
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  16. Wally

    Wally Senior Member

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    Thanks for all your support. I plan to carry all of you with me in my heart when I travel to S.F. and Washington D.C.

    I also want to acknowledge that I knew when planning these demonstrations that most ME patients would not be able to attend. I think Jen Brea said it so well in her documentary (trailer) "Canary in a Coal Mine" that most people with this illness cannot get out to the "Mall" to protest. If people are not familiar with Washington D.C., you may not understand that the U.S. Capitol, the US Supreme Court, the offices of both the U.S. House of Representatives and the U.S. Senate all sit in an area called the "National Mall". Here is a map of this area for those who like having a visual aid as a reference. http://www.nps.gov/nama/planyourvisit/upload/FINAL-tour-bus-flyer.pdf. The White House, which is the home of our sitting President (currently Barack Obama), is located about 12 blocks away from the Capitol.

    (I had an opportunity a number of years ago to get a back stage pass to see many of these historic/symbolic U.S. buildings up close and personal. I had a close friend who at 27 was working for the White House (towards the end of Ronald Reagan's second term in office) in a fairly high level position. We had the behind the scenes tour of the White House and we were able to have lunch in the private dining room for the President's Cabinet. Think small private dining room with one big table, leather chairs and wood paneled walls - like a private men's club. They even had their own china service (the White House has lots of different china services). There were ten of us - lifelong college friends even today - who made this trip to our Capitol. We even have photos of us at the White House goofing off (just a little bit), holding up the Cabinet china plates next to our faces for a fun photo opportunity.

    We happened to be at the White House while Nancy and Ronald Reagan where home. On the day we visited, we had considerable access throughout the building (except for the private living quarters), even getting to stand on the back lawn watching Ronnie, Nancy and their King Charles spaniels board a helicopter to take off for the weekend at Camp David. We were young and carefree, so flirting with the Secret Service and making them crack a smile was a challenge we could not resist. Up close and personal you could see why Ronald Reagan had been a movie star in his former life. He just had one of those charismatic faces and personalities that make a "star”. He was right out of central casting as if he had been selected to play the role of the President in a Hollywood movie. I have been told that John Kennedy and Bill Clinton also had/have the same type of charismatic personalities. Politics definitely has an element of theatrics built in to it and when someone is chosen by their party to run for higher office they better be able to play the role well or they will never make it past third base to get elected.

    My friend (who was working at the White House) told us that something unusual appeared to be going on the day we were there because there was a lot of extra action happening around the Mall. You could feel the tension in the air and we could see a stream of black limos coming and going from the "war room", which was another building near the White House where high level, secure meetings would take place. Even those of us unfamiliar with the pace of life at the top levels of government could feel that something was up when we visited the White House and the Speaker's Offices in Congress. A few days later, the United States made the unprecedented move to bomb Libya. This event and other serious threats going on in the world would eventually be the catalyst that led to the change in access to many iconic locations throughout Washington D.C.

    In talking with the Capitol Police when planning this Washington demonstration, I was told that while it is still really a great trip to see our government in action, it is nothing like what I was able to experience when I visited back in the mid 1980's. This point in time (the mid 1980's) also holds significance for me because of the outbreaks of M.E., which occurred in Incline Village, Lake Tahoe (my yearly vacation spot since I was a child) and Lyndonville, New York. The 1980’s were a pivotal time for this illness, as well as so many other events happening around the world.)

    Anyhow, I digress from my original point while I took a rambling tour back in my memory banks from times gone by. After spending many years cursing this illness and feeling betrayed as to why I was so unlucky to get sick, I have come to accept and find comfort in things on a more spiritual level and feel that perhaps this is a journey that I was supposed to take. Maybe we are all just vessels for a greater purpose than we can see while we are here on this earth. A very difficult concept to believe in when your own personal life journey can rip you to shreds and leave you questioning why being here is worth so much suffering. In more comfortable and functioning periods of the life that I currently lead, I am wonder if one of the purposes to the life I have had is to look for opportunities (no matter how small) to see how I can get out of my own head and think about the bigger picture to find ways to make lemonade out of the lemons life has given me. So for me, these demonstrations are a challenge I made to myself to try something different to help those you are not in a position to go to the "Mall" to protest, but perhaps can live vicariously through what I may have the resources and level of stamina (even if not very sustainable on a long term or consistent basis) to be their voice, legs, arms, ears and eyes. In my own way I will try to make a small impact in the world to bring attention and awareness to this illness at as many venues and as many times as possible as my body will allow. I guess I have learned that "M.E.", while happening to me and my family is so much greater and important than just “me”.

    To anyone who would like me to carry you in spirit and name to these demonstrations, I will. If your name is on Patricia Carter's IOM/HHSpetition you will be with me at these events or if you do not want to participate in this petition for whatever reason (not comfortable in giving out your private information, you did not agree with the purpose of the petition, etc...), if I see that you liked the idea of the demonstrations here on this Forum or if you or someone on your behalf reaches out to me by private message, I promise to also carry you with me in spirit to these demonstrations. I will gladly welcome and be honored to be the vessel to make your presence known to the world. My hope is in the future, we can use opportunities where more able bodied people can get out to the "Mall" to find ways to make us all less invisible.

    I am not well myself, but since being on a course of Famciclivor last year, I have had more hours where I can try to participate in outside life just a bit more. Unfortunately, I always pay the price of relapsing with each step I take outside of my safety zone. However, after being ill for so many years I feel an urgency to grab little slices of life while I am able to leap onto the back of the train even if the ride is just a very short one. My trip to S.F. and Washington D.C. is my own little plan, I hatched up one night while lying awake in bed. It goes along with my current mantra

    "Why me? ... Why not me?...It’s not about me!. It’s about the much bigger picture of M.E.!!!!

    So with some very unhappy family members who are not able to make the trip back east with me (due to other prior commitments), they are reluctantly supporting my "somewhat crazy" plan to travel to S.F. and stand in the cold holding up signs on a busy city street and then immediately hopping on a plane to fly across the country to hang out in an even colder city in places that I visited once over thirty years ago. It does sound a bit crazy when I say it out loud, but I also see this as perhaps a once in a lifetime adventure in this old, weary life that I now lead. This is also why my family would be thrilled if there are just one or two other warm bodies out there in the Washington area that might be willing to hang with me for half a day, while I am standing in front of the HHS building, the Capitol and the White House. But even if I am alone in my quest, I will be happy knowing so many of you are standing right next to me in spirit.

    Maybe we can brainstorm and figure out ways for other types of on-line petitions that would allow people to sign up to say whether they agree (or disagree) with an action proposed to address an issue(s) with this illness. I think this would make advocacy activities much more transparent and accountable to M.E. patients around the world. It would also give us a trail of evidence to support what may appear as a party of one to the outside world, but in reality is a party of thousands (maybe someday even a party of millions* ) standing, sitting and lying down behind the invisible curtain making their presence known. I also really like the idea of getting pinch hitters to come to bat on the field for those of us who are not able to make it out to the ballpark/Mall on our own. (*Dr. Kogelnik please get the patient social networking part of your fantastic tech plans for the Open Medicine Institute up and running as soon as you can!)

    Take care to all you Canaries and hopefully I have made you understand that these demonstrations are for "M.E." and are not just for me. I would happily give up this time in the limelight, which I have thrust myself into, in order to give the stage to someone else who is much more worthy of representing people with this illness. If you knew me, you would understand that while I love planning a party, I find more happiness and satisfaction in watching others enjoying their time together then actually taking the center stage at the party. But sometimes when planning a party, you need to be willing to step up and be the first one out on the dance floor to break the ice.

    Take care and I hope that my long posts have not worn anyone out besides me. Too bad I can’t put myself on "ignore" when I begin typing out a stream of consciousness or get a "wild eyed idea" to travel thousands of miles across the country because I like a challenge.

    Wally (Susan)

    P.S. For those who have been curious about my screen name, the name Wally comes from one of my beloved beagles who was named Wallace Alvin Cleaver. Wallace Cleaver (for those who are not old enough to remember or did not watch this American T.V. show) was a character on the show "Leave it to Beaver", which ran back in the 1950’s – 1970’s. Alvin was my Dad's middle name, which is also the name of another TV series, which ran during the 1970's. This show was called "Alvin and the Chipmunks". As a rebellious teenager, I thought it would be amusing to name my puppy after my father to show him my streak of disrespect for authority, along with my budding teenage use of power (definitely a lawyer in the making at a young age or perhaps learning a few too many lessons from Eddie Haskell - another memorable character from "Leave it to Beaver" ). One of these days I will make an effort to add an avatar to my online presence, so Wally the beagle can live on in cyberspace.

    ____________________________________________________________________________

    “Leave It To Beaver “ (http://en.wikipedia.org/wiki/Leave_It_to_Beaver )







    “Alvin and the Chipmunks” (http://en.wikipedia.org/wiki/Alvin_and_the_Chipmunks )

     
    Ecoclimber, Izola, beaker and 6 others like this.
  17. biophile

    biophile Places I'd rather be.

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    I have not been keeping a track of the IOM issue, I have been distracted with other issues, but I am glad some people are interested and looking into it. As some used to say in Australia when dealing with politicians: "Keep the bastards honest".
     
    Izola and aimossy like this.
  18. rosie26

    rosie26 Senior Member

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    Wish I could be there with you Susan and everyone. I have to be there in spirit. :hug: xx
     
    Last edited: Nov 27, 2013
    aimossy likes this.
  19. Ember

    Ember Senior Member

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    Thanks, Susan.:hug: For me, it's time to lie down and be counted!

    [​IMG]
     
    Last edited: Nov 29, 2013
    Liz Willow, Izola, Keela Too and 4 others like this.
  20. SOC

    SOC Senior Member

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    Next time give me an advance warning of 6 months or so and I'll get 3-4 (maybe more) people to a demonstration in DC. :) Unfortunately, my daughter will be in DC 10 days before and 10 days after this event, but not on the day.
     

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