Discussion in 'Upcoming ME/CFS Events' started by Wally, Nov 26, 2013.
Thinking of you today!!! Thank you Susan.
Please report back, from both demonstrations, when you can...
Thank you Susan and everyone who is going. Remember to drink your fluids often and eat often too. xxxx
Thank You for going where many us could not, I am sending my will, gratitude and all the energy I could scrape up.
Has anyone heard how the demonstration went? I'm sure Susan is on a plane right now headed to DC. BRRR
My concentration is blown today, I keep trying to find out but then aimlessly my mind wanders off.
Erica Verillo who was there has a write up about it on Prohealth
Wildaisy started a group thank you card for Susan.
PLEASE, EVERYONE, SIGN the Group Card for Susan Kreutzer in appreciation for her work on the San Francisco and Washington D.C. ME/CFS demonstrations http://www.groupcard.com/c/dH0NyykZKrSPlease share this message!
It is snowing in dc today and the federal government is closed. Don't know if this means a change of plans.
I just sent Susan an e-mail. She was going to deliver the petition to HHS. I hope that she was able to fly in and that she can reschedule for tomorrow.
Great idea...Thank you for who ever came up with this idea.
Thank you, Wildaisy for starting this group thank you card. Great idea!!!
Susan, I was delighted to learn of your successful demonstration today - and was inspired to write a blog post around our issues. Linky
I ended off my blog post with the following - and this is really the bit I want you to read.
So to round off my ramble, I'd just like to say to Susan Kreutzer and her team of helpers:
"THANK YOU! You are amazing people for taking this stand. Many more of us are with you in spirit if not physically by your side. My signature is up there somewhere on your banner, and it's yelling support for this action! "
Perhaps now is the time that this patient community finally starts to get noticed?
The link to Llewellyn King's excellent article concerning Susan Kreutzer, Wally, demonstration can be found here:
David and Goliath, or, the Sick and the Bureaucracy
or filed on the website White House Chronicles under the tag Department-of-Health-and-Human-Services
Thank You Susan for your amazing contribution toward ME/CFS advocacy!! I know it took an incredible amount of effort and sacrifice on your part to organize this event!
Wildaisy: Thank You for starting the TY card for Susan B. Good going!!!!
The Blue Ribbon: The ME and CFS Documentary Project
Thank You, Susan from the bottom of my heart, a deep felt Thank you. Izola
Thank you Susan for your generosity of time and spirit! I am inspired to do what I can and hope many more are as well.
Hello Everyone out in Cyberspace! I am back in California. I actually returned late Wednesday night and I have been resting up and trying to make it through hundreds of e-mails, phone calls and texts. It has been slow going because my brain is still a little fried from all the activity that transpired over the last couple of weeks. I even tried to get online to comment about the trip, but every time I tried to see how the rest of the world was doing or send off a quick note I was either interrupted, fell asleep clutching my computer or could not get my words to come out without sounding pretty jumbled.
I really will try to make this comment semi-short for now because otherwise you will end up with one of Wally's rather, long and rambling postings.
Thank you, thank you, thank you for all the support you have shown me. It does mean so much to know that my trip to Washington meant something to not just me and my family, but may have also represented some of the feelings shared by other patients. Thank you also to Wildaisy (Patricia Carter from the MECFS Forum) for being the catalyst who inspired me to make this trip. It was Patricia's petition regarding the IOM contract that made me realize that just one person thinking outside the box could possibly make a difference to move this illness forward in a way that did not appear to be happening prior to this. Thank you also for the beautiful card that she organized and the many people who signed it.
I went on this trip for myself and for those people who expressed their desire to do the same, but they were unable to perform this type of task. I knew what I planned to do would not necessarily be the most popular move or politically correct, but from the bottom of my heart I just felt that it was the right thing to do. The response that I rec'd both online, through e-mail, phone calls and texts, as well as in Washington makes me believe that this decision was a positive one.
More information to follow about my trip to D.C., the petition(s) delivery, demonstrations in S.F. and D.C. and contact with government officials. I am going to get help in writing up this information because writing is a bit of a struggle for me. I am sorry that it will take a little time for me to get all the details out to you, but hopefully through the efforts of others like Ryan Prior, Erica Verillo and Llewelyn King you will begin to get a taste of what happened during the last week related to our ME/CFS crusade.
On an even more positive note, the story is not yet over. Lots of work is going on behind the scenes by people who are coming together to give the patient community a much larger voice. I am watching and learning myself and my fingers and toes are crossed that what I am seeing will very soon develop in to something that this community desperately needs.
I will also be working to continue my contact with members of Congress and the Senate to try to get our government officials to take a closer look at how the HHS is handling this illness. I have already booked a return trip to Washington the week of the State of the Union address (State of the Union address will occur on January 28th) to complete some of the things I had planned to do last week, but I was unable to accomplish because of the snowstorm, the federal government shutdown on December 10th and lack of time and energy to fit everything into a 48 hour trip to D.C. I know that there will be others who will also be doing things in D.C. and elsewhere to get the word out about this illness and what they want to see the government do to help move this illness forward.
So thanks again for all your support. Try to enjoy the holiday season and know that the renewed fight to get this illness more attention and respect has only just begun. I am filled with hope that 2014 is going to be a real game changer of a year for this illness on many, many different fronts.
Until we talk again .... keep strong Canaries! Your voices are being heard.
Wally (tired but not defeated - just taking a short rest to recover and get ready for the next challenge)
To those who enjoy music to keep them inspired here are the songs that helped me stay strong and focused on why we are all fighting to win the war against this illness.
Please feel free to post this message elsewhere online where you think people might be interested in reading/listening to it.
You can also try a Google Site Search
Separate names with a comma.