I am so far behind in my reading that I missed some of these posts.
I was trying to find an audio and/or visual recording of this meeting on-line, but so far I have not found either. Has anyone been able to locate these? I would think that it now being over 4 weeks since this meeting(s) took place that the HHS should have the resources available to make said meeting recordings available?
I did not have an opportunity to provide my experience with dealing with uploading my pre-recorded testimony for this meeting, but it was quite interesting.
As some of you may be aware, I was in D.C. Lobbying/demonstrating for this illness during the period that this
meeting took place and I was not able to listen/watch the meetings myself.
I believe I may have given some public testimony from the back of a cab on the way to the airport on the afternoon of Dec. 11th. However, I am not sure if this conversation was ever broadcast? I would like to hear what I said (even if cringe worthy) while "flying from the seat of my pants" without any notes to look at. How I ended up giving public testimony from the back seat of a cab is in another part of my adventure in Washington that I still plan to share (at a later date) with anyone who is interested.
Writing up a report on how my trip to D.C. went has not happened as quickly as I planned due to my complete exhaustion following this trip, the Christmas and New Year's holidays, a bout of the flu, extensive planning required for my return trip to D.C. at the end of the month and trying to keep up on all the activity surrounding the IOM contract. Wow! Just a few things in the hopper. I think this would be overwhelming for a "normal" person. I am pretty darn proud of all my fellow ME/CFS patients to see how much we can accomplish even when faced with a complex illness with varying degrees of disability.
Go! Canaries! You know that when they start trying to tell people that you should quiet down and play nice that you are beginning to be heard and the status quo is no longer in place. I plan to keep chirping away and I hope you will join me. More info. to follow later this week on how you can help with Round 2 of "Wally Goes To Wasshington, if you would like to join in the message this ME/CFS patient will be bringing to D.C. using "Wally's" outside voice.
I leave you this morning with yet another oldie but goodie to keep your toes dancing while you rest in your beds getting ready for the fight we continue to face.
P.S. Why does Wally (Susan Kreutzer) not show up in the CFSAC's list of people providing public testimony? Are these lists only for people who gave written testimony. Wally did provide pre-recorded testimony as per the CFSAC's instructions. This testimony is in the hands of the CFSAC/HHS and it is available on my YouTube Channel at http://youtu.be/PJFQZrpW5uY.
Apparently, the HHS was not able to hear my testimony when they tried to play the recording. Just a thought, but perhaps if you take you hand off the mute button when you feel that patients are not using appropriate "inside voices" you might be able to actually hear what patients are trying to tell you.
(Note - I re-uploaded this video on my channel last night to include an additional 30 seconds of my video testimony that I had taken out of my "official" submission" to the HHS in order to come in under their 5 minute rule for submitting public testimony. I just thought it would be worth posting this additional few seconds of testimony in order to show what I had tried to say in its entirety, especially because my YouTube Channel has no time restrictions.)
Sent from my iPad