Ember
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THANKS, SUSAN!
ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013
- Thread starter Wally
- Start date
Sing
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Ember, have you been saving this picture up! How fabulous is this! Little bird has become
BIG BIRD
BIG BIRD
Ember
Senior Member
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Ember
Senior Member
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“We will speak our truth” - Susan Kreutzer Goes to Washington, DC
By Erica Verrillo • December 17, 2013
By Erica Verrillo • December 17, 2013
taniaaust1
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I missed signing the card but would of done so if I'd seen this. A big thanks to Susan
@justinreilly , When in CLE?
Ember
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ME/CFS Demonstration December 9, 2013 at U.S. Dept. of Health & Human Services - S.F.
Thank you Ember for putting for posting this video for me. When I uploaded it last night (I had totally forgotten that I had not put the video up on-line), I promptly proceeded to fall asleep. Thank goodness there are ME/CFS "watchers" out there 24/7 making sure that nothing slips by on the radar screen. I am truly amazed at how good our patient population is at keeping on eye on things even when there are powers at work that would like to keep many parts of this illness buried far, far away. Thank you!
I have also just posted over at the MECFS Forums thanking Patricia Carter for making this video available on that Forum as well. If there is anywhere else that you think this video should be posted (i.e. ProHealth, Facebook etc... please feel free to post away).
I have also commented over at the PR Forums regarding the CFSAC hearing on December 10th and 11th. Not sure if there is another thread here on the PR Forum where I should link in that post, but for now I will just copy to the link in this thread. Please feel free to re-post the link and any of the text here on the PR Forum or elsewhere out in cyberspace.
See Reply #39 at http://www.mecfsforums.com/index.php/topic,18333.msg158119.html#msg158119 for more information regarding my CFSAC pre-recorded testimony for the Dec. 10th - 11th CFSAC Meeting.
5150
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Call me crazy. This refusal by Governments to get serious now and in the past, smells of "conspiracy". Oh, and the part about $16 million going to male pattern baldness research vs only $6 million for ME research, is truly pathetic. I would laugh but it hurts me too deeply to think of falling to that level. This whole issue about how ME is _Not_ being handled: that's what is really crazy.
Thanks Susan K. I admire your effort.
Thanks Susan K. I admire your effort.
roxie60
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I just signed the thank you group card even though it was late, if Wally can go back and see others that have signed I hope it is an encouragement. 45 page card so far.
Here is the link that was inadvertently deactivated from my Reply identified above as Reply #69.
The original upload of this video occurred on November 29, 2013, as required by the CFSAC's requirement for receipt of pre-recorded video submissions for their December 10 - 11, 2013. This was my first attempt at pre-recording any video and then uploading it to a YouTube Channel. I followed the directions that the CFSAC published for pre-recorded testimony. On the Monday following the Nov. 29th deadline for submitting pre-recorded testimony, I contacted the CFSAC's third party contractor to confirm that my pre-recorded video testimony had been received and it met the requirements for use at the CFSAC meeting. I was told that the recording was acceptable and it would be presented at the meeting.
On Friday of that week (Dec. 6th), I was contacted in the afternoon by the CFSAC's third party contractor informing me that they were having a problem with the audio recording on my video. They were unable to determine why it was now not working properly, but they wanted me to know that they would still play the video at the meeting, but there would be no sound. Yes, you heard that correctly they would play the video with my lips moving, but there would be no sound. I will let you imagine how I might have responded to this information.
Anyhow, after some arm twisting, arrangements were made to allow me to phone in my testimony in place of playing my pre-recorded testimony without sound. The compromise I reached with the CFSAC representative was that I would be called at a specific time on Thursday, December 11th, prior to when I would be leaving Washington D.C. to fly home. As seemed to be the theme of my trip to Washington, apparently events at the CFSAC meeting delayed my phone testimony from happening at the time I had been slotted to testify. Approximately two hours after the agreed upon time that I would phone in my testimony, I received a call from the CFSAC committee while riding in the back seat of a taxi on the way to the airport. All I heard when I picked up my phone was that the CFSAC committee was calling and they were ready for me to provide my testimony. Talk about being caught off guard, I had no notes to read from and the only thing on my mind was how I was going to get all the luggage I brought with me from the taxi to the terminal without any curbside assistance available due to construction going on in the area. What happened after that is somewhat of a blur.
It is my understanding that I did present some type of testimony via the phone on December 11, 2013, but I really don't know what I said or if it made any sense to anyone listening in to the meeting. I am still awaiting the HHS to publish the recording from this meeting, which I assume will include my phone in testimony. Part of me is a bit fearful to hear what I said from the backseat of a cab, but the other half of me thinks this could be quite entertaining when put in context of the situation I was dealing with. So for now I will just re-post my pre-recorded testimony submitted, but not played at the Dec. 10 - 11, 2013 CFSAC meeting. If this recording is played on a device other than an Apple product (desktop computer, laptop, iPad or iPhone) there appears to be an issue with the audio volume. To date the HHS has not been able to figure out how their instructions to upload pre-recorded testimony via YouTube can be tweaked so that different types of recording devices uploaded to Youtube will play without audio issues. Perhaps this was just an issue that resulted because of the recording equipment I was using (iPhone), but I have put in writing to the HHS that I hope they will solve this problem for future CFSAC meetings. I would hate to see the pre-recorded testimony option go away just because there is a tech issue that has not yet been addressed.
To those who have made comments on my YouTube channel that the date shown that my video testimony was uploaded somehow shows that this testimony was not timely submitted to the CFSAC committee, your assumption would be incorrect. Please understand that this video has been taken down and uploaded multiple times since December while people with much more tech knowledge than me, try to figure out if I can fix the audio problem on my end or it needs a fix by some other tech wizard. So far, we have not had any success in figuring out how to solve this problem.
Wally
The original upload of this video occurred on November 29, 2013, as required by the CFSAC's requirement for receipt of pre-recorded video submissions for their December 10 - 11, 2013. This was my first attempt at pre-recording any video and then uploading it to a YouTube Channel. I followed the directions that the CFSAC published for pre-recorded testimony. On the Monday following the Nov. 29th deadline for submitting pre-recorded testimony, I contacted the CFSAC's third party contractor to confirm that my pre-recorded video testimony had been received and it met the requirements for use at the CFSAC meeting. I was told that the recording was acceptable and it would be presented at the meeting.
On Friday of that week (Dec. 6th), I was contacted in the afternoon by the CFSAC's third party contractor informing me that they were having a problem with the audio recording on my video. They were unable to determine why it was now not working properly, but they wanted me to know that they would still play the video at the meeting, but there would be no sound.
Yes, you heard that correctly they would play the video with my lips moving, but there would be no sound. I will let you imagine how I might have responded to this information. Anyhow, after some arm twisting, arrangements were made to allow me to phone in my testimony in place of playing my pre-recorded testimony without sound. The compromise I reached with the CFSAC representative was that I would be called at a specific time on Thursday, December 11th, prior to when I would be leaving Washington D.C. to fly home. As seemed to be the theme of my trip to Washington, apparently events at the CFSAC meeting delayed my phone testimony from happening at the time I had been slotted to testify. Approximately two hours after the agreed upon time that I would phone in my testimony, I received a call from the CFSAC committee while riding in the back seat of a taxi on the way to the airport. All I heard when I picked up my phone was that the CFSAC committee was calling and they were ready for me to provide my testimony. Talk about being caught off guard, I had no notes to read from and the only thing on my mind was how I was going to get all the luggage I brought with me from the taxi to the terminal without any curbside assistance available due to construction going on in the area. What happened after that is somewhat of a blur.
It is my understanding that I did present some type of testimony via the phone on December 11, 2013, but I really don't know what I said or if it made any sense to anyone listening in to the meeting. I am still awaiting the HHS to publish the recording from this meeting, which I assume will include my phone in testimony. Part of me is a bit fearful to hear what I said from the backseat of a cab, but the other half of me thinks this could be quite entertaining when put in context of the situation I was dealing with. So for now I will just re-post my pre-recorded testimony submitted, but not played at the Dec. 10 - 11, 2013 CFSAC meeting. If this recording is played on a device other than an Apple product (desktop computer, laptop, iPad or iPhone) there appears to be an issue with the audio volume. To date the HHS has not been able to figure out how their instructions to upload pre-recorded testimony via YouTube can be tweaked so that different types of recording devices uploaded to Youtube will play without audio issues. Perhaps this was just an issue that resulted because of the recording equipment I was using (iPhone), but I have put in writing to the HHS that I hope they will solve this problem for future CFSAC meetings. I would hate to see the pre-recorded testimony option go away just because there is a tech issue that has not yet been addressed.
To those who have made comments on my YouTube channel that the date shown that my video testimony was uploaded somehow shows that this testimony was not timely submitted to the CFSAC committee, your assumption would be incorrect. Please understand that this video has been taken down and uploaded multiple times since December while people with much more tech knowledge than me, try to figure out if I can fix the audio problem on my end or it needs a fix by some other tech wizard. So far, we have not had any success in figuring out how to solve this problem.
Wally
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@dannybex - Great to hear that it works for you. Perhaps it only happens when played on my PC and the one that belongs to the HHS.
@dannybex - Great to hear that it works for you. Perhaps it only happens when played on my PC and the one that belongs to the HHS.
I dunno. But I dod remember watching it another time as well, and it worked then too.