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08-18-2010, 12:00 PM | #1 | ||
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In Remembrance
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video of day 2
Except for with the patient speakers....they are good for nothing! lol Actually PDF did provide support, as they faithfully have for many years for pipeliner's attendance. This is a two day workshop so nothing you want to watch all at once. This is day 2, which is posted first and we are still waiting for Day 1. After a brief opening by Canada's own Dr. Tony Lang, the first speaker is Perry Cohen, whose halting speech and constricted airways are noticeable in his speech which only gets worse as the day goes by. PD is taking its toll on him as it has us all but he just keeps going and going like the energizer bunny. What he says and explained well is how, according to the surveys we send out on sham surgery, many of us think about placebo and sham surgery. Now he's been invited to speak in London. peg speaks later on..also joel havemann, former LA Times DC person, now reitred with PD speaks about a pwp that many of us know Tom 819 about his experience with sham surgery. thank you perry cohen and all! http://videocast.nih.gov/Summary.asp?File=16059
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 08-18-2010 at 12:53 PM. Reason: spelling |
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"Thanks for this!" says: | Bob Dawson (08-18-2010), soccertese (08-18-2010) |
08-19-2010, 08:25 PM | #2 | ||
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In Remembrance
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http://videocast.nih.gov/summary.asp?Live=9474
these are very interesting to listen to as you do other things and glancing over to see what all the big names look like. But PEG and JOEL HAVEMANN have been cut out unless more is coming , which would be inexcusable. they were supposed to be at the end of day 2 -it would be an outrage. a couple of the doctors are so arrogant that they talk about people who aren't there to defend themselves and some of it isn't true. dr. stacy in particular made some very unprofessional statements and other doctors mention a mutual patient without naming her who they portray personally a little, once again underestimating us. we've already informed the patient and knew exactly who she is. There were many good testimonies though and it is worth watching .thanks to robin elliott for presenting our sham survey results. paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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08-19-2010, 09:16 PM | #3 | |||
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Senior Member
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They are taking their sweet time, but more HAS to be coming. The final hour was putting 2 days of discussion together from a room full of pretty sharp researchers. That part has the public (patient) comments and recommendations.
I am hoping that they do a transcript for the recommendation part. I'll keep checking back and will let you know. Peg |
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"Thanks for this!" says: | paula_w (08-19-2010) |
08-19-2010, 09:23 PM | #4 | ||
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In Remembrance
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Quote:
the debacle straight from a champion's mouth from univ. of kentucky begins at about 88 min. into day 1
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paula "Time is not neutral for those who have pd or for those who will get it." |
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08-20-2010, 03:16 PM | #5 | |||
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Well, Paula. I decided to ask about the missing patient presentations from the NIH Sham surgery conference, and I just got an email telling me t hat they had found times missing from both day s due to human error.
They have taken the videocasts down and have someone working on getting the rest of it online as it was intended. This was not intentional, and they didn't want inferior or incomplete information posted. Oops! Peg |
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"Thanks for this!" says: | paula_w (08-20-2010) |
08-28-2010, 07:38 AM | #6 | ||
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In Remembrance
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from NIH: The tapes have now been successfully converted to a web-based format and are available on the NIH Videocast website. We are working on establishing a link to our website where the agenda and public comments are located. We will also be posting all slides. Day 1: http://videocast.nih.gov/Summary.asp?File=16076 Day 2: http://videocast.nih.gov/Summary.asp?File=16059
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paula "Time is not neutral for those who have pd or for those who will get it." |
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