CFSAC webinar 17 & 18 May 2016

[Gemini]

Man, I hope this is going up on YouTube.....

May 18, 2016 CFSAC Meeting:

Telephone call-in number 888-946-7204 [same as May 17th]

Computer webinar https://www.mymeetings.com/nc/join.php?i=PWXW7133638&p=7905259&t=c

Note: Webinar access link is different from the one used May 17th. Unless technical problems are fixed by tomorrow you'll have to again use a phone for audio on the Webinar.

 

[Comet]

Yes. See Cort's blog for details:
http://www.healthrising.org/blog/20...gue-syndrome-worse-mulitple-sclerosis-cancer/

Don't want to take this O/T, just wanted to thank @Bob. I've had my eye out for something like this.

 

[Sasha]

Bumping this in advance of today's session, FWIW.

Hope they'll have the sound on, this time.

 

[waiting]

Bumping this in advance of today's session, FWIW.

Hope they'll have the sound on, this time.

Me, too -- but so far, it is not looking good. I can hear the Muzak on the phone but still no audio from the computer. Plus an operator just came on saying the event would begin momentarily.

I sent another email to cfsac, posing the question.

 

[waiting]

Update: it just started. Nancy (?) Lee just apologized -- there will be no online audio today either -- she said that will be fixed for the next event.

 

[Sasha]

Update: it just started. Nancy (?) Lee just apologized -- there will be no online audio today either -- she said that will be fixed for the next event.

Thanks for letting us know.

 

[mango]

Man, I hope this is going up on YouTube. What a fiasco.

I totally agree...

I sent an email again today asking if they will publish the recordings with slides and audio etc. No reply yet.

 

[waiting]

I am interested in watching today's meeting, but I just can't tie up my phone all day. I may see if I can pop in & out.

 

[mango]

Here's the email reply I received just now:

"We tried but could not do this. We were told last week by Verizon that it was available, but turns out we were misinformed. Next webinar we will have it available.

Our apologies.The audio version will be archived, as will be the slides."

 

[shannah]

Update: it just started. Nancy (?) Lee just apologized -- there will be no online audio today either -- she said that will be fixed for the next event.

But that's only six months away!

 

[medfeb]

Attached are screen shots from the Agency updates at CFSAC today.
NIH's presentation was good

 

[Sasha]

A few people are tweeting:

https://twitter.com/search?q=#cfsac&src=typd

 

[Bob]

Here's the email reply I received just now:

"We tried but could not do this. We were told last week by Verizon that it was available, but turns out we were misinformed. Next webinar we will have it available.

Our apologies.The audio version will be archived, as will be the slides."

Thanku mango...
At least the audio recording will be made available. That's actually better for me than having to listen to a live broadcast for 10 hours.

 

[Sasha]

IIRC, they're usually pretty quick at getting these things up on YouTube.

 

[Sasha]

http://www.occupycfs.com/2016/05/18/cfsac-comments-terri-wilder/

 

[mango]

http://www.occupycfs.com/2016/05/18/cfsac-comments-terri-wilder/

Wow... I'm at a loss for words... absolutely brilliant! Wow... (Totally deserves its own thread!)

 

[Sasha]

Wow... I'm at a loss for words... absolutely brilliant! Wow... (Totally deserves its own thread!)

It's totally got one (or at least, I've started one for all CFSAC testimony and that's the first one).

 

[Comet]

http://www.occupycfs.com/2016/05/18/cfsac-comments-terri-wilder/

So powerful.

 

[dancer]

Any other testimonies posted anywhere? Anyone listen in? Any other tidbits? I checked twitter and didn't see much. I didn't try listening in with the phone - felt too difficult today... I know the lack of webinar audio was a problem, but I was hoping for a bit of news.

 

[Sasha]

I just received this email from CFSAC but I've no idea why - I couldn't hear any of the meeting so I don't know what it refers to.

As follow-up to the May 18, 2016 CFSAC webinar, the following information is being provided by FDA.

On March 8, 2016, a Pharmacy Compounding Advisory Committee meeting was held. D-ribose was discussed at the meeting and was nominated for inclusion on the section 503A bulk drug substances list for use in compounding for use in the treatment of heart disease and ME/CFS.

A link to the 2016 Meeting Materials for the Pharmacy Compounding Advisory Committee meeting is below:

http://www.fda.gov/AdvisoryCommitte...acyCompoundingAdvisoryCommittee/ucm486094.htm