CFSAC Meeting Dec. 3rd & 4th, 2014

[Wally]

Is anyone getting video, or just a slide?

Just a slide and "voice". Stating that this is a webcast is deceiving. All it is is an audio that we can listen it to, if we have a computer. There doesn't seem to be a dial in capability.

In addition, the slides are jumpy and not clear at all.

The resolution is REALLY low. And the audio has way too much background noise.

This is such a challenge to follow. I can barely hear it.

If you can use headsets, it will be much easier to listen in.

Is anyone able to film what is appearing on their computer screen, so there will be a record to show how this webinar is being presented and received by people who are watching/listening to this show via the Internet. I know that eventually the video should show up on the HHS website, but I believe in the past this may have taken several weeks and it might be helpful to show the quality (or lack thereof ) of this webinar through the eyes/ears of patients watching from their computers.

I tried to video using my phone but I am having technical difficulties with the video recording feature on my phone.

 

[OneWaySurvival]

A woman named Laurie Kroger from PANDORA, but speaking as a patient.

Upset about shenanigans pulled by officials.

Criticizing funding, silencing of patients, failure to help patients, and initiatives causing harm to patient.

Wants the name "ME" and the CCC definition, clinics of excellence, bio education of ME in medical schools, change websites to reflect the complex reality of the disease, include more patient and expert input, etc.

I believe that I heard Laurie Kroger say that she is the HEAD of PANDORA.

She spoke as an individual patient, not in the role as PANDORA head, and I must say she did an excellent job on her testimony; she spoke with passion and was very critical of the HHS.

 

[OneWaySurvival]

Is anyone able to film what is appearing on their computer screen, so there will be a record to show how this webinar is being presented and received by people who are watching/listening to this show via the Internet. I know that eventually the video should show up on the HHS website, but I believe in the past this may have taken several weeks and it might be helpful to show the quality (or lack thereof ) of this webinar through the eyes/ears of patients watching from their computers.

Good idea, Wally.

This webinar style is TERRIBLE. The resolution is so low that it very hard to read. Having audio (and blurry slides) is very challenging to follow, and NOT a good substitute for video.

HHS, if you are reading...please go back to live, streamed VIDEO for CFSAC. I would like to see these people on camera as they speak about M.E. research and strategies that are critical to our lives.

 

[Denise]

HHS, if you are reading...please go back to live, streamed VIDEO for CFSAC. I would like to see these people on camera as they speak about M.E. research and strategies that are critical to our lives.

Just FYI - there is no in person meeting this time - everyone is taking part via webinar from different locations so there is nothing to livestream.

 

[OneWaySurvival]

What's this about an "Adobe-connect broadcast"?

A gentleman just came on during the break asking if so and so was still on the line, and then he mentioned an Adobe-connect broadcast.

Is anybody connected to that part of the webinar? Do I have to install an update to Adobe to have this part of the webinar come up automatically?

 

[Wally]

Just FYI - there is no in person meeting this time - everyone is taking part via webinar from different locations so there is nothing to livestream.

Is there anything in writing or in a video that explains why this CFSAC meeting is being conducted from multiple locations rather than at one meeting site?

 

[catly]

Is there anything in writing or in a video that explains why this CFSAC meeting is being conducted from multiple locations rather than at one meeting site?

I seem to recall seeing something in the past, can't remember where, that they were going to 2 webinar meetings and 2 in person per year for cost reasons.

Also to another comment above, the committe members have a different access to the webinar which allows then to make comments etc to each other that we can't see.

Finally, I tried to log on on my phone but it said the version of Adobe needed is not available for the I-Phone. Works on my computer and audio is pretty good but visual is next to impossible to read.

 

[Denise]

Is there anything in writing or in a video that explains why this CFSAC meeting is being conducted from multiple locations rather than at one meeting site?

I don't know of anything in writing, etc. - from what I understand each committee participant has called in from their individual locations. Again - my understanding is that webinars are supposed to be a government-wide cost-cutting measure to part to minimize travel expenses.

 

[Wally]

Are people who are listening to this meeting online having trouble following who is speaking during the meeting?

One of the speakers (speaking at 3:18 pm EST) appeared to have trouble figuring out who was speaking.

Does anyone know which people are in a room together for this meeting or is everyone who is speaking at this meeting connected remotely? I missed the first hour of the meeting, so perhaps this was covered at the beginning of the meeting?

 

[Nielk]

Jeannette Burmeister's testimony HERE.

 

[Wally]

I don't know of anything in writing, etc. - from what I understand each committee participant has called in from their individual locations. Again - my understanding is that webinars are supposed to be a government-wide cost-cutting measure to part to minimize travel expenses.

@Denise,
Thanks for your response, I was apparently typing a follow-up question when you were responding.

It would be interesting to know if these "cost cutting" measures are being implemented by the HHS/NIH for other diseases where their meetings are made available to the public.

 

[Nielk]

I lost audio.....again.

 

[Denise]

@Denise,
Thanks for your response, I was apparently typing a follow-up question when you were responding.

It would be interesting to know if these "cost cutting" measures are being implemented by the HHS/NIH for other diseases where their meetings are made available to the public.

Yes - other meetings (within and outside of HHS) are holding meetings via webinar.
From what I can tell, as of last year one CFSAC meeting per year will be in person and the other via webinar.

 

[Denise]

I lost audio.....again.

Me too - SO frustrating!

 

[catly]

I lost audio.....again.

Me too, been off for awhile.

 

[OneWaySurvival]

Me too, been off for awhile.

Try hitting the "pause" button on lower left of presentation screen, then hit "play" button when it takes you back to the HHS blue screen.

This has worked for me both times I lost audio, and I was only off-line for a minute or less both times.

 

[Nielk]

Joe Landson's testimony HERE.

 

[Wally]

Yes - other meetings (within and outside of HHS) are holding meetings via webinar.
From what I can tell, as of last year one CFSAC meeting per year will be in person and the other via webinar.

@Denise,
Do you know of any guidelines that are used to determine how these "cost cutting" measures are to be implemented? In other words, does the Office of Women's Health have the same requirements for using a webinar vs. an in person meeting as other Departments within the NIH/HHS?

 

[Denise]

@Denise,
Do you know of any guidelines that are used to determine how these "cost cutting" measures are to be implemented? In other words, does the Office of Women's Health have the same requirements for using a webinar vs. an in person meeting as other Departments within the NIH/HHS?

I do not know the answer @Wally. Wish I did. At one point I asked for the memo or directive about this but I have never received it. If someone does get it please share it!

 

[OneWaySurvival]

Also to another comment above, the committe members have a different access to the webinar which allows then to make comments etc to each other that we can't see.

OK, thanks catly. That makes sense. I won't bother updating my Adobe.