CFSAC Meeting Dec. 3rd & 4th, 2014

[Wally]

I lost audio.....again.

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.

@OneWaySurvival,
Thanks for the information on how to reconnect to hear the meeting. Was this instruction as to how to reconnect if audio is lost provided by the HHS as part of the webinar instructions?

When I followed One Way Survival's instructions to reconnect, I now have a rolling screen showing the speaker's testimony in written form. Has the rolling screen been available during the entire webinar? If no, does anyone know when (time) this screen became available during the meeting?

 

[OneWaySurvival]

@OneWaySurvival,
Thanks for the information on how to reconnect to hear the meeting. Was this instruction as to how to reconnect if audio is lost provided by the HHS as part of the webinar instructions?

When I followed One Way Survival's instructions to reconnect, I now have a rolling screen showing the speaker's testimony in written form. Has the rolling screen been available during the entire webinar? If no, does anyone know when (time) this screen became available during the meeting?

Wally, this happened to me too. (getting the scrolling words only after losing audio and hitting pause/play)
I then figured out that this is the Closed Captioning feature that can be toggled on/off by hitting the little "CC" button on the bottom right of the screen. I suppose it's been available since the beginning.

The CC can be sort of humorous at times b/c they can't keep up with the medical terminology, so that's a nice bonus during this depressing occasion known as CFSAC.

 

[Nielk]

Everyone is complaining that they keep losing the feed. This is unacceptable. It is hard enough for sick people to try to follow and concentrate but having this poor quality of webcast is not right.

 

[Wally]

Another question for any Forum members who asked for information from the CFSAC/NIH/HHS regarding this webinar.

Have you been dropped by the CFSAC/NIH/HHS e-mail list and been required to reapply to be on this list?

Here is the e-mail that I received from CFSAC/NIH/HHS with information on the links to connect into this webinar. The links in this e-mail did not work. I found the link to the webinar on this Forum via a link that Nielk added to her post about this meeting. (Thank you Nielk - perhaps the HHS could hire you to insert correct links in e-mails sent to the public.)

Here is the e-mail I received from the CFSAC/NIH/HHS on Tuesday, December 2, 2014.

CFSAC Webinar Access Information

OS OPHS CFSAC (HHS/OPHS) to you (Bcc) + 1 moreshow details

To access the December 3-4, 2014 CFSAC webinar, please use the following URL:
www.hhs.gov/live<http://www.hhs.gov/live>. There is no dial-in information
required to view the event. Please confirm that your computer
speakers/headphones are not muted and note that, if you use a VPN connection,
satellite internet, or dial-up connection to view the event, you may experience
some latency. For more instructions, please visit www.http://blsmeetings.net/CFSAC<http://www.http:/blsmeetings.net/CFSAC>.


Thank you,

________________________________________________________
The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

[Wally]

Everyone is complaining that they keep losing the feed. This is unacceptable. It is hard enough for sick people to try to follow and concentrate but having this poor quality of webcast is not right.

@Nielk,
I agree with you and I think it is a good idea that these problems are being captured in real time here on the Forum. This is one of the reasons I am replying to multiple messages, as well as adding questions, so we can capture how this webinar is being presented and received by the public. If anyone is able to capture video of their computer screen while this meeting is going on and can post it here that would be a great to add to the comments that appear in this thread. I am not very tech savy on how such a video can be posted, but if you have made a video and don't know how to post it, you can reply to this post or PM me and I will figure out the best way to do this.

 

[OneWaySurvival]

By the way, Wally... Instructions were not provided on the pause/play trick or the CC toggling...I had to dink around to figure all this out on my own. This whole thing has been very confusing to follow. If it weren't for Catly, I would still be trying to figure out how to see the behind-the-scenes broadcast that is only available to the presenters and CFSAC members.

As patients, we only have access to audio and the slides they show us.

Also, I made a joke above about the imperfect CC offered and the discouraging nature of these CFSAC meetings for us patients. I hope I didn't offend anyone. I'm just trying to keep a sense of humor while I watch helplessly as these very important discussions by CFSAC get completely ignored and dismissed by the United States Health Secretary. Thank you to the members of CFSAC who do care, and who are trying hard to help us. Here's to hoping a breakthrough is imminent.

 

[Nielk]

@Nielk,
I agree with you and I think it is a good idea that these problems are being captured in real time here on the Forum. This is one of the reasons I am replying to multiple messages, as well as adding questions, so we can capture how this webinar is being presented and received by the public. If anyone is able to capture video of their computer screen while this meeting is going on and can post it here that would be a great to add to the comments that appear in this thread. I am not very tech savy on how such a video can be posted, but if you have made a video and don't know how to post it, you can reply to this post or PM me and I will figure out the best way to do this.

Unfortunately, I too am not tech savvy. I wouldn't know where to start with videotaping.

 

[Wally]

I am glad the question was asked by the Chair of this meeting to Suzanne Vernon/Carol Head regarding the "other" biobanks/registries that have been or are being developed. I realize that Suzanne Vernon may believe the Solve ME/CFS BioBank is the "best" biobank/registry, but I wonder if this statement would be supported by other experts in the ME/CFS community.

 

[Nielk]

Lori Chapo's testimony HERE.

 

[Nielk]

Thank you to all the advocates who testified today, You all did a fantastic job.

 

[Mya Symons]

Next is Jeanette Burmeister: Discussing her FOIA request and successful lawsuit, plus attorney fees won.

HHS wasted time and government money by failing to act as required in response to the FOIA and lawsuit.

They were in violation of law by failing to disclose the requested information.

They still have not fully complied, and she must ask the court again to enforce the order or find them in contempt of the court.

This is absolutely mind boggling to me. One government agency having to sue another with tax-payer money for some documents they had a legal obligation to turn over. WTF?

What are they trying to hide? Did they misappropriate money designated for ME/CFIDS research again? Somebody please explain this to me. It is so illogical that right now I can't even begin to understand.

 

[Wally]

This is absolutely mind boggling to me. . . . Somebody please explain this to me. It is so illogical that right now I can't even begin to understand.

@Mya Symons,
You are not alone in finding the behavior of the HHS to be disgraceful and mind boggling. Perhaps these photos will express the sentiment of many in the ME/CFS community.

 

[Nielk]

2nd day of the CFSAC meeting starting in 10 minutes HERE.

Today's agenda

12:30 p.m. Call to Order, Roll Call – Susan M. Levine, M.D., Chair
Webinar Logistics – Barbara F. James, M.P.H., Senior Public Health Advisor

12:40 p.m. Opening Remarks – Susan M. Levine, M.D., Chair

12:45 p.m. Agency Updates – CDC/NIH/HRSA

1:15 p.m. Public Comment – Public

1:45 p.m. Pathways to Prevention (P2P) in the Treatment of Chronic Pain Report – Susan M.
Levine, M.D., Chair

2:00 p.m. Break

2:15 p.m. P2P Workshop on Advancing the Research on ME/CFS Report– Robert E. Miller, M.D., P2P Member

2:30 p.m. Institute of Medicine Report Rollout – Susan M. Levine, M.D.

4:45 p.m. Review of Next Meeting Agenda and Wrap Up – Susan M. Levine, M.D.

5:00 p.m. Adjourn

 

[Wally]

Does anyone who is trying to listen to the meeting today (Thurs) have sound? I was connected and I had background music and now the sound is gone (time 9:32 PST).

Edit - sound back at 9:35.

 

[Nielk]

My sound is on but, is so faint. It is a strain to try to follow.

 

[Valentijn]

I missed a bit due to a phone call, but it sounds like Mary Ann Fletcher is getting $1.9 million over 4 years to study causes and treatments of relapses. This could be very useful in countering the GET bullshit.

 

[Wally]

10:00 am (PST) another "technical glitch" in delivery of the webinar to the public and to the committee.

 

[Valentijn]

HRSA (Health Resources and Services Administration) is getting involved in looking into "chronic fatigue". It's not really their usual area - they deal with vulnerable groups mostly, and some other stuff.

And she kept saying "chronic fatigue", never ME or CFS.

 

[OneWaySurvival]

NIH is granting $1.9MM (million) to Mary Ann Fletcher at Nova Southeastern. (over 3 years?) Studying gender differences in their response to CFS, exercise, etc.

also $3.2MM to Jared Younger (sp?) over 5 years to study biologic markers (tracking fatigue and cytokines day-to-day to understand correlation between the two)

also $3.3MM to Leonard Jason over 5 years studying biological and psychological factors to determine risk factors in which college age participants who did and did not go on to acquire ME/CFS following mono.

OK, BUT WHAT ABOUT DR. IAN LIPKIN'S STUDY?

WILL SOMEBODY ON THE CFSAC OR IN THE PUBLIC ASK WHY THE NIH TURNED DOWN HIS STUDY APPLICATION TWICE? Can we try to get a straight answer on this today, during the CFSAC meeting while it is being recorded?

 

[Valentijn]

Patient advocate caller Billie Moore: Talking about the CFSAC recommendations being falsified and published. CCC mention was removed from all, and one recommendation was removed in its entirety, advocating equal funding for ME/CFS compared to other diseases based on disease burden and cost.

The falsification was illegal and done by federal employees Nancy Lee and Gaylan(?) Marshall. It was corrected on the web, but not letter of correction was posted nor delivered to some guy in charge of things who was sent the initial falsified document.

HHS needs to listen to CFSAC and the public, not oppose us. CFSAC is merely a pretense of accommodating patient needs.