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CFSAC Webinar June 29-30 Agenda & Call-In Number

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
June 29-30, 2017 CFSAC Meeting (Webinar)

The dial-in Information for the upcoming CFSAC webinar meeting is:

Call in Number 1-888-788-9429
Participant Passcode: 4510479

Webinar
: https://www.mymeetings.com/nc/join.php?i=PWXW4299560&p=4510479&t=c

Agenda

Day 1
June 29, 2017 12:00pm – 5:00pm (EST)

12:00 p.m. Call to Order/Roll Call/Logistics
CDR Gustavo Ceinos, MPH,Designated Federal Official,Office on Women’s Health
12:15 p.m. Opening Remarks
Susan M. Levine, MD and Faith Newton, Ed.D, Co-Chairs, CFSAC
12:30 p.m. Agency Updates
Centers for Disease Control and Prevention
Food and Drugs Administration
Social Security Administration

1:30 p.m. Presentation from Liaison Organizations
Simmaron Research Inc
Massachusetts CFIDS/ME & FM Association
ME Action

2:30 p.m. Public Comments
Public
3:00 p.m. Report from the Pediatric Education Working Group
Faith Newton, Ed.D
3:45 p.m. Break (15 minutes)
4:00 p.m. Adult/Pediatric ME/CFS Research Update
Susan M. Levine, MD
Faith Newton, Ed.D
5:00 p.m. Adjourn

Day 2

June 30, 2017 12:00pm – 5:00pm (EST)

12:00 p.m. Call to Order/Roll Call/Logistics
CDR Gustavo Ceinos, MPH, Designated Federal Official, Office on Women’s Health
12:15 p.m. Opening Remarks
Susan M. Levine, MD and Faith Newton, Ed.D, Co-Chairs, CFSAC
12:30 p.m. Agency Updates
National Institutes of Health
Health Resources & Services Administration
Agency for Healthcare Research & Quality

Department of Veteran Affairs
1:30 p.m. Public Comments
2:00 p.m. Report from the Medical Education Working Group
Gary Kaplan, MD, Working Group Chair
3:00 p.m. Break (15 minutes)
3:15 p.m. Discussion Recommendation Medical Education Working Group
CFSAC Members
4:00 p.m. Discussion CFSAC SOP
CDR Gustavo Ceinos, MPH
5:00 p.m. Adjourn
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
June 29-30, 2017 CFSAC Meeting (Webinar)

The dial-in Information for the upcoming CFSAC webinar meeting is:

Call in Number 1-888-788-9429
Participant Passcode: 4510479

Webinar
: https://www.mymeetings.com/nc/join.php?i=PWXW4299560&p=4510479&t=c

Agenda

Day 1
June 29, 2017 12:00pm – 5:00pm (EST)


12:00 p.m. Call to Order/Roll Call/Logistics
CDR Gustavo Ceinos, MPH,Designated Federal Official,Office on Women’s Health
12:15 p.m. Opening Remarks
Susan M. Levine, MD and Faith Newton, Ed.D, Co-Chairs, CFSAC
12:30 p.m. Agency Updates
Centers for Disease Control and Prevention
Food and Drugs Administration
Social Security Administration

1:30 p.m. Presentation from Liaison Organizations
Simmaron Research Inc
Massachusetts CFIDS/ME & FM Association
ME Action

2:30 p.m. Public Comments
Public
3:00 p.m. Report from the Pediatric Education Working Group
Faith Newton, Ed.D
3:45 p.m. Break (15 minutes)
4:00 p.m. Adult/Pediatric ME/CFS Research Update
Susan M. Levine, MD
Faith Newton, Ed.D

5:00 p.m. Adjourn
Bump, this begins in a few hours.
 

LaurelW

Senior Member
Messages
643
Location
Utah
And once again they have proven that they don't care to make this accessible to patients who can't spend hours on the phone. I don't get why they can't just include the sound with the webinar like everyone else in the world does.
 

Sing

Senior Member
Messages
1,782
Location
New England
I imagine that when the world is finally over, its rise, fall and dramas complete, CFSAC will still meet the following year. Sue Levine may still be nobly trying to chair this committee, there still won't be a quorum and the CDC will still not have changed its website information. The recommendations will still be the same, but this time the government and its agencies will have the first good excuse they have ever had--they no longer exist.

So, short of that, I decided to do something more productive with the day, being sorry that we haven't had a viable foothold in the federal realm. I'd have liked to been able to listen and find some useful information to report back, but for me there either isn't any or the noise-to-signal ratio is too high to make it worth my effort in finding it. I wish this were different for all of us.
 

Nielk

Senior Member
Messages
6,970
The new feature of allowing questions from stakeholders listening in is the only positive development at CFSAC meeting.

Some quality questions were met with typical government speak.

Question to CDC whether stakeholders will have a chance to review the new info to be posted on CDC website was met with - it's all based on stakeholders input - so no need to review.

Question to FDA asking what their process for stakeholders input information ME/CFS was met with - we already know what stakeholders think so no need for further input and even though we agree that stakeholders input is vital, there is no process I place for that (and we don't plan on changing that).

Question to CDC about tracking the disease ME/CFS like they track Ebola and AIDS was met with - it is it the job of federal government to track disease. The law says that it is the states that need to track these disease and report them to CDC. (But who tell the states which diseases to track?)

Question about US funding trial in Rituximab was met with - Vicky Whittmore stating that the Norwegians are almost done with their trial and when they have their data, they will report back to NIH and FDA. (Not really answering the question)

Question about having the new centers of excellence in the US start trials for Rituximab was met with - they will not be able to these tripe of trials for first 5 years. Although other individual investigators could apply for NIH grants to study Ritux. (We know what the chances of these being approved are)

In addition, they announced that they have not selected new voting members because of the change in administration - even though some of these slots have been empty for over a year.

There was a long conversation from a caller stating that she applied for a FOIA to SSA over a year ago and did not receive anything from them. She also said that emails to SSA have been ignored. She was told to email it to CFSAC. She said she did yesterday and day before. They said they never got it .... (Gov't speak).

CDC stated (proudly) that they have published their Methods pAper on the CDC multi site study. This is 6 years since this study started and all they have published is their method of study! In addition, when asked about when data papers will be published, they had no timeline.

CDC did say that the NK cell function part of the study has been approved and started.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
June 29-30, 2017 CFSAC Meeting (Webinar)

The dial-in Information for the upcoming CFSAC webinar meeting is:

Call in Number 1-888-788-9429
Participant Passcode: 4510479

Webinar
: https://www.mymeetings.com/nc/join.php?i=PWXW4299560&p=4510479&t=c

Agenda


Day 2
June 30, 2017 12:00pm – 5:00pm (EST
)

12:00 p.m. Call to Order/Roll Call/Logistics
CDR Gustavo Ceinos, MPH, Designated Federal Official, Office on Women’s Health
12:15 p.m. Opening Remarks
Susan M. Levine, MD and Faith Newton, Ed.D, Co-Chairs, CFSAC
12:30 p.m. Agency Updates
National Institutes of Health
Health Resources & Services Administration
Agency for Healthcare Research & Quality
Department of Veteran Affairs

1:30 p.m. Public Comments
2:00 p.m. Report from the Medical Education Working Group
Gary Kaplan, MD, Working Group Chair
3:00 p.m. Break (15 minutes)
3:15 p.m. Discussion Recommendation Medical Education Working Group
CFSAC Members
4:00 p.m. Discussion CFSAC SOP
CDR Gustavo Ceinos, MPH
5:00 p.m. Adjourn

Bump, this begins in a few hours.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
A passcode is given {i.e., 4510479} to establish a telephone connection for the Conference audio only.

The web link is to let you separately view the slides with no audio...no passcode needed...
Phone connection is working, but unlike yesterday the web link not working...

Operator just said we need to enter conference number PWXW4299599 for web link...