Discussion/Comments re 12/13/2017 and 12/14/2017 CFSAC Meetings

[cb2]

I wonder if we can find a replay ?

 

[DMP100]

Public Access to 12/13/2017 CFSAC Meeting has now ended.

The voting members of CFSAC will reconvene this afternoon for closed session to receive “Ethics” training.

I would like to see the training materials used for this “Ethics” training. I wonder if a FOIA Request would be needed to obtain these documents or if CFSAC would make this information publicly available on their website? I will let you know if I am able to obtain an answer to this question.

Wally

Hi Wally,

The material provided was nothing new for CFSAC members. As "Special Government Employees," we are required to do standard HHS ethics training every year. In a nutshell, we can't participate in decisions that could result in financial gain directly or indirectly in our personal or work lives, we can't accept gifts, and so on. We are also limited for a certain period of time after our service ends.

FYI, At Terri Wilder's request I asked the presenting Attorney yesterday if I could share the materials, and I was told that it would be no problem. Terri now has the packet, so if you're still interested, please let one of us know. ☺

Thanks,
Donna Pearson

 

[Wally]

Hi Wally,

The material provided was nothing new for CFSAC members. As "Special Government Employees," we are required to do standard HHS ethics training every year. In a nutshell, we can't participate in decisions that could result in financial gain directly or indirectly in our personal or work lives, we can't accept gifts, and so on. We are also limited for a certain period of time after our service ends.

FYI, At Terri Wilder's request I asked the presenting Attorney yesterday if I could share the materials, and I was told that it would be no problem. Terri now has the packet, so if you're still interested, please let one of us know. ☺

Thanks,
Donna Pearson

Donna,

Thank you for contacting me. Yes, I would be interested in reviewing the packet of materials. Let me know the easiest way for you or Terri to provide me with this information.

Also, thank you for all the work you are doing and you have done in the past serving on the CFSAC Advisory Committee. You (and others) have the patience of a Saint to make it through these meetings.

Susan Kreutzer (aka Wally)

 

[DMP100]

Hi Wally,

The material provided was nothing new for CFSAC members. As "Special Government Employees," we are required to do standard HHS ethics training every year. In a nutshell, we can't participate in decisions that could result in financial gain directly or indirectly in our personal or work lives, we can't accept gifts, and so on. We are also limited for a certain period of time after our service ends.

FYI, At Terri Wilder's request I asked the presenting Attorney yesterday if I could share the materials, and I was told that it would be no problem. Terri now has the packet, so if you're still interested, please let one of us know. ☺

Thanks,
Donna Pearson

Hi again,

Terri is willing to scan and email the paperwork to you on Monday if you provide an email address.

PS To the person who asked if there would be a "replay" of the meeting, it has been recorded and is supposed to be available in segments on Youtube in a few weeks.

 

[Wally]

@DMP100 - Sent you my contact information via private conversation/message.

 

[Wally]

As promised last week in this thread, here is additional information about the NIH’s announcement re public comment period for its proposed ME/CFS C.D.E.’s for clinical research.

See, 1) https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/me-cfs-faq.pdf and 2) https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/me-cfs-overview.pdf

For additional information on how Phoenix Rising Members can work on an advocacy project to develop a group response to these proposed E.D.C.’s, see this thread at http://forums.phoenixrising.me/inde...vocacy-project-w-deadline-of-1-31-2018.56716/

Note - 1) If you leave a comment in this thread related to the topic of the NIH’s proposed ME/CFS C.D.E.’s. and 2) you want your comment(s)to be seen by the PR members who will be collaborating/working on a group response, 3) please alert “Wally” by private conversation (message) that you would like to contribute your comment/suggestion for possible consideration when this Group is reviewing/drafting a response to the NIH.

 

[Wally]

FYI - Here is the link to the recording for the 12/13/2017 and 12/14/2017 CFSAC meetings.

From: OS OPHS CFSAC
To: CFSAC-L@LIST.NIH.GOV

Link to recorded meeting
12/19/2017

Good afternoon,

As announced by CDR Gustavo Ceinos at the last CFSAC meeting held December 13-14, 2017, below please find the link to the recorded meeting. The link will be also posted on the website under meetings.

https://www.youtube.com/playlist?list=PLrl7E8KABz1ELEasMWqE4SqD2vHQjaCLD

Thank you.

The CFSAC Support Team

Email: cfsac@hhs.gov

Website: http://www.hhs.gov/ash/advisory-committees/cfsac/index.html

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

 

[Sushi]

Here is the link to Dr. Montoya's presentation--scroll to 22:36 on the timeline.

 

[Diwi9]

I'm shocked that only 13,000 people in the US are on SSDI for ME/CFS. Did I hear that statistic correctly? I have not applied as my hope has been to return to work, so far I have been unable to do so. If we have 1,000,000 sufferers in the U.S., that means only 0.013% are on SSDI. Does the SSA not audit their own data and realize how ridiculously underserved this illness community is? Meanwhile, people with ME/CFS are judged by the public as lazy and just calling themselves sick for benefits...the data does not support this stereotype.

 

[Dolphin]

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Summary

http://solvecfs.org/chronic-fatigue-syndrome-advisory-committee-cfsac-meeting-summary/