Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

UPDATE: My Email to CFSAC’s DFO Asking if HHS Edited the CFSAC Working Group P2P Document

Discussion in 'Action Alerts and Advocacy' started by Jeannette Burmeister, Jan 12, 2015.

  1. Jeannette Burmeister

    Jeannette Burmeister

    Messages:
    38
    Likes:
    146
    Just wanted to share this email that I sent to Barbara James (CFSAC’s DFO) at Barbara.James@hhs.gov regarding a potentially serious concern with respect to CFSAC’s official P2P submission. Hopefully, we’ll get an answer before the meeting on Tuesday.

     
    snowathlete, Woolie, RustyJ and 13 others like this.
  2. Marylib

    Marylib Senior Member

    Messages:
    439
    Likes:
    41
    New Zealand
    Thank you, Jeannette. As always.
     
  3. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,608
    Thanks, Jeannette.

    If this turns out to be true, isn't this a gross violation? This would be more evidence that this whole charade is completely controlled by HHS.

    How do we know that HHS will not have input into the final report too?
     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    669
    Likes:
    1,405
    Illinois, USA
    F! O! I! A! F! O! I! A!
    (yes, I know my cheerleading is a bit lame these days, but I love it that there are more good people umm... encouraging public servants to do the right thing)
     
  5. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,608
    I am very concerned about this and have sent out an e-mail as well:

     
  6. Jeannette Burmeister

    Jeannette Burmeister

    Messages:
    38
    Likes:
    146
    Below is Ms. James' reply to my email:

    And here is my response:

     
    Sasha, Roy S, GalaxiiGrl and 2 others like this.
  7. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,608
    This is really disturbing because here we are, going into the CFSAC meeting where they will be working on finalizing CFSAC official comment to the P2P, yet we don't know how much of it has been redacted by HHS.

    This is supposed to be a comment by the voting non-government members! Has CFSAC been forced to become a mouthpiece for HHS?
     
    Roy S and Valentijn like this.
  8. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    Do you have any particular suggestions on submitting requests? Any advantage to submitting via mail as opposed to via the HHS website? Any key phrases that need to be included to qualify for a fee waiver?

    I'm working on a request for the P2P draft report comments. I'm thinking about a request to find out how much money the government spent fighting @Jeannette Burmeister 's FOIA request, and just who ordered it.
     
  9. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    669
    Likes:
    1,405
    Illinois, USA
    @Jeannette Burmeister
    I'd suggest making it clear that the appropriate congressional appropriations and oversight committees will be informed as well.

    Unless you don't want to make anybody... uncomfortable. :)
     
  10. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    669
    Likes:
    1,405
    Illinois, USA
    @jimells
    Sorry, I'm not the right one to ask about that. Jeanette and Jennie, among others, have successful recent experience breaching the blockades.
     
  11. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    FOIA request submitted via website 1/13/2015:

    Regarding the "2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", I request the release of the public comments on the "Draft Report". A reference to these comments may be found at:

    https://prevention.nih.gov/programs...rkshops/me-cfs/workshop-resources#draftreport

    Public comments on the draft report will be accepted from Thursday, December 18, 2014 through Friday, January 16, 2015

    I request that the documents be released after the close of the comment period.

    I request that the documents be mailed to me as computer files on a CD.


    ------------
    I request a fee waiver because disclosure of the information is in the public interest.

    Release of these documents is in the public interest because they will help advocates and the general public to understand how the public comments influenced the final report. The public comments need to be released because they are public, and advocates need to understand the public's reaction to the draft report in order to further their advocacy. The general public has a direct interest in knowing whether or not public comments actually influenced the report writers and the policies that result from the report.

    Information obtained from these documents will be disseminated to the patient commnunity and
    the general public via the "Phoenix Rising" internet forum. I have been an active participant on this forum, where I have posted over 500 messages to date.

    I have no commercial interest that will be advanced by the release of the documents.


    Now we wait...
     

See more popular forum discussions.

Share This Page