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

[Jeannette Burmeister]

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.

Dear Ms. James,

I heard that the CFSAC P2P Working Group had prepared a document for official submission regarding P2P to be discussed at the upcoming CFSAC meeting and that this report was heavily edited by HHS before being sent to the full committee. Is that true? If it is, then I believe the public should see both the original Working Group document prior to HHS’s editing and the document that went to the full committee.

I look forward to your reply.

Sincerely,
Jeannette Burmeister

 

[Marylib]

Thank you, Jeannette. As always.

 

[Nielk]

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?

 

[Roy S]

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)

 

[Nielk]

I am very concerned about this and have sent out an e-mail as well:

Dear Ms. James,

It has come to my attention that the document prepared by CFSAC's P2P Working Group to the committee might have been edited by HHS before it was sent out to committee members. I am very concerned about this possibility and would appreciate a reply from you as soon as possible. The CFSAC meeting tomorrow is for discussion of the formal comment from CFSAC to the P2P. This will be based on the P2P Working Group report. In the event that there was any hampering of that report, I feel that the public has a right to know.

Thank you for your consideration.

Sincerely,

Gabby Klein

 

[Jeannette Burmeister]

Below is Ms. James' reply to my email:

The draft comments, which will be finalized during tomorrow's meeting, will be posted to the CFSAC website after the Secretary has signed off on them.

And here is my response:

Dear Ms. James,

Thank you for your reply. I am afraid, however, that it was not responsive to my question.

So, let me ask again: Was the document that the CFSAC P2P Working Group had prepared as draft comments to be discussed at the CFSAC meeting and, once finalized, to be submitted as official CFSAC P2P comments edited by HHS before being sent to the entire committee? If so, would you please make both versions of the document available.

CFSAC patient representative, Donna Pearson, sent an email to patients who had asked similar questions, in which she gave her view of the events surrounding the P2P Working Group document and the edits made to that document by HHS. Therefore, I am also requesting that all emails between the Working Group and HHS staff concerning the Working Group document and the HHS edits thereto be made available, so that the public can fully understand what occurred.

I am looking forward to your responsive reply.

Sincerely,

Jeannette Burmeister

 

[Nielk]

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?

 

[jimells]

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)

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.

 

[Roy S]

@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.

 

[Roy S]

@jimells
Sorry, I'm not the right one to ask about that. Jeanette and Jennie, among others, have successful recent experience breaching the blockades.

 

[jimells]

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...