Final P2P report on pause

[Denise]

"P2P Mistrial
Posted on April 3, 2015 by Jennie Spotila
Yesterday, the following notice appeared on the P2P ME/CFS website in a red box:

Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we have paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report. Once the panel has been able to deliberate, the publication process will resume, and the ODP will announce a new timeline on our website. (emphasis added)

First, let me acknowledge NIH’s public admission of the gross negligence I pointed out in my FOIA appeal. It is never easy to admit that you messed up. And I appreciate NIH trying to remedy the problem. However, this proposed fix is completely inadequate.

Public comments on the P2P report should be considered equally. They should be compared and contrasted, and given equal weight. By failing – through some kind of monumental mistake – to provide the Panel with ALL of the comments at the same time, the missing comments will automatically be considered differently than the comments sent to the Panel in January. ..."

Read the entire post here:
http://www.occupycfs.com/2015/04/03/p2p-mistrial/

 

[Esther12]

Weird.

Lets hope it's not a comment from Wessely that'll screw us!

 

[Kati]

Weird.

Lets hope it's not a comment from Wessely that'll screw us!

Very shocking but why should we be surprised?

They probably wanted extra time to digest the IOM report so their report would not appear so far from reality and credibility.

i wonder if we can find out through FOIA what exactly happened.

 

[WillowJ]

Weird.

Lets hope it's not a comment from Wessely that'll screw us!

Jennie had mentioned comments from CFSAC, the Massacusets CFIDS/ME & FM Association, and Mary Dimmock as being missing. I haven't read everything (that was sent in to such public repositories), but I prioritized the org comments and the CFSAC and Mass. org comments looked valuable to me.

The official announcement mentioned Mary Dimmock's comment (I guess they were too embarrassed to mention CFSAC and any org!).

Of course it's possible that some psychobabblers sent in comments, too.

 

[Esther12]

I was kind-of joking. Largely. With a hint of real terror.

 

[Wally]

"P2P Mistrial
Posted on April 3, 2015 by Jennie Spotila
Yesterday, the following notice appeared on the P2P ME/CFS website in a red box:

Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we have paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report. Once the panel has been able to deliberate, the publication process will resume, and the ODP will announce a new timeline on our website. (emphasis added)

First, let me acknowledge NIH’s public admission of the gross negligence I pointed out in my FOIA appeal. It is never easy to admit that you messed up. And I appreciate NIH trying to remedy the problem. However, this proposed fix is completely inadequate.

Public comments on the P2P report should be considered equally. They should be compared and contrasted, and given equal weight. By failing – through some kind of monumental mistake – to provide the Panel with ALL of the comments at the same time, the missing comments will automatically be considered differently than the comments sent to the Panel in January. ..."

Read the entire post here:
http://www.occupycfs.com/2015/04/03/p2p-mistrial/

How very interesting. I have received no notification via the the HHS listserv (or in any other form of communication from the HHS) of this announcement.

Today's date is April 4th at 9:45 am (PST). The date the HHS ODP P2P page was updated with this information was on April 2nd. I wonder if I would have ever known about this change directly from the HHS. Good thing that one of the problems with this illness is the inability to sleep because I went online to distract myself and found this announcement posted on the PR Forum.

Perhaps the HHS believes that Jennie Spotila's blog is just as an effective communication tool as their listserv or perhaps they were too embarrassed to spread the news wide and far thru their listserv or perhaps they misplaced the listserv along with those pesky Public Comments.

I wonder . . . was the HHS ever going to make an effort to let me know that their FOIA Response, to my FOIA request, was incomplete?

Note to the HHS, there are over 20 million people with this illness, which means that there could be 20 million pairs of eyes and ears watching and listening around the clock (even during an Easter holiday) to what moves you may or may not be making on the M.E./C.F.S. Chessboard.

Thirty years is a long time to stand in line waiting for your help. Guess what? We are no longer willing to stand at the back of the line.

This time we are showing up to play with our outside voices and a whole pack of friends to sniff out the truth 24/7.

Game On!

Lest we forget, let us role the clock back and see the journey we have been on with the NIH ODP P2P process and Public Comments.

1) See, http://forums.phoenixrising.me/inde...ort-are-due-by-16-jan-2015.34518/#post-537268

Esther12 said: ↑
Does anyone know what's happening with the full report, rather than just the executive summary? Will the full report simply be this and the evidence review, and maybe public comments too? Or are they writing the full report right now, and getting comments in earlier might help improve that?
Anyone familiar with the process?

@ Esther, Not sure if you saw my earlier post (Reply #214 on page 11 at http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-11#post-537036). I don't have answers to your questions but since I have similar questions to yours, I have written to the Director of the ODP, David Murray, to see if we can get some clarification on this process. If you have other questions that were not included in my e-mail you might also want to write to him.

Wally, Dec 20, 2014 Edit Delete Report
#4 + Multiquote Reply

2) See,

Hope123 said: ↑

1. I'm glad that people are following up on this issue.
   
   The piece about not allowing access to public comments because personal information might be included in them is just a lame excuse. The multiple times I have written in (CFSAC, FDA, AHRQ etc.), there have been fair warning that the notes will be public and not to put in personally identifying information. In some cases, the agency involved even has a note that if people wish their comments to be anonymous they should tell staff when they submit so no name is put with the submission on the website.
   
   If NIH during the P2P process really was sensitive to the needs to the public, they should have put in these statements when soliciting comments, like other agencies have done.
   
   @@Hope123, I agree it sounded a bit odd to me when I was told that they were not planning to publicly release these documents or even retain them. I thought there had been some type of instruction on the NIH/ODP/P2P website advising people not to include personal information in their Public Comment. However, the instruction for submitting Public Comments in response to the Draft Report longer appears on the website (perhaps this is because the Public Comment period ended on 1/16/2015) or perhaps I just imagined seeing this.
   
   The upside is that this potential problem was caught and the HHS, the NIH and the ODP were put on notice that the Public Comments were of interest to the Public and access to the documents would be expected. Perhaps the ODP staff person that communicated this information to me was not aware of the FOIA process and this is why my repeated inquiries were passed on to an ODP Deputy Director to address.
   
   
   P.S. I am also in the process of getting all the written documents submitted to the ME/CFS IOM Committee "by any organization or by individuals who are not officials, agents or employees of the institution". I also plan to make those documents available for viewing. Right now it looks like there are about 258 submissions. While the IOM Report will be publicly released on 2/10/2015, the Committee/Project will not come to an end until 3/22/2015. I have been told by IOM Staff assigned to the ME/CFS Project that information can be submitted thru 3/22/2015. To cover all the bases, there will be two requests made for documentation - one now and one after 3/22/2015.
   
   Wally, Jan 23, 2015 Edit Delete Report
   #17 + Multiquote Reply

1. http://forums.phoenixrising.me/inde...e-due-by-16-jan-2015.34518/reply&quote=549531

3) See, http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-34#post-545330

Here is the current status of my request to the HHS/NIH/ODP regarding Public Comments submitted in response to the ME/CFS P2P Draft Report and P2P Workshop.

Fwd: Outstanding Questions re Public Comments submitted in response to the NIH/ODP ME/CFS P2P Workshop and Draft Report

Tue, Jan 13, 2015 8:08 am
From ****
To watsonpa watsonpa@od.nih.gov
Cc david.murray2 david.murray2@nih.gov, francis.collins francis.collins@nih.gov
Dear Ms. Watson,

This e-mail is a follow-up to the voice mail message I left for you yesterday (1/12/2015) asking for the status of a response from the HHS/NIH to my questions regarding the handling of Public Comments to the Draft ME/CFS P2P report and the ME/CFS P2P Workshop.

As identified in my e-mails attached below, my questions regarding Public Comments submitted in relation to the HHS/NIH/ODP ME/CFS P2P process are still outstanding. My initial questions were sent to Dr. Murray on December 20, 2014.

On December 30, 2015, you wrote to me and provided a partial response to the questions I had asked of Dr. Murray. I phoned you on December 30, 2014 and January 2, 2015 and left voice mail messages requesting clarification of the response you provided, as well as again asking for a complete response to the questions I asked of Dr. Murray on December 20, 2014 regarding Public Comments. I also phoned Dr. Murray's office on January 2, 2015 and left a voice mail message letting him know there were questions still outstanding to the e-mail I had sent him of December 20, 2014.

On January 5, 2015, I called your office again and we were able to speak to each other. You informed me that people at the NIH were working on a response to my inquiry about Public Comments, but you had no time frame on when this response would be complete. I let you know that my questions were of interest to many others in the ME/CFS community and due to the impending cut-off time for submitting Public Comments for the P2P Draft Report, it was important that a response be received as soon as possible. I also sent a follow-up e-mail on January 5, 2015 regarding our phone conversation and the outstanding request for information about ME/CFS P2P Public Comments.

As of this morning (Tuesday, January 13, 2015), no response to the questions I have asked about ME/CFS P2P Public Comments has been received. As you are aware, the Public Comment period for the P2P Draft Report ends on January 16, 2015. I am again asking that a complete response by the HHS/NIH/ODP be provided to the questions I have asked about Public Comments received by the HHS, NIH, ODP and/or the P2P Panel as part of the ME/CFS P2P process.

Sincerely,
****

Wally, Jan 13, 2015 Edit Delete Report
#673 + Multiquote Reply

4) See, http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-34#post-545330

Wally said: ↑
Here is the current status of my request to the HHS/NIH/ODP regarding Public Comments submitted in response to the ME/CFS P2P Draft Report and P2P Workshop.

I received the following message in response to the e-mail I sent to Paris Watson - ODP/NIH this morning (1/13/2015).

FW: Outstanding Questions re Public Comments submitted in response to the NIH/ODP ME/CFS P2P Workshop and Draft Report

Tue, Jan 13, 2015 8:43 am
From Peterman Cross, Wilma (NIH/OD) [E] petermaw@mail.nih.gov
To ****
Dear Ms. Kreutzer,

The email below was forwarded to me for follow up. I would welcome the opportunity to chat with you via phone to discuss the issues you have raised. I am available today (Tuesday) at 1:30 pm or Wednesday from 1-3 pm. Please let me know if you have some availability during these times or if we need to explore additional times/dates to accommodate your schedule.

Many thanks –

Wilma Peterman Cross, M.S.
Deputy Director
Office of Disease Prevention
National Institutes of Health
6100 Executive Blvd, Suite 2B03
Rockville, MD 20852
Phone: 301.496.6614

I am currently listening to the CFSAC meeting, so I am unavailable today (1/13/2015) at 1:30 pm (EST) for a phone call with the ODP/NIH. The only time I am available tomorrow (1/14/2015) during the time period (1:00 -3:00 pm EST) Ms. Cross has provided for this phone call is 2:30 pm (EST). If there are other advocates who would like to join me in this phone call tomorrow at 2:30 pm, please PM or e-mail me at WallaceAlvinCleaver@gmail.com and I will see if a conference call can be set up for the phone call with Ms. Cross.

Wally (Susan Kreutzer)

Wally, Jan 13, 2015EditDeleteReport
#674+ MultiquoteReply

5) See, http://forums.phoenixrising.me/inde...ort-are-due-by-16-jan-2015.34518/#post-546359

Retention of Public Comments for the ME/CFS P2P Draft Executive Summary Report/Draft Report.

Per my conversation yesterday (1/14/2015) with Wilma Peterman Cross, Deputy Director at the ODP/NIH, Public Comments submitted in response to the Draft Report will be retained and subject to a FOIA (Freedom of Information Act) request. I was told that the ODP had not planned to release the comments due to concerns that the comments might contain personal identifying information. To address this privacy concern, if these comments are requested to be reviewed by the public, a FOIA coordinator will review the comments and be responsible for claiming any exemption from release and/or will redact the comments to address these privacy concerns prior to release of these documents.

The individual at the NIH who will handle any FOIA request for these comments is Suzanne Freeman, who is the designated for FOIA Coordinator for the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI). Note, the e-mail address for Suzanne Freeman is care of the NIH Blood and Lung Division, but this is the correct address for Suzanne Freeman in her capacity as the FOIA coordinator for any NIH/ODP/P2P document requests. See, http://www.nih.gov/icd/od/foia/coord.htm

I was able to talk to Ms. Freeman yesterday to understand how the FOIA request will be handled. By specifying in the request that the documents requested are the Public Comments to the NIH/ODP ME/CFS P2P Draft Executive Summary/Draft Report, it will allow the location of the comments to be readily identifiable. In addition, if the request includes a statement that redacted copies of these documents will be acceptable then this will allow the request to be completed more quickly. Otherwise, exemption notification will first need to be sent out if there is personal identifying information within the comments that needs to be protected prior to release of the documents.

Since there is usually a cost involved in obtaining copies of documents under a FOIA request, you can specify in your request a maximum dollar amount that you would be willing to pay to retrieve/copy these documents. By Monday, January 19, 2015 (following the close of the Public Comment period on 1/16/2015) the NIH/ODP may also be able to provide an estimate of the number of Public Comments that were received as part of this process.

My plan will be to make a FOIA request for these documents on Monday, January 19th. My request will state that I will accept redacted copies of these documents. Ms. Freeman will be out of the office from Wednesday, January 21st through the end of January, so I want to be able to coordinate this request with her prior to her being out of the office. Notwithstanding that Ms. Freeman will be out of the office during the last part of January, she said that she will be monitoring e-mail and she will forward any requests that are received during this period to her staff.

While, there is no guarantee that these documents will be received before the final P2P report is released or before February 10, 2015 (date of the release of the IOM Report), it is more likely that by allowing for redacted copies of the comments, the request can be expedited. Once the redacted copies are reviewed, you can still do another follow-up FOIA request that does not agree to the receipt of redacted copies. This would allow for identification of the exemptions (or exclusions) used to redact the comment(s) and an appeal could be made if you disagree with these decisions.

Once I receive copies of the Public Comments, I will coordinate with MEAdvocacy.org to try to get this information posted on their website for viewing. I will be requesting that the documents be sent to me in electronic form rather than with paper copies.

If you are interested in understanding more about filing a FOIA request with the NIH, as well as the general requirements for any FOIA request, here are the links that explains this process in more detail - http://www.nih.gov/icd/od/foia/index.htm#requests and http://www.foia.gov/how-to.html

I also plan to file a FOIA request for public comments/questions that were submitted as part of the 2 day ME/CFS P2P Workshop that took place in December. However, I plan to file this request separately from the request for the Public Comments to the Draft Report.

Wally, Jan 15, 2015EditDeleteReport
#9+ MultiquoteReply

6) See, http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-34#post-546379

Nielk said: ↑
Do we know when the final P2P report is due?

I have asked the ODP if they have an anticipated time frame for when the report is planned to be released (i.e before the IOM Report release on Feb. 10th, at the same time as the IOM Report or sometime after Feb. 10th). I will post an update when I receive a response from the ODP.

7) See, http://forums.phoenixrising.me/inde...ort-are-due-by-16-jan-2015.34518/#post-546431

Esther12 said: ↑
Does anyone know what's happening with the full report, rather than just the executive summary? Will the full report simply be this and the evidence review, and maybe public comments too? Or are they writing the full report right now, and getting comments in earlier might help improve that?

Anyone familiar with the process?

@Esther12,
I don't have an answer to most of the questions you have asked with the exception of whether it would be helpful to get comments in early.

The ODP stated in a phone call that I had with them yesterday (1/14/2015) that the Public Comments are not reviewed until the end of the submission period. The comment submission period ends at 11:59 pm, Friday, 1/16/2015. So, the timing of when comments to the Draft Report were submitted would not appear to make a difference to when these comments will be reviewed by the P2P Panel.

Wally, Jan 15, 2015EditDeleteReport
#11+ MultiquoteReply

8) See, http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-34#post-546379

Wally said: ↑
I have asked the ODP if they have an anticipated time frame for when the report is planned to be released (i.e before the IOM Report release on Feb. 10th, at the same time as the IOM Report or sometime after Feb. 10th). I will post an update when I receive a response from the ODP.

I received an e-mail from my contact at the ODP, letting me know that they will be available on Tues. afternoon - Jan. 20th (EST) to discuss some additional questions I have about the P2P process. These questions relate to the timing of the release of the final report, as well as questions about the number of written Public Comments to the Draft Report, which were received by the ODP and information about Comments/Questions received as part of the P2P workshop.

I am sorry that I have not yet been able to get an answer to the timing of the release date of the P2P Report because I know that this information is important to the ME/CFS Community. Hopefully, I will be able to attain this information on Tuesday (note - Monday is a government holiday) following my phone conversation with the ODP.

Wally, Jan 16, 2015EditDeleteReport
#683+ MultiquoteReply

9) See, http://forums.phoenixrising.me/inde...or-public-comments-to-p2p-draft-report.35071/

Today I submitted a Freedom of Information Act (FOIA) request for the Public Comments submitted to the NIH/ODP in response to the ME/CFS P2P Draft Executive Summary Report. It is my understanding that approximately 90 (ninety) Public Comments were received.

The FOIA request that I have submitted states that I will accept redacted copies of these documents should the NIH find there is information in the Public Comments that they believe falls within an exclusion or exemption to disclosure under FOIA law. The request was made in this manner to allow for an expedited processing of the request by not requiring notification of any claim of exclusions and exemptions, prior to sending out these documents. If I receive any redacted documents, a determination can be made if additional FOIA requests will be needed in order to trigger a formal appeals process to challenge any exemption or exclusion claimed for the information that was redacted. While an exact time frame for when a response to my FOIA request will be completed could not be provided, the NIH FOIA Coordinator assigned to handle this request believes that her staff will be able to provide this information within the next 3 (three) weeks.

I have also asked that copies of the Public Comments be provided to me in electronic form. Once these documents are received they will be posted online. If MEAdvocacy.org is able to host/store the documents on their website, this is where the documents will be made available for public viewing. I will post again in this thread when I can confirm receipt and viewing location of these documents.

Please feel free to re-post this information on other sites.

Wally, Jan 20, 2015EditReport
#1+ MultiquoteReply

10) See, http://forums.phoenixrising.me/index.php?threads/release-date-for-the-p2p-final-report.35074/#post-554079

Wally said: ↑
I had an opportunity today to speak to Wilma Peterman Cross, Deputy Director with the Office of Disease Prevention ("ODP"), to ask whether a release date for the ME/CFS P2P Final Report has been set. I was told that an exact date for when the report will be completed and when it will be released to the Public has not yet been determined. However, the ODP does not plan to coordinate a release date with the release of the IOM Report on 2/10/2015. They also believe the P2P Final Report will be ready for release prior to the release of the IOM Report. An estimated release date for the P2P Report will be within the next 2 to 3 weeks.

Update on the release date of P2P report.
On Monday, Feb. 2nd, I phoned the NIH/ODP (Deputy Director, Wilma Peterman Cross) for a status update on the estimated release date of the P2P report. Not receiving a response back to my phone call, I followed up with a written request on Wednesday, Feb. 4th. A written response was received from Ms. Cross correcting information previously provided as to the estimated release date of the report. Quoted below is the updated information that I have received about the estimated release date of the P2P Report.

I must correct my earlier statement regarding the timing of the release of the final report. While the panel should be finished with their edits this week, the final report will not be available to the public until it is published by the journal, in this case the Annals of Internal Medicine. I had forgotten to include the journal publication process in the timeline when I talked to you earlier. My apologies.

We expect to submit the report to the journal this week. After completing its normal internal receipt and processing procedures, the journal will be able to tell us the final publication date. Once that date is available, we will post the information on our website. These details should be available in 2-3 weeks. We anticipate a publication date in early spring. The press telebriefing would be scheduled accordingly.

As a reminder, you are encouraged to sign up for the ODP listserv. We will post the report on our website on the same date as the journal publication. We will also send this information via our listserv. This would eliminate the need to continue checking the site. Instead, the information will be pushed to you via email. You can unsubscribe to the listserv in the future if you do not wish to continue to get updates from ODP.

I have sent a follow-up e-mail to Ms. Cross asking for additional clarification about publishing the Report in the Annals of Internal Medicine in lieu of the using the release process identified on the NIH/ODP website.https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepares a draft report that identifies research gaps and future research priorities. The draft report is posted on the ODP website, and public comments are accepted for 4 weeks. The final report is then released approximately 2 weeks later.
This page was last updated 1/20/2015

*Edit - At the 12/10/2014 P2P Workshop, Paris Watson stated that it will be mid February when an announcement will be made as to when and where the P2P Report will be released. See the videotape of the workshop at the time mark of 4:36:57 - http://videocast.nih.gov/summary.as...deocast.nih.gov/summary.asp?Live=14727&bhcp=1.

Wally, Feb 5, 2015EditDeleteReport
#4+ MultiquoteReply

11) http://forums.phoenixrising.me/inde...e-for-the-p2p-final-report.35074/#post-554492

Here is the most recent response that I received from the NIH/ODP regarding my questions about publishing of the ME/CFS P2P Report and the ME/CFS AHRQ.

Are all reports that are generated as part of the NIH/ODP P2P process published in some type of medical/scientific journal prior to or at the same time that the NIH/ODP reases [sic releases] the report to the public? If not all P2P reports are published in a journal, how is a determination made that a particular P2P report will be submitted for publishing?

- Participants in the Working Group meeting discuss the option of submitting the final report to a peer reviewed journal and make a recommendation to the panel. Although this recommendation is generally accepted by the panel, the panel makes the final determination regarding submission of their report to a journal. For the ME/CFS workshop, it was recommended that the report be published in the Annals of Internal Medicine which includes a target audience of researchers, physicians, and other health care professionals. ODP works with the journal to release the final report simultaneously.

- If the panel report is not submitted to a journal for consideration, the final report is released on the ODP website approximately 2 weeks after the close of the public comment period.

Do you know if the ME/CFS AHRQ will also be published in the Annals of Internal Medicine and if it will be published on the same date as the ME/CFS P2P Report?

- Yes, the AHRQ EPC report will be published in the Annals of Internal Medicine at the same time as the panel report is published.

It should be noted that the responses quoted above were provided by Wilma Peterman Cross, Deputy Director at the NIH/ODP. I think it is also important for me to acknowledge that Ms. Cross has been very responsive and helpful in answering any questions that I have raised to her.

When she provided information about the timeline for release of the P2P Report of approximately 2 to 3 weeks from the end of the Public Comment period rather than when the Report would be published in the Annals of Internal Medicine, I do believe this was just an inadvertent error.

As I posted earlier, at the end of the P2P Workshop in December, Paris Watson had stated that the Report would be published in the Annals of Medicine and information about when the Report would be published by this Journal would not be announced until approximately mid February. I did not recall this statement from the Workshop until other people on the Forum asked the question about publishing of the Report and the AHRQ in a Journal and I went back to see where this information may have been discussed.

I realize that there has been quite a bit of concern within our patient community as to some of the actions by the HHS and its underlying agencies regarding this illness, but I do believe that the NIH/ODP (through the responses provided by Ms. Cross) has been trying to be responsive to all of my questions, as they are aware that I will be sharing this information with others in the ME/CFS Community. [Note re editing to original quote– color bolding added for emphasis.]

(@Anne, @Denise)

Wally, Feb 6, 2015EditDeleteReport
#16+ MultiquoteReply

13) See, http://forums.phoenixrising.me/inde...e-for-the-p2p-final-report.35074/#post-563007

Status Update (as of 2/23/2014) as to the estimated publication date of the P2P Report

.

Per my conversation today with the NIH ODP Deputy Director's Office re the estimated publication date of the P2P Report, they believe that "[t]he publication date should be posted on the ODP website by the end of next week."

I also have an outstanding FOIA Request for the comments that were submitted in response to the Draft P2P report. I have been told that these documents should be ready for release within about 3 weeks. The additional time that has been required by the NIH to provide these documents has been explained as a result of the following:

1) There was a misunderstanding as to who within NIH would handle this particular FOIA Request. Originally I was directed to the NIH ODP FOIA Coordinator, but when they began processing the Request they determined that the Request should be handled by the NIH ODP P2P FOIA Coordinator, Susan Cornell, who handles all of the NIH P2P FOIA Requests.

2) The second reason I was told that it may take a little longer for the document request to be processed is due to their workload and how requests from multiple sources for the same documents are often bundled together for processing. The NIH FOIA office believes this is more efficient and economical for their staffing requirements, as well as allowing the cost of the search to be divided between each of the requesting parties instead of charging each party separately for an individual search.

My FOIA Request was submitted on January 20, 2015 and was acknowledged as received by the NIH on January 21, 2015. On 2/12/2015, I contacted the NIH for a status update on the progress of their response and I learned that my Request had recently been forwarded from the NIH ODP FOIA Coordinator to the NIH ODP P2P FOIA Coordinator. Based on receipt of my Request by the second FOIA Coordinator's Office during the week of Feb. 12th, they were estimating that a response to this Request would be completed within a month. I was also told that there were two (2) other Requests for the same documents that would be processed at the same time as mine.

It is still my plan that after I have received these documents and determined that they have been redacted by the NIH to remove personally identifiable information, the documents will be made available for viewing on the MEadvocacy.org website.

Wally, Feb 23, 2015EditDeleteReport
#18+ MultiquoteReply

14) See, http://forums.phoenixrising.me/inde...mments-to-p2p-draft-report.35071/#post-563027

“Status Update (as of 2/23/2014) as to the estimated date for response to my FOIA Request.
I have been told that these documents should be ready for release within about 3 weeks. The additional time that has been required by the NIH to provide these documents has been explained as a result of the following:

1) There was a misunderstanding as to who within NIH would handle this particular FOIA Request. Originally I was directed to the NIH ODP FOIA Coordinator, but when they began processing the Request they determined that the Request should be handled by the NIH ODP P2P FOIA Coordinator, Susan Cornell, who handles all of the NIH P2P FOIA Requests.

2) The second reason I was told that it may take a little longer for the document request to be processed is due to their workload and how requests from multiple sources for the same documents are often bundled together for processing. The NIH FOIA office believes this is more efficient and economical for their staffing requirements, as well as allowing the cost of the search to be divided between each of the requesting parties instead of charging each party separately for an individual search.

My FOIA Request was submitted on January 20, 2015 and was acknowledged as received by the NIH on January 21, 2015. On 2/12/2015, I contacted the NIH for a status update on the progress of their response and I learned that my Request had recently been forwarded from the NIH ODP FOIA Coordinator to the NIH ODP P2P FOIA Coordinator. Based on receipt of my Request by the second FOIA Coordinator's Office during the week of Feb. 12th, they were estimating that a response to this Request would be completed within a month. I was also told that there were two (2) other Requests for the same documents that would be processed at the same time as mine.

It is still my plan that after I have received these documents and determined that they have been redacted by the NIH to remove personally identifiable information, the documents will be made available for viewing on the MEadvocacy.org website.

Wally, Feb 23, 2015EditDeleteReport
#2+ MultiquoteReply “

14) See, http://forums.phoenixrising.me/inde...e-for-the-p2p-final-report.35074/#post-563018

Wally said: ↑
Update - I have talked with IOM Staff assigned to the MECFS Project/Report. They are aware of the "technical problem", which occurred at the Press/Public Briefing for the release of the report, where questions were not answered by the Committee members. This was apparently a technical problem resulting from a third party contractor who was hired to handle the broadcast/online Q&A.

IOM Staff did discuss this problem with the Committee and asked whether there could/would be a follow-up communication by the Committee to answer these questions. The answer to this question was no.

I also asked if any questions/comments received by the Committee through their Public Comment e-mail box (which will remain open thru 3/22/2015 - end of contract period) will be responded to before the end of the contract period. The answer to this question was no.

Please note that I have filed a P.A.R. for the Public Comments submitted to the I.O.M. Committee. This request was responded to and I am in the process of reviewing those documents. A second P.A.R. request will be submitted to cover the period through the end of the contract period.

Copies of the IOM Public Comments, as well as copies of the Public Comments to the NIH's P2P Draft Report (which have also now been received), are anticipated to be hosted for viewing at MEadvocacy.org.

I am in process of reviewing each document that I have received to determine that no personally identifiable information (i.e. e-mail addresses, phone numbers etc...) for any individual, not identified as commenting as part of an organization, appears on these documents when posted for viewing.

An announcement will be made when the documents are ready for viewing.

FYI - I wanted to provide a further update on the review and publishing of documents received from the I.O.M. as part of a P.A.R. request. This review, along with a final decision on where these documents will be hosted for viewing by the public is currently underway.

The Public Comments received from the N.A.S./I.O.M. are taking considerably longer than expected to review and prepare for public viewing because almost every document contained what I consider to be publicly identifiable information that was not redacted as part of the P.A.R. request process. I am going through each document to redact this information, before I will allow the copies of documents that I received to be released for a secondary public viewing.

I am also still reviewing the documents I have received from the N.I.H. in response to my F.O.I.A. request. These documents were redacted by the N.I.H. for personally identifiable information, before being sent to me. While only having time to give these documents a quick review, my initial review did not find a comment from C.F.S.A.C. nor my own personal comment. I will be reviewing the documents in more detail to see if I missed these two documents the first time around or if they were not included with the copies that were provided to me in response to my F.O.I.A. request. [Note re edit to original quote- bolding added for emphasis.]

Wally, Mar 18, 2015EditDeleteReport
#14+ MultiquoteReply

 

[Denise]

“How very interesting. I have received no notification via the the HHS listserv (or in any other form of communication from the HHS) of this announcement.

Today's date is April 4th at 9:45 am (PST). The date the HHS ODP P2P page was updated with this information was on April 2nd. I wonder if I would have ever known about this change directly from the HHS. Good thing that one of the problems with this illness is the inability to sleep because I went online to distract myself and found this announcement posted on the PR Forum.

Perhaps the HHS believes that Jennie Spotila's blog is just as an effective communication tool as their listserv or perhaps they were too embarrassed to spread the news wide and far thru their listserv or perhaps they misplaced the listserv along with those pesky Public Comments.

I wonder . . . was the HHS ever going to make an effort to let me know that their FOIA Response, to my FOIA request, was incomplete?”





It is worth noting that the Opioid P2P report experienced lengthy delays and I don't remember ever seeing any explanation was provided even on the P2P site.


That HHS has not sent out any info about the delay does not seem unusual since the update was only made on 2 April. Typically the CFSAC Listserv has usually taken several days/over a week to provide notice of things. (Though I have noticed that Barbara James seems to have speeded those sorts of things up since taking over as DFO.)


As for FOIA completeness, I would venture to guess that once a FOIA officer has been given materials in response to FOIA requests, each agency probably moves on to other things, and revisiting the material probably only happens when they are called on it because of appeals/ additional queries.


Since we know that responsiveness and timeliness aren't necessarily strong points of most HHS agencies, I think we should make sure to keep track of ongoing concerns.


My sense is that Jennie Spotila is pretty methodical and keeps track of ongoing concerns. I wouldn't be surprised if she regularly checks in on sites (and with people) about unresolved/unanswered issues.


It is a good thing Ms Spotila checked what she received against what she knew was submitted (in her library etc) to identify missing material.




I wonder if here on PR we should set up teams of people tasked with doing things like tracking ongoing issues... Thoughts?

 

[jspotila]

How very interesting. I have received no notification via the the HHS listserv (or in any other form of communication from the HHS) of this announcement.

Today's date is April 4th at 9:45 am (PST). The date the HHS ODP P2P page was updated with this information was on April 2nd. I wonder if I would have ever known about this change directly from the HHS. Good thing that one of the problems with this illness is the inability to sleep because I went online to distract myself and found this announcement posted on the PR Forum.

Perhaps the HHS believes that Jennie Spotila's blog is just as an effective communication tool as their listserv or perhaps they were too embarrassed to spread the news wide and far thru their listserv or perhaps they misplaced the listserv along with those pesky Public Comments.

I wonder . . . was the HHS ever going to make an effort to let me know that their FOIA Response, to my FOIA request, was incomplete?

I did not receive official notification of the delay or the missing comments from HHS either. I was alerted to the announcement on the P2P web page by a third party.

I sincerely hope you were being sarcastic when you said "Perhaps HHS believes that Jennie Spotila's blog is just as an effective communication tool as their listserv . . . " Anyone who has read any of my posts about P2P cannot come away thinking that HHS or NIH are in any way happy with what I say on my blog. Some advocates have accused me of having unjustified negative knee jerk reactions to anything NIH does. Of course, others have accused me of taking money from NIH and serving as some kind of communication tool for them. So if I misinterpreted the tone of your comment, I apologize. Previous accusations have sensitized me to the suggestion that I might be a covert mouthpiece for the government. I am not.

Regarding whether HHS would notify you that the FOIA response was inadequate, no they would not. Program offices (in this case, ODP) provide documents to FOIA offices. FOIA staff review the documents and make redactions as they deem appropriate. Those responses are then sent out.

A requester has 30 days to appeal a response. Appeals can be objections to redactions, claims of an inadequate document search, or failure to respond to a request altogether. If you do not file an appeal in 30 days, the file is closed. An agency will never come back and volunteer that they gave you an incomplete response, and if you don't file an appeal your right to complain about it ends.

In this case, I went through the FOIA release page by page, comparing it with what people had submitted to me for the P2P library. When it became clear that documents were missing, I immediately filed an appeal based on the failure to release all the documents (whether through an inadequate search or other problems) and the complete failure to respond to another part of my request.

From the sequence of events, it seems that my FOIA appeal forced the FOIA office to go back to ODP, which then had to find the missing documents and admit their error - not only an error in the FOIA response but the error of not providing those comments to the panel. If I had not accumulated the P2P library, and if I had not gone through that FOIA response page by page, I never would have found the error and none of us would have known. Even worse, the panel would not have received all the documents.

 

[medfeb]

I received an email from NIH confirming that my comments had not been forwarded to the panel and that NIH had posted a notice of the issue on the P2P site. But that was only because I had sent a number of emails to NIH after Jennie's FOIA blog came out to try to determine what had happened to my comments and those of CFSAC and MassCFIDS. When I was notified by NIH, I let Jennie know.

I've asked NIH for clarification of what 'one set of comments' means and whether it includes CFSAC and MassCFIDS plus a number of others that are missing. But I have not heard back yet. I'll post if I hear

Mary D.

 

[Kati]

invest in ME made a very interesting comments to the P2P. It was strong and to the point. Not to undermine other groups mind you, but this is definitely one to remember. i wonder whether it has been received by P2P?

 

[Wally]

@jspotila

Jennie,

As to your question -

I sincerely hope you were being sarcastic when you said "Perhaps HHS believes that Jennie Spotila's blog is just as an effective communication tool as their listserv . . . " Anyone who has read any of my posts about P2P cannot come away thinking that HHS or NIH are in any way happy with what I say on my blog. Some advocates have accused me of having unjustified negative knee jerk reactions to anything NIH does. Of course, others have accused me of taking money from NIH and serving as some kind of communication tool for them. So if I misinterpreted the tone of your comment, I apologize.

You are correct that my reference to your blog was not directed negatively toward you or your blog. It was merely mentioned as a reference point to how I became aware of the announcement that was posted on the HHS NIH ODP P2P website. While my comment did have a bit of my dry sense of humor thrown in to curb the frustrations I was feeling from yet another "screw up" by the HHS in dealing with ME/CFS related issues, I assure you that I was not in any way criticizing you or your blog. If I ever have any issue with you or what you write on your blog, I will come to you directly to discuss my concerns.

I will write more later on the subject of this FOIA request fiasco, but for now on this lovely Easter Sunday, I wanted to come here and post something directly to you, so you would not be concerned that you were under attack by another patient advocate. Definitely not my style to do this, but since we are mere strangers in the social media world, I am glad you reached out to me to clarify if the sensitivity you have developed from past interactions with other patients or patient advocates should be on high alert based on my mentioning your blog.

I hope by us both being able to communicate on this issue so quickly and openly that any misunderstanding will quickly be put to bed. A place that I find myself once again not feeling very well and trolling the on line world, while trying to distract myself from many of the unpleasant manifestations of this illness.

In the future, should you or anyone else wish to reach me privately or in a more timely fashion than posting on a patient forum or in a blog comment, I can be reached through my dedicated "M.E." gmail account at MECFSNEID@gmail.com. While I always try to circle back around to check to see if any comments have come in to anything I post on line, I find that I don't always have the ability to do this in a timely or continuing fashion. So, e-mail is always the fastest and most reliable way to reach me.

I hope you and others will have a nice Easter Sunday and the Easter Bunny brings you at least a few moments of joy and smiles, on what at times can be for those of us with this illness a challenge to find slivers of goodness and hope left in our world.

Wally (Susan Kreutzer)

P.S. This is how I imagine myself spending Easter with my beagle and in reality the most likely position that I will be relegated to in order to enjoy this Easter Holiday.

 

[medfeb]

invest in ME made a very interesting comments to the P2P. It was strong and to the point. Not to undermine other groups mind you, but this is definitely one to remember. i wonder whether it has been received by P2P?

Very much agree with you, Katie.
InvestInME's comments were great. I had only asked by name about the ones that were specifically listed in Jennie's blogs but would be surprised if I hear about anything other than my own. Bottom line, we need HHS to address this issue for all comments.

 

[jspotila]

@jspotila

Jennie,

You are correct that my reference to your blog was not directed negatively toward you or your blog. It was merely mentioned as a reference point to how I became aware of the announcement that was posted on the HHS NIH ODP P2P website. While my comment did have a bit of my dry sense of humor thrown in to curb the frustrations I was feeling from yet another "screw up" by the HHS in dealing with ME/CFS related issues, I assure you that I was not in any way criticizing you or your blog. If I ever have any issue with you or what you write on your blog, I will come to you directly to discuss my concerns.

I will write more later on the subject of this FOIA request fiasco, but for now on this lovely Easter Sunday, I wanted to come here and post something directly to you, so you would not be concerned that you were under attack by another patient advocate. Definitely not my style to do this, but since we are mere strangers in the social media world, I am glad you reached out to me to clarify if the sensitivity you have developed from past interactions with other patients or patient advocates should be on high alert based on my mentioning your blog.

I hope by us both being able to communicate on this issue so quickly and openly that any misunderstanding will quickly be put to bed. A place that I find myself once again not feeling very well and trolling the on line world, while trying to distract myself from many of the unpleasant manifestations of this illness.

In the future, should you or anyone else wish to reach me privately or in a more timely fashion than posting on a patient forum or in a blog comment, I can be reached through my dedicated "M.E." gmail account at MECFSNEID@gmail.com. While I always try to circle back around to check to see if any comments have come in to anything I post on line, I find that I don't always have the ability to do this in a timely or continuing fashion. So, e-mail is always the fastest and most reliable way to reach me.

I hope you and others will have a nice Easter Sunday and the Easter Bunny brings you at least a few moments of joy and smiles, on what at times can be for those of us with this illness a challenge to find slivers of goodness and hope left in our world.

Wally (Susan Kreutzer)

Thank you, Wally. I have no lingering concerns about this. I appreciate your answering me here, and providing your email address. I am much more reachable by email as well - jspotila AT yahoo DOT com.

I'm so glad we could clear this up so quickly!

 

[medfeb]

NIH staff got back to me and confirmed that that the set of missing comments included CFSAC's, MassCFIDS, mine plus a number of others which were not named.

 

[jspotila]

NIH staff got back to me and confirmed that that the set of missing comments included CFSAC's, MassCFIDS, mine plus a number of others which were not named.

If the comments missing from the FOIA response are the same ones not sent to the Panel (and the three you mention do overlap in both categories), then there are at least three dozen comments that were not sent to the Panel. Quite possibly more, since the only point of reference we have is the P2P Library on my site and I'm sure that's incomplete.

 

[Wally]

How very interesting. I have received no notification via the the HHS listserv (or in any other form of communication from the HHS) of this announcement.

Today's date is April 4th at 9:45 am (PST). The date the HHS ODP P2P page was updated with this information was on April 2nd. I wonder if I would have ever known about this change directly from the HHS. Good thing that one of the problems with this illness is the inability to sleep because I went online to distract myself and found this announcement posted on the PR Forum.

Perhaps the HHS believes that Jennie Spotila's blog is just as an effective communication tool as their listserv or perhaps they were too embarrassed to spread the news wide and far thru their listserv or perhaps they misplaced the listserv along with those pesky Public Comments.

I wonder . . . was the HHS ever going to make an effort to let me know that their FOIA Response, to my FOIA request, was incomplete?

Game "Back"* (*edit) On!

__________________________________________________________

*********************UPDATE*****************
Today I received a phone call from the NIH FOIA Office in response to a phone call that I made last week to find out what was up with the "alleged" missing Public Comments to the NIH's FOIA Request Response sent to me at the end of February.

The NIH FOIA Office was calling to let me know that as a "courtesy" they were sending me the additional copies of Public Comments responsive to my request that were not provided in response to my original request.

I was told that these documents had been inadvertently left out of the documents that the NIH ODP Office had forwarded to the FOIA Office, when they first were asked to provide the FOIA Office with all documents that were responsive to the request(s) for access to Public Comments filed in response to the draft P2P report.

Please note that I never received information about this processing error in response to my FOIA request via e-mail notification either individually or via the HHS/NIH Listserv (that I am signed up to receive notification about issues relevant to ME/CFS). I have found in past interactions with the HHS and its umbrella agencies that the use of its Listserv to notify interested parties about actions taken by or planned to be taken by the Department and its Agencies is not reliable and/or inconsistent in its use.

This afternoon, in addition to receiving a phone call from the FOIA office, I also received in the mail another "CD", which "allegedly" contains all the Public Comments not previously provided via the FOIA Request Response sent to me about six weeks ago. The FOIA Office identifies an additional 227 pages of Public Comments that were recently forwarded to the FOIA Office from the HHS/NIH/ODP Office.

The FOIA Office has stated that all of these new Public Comments have also been redacted to remove personally identifiable information. To ensure that the NIH has performed this task up to the standards that I would expect for the protection of patients private information, I am going through each document to make sure that no personally identifiable information has "accidentally" slipped by.

Once I have had an opportunity to review (and if necessary - redact any personally identifiable information in the documents that have been forwarded to me), I anticipate making all of the Public Comments I have received from the NIH and the IOM accessible for viewing on the MEadvocacy.org website. MEadvocacy.org has graciously offered to host these documents, so they are easily accessible for viewing by any patient or other interested party. An announcement will be made on this Forum and other places where patients may gather online to let people know when these documents are in place at the host site and they are ready for viewing.

 

[Denise]

Date for release of Final P2P Report
"Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report.
Status Update(April 16, 2015): The new publication date for the panel’s final report will be Tuesday, June 16, 2015, in print in the Annals of Internal Medicine and online on the ODP website. Thank you for your patience to allow for consideration of all public comments."


https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

 

[Nielk]

NIH will host a telebriefing for media only on June 16th for the P2P roll out

http://www.nih.gov/news/health/jun2015/odp-02.htm#.VW3If7bQGfA.facebook

 

[Denise]

The final P2P report is due to be published Tuesday 16 June but there are still many unanswered questions:
http://www.occupycfs.com/2015/06/09/contradictions-and-unanswered-questions/




"Press Telebriefing
The workshop panel will hold a press telebriefing on Tuesday, June 16 at 11:00 a.m. Eastern time to discuss their findings and answer questions from members of the media. Shortly after the conclusion of the telebriefing, an audio playback will be available for a four-week period.

NOTE: Closed captioning is available upon request. The ODP will need 72 hours advance notice for this service.

Telebriefing Phone Number
888-428-7458 (U.S. and Canada) | 862-255-5400 (Other International Callers)
Please reference the NIH Pathways to Prevention program on Advancing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. All interested parties are welcome to listen in, but the panel will only be accepting questions from members of the media.

Audio Playback Phone Number
888-640-7743 (U.S. and Canada) | 754-333-7735 (Other International Callers)
Enter replay code 118646, followed by the # sign"

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources#telebrief