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Final P2P report on pause

Discussion in 'Action Alerts and Advocacy' started by Denise, Apr 3, 2015.

  1. Denise

    Denise Senior Member

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    "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/
     
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  2. Esther12

    Esther12 Senior Member

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    Weird.

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

    Kati Patient in training

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    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.
     
    Last edited: Apr 3, 2015
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  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    WA, USA
    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.
     
    Last edited: Apr 3, 2015
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  5. Esther12

    Esther12 Senior Member

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

    Wally Senior Member

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    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. :bang-head:

    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? :whistle:

    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. :cautious::nerd::cautious::ninja::cautious::cool:

    [​IMG]
    [​IMG]
    [​IMG] [​IMG] [​IMG] [​IMG]


    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.

    [​IMG]
    [​IMG]

    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
     
  7. Denise

    Denise Senior Member

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    “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. [​IMG]

    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?
     
    Last edited: Apr 4, 2015
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  8. jspotila

    jspotila Senior Member

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    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.
     
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  9. medfeb

    medfeb Senior Member

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    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.
     
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  10. Kati

    Kati Patient in training

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    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?
     
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  11. Wally

    Wally Senior Member

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    @jspotila

    Jennie,

    As to your question -
    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.

    [​IMG]
    [​IMG]
     
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  12. medfeb

    medfeb Senior Member

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    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.
     
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  13. jspotila

    jspotila Senior Member

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    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!
     
  14. medfeb

    medfeb Senior Member

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    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.
     
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  15. jspotila

    jspotila Senior Member

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    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.
     
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  16. Wally

    Wally Senior Member

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    __________________________________________________________

    *********************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" :cautious: 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. :devil:

    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.
     
    Last edited: Apr 14, 2015
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  17. Denise

    Denise Senior Member

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    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
     
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  18. Nielk

    Nielk

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  19. Denise

    Denise Senior Member

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    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
     

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