Last Updated: 23 January 2016 23 January 2016
This is the text of the letter we received from the Office of Disease Prevention on April 14th, in response to our letter of April 3rd.
Dear Ms. Proskauer:
Thank you for your message and interest in the NIH Pathways to Prevention workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
In response to your comments and questions:
The recently released report from the Institute of Medicine should also be reviewed and considered by the panel.
It is beyond the scope and charge for this panel to consider and incorporate the Institute of Medicine (IOM)’s recommendations within their report because the IOM report was released after the P2P workshop. The panel can only consider materials available at the time of their workshop.
1. How will the missing comments be retrieved? Can they even be found? (I would be happy to re-submit our comments if you cannot find them.) How many comments were not passed on, and from whom were they? (Would obtaining this information require another FOIA request?)
There were 46 comments that were inadvertently misplaced and not sent to the panel originally. All comments received by the NIH Office of Disease Prevention (ODP) are now on file and we have confirmed that all comments have been forwarded to the panel for consideration. The ODP cannot release the contact information for the individuals and organizations who submitted the comments because we did not obtain their permission to do so. The ODP is committed to ensuring that all public comments have been considered by the panel before completion of their final report. That is why we paused the publication process in order to give the panel as much time as it needs to thoroughly review and consider all submitted comments before the release of the final report. Once the panel has finished its deliberations, the publication process will resume, and the ODP will announce a new publication schedule on our website.
2. Exactly what process will be used by the panel to reconsider their revision in light of these comments?
The panel chose to review the additional comments via a teleconference that they arranged.
3. What actions will be taken to prevent any future occurrences of an error like this? How can the public be assured that their input will be received and carefully considered?
For future P2P workshops, public comments will be posted online as they are submitted to enhance the transparency of this process and to ensure that all comments are received by the panel in a timely manner.
Jody Engel, M.A., R.D.
Director of Communications
NIH Office of Disease Prevention