Registration is now open for the Pathways to Prevention workshop for Advancing the Research on ME/CFS. Interested individuals may register to attend live or participate via webcast. It is our hope that many stakeholders will participate in this process in order to ensure the patients have a strong presence and a voice.
Our understanding is that stakeholders/patients will have the opportunity to participate in the discussion both in person and online by asking questions or making comments via microphones or computers in the room. Webcast viewers can type in comments and questions in a comment box on the webpage. There is a total of 3.5 hours of “Discussion” time noted on the draft agenda, where public input will be addressed.
To register to attend live click HERE
To register for the webcast click HERE
More About the P2P: The National Institutes of Health (NIH), through the Office of Disease Prevention (ODP) has a program called the Pathways to Prevention. The goal is to host workshops that identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area, suggest research needs, and move the field forward through an unbiased, evidence-based assessment of a complex public health issue.
In June of 2012, the NIH launched the process of including ME/CFS in the P2P program. Several departments within the federal government came together to recommend ME/CFS for a P2P workshop. In November of 2012, the ODP received the recommendation to consider ME/CFS and approved the submission of a full proposal in December of 2012 based on “necessity, urgency and the identification of ME/CFS as a serious unmet medical need and a public health issue and that proposal was accepted then later approved. The workshop will take place on December 9 & 10, 2014.
Topics for the two-day workshop agenda were defined by questions that formed the evidence review. Speakers have been recruited for the workshop for each question/agenda item. The speakers are all to be experts in ME/CFS and are able to speak to their personal experience and expertise as a patient, caregiver, researcher, etc. The evidence review is a concise presentation of the ‘evidence’ and literature in ME/CFS (that relates to the study questions), boiled down and presented to the panel. There is opportunity for the P2P panel to review unpublished data as well. The Solve ME/CFS Initiative submitted additional evidence for their review, as well as encouraged our funded investigators, colleagues and peers to do the same. The P2P panel will review the evidence-based report in advance of the meeting and the report will be released to the public at that time.
There will be opportunity to comment and offer feedback on this report. We anticipate the report’s release in early October and will alert you to its publishing as soon as we hear more. At the two-day workshop, the P2P panel will hear from the expert speakers and be able to ask clarifying questions in a town-hall-like Q&A that will take place after each session during the meeting. The P2P Panel will be made up of experts in areas or topics that have relevance to ME/CFS and the evidence based report, but they are not to be ME/CFS experts by design – an effort to avoid bias and produce a report based on the facts presented in the evidence-based report and through the speakers. We do not know if patients in the gallery will be able to engage in the Q&A.
The day after the P2P meeting, the P2P Panel will write a draft report which will be published and the public will have time for comment. Originally the comment period was slated for 15 days. SMCI, along with other organizations and advocates, reached out to the P2P and asked that this comment period be extended in order to accommodate patient’s needs. We have received word that the comment period has been extended to 30 days, meaning the new deadline should be around January 12th, 2015. Once the comment period closes, the report will be finalized and NIH will organize a robust plan to disseminate it widely. The goal, as we understand it, is to have a report that contains a set of recommendations based on the totality of the evidence, in the hopes of having said recommendations carried out by Federal partners in one-nine months. These recommendations are aimed at improving the robust nature of the research being conducted in ME/CFS.
The Solve ME/CFS Initiative will pass along additional information as it is received and when the opportunity for public comment is scheduled, we will report that and share the means by which you can effectively participate.