On Sept. 22nd, the Association for Health Research and Quality (AHRQ) released the draft systematic evidence review on the Diagnosis and Treatment of ME/CFS. NIH requested the literature review for the purposes of the Pathways to Prevention (P2P) Workshop, and the Agency for Healthcare Research and Quality contracted with the Oregon Health & Sciences University to perform it.
We first wrote about the P2P workshop program in April (https://solvecfs.org/pathways-to-prevention-for-mecfs/) and have been working with the advocacy community since then to stay abreast of the P2P process and assess its impact on ME/CFS. The NIH Office of Disease Prevention Pathway to Prevention (P2P) program approved the ME/CFS workshop earlier this summer and in June SMCI expressed its concerns about the protocol for the evidence-based literature review. (https://solvecfs.org/solve-mecfs-initiative-smci-position-on-p2p/)
The draft report is an extensive review on ME/CFS literature covering diagnosis and treatment and is but one element of the NIH Pathways to Prevention (P2P) process. On December 9 & 10, the Pathways to Prevention workshop for Advancing the Research on ME/CFS will take place in Washington, D.C. and the panel will hear expert testimony at that time. Also, during the workshop 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 computer; 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. 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.
Learn more about how to register for the December 9 & 10 P2P Workshop in this earlier post: https://solvecfs.org/p2p-workshop-registration-now-open/
The Solve ME/CFS Initiative is in the process of reviewing the draft report more thoroughly with members of its Research Advisory Council in order to provide the most informed comments prior to the deadline of October 20, 2014.
We will keep you informed and share our thorough review once completed.