Carmen R. Green, MD; Penney Cowan; Ronit Elk, PhD; Kathleen M. O'Neil, MD; Angela L. Rasmussen, PhD
Note: The independent panel was charged with providing guidance to the NIH on research gaps and research priorities for ME/CFS. While this manuscript was being developed, the Institute of Medicine developed a report titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and released their findings in February 2015. Although many would like the panel to consider and incorporate the Institute of Medicine's recommendations within this report, it is beyond the scope and charge. Nonetheless, the panel believes that it is important for federal agencies, clinicians, patients with ME/CFS, and ME/CFS advocates to consider both reports to move the science forward. Furthermore, the panel believes that its recommendations provide many opportunities to incorporate both reports and new knowledge during the deliberations of the other proposed meetings and, more specifically, if and when the panel is reconvened in 5 years.
In general, a 2-week public comment period is provided. The panel's initial report was completed in December 2014. The public comment period was extended to 4 weeks to allow for maximum participation of persons with ME/CFS who may have significant physical, social, and emotional disabilities and to accommodate the 2014 holidays. Unfortunately and inadvertently, some of the comments from the final day were not included and considered by the panel during the review period. Once this oversight was identified, publication was paused to consider these comments as individual panel members and then as a panel via conference call. An opportunity was provided to consider all public comments. The panel believes that this process allowed for a rigorous and inclusive review and a final product that moves the science forward.
Acknowledgment: The panel thanks the patients with ME/CFS who shared their stories.
Disclosures: Authors have disclosed no conflicts of interest. Forms can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M15-0338.
Editors' Disclosures: Christine Laine, MD, MPH, Editor in Chief, reports that she has no financial relationships or interests to disclose. Darren B. Taichman, MD, PhD, Executive Deputy Editor, reports that he has no financial relationships or interests to disclose. Cynthia D. Mulrow, MD, MSc, Senior Deputy Editor, reports that she has no relationships or interests to disclose. Deborah Cotton, MD, MPH, Deputy Editor, reports that she has no financial relationships or interest to disclose. Jaya K. Rao, MD, MHS, Deputy Editor, reports that she has stock holdings/options in Eli Lilly and Pfizer. Sankey V. Williams, MD, Deputy Editor, reports that he has no financial relationships or interests to disclose. Catharine B. Stack, PhD, MS, Deputy Editor for Statistics, reports that she has stock holdings in Pfizer.
Requests for Single Reprints: Office of Disease Prevention, National Institutes of Health, 6100 Executive Boulevard, Room 2B03, MSC 7523, Rockville, MD 20852.
Current Author Addresses:Dr. Green: Office for Health Equity and Inclusion, University of Michigan Health System, M7330 Medical Science Building 1, 1150 West Medical Center Drive, Ann Arbor, MI 48109-5603.
Ms. Cowan: American Chronic Pain Association, P Box 850, Rocklin, CA 95677.
Dr. Elk: College of Nursing, University of South Carolina, 1601 Greene Street, Columbia, SC 29208.
Dr. O'Neil: Riley Hospital for Children at Indiana University Health, 699 Riley Hospital Drive, Room 307, Indianapolis, IN 46202.
Dr. Rasmussen: Katze Lab, University of Washington, Rosen Building, 960 Republican Street, Seattle, WA 98109-4325.
Author Contributions:Conception and design: C.R. Green, P. Cowan, R. Elk, K.M. O'Neil, A.L. Rasmussen.
Analysis and interpretation of the data: C.R. Green, P. Cowan, R. Elk, K.M. O'Neil, A.L. Rasmussen.
Drafting of the article: C.R. Green, P. Cowan, R. Elk, K.M. O'Neil, A.L. Rasmussen.
Critical revision of the article for important intellectual content: C.R. Green, P. Cowan, R. Elk, K.M. O'Neil, A.L. Rasmussen.
Final approval of the article: C.R. Green, P. Cowan, R. Elk, K.M. O'Neil, A.L. Rasmussen.
Administrative, technical, or logistic support: C.R. Green.
Collection and assembly of data: C.R. Green, P. Cowan, R. Elk, K.M. O'Neil, A.L. Rasmussen.
The National Institutes of Health (NIH) Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was cosponsored by the NIH Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group. A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared an evidence report through a contract with the Agency for Healthcare Research and Quality to facilitate the discussion. During the 1.5-day workshop, invited experts discussed the body of evidence and attendees had the opportunity to comment during open discussions. After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepared a draft report that identified research gaps and future research priorities. The report was posted on the NIH Office of Disease Prevention Web site for 4 weeks for public comment.
Green CR, Cowan P, Elk R, O'Neil KM, Rasmussen AL. National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ann Intern Med. 2015;162:860–865. doi: 10.7326/M15-0338
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Published: Ann Intern Med. 2015;162(12):860-865.
Chronic Fatigue Syndrome/Fibromyalgia, Rheumatology.
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