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.
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Lily Chu, MD, MSHS
Independent Consultant, Burlingame, CA
July 17, 2015
Conflict of Interest:
LC is involved in ME/CFS research.
Estimated annual economic burden of ME/CFS in the US is between $9-$54 billion, not $2-$7 billion
Green et. al estimate the annual economic burden of myalgic encephalomyelitis/ chronic fatigue syndrome between $2 - $7 billion in the United States (1) but no citation is given. This is a far lower figure than the $18-$24 billion in direct and indirect costs estimated by Dr. Leonard Jason (2) or the $54 billion estimated by the Centers for Disease Control and Prevention (3). Even when only labor force productivity is accounted for, the annual amount lost was estimated at $9 billion (4). Accurate economic costs are important as they influence the amount of effort, resources, and dollars invested in the research and clinical care of a medical condition. This is especially important for ME/CFS given that it has remained among the bottom 10 of over 240 conditions funded by the National Institute of Health for many years (5). Annual extramural funding of $5-$6 million a year divided among a conservatively estimated 1 million patients means that only $5-$6 a year is invested in research per patient annually. In contrast, for example, multiple sclerosis and systemic lupus erythematosus are both funded at more than ten times the level of ME/CFS, $112‐$152 million and $92‐$127 million annually respectively, although ME/CFS may be more common (5, 6). Thus, it should come as no surprise why we still do not understand the pathophysiology behind ME/CFS nor have any diagnostic tests or effective disease-modifying treatments. I support many of the recommendations put forth by Green et al. but funding for research must be increased if we are to make any progress.References:(1) 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(2) Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. The Economic impact of ME/CFS: Individual and societal costs. Dynamic medicine : DM. 2008;7:6. doi:10.1186/1476-5918-7-6.(3) Lin JM1, Resch SC, Brimmer DJ, Johnson A, Kennedy S, Burstein N, et al. The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs. Cost Eff Resour Alloc. 2011 Jan 21;9(1):1. doi: 10.1186/1478-7547-9-1.(4) Reynolds KJ, Vernon SD, Bouchery E, Reeves WC. The economic impact of chronic fatigue syndrome. Cost effectiveness and resource allocation : C/E. 2004;2:4. doi:10.1186/1478-7547-2-4.(5) Estimates of funding for various research, condition, and disease categories (RCDC) [Internet]. Washington, DC: National Institutes of Health; 2015 February [cited July 15, 2015]. Available from: http://report.nih.gov/categorical_spending.aspx(6) The cost burden of autoimmune disease: the latest front in the war on healthcare spending [Internet]. Eastpointe, MI: American Autoimmune Related Diseases Association; 2011 [cited 2016 July 16]. Available from: http://www.diabetesed.net/page/_files/autoimmune-diseases.pdf
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.
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