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April 18, 2017
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IACFS/ME Response to P2P Draft Report on ME/CFS
January 17, 2015
Dear NIH P2P Panel Members ,
As board members of the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), the largest international group of clinicians, researchers, and other professionals dedicated to the care and research of patients with ME/CFS, we hope that your report will have a positive influence on the field, our organization’s members, and the patients/ families we serve.
Generally we agree with the majority of the Panel’s recommendations but believe that the elephant in the room – research funding – alluded to in the report (e.g. Line 8) needs to be addressed more strongly and specifically.
Federal funding for ME/CFS research over the last 3 decades has been inadequate to the broad-ranging and complex challenges presented by this illness. In recent years, only $5-$6 million annually has been awarded on an extramural basis, resulting in ME/CFS being the least-funded out of 240+ conditions that NIH tracks annually. (http://report.nih.gov/categorical_spending.aspx
) Over the last 25 years that IACFS/ME has been in existence, we have seen few new researchers enter the field, a flat publication rate over the past decade, and continuing stigma surrounding the illness.