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Why the 2015 IOM "ME/CFS" Report Should Be Scrapped, In Toto, as Unfit for Purpose
By Jerrold Spinhirne
Why the 2015 IOM "ME/CFS" Report Should Be Scrapped, In Toto, as Unfit for Purpose
By Jerrold Spinhirne
More...As a US ME patient disabled for 18 years by the disease, I consider anything positive in the 2015 IOM "ME/CFS" report "fruit of the poisoned tree." Frankly, the IOM report, itself biased, does not deserve a balanced appraisal.
The positive aspects of the report will soon be overlooked and forgotten. The unwarranted conclusions, errors, and omissions of the report will greatly harm ME patients in the US and worldwide, and confound research on the disease for decades to come.
The IOM report is an abject failure, in toto, unfit for purpose for these reasons:
1. The report is seeking to create yet another overly inclusive diagnostic category ("SEID") that will include both patients with and without ME. Although the new diagnostic category is less inclusive than CFS and the report seeks to create only diagnostic criteria, future research on mixed groups of "SEID" subjects will be confounded, diluted, and inconsistent for decades to come.
2. The report fails to acknowledge that ME is a distinct neurological disease requiring its own case definition and diagnostic guidelines. Fortunately, we already have an excellent published case definition, the 2011 ME-ICC, and excellent diagnostic and treatment guidelines, the 2012 IC Primer.
The report will serve to prevent implementation of the ME-ICC and distribution of the IC Primer. Doctors need the IC Primer so they can make the differential diagnosis of ME now. Instead, the report authors absurdly call for creation of yet another new diagnostic manual based on their botched clinical case definition. The report makes no mention of the 2012 IC Primer whatsoever....
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