Solve ME/CFS Initiative Grades the HHS Response to CFSAC Recommendations


Reprinted with the kind permission of Solve ME/CFS Initiative.

The U.S. Department of Health & Human Services (HHS) released this week its response to the recommendations put forth by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) at its August meeting. We recognize that these responses were written in late October, before the first Trans-NIH Working Group meeting. We understand that there have been positive developments at the National Institutes of Health since then.

The Solve ME/CFS Initiative has given a letter grade to HHS for each recommendation based on how well the agency responded, given last year’s Institute of Medicine (IOM) and Pathways to Prevention (P2P) reports, which unequivocally called for federal agency focus on ME/CFS.

To view the CFSAC recommendations and the full HHS responses, go here.

IOM report: ME/CFS is a “serious, chronic, complex, multisystem disease… In its most severe form, this disease can consume the lives of those whom it afflicts.” 

IOM report: MC/CFS patients “…are more functionally impaired than those with other disabling illnesses, including Type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis and end-stage renal disease.”

P2P report: “ME/CFS results in major disability for a large proportion of the people affected. Limited knowledge and research funding creates an additional burden for patients and health care providers.”
We note that in no case did HHS appear to disagree with CFSAC recommendations. Indeed, each recommendation was thoughtfully and painstakingly crafted by diverse and knowledgeable individuals.  In the instances in which our organization assigned low grades, it was primarily due to federal process issues, which were described as preventing forward movement.
Assuming that the recommendations themselves have merit, as they were not refuted by HHS, then we can explore a path forward to achieve them. Knowing that the CFSAC has deep knowledge of the disease and HHS has deep knowledge of how to navigate through federal processes, a goodwill discussion regarding how to effect these recommendations would be a sensible next step. 

We offer this assessment to continue a constructive, problem-solving dialogue regarding how our federal government can live into the Institute of Medicine’s and P2P’s mandates.

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