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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One thought on “Solve ME/CFS Initiative Grades the HHS Response to CFSAC Recommendations”

  1. MaschelleMEcfs says:

    The IOM recommendations for ME/CFS gave me such hope! I didn’t think the government could possibly keep this monstrous disease that myself and so many others are suffering from in a psychological category. I believe abuse fromdoctors and loved ones would stop after the true nature of this disease was finally validated and treated like disease worthy of compassion and proper respect. I’m suffering horribly as I lie in this bed watching the clock count down the days of what a normal lifespan is. The decades of a young adult are over, middle age is just a few years shy of the conversion into old age. By the time anything is enacted that could actually help me I will be elderly. My chance of living a life gone, leaving me to face my final years alone and infirm. That is IF the federal government EVER stops this abuse actively being perpetrated upon desperately ill human beings by acting on the facts that now exist. I read this article with first dismay, then horror that theyve done this again. Dismissed us all as if we were lower than dogs.. Who are treated with more compassion than ME/CFS sufferers are. I am abused and ridiculed by neighbors. I am afraid to let my doctor know how sick I now am for fear of what their “treatment” would do to make this even worse.
    I don’t like it, who would, but I DO understand why this dusease has such a high suicide rate. How does one retain high spirits when lived ones say “Do you plan to lay in that bed for the rest of my life? You just don’t have the will power to push through the pain like the rest of us do.” Then they state their intention to not put their life on hold and they are moving on. I’m alone and afraid. I haven’t been hugged or comforted in years. I’m just laying here suffering. It’s an abomination.

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