News That Is Mostly Not

This week, the CFS Advisory Committee made two announcements that I think you will want to know about. First, the spring CFSAC meeting will be May 22-23rd in Washington, DC. There is no additional information about the agenda, beyond the promise to discuss the High Priority recommendation list. I’ve written summaries of the CFSAC’s recommendations to help you select the ones you think should be highest priority.

The other announcement was the publication of a document titled HHS Ad Hoc Workgroup on ME/CFS: Agency Actions and Accomplishments 2011/2012 (pdf link). This document contains very little news, but there is significance to that even so.

As I’ve covered in detail before, the Ad Hoc Workgroup was formed by Secretary Sebelius to inventory and coordinate the Department’s efforts on ME/CFS across the agencies. At the June 13, 2012 CFSAC meeting, Assistant Secretary Dr. Howard Koh said the purpose of the Workgroup was to “put forward accomplishments and opportunities for the future that would begin new efforts and conversations, identify new activities, and try to do the best we can in a very difficult funding environment.” Dr. Nancy Lee, chair of the Workgroup, said in an July 17, 2012 email to me that “The group has been tasked to identify past agency accomplishments and efforts regarding CFS and identify new opportunities for collaboration and coordination in CFS activities. . . . An outcome of the workgroup will be a report that will be posted on the CFSAC website. Because the workgroup is not yet complete in its fact-finding efforts, and because the final report will need to be reviewed by all participating agencies, it will probably not be posted until 2013.”

So now it is 2013, and this Agency Actions and Accomplishments report was published on the CFSAC website on March 11th. What was the outcome of the Workgroup’s efforts? The bulk of the report catalogs activity in research, patient care and education. There is nothing new here. All of the activities were previously reported at the 2011 and 2012 CFSAC meetings. Were any of these activities stimulated by the Workgroup or the display of interest from the Secretary’s office that led to its creation? There’s no way to tell.

One intriguing detail was that Office of the Assistant Secretary for Planning and Evaluation participated in the Workgroup. This is something I had hoped would happen, although it was not announced before now. Of course, there is no way to tell from the report whether this individual made positive contributions to the meetings.

The significance of this report becomes evident only through careful parsing of the introductory summary. Describing what led to the creation of the Workgroup, the report says, “Given the budget environment, it was important to determine how to best leverage these programs and resources to demonstrate how agencies’ efforts address ME/CFS priorities, but also signal the Department’s commitment to addressing the needs of people living with ME/CFS.” In other words, we need to make the most of the resources we currently have, but we also have to prove that we’re committed to helping people with ME/CFS. Hence, the Workgroup was created. I suppose that one’s point of view will determine where you think the emphasis lies: in maximizing resources or in making it look like they’re doing something.

Last August, I wrote, “What we’ve been promised is a report in 2013 that inventories what is currently being done across HHS, and which will hopefully include new initiatives (possibly the national webinar and patient registry). Dr. Koh’s caution about the budgetary climate is, in my opinion, code for ‘don’t expect anything new that will cost a lot of money.'” This report, unfortunately, falls in line with my prediction.

One thing that remains unclear is whether this is the final report and the end of the Workgroup. That is certainly the expectation created last year by Drs. Koh and Lee. But the report says, “The Workgroup is a forum to discuss agency accomplishments and explore opportunities for future activities. Several agencies are investing in future programs that will specifically address ME/CFS while others have resources geared toward a wider population that could benefit people with ME/CFS and their families.” (emphasis added) The report describes itself as the Workgroup’s “first report,” but there is no specific promise or indication of what the future plans for the Workgroup may be.

I expect we will hear more about this report at the May 22-23rd CFSAC meeting. I hope HHS won’t try to spin this as a great deliverable that should excite the community – it most certainly is not. It would be much more helpful is for HHS to explain what impact, if any, the Workgroup had on fostering new activities that were not already planned, as well as whether and how the Workgroup will continue to function in some capacity.

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One Response to News That Is Mostly Not

  1. Justin Reilly says:

    It sounds clear to me from what Dr. Koh and Dr. Lee said, as quoted here, that the Ad hoc working group will suggest new, future activities, so there seems no reason to believe they are done.

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