Tangled Web

The CFS Advisory Committee has hit the reset button on their High Priority Recommendations, which means we will have a chance at the next meeting to offer our input on the list. We can tell the CFSAC which of their 77 recommendations we think are most important. But where to start?

I will be providing overviews of the recommendations by category, but there are two source documents you may want to review yourself. First, the High Priority List has been removed from the CFSAC website but you can see a copy of that document here. Second, the CFSAC maintains a chart of all its recommendations (pdf link) but it is not entirely accurate, as I will explain below.


The Recommendations Chart assigns each recommendation to one of four categories: Research; Education & Training; Care & Services; and CFSAC Specific. The Chart also notes which agencies are pertinent to each recommendation, whether any progress has been made, a description of the progress (if any,) and whether the recommendation has been completed.

  • CFSAC Specific recommendations are those that relate to the operation of the Committee itself, including ex officio membership, the process of making recommendations, and other operational issues.
  • Care & Services is the smallest category. This is a hodge podge collection of recommendations, but case definition and name predominate.
  • Education & Training recommendations cover programs to educate health care providers, educators, Social Security adjudicators, and the general public. A number of agencies are included in order to cover a diversity of distribution channels.
  • Research contains more than half of the 77 recommendations made by the CFSAC. These include recommendations on the CDC research program, NIH funding, Centers of Excellence, and other scientific issues.

Tied Up in Knots

While it makes sense to work from the Recommendations Chart in choosing our own top priorities, there are some problems with the document:

  • Two recommendations were omitted from the list completely. I don’t know why.
  • One recommendation is listed twice.
  • The recommendation text listed on the chart is not always accurate. Some of them are missing sentences from the original, and some of those missing sentences are important.
  • The designated status of “complete” is not always accurate. Some recommendations have not actually been completed. There are also recommendations that are obsolete or basically completed, but not described as such in the chart.
  • A number of the Research recommendations are related to the CDC’s Five Year Strategic Plan for the CFS program, approved in 2009. Unfortunately, that plan has been retired and nothing has taken its place (that we are aware of, anyway). I don’t recall the CFSAC discussing the mothballing of the plan, so I do not know if the CFSAC believes the related recommendations are also obsolete.
  • Some recommendations are simply not actionable as written. For example, one recommendation from October 2008 reads, “[CFSAC] Endorses the planned State of the Knowledge Conference to be developed by NIH.” That’s a statement of opinion, not an action item. I’ve been critical of the CFSAC in the past for their occasional failure to make recommendations that are specific, actionable and measurable.
  • The five recommendations related to the classification of CFS in the ICD-9 and ICD-10 are split between the Education category and the Care & Services category. I’ll consider them together in Care & Services.
  • The three recommendations related to the case definition are split between the CFSAC Specific and Care & Services categories. Again, I’ll consider them together in Care & Services.

Diving In

I’ve spent the past few days puzzling over the best way to cover all this information. What do you need to know and what is the best way to communicate that to you? Let’s face it: this is dry stuff. My goal is to give you the tools you need to identify the recommendations that you think should be designated as High Priority.

Despite all the flaws in the Recommendations Chart document, it is the best starting point we have. In the posts that follow, I will summarize the recommendations in each category. I will also point out which ones are complete (or obsolete) and which ones have language missing. I will try to stay neutral in these summaries so that you can form your own opinions. In a final post, I will share which recommendations I think would make the best High Priorities.

So grab the Recommendations Chart (pdf link) and a cup of coffee, and let’s get started.

Go to Part Two – CFSAC Specific Recommendations


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2 Responses to Tangled Web

  1. LJ says:

    Jennie, the link above that begins with: “Go To Part Two – etc” gets an Error message – the link doesn’t work

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