Highest Priority, Part One

Over the years, the CFS Advisory Committee has made dozens and dozens of recommendations to the Secretary for Health and Human Services. This month, the Committee posted a document entitled “High Priority Recommendations from CFSAC, January 2012” (pdf link) which narrows down all those recommendation to just seven. In this part one of two articles, I examine the document itself and share some information I received from Dr. Nancy Lee. In part two, I’ll share what I learned from some additional digging (and it’s not pretty).

The Background

The idea of identifying the highest priority recommendations arose at the November 2011 CFSAC meeting. On November 8, 2011, Dr. Marshall said:

By my quick count, there are 58 recommendations, 27 of which are as yet unresolved. What about CFSAC parsing those into rough categories and make them the object of subcommittee meetings tomorrow where we cut some of them down and come up with two or three strong recommendations? The trees are getting lost because of the forest. So cut most of the forest down. CFSAC Minutes, November 8, 2011, p. 43.

The next day, discussion returned to the idea. Dr. Lee suggested, “We could do some work on these in the next month or two with subcommittee calls. When presenting material to high‐level people, you have got one page and if you cannot say what you want them to learn in about in one page, you are saying too much.” CFSAC Minutes, November 9, 2011, p. 49.

Committee members made a variety of suggestions on how to go about reducing the number of recommendations, but the minutes do not reflect any final decision for how the process would occur. Dr. Nancy Lee told me in an email on January 24, 2013 that “CFSAC members worked via the subcommittees to identify the top priority recommendations which are now on the website.” Dr. Lee provided no additional information about how the process worked or when it was completed.

The Recommendations

Whatever process the CFSAC may have followed to produce this document, the end result is seven recommendations out of the 76 made between 2004 and 2012. The document lists the selections in reverse chronological order, although Dr. Lee told me that “The priority recommendations are listed in no particular order.” Here is what the CFSAC has chosen as its high priority recommendations:

Clarify the Department’s process for considering the CFSAC recommendations. This recommendation was made in November 2011, and was answered in Dr. Koh’s letter of August 3, 2012, in which he explained the mechanics for transmittal of recommendations and responses.

Classify CFS in the ICD-10-CM in section G93.3 along with myalgic encephalomyelitis. The CFSAC has made recommendations on the code classification of CFS six times (9/04, 8/05, 5/10, 5/11, 11/11, 6/12) although the selected wording in this document is from November 2011. Dr. Koh’s August 3, 2012 letter noted that roll out of the ICD-10-CM will be delayed, but makes no further commitment or response to the CFSAC’s recommendation.

The Interagency Working Group should pool resources to enact the Centers of Excellence concept repeatedly recommended by the CFSAC. Centers of Excellence has been a recurring theme for the CFSAC, with recommendations for the idea made seven times (9/04, 8/05, 5/07, 5/09, 10/09, 10/10, 11/11). This specific recommendation was made in November 2011 and partially addressed in Dr. Koh’s August 3, 2012 letter, in which he described the Ad Hoc Working Group. He did not address the Centers of Excellence concept in any way.

Fund more research. CFSAC has recommended increasing research funding for ME/CFS through NIH or CDC at ten different meetings, frequently in multiple ways at a single meeting (9/04, 8/05, 11/06, 5/07, 11/07, 5/09, 10/09, 5/11, 11/11, 10/12). In the High Priority document, the CFSAC used a modified version of its recommendation from May 2011, and combined it with two other recommendations. I will examine this more closely in part two.

Adopt the term “ME/CFS” across HHS programs. This recommendation was made in October 2010. Despite NIH’s and FDA’s at least partial adoption of the term, there has been no HHS-wide decision made or progress reported on this recommendation.

Create a task force to focus on coordinating support for children and young adults with CFS. The specific wording used in the High Priority document dates from October 2008, but the CFSAC has made recommendations on pediatric issues at six different meetings (9/04, 8/05, 10/08, 5/09, 10/09, 6/12). These recommendations have included the creation of pediatric management guidelines and research into the diagnosis, epidemiology and treatment of pediatric CFS.

Public awareness and education. The CFSAC has made recommendations on public awareness and public education campaigns seven times (9/04, 8/05, 11/06, 11/07, 10/08, 5/09, 10/09). The CFSAC selected a recommendation made in September 2004 and August 2005 for the High Priority document, but this recommendation was marked as “complete” by HHS after the CDC’s public awareness campaign of 2006.

The Missing

The High Priority document was apparently compiled some time around January 2012, which means that none of the recommendations from the June and October 2012 meetings were included. Among the missing recommendations are the removal of the CDC Toolkit, distribution of the IACFS/ME Primer, education of educators and school nurses about ME/CFS, a standing review committee at NIH, a meeting of ME/CFS experts to discuss the case definition, and research funding for cluster outbreaks, epidemiology of severely ill patients, and biomarker discovery.

Another category of recommendations missing from the document is provider education. Over the years, the CFSAC has recommended a number of efforts to educate healthcare providers, and this area remains one of critical need. But the topic was largely ignored by the Committee in selecting the high priority recommendations, with the exception of a mention within the recommendation on Centers of Excellence.

Going Forward

I asked Dr. Lee if this High Priority list had been shared with Assistant Secretary Dr. Howard Koh, and how he had responded. She said “CFSAC leadership discussed this priority list with Dr. Koh last year; he was very supportive.” That’s all well and good, but it does not appear that this list has been used or will be used going forward.

Although the list appears to have been finalized in January 2012, there has been no public mention of it until now. Dr. Koh made a nonspecific comment at the June 13, 2012 CFSAC meeting when he said, “We want to thank [the subcommittees] for pushing those efforts forward and continuing to prioritize the recommendations that are coming out of CFSAC.” CFSAC Minutes, June 13, 2012, p. 5 (emphasis added). Apart from that, not a single member of the CFSAC referred to this document in public at any point in the year since it was completed.

This begs the question of what use the document can be if no one is using or referring to it. Furthermore, what is the status of the Committee’s other 69 recommendations not included in this document? Will this document be updated as new recommendations are made by the Committee? And finally, if this document was finalized a year ago, why was it not posted until now? Dr. Lee told me that “CFSAC staff continue to strive for transparency and frequent communication, so the list was posted when we realized it was not on the website.”


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10 Responses to Highest Priority, Part One

  1. Kati D says:

    Going back to dr Marshall’s quote, the trees are getting lost because of the forest, so cut most of the forest down… How about a full blown search and rescue operation?
    Thank you for writing about this head banging topic Jennie. Just reading about it gives me a headache.

  2. Matina Nicholson says:

    Awesome! Thanks. You make it easy for me to keep up to date! : )

  3. Jean H. says:

    This is all they could come up with? When you think of the effort made by individuals and groups just to attend & testify? Stunning.

  4. cfsboston says:

    Stop trying to work with the system as though it’s something logical and rationale. The government mindfully created CFS & ME illogical on purpose; They have no intention of trying to solve it.

    When will CFSers’ come to realize that “insanity is doing the same thing over and over again, and expecting different results” (Einstein)?

    Let’s start a revolution in 2013. Vive La Revolución‏!

    Check out these groups:

    THE CANARY PARTY – http://canaryparty.org/ “The Canary Party is a movement created to stand up for the victims of medical injury, environmental toxins and industrial foods…”

    OCCUPY HEALTHCARE: http://occupyhealthcare.net/

    Both have Facebook Pages to see activities, newsletters, going-ons, etc.

  5. Kelly Latta says:

    @Jean H.
    Hi Jean. I think this list is as Jennie said a prioritization of what has been recommended in the past although there is quite a bit missing. Sometimes you have to pick a place to start.

  6. Kelly Latta says:

    Einstein’s quote assumes all variables remain the same. Particularly in politics, whether it be government or health care, the players are always changing, the political climate changes, power shifts occur, knowledge grows etc. Working within a system isn’t a lost cause, but it takes perseverance and patience.

  7. Chris Heppner says:

    Sounds to me as if the sections of both NIH and CDC involved with ME should be closed down, and the money saved given to the private institutions actually furthering real research on us–the OMI, Simmaron, the Klimas group, the Einlander group, and a few others–then maybe we would get somewhere! Educating doctors is needed, but I suspect will not really happen until there are real and effective treatments–then they will have to learn! Chris

  8. jimells says:

    Like most “blue ribbon panels”, “white papers”, etc. this committee was never intended to actually do anyhing more than give the appearance of doing something.

    “…the players are always changing…” Only in a literal sense. Like The Who told us 40 years ago, “Meet the New Boss, same as the Old Boss”. Anybody working for these institutions who seriously makes waves will be driven out or co-opted. The “Bore from within” strategy doesn’t work. Begging for crumbs doesn’t work.

    Pressure from outside can work. The institutional cost of the policy of ignoring us has to be increased to exceed the benefits of the policy. How do we do that? We keep agitating, causing trouble for them, disrupting business as usual. We’re generally too sick for traditional protests, perhaps even too sick for a “sit-in”. How about a “lay-down” protest? Lying down is something I’m really good at…

  9. Pingback: Reposted from OccupyCFS « Speak Up About ME

  10. Pingback: Did CFSAC’s ‘High Priority List’ Illegally Bypass Public Input?

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