Care and Services Recommendations

See Part One – Tangled Web
See Part Two – CFSAC Specific Recommendations

Only ten recommendations are assigned to this category. See pages 12 – 15 of the Recommendations Chart (pdf link). Most relate to the categorization of CFS in the ICD-9 and ICD-10, but the others cover a range of topics. I’ve also added two recommendations, one each from the Education & Training section and the CFSAC Specific section.

Clinical Care

A smattering of recommendations touch on various aspects of clinical care or guidelines. Regarding HHS efforts, the CFSAC recommended an interagency and interdepartmental effort to coordinate support for children and young adults with CFS (October 2008). No progress on the recommendation is reported, and it was included in the High Priority list. CFSAC also recommended that CMS, AHRQ, and HRSA should develop a demonstration project focused on more efficient and effective care (May 2010), and the progress note states that more must be known about causes and treatment before such a project could be pursued.

In the midst of the XMRV issue, CFSAC recommended that CFS patients be indefinitely deferred from donating blood (May 2010). This recommendation is accurately marked complete, given the current guidance in the blood community. Finally, the CFSAC recommended that HHS make the IACFS/ME Primer widely available (June 2012). This recommendation is accurately marked complete since the Primer was posted to


The classification of CFS in the International Classification of Diseases manual (ICD) has been the subject of Committee recommendations since September 2004. This is a significant (and difficult) issue concerning how CFS and ME are coded, and those codes communicate information about the diseases. For example, ME is listed in the Neurological Disease category, but in the United States version CFS is listed in the Signs and Symptoms chapter. CFSAC members and patient advocates (particularly the Coalition 4 ME/CFS) have repeatedly recommended that CFS be moved to the neurological category. In the US, the customization of the ICD is done by the National Center for Health Statistics at CDC. The CFSAC recommendations on this issue are split between the Care & Services category and the Education category. To help this discussion, I’ve included the October 2012 recommendation from the Education category here (see page 11 of the Recommendations Chart).

CFSAC’s first recommendation was to classify CFS as a “Nervous System Disease” (September 2004, repeated August 2005). The progress note on the chart states “The science of CFS does not support this action at this time.” CFSAC revisited the issue in 2010, but there is some confusion in the record about what they intended by the recommendation. Both the Chart and the CFSAC website state that the CFSAC rejected a proposal to classify CFS as psychiatric, and that it should retain its current classification in the Signs and Symptoms section (May 2010). However, the minutes of the meeting do not support this characterization of the recommendation, stating that the Committee unanimously approved a recommendation that “CFSAC strongly rejects the proposal to classify CFS as a psychiatric condition in the ICD 10.” (CFSAC Minutes, May 10, 2010, p. 40) I do not know why the extra sentence was added to the versions reported on the Chart and website.

CFSAC recommendations became more closely aligned with proposals from the Coalition 4 ME/CFS the following year. First, the Committee recommended that CFS be classified in the nervous system chapter, and reject the proposal to retain the “CFS, unspecified” code in the Signs and Symptoms chapter (May 2011). CFSAC reiterated this position in a multi-part recommendation to classify CFS in the Diseases of the Nervous System chapter, and not the Signs and Symptoms chapter (November 2011). Progress is listed as “ongoing” and the note indicates that the recommendation was shared with the NCHS. This recommendation was included in the High Priority Recommendations list. Finally, CFSAC expressly endorsed the Coalition 4 ME/CFS Option 1 proposal recommended at the September 2012 NCHS meeting (October 2012). This proposal would move CFS to the Nervous System chapter and combine it with myalgic encephalomyelitis in a single code.

At the October 2012 meeting, Dr. Nancy Lee said “her sense is that the process is large and ongoing and she does not believe the Secretary would want to interfere in a process that deals with 10,000 diagnoses in order to weigh in on one.” (CFSAC Minutes, October 4, 2012, p. 57)  On August 24, 2012, the final implementation of the ICD-10-CM was delayed until October 1, 2014.

Name and Definition

The name and definition of our disease has been controversial for decades. The CFSAC’s predecessor committee, the CFS Coordinating Committee, formed a Name Change Workgroup but the Committee was dissolved before its work was finished. Written recommendations from the Coordinating Committee were submitted to the newly formed CFSAC, and in December 2003 the CFSAC issued a position statement saying, “we feel that a change of this name to another name should occur only when there is a better understanding of the pathophysiololgy of the illness.” Since 2003, the term “ME/CFS” has gained greater acceptance and new case definitions have been proposed. Still, the CFSAC did not return to the topic for the purpose of making recommendations until years later.

The first such recommendation was inspired by the CDC’s empiric case definition (a long summary of the definition and associated problems can be found here). CFSAC rejected the definition and the term “chronic unwellness,” and recommended that HHS commit to support a national effort to arrive at a consensus case definition (October 2009). This recommendation is found in the CFSAC Specific section of the Recommendations Chart on page 17. The Chart notes that CDC uses the 1994 Fukuda definition, and that “chronic unwellness” is not a component of the definition. Nothing more is said in the Chart about finding a consensus definition.

After Dr. Dennis Mangan said he would change the name of the Trans-NIH Working Group to include the term ME/CFS, the CFSAC recommended that the term ME/CFS be adopted across HHS programs (October 2010). This recommendation was included in the High Priority list. There has been some penetration of the name ME/CFS at NIH and CDC, but the Department has not officially responded to the recommendation.

Finally, after a lengthy and sometimes contentious discussion, CFSAC recommended that the Secretary promptly convene a stakeholders’ workshop to reach consensus on a case definition (October 2012). The progress note on the chart states that NIH is planning a workshop on the research case definition and CDC is collecting data that will be useful for case definition discussion.

Keep In Mind

Three recommendations are marked complete (blood donation, the Primer, and retain CFS in Signs and Symptoms), and that is accurate. Two recommendations have progress notes indicating no action will be taken (2004 ICD-9 and HRSA demonstration project). Ongoing progress or no progress is claimed on the remaining recommendations (interagency task force on pediatrics, 2011 and 2012 ICD-10-CM issues, name change, and case definition).

 Go to Part Four – Education and Training Recommendations

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1 Response to Care and Services Recommendations

  1. Tom Kindlon says:

    Regarding the empiric criteria recommendation on the CDC:

    “Multiple case definitions currently are used for CFS. The CFSAC rejects the empirical case definition and the terminology of “chronic un-wellness”, both of which are endorsed by the CDC, and recommends that DHHS recognize a need for and commit to support a national effort to arrive at a consensus definition of CFS that is accurate, standardized, and reflective of the true disease. (10/09)”

    The CDC’s response is misleading:

    “The CDC uses the 1994 International Research Case definition. The term “chronic unwellness” is not a CFS case definition component and is not used as such by the CDC.”

    The committee was clearly unhappy with the criteria the CDC were using to diagnose CFS patients. The CDC shouldn’t be allowed hide behind claiming that they are only using the 1994 definition. They are using the 1994 definition in an extremely odd way. Using the 1994 definition the way they used to use it, the prevalence was 0.235% in their most significant study. Using the empiric criteria way of using the 1994, the prevalence jumped to 2.54%, when virtually everything else was the same.

    So not alone have they still published using the empiric criteria, it is often far from clear if they have used the empiric: most people don’t spot the clues e.g. the particular cohort used (for example) and the sample sizes matching previous (known) empiric criteria studies using that cohort.

    It remains to be seen what will happen in recruitment for new studies, which is probably a bigger issue than existing studies where it may be difficult for them to change things (although they could do subgroup analyses using more normal ways of operationalizing the 1994 criteria).

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