See Part One – Tangled Web
See Part Two – CFSAC Specific Recommendations
See Part Three – Care and Services Recommendations
The CFSAC lists fourteen recommendations in this category, but I covered one recommendation on ICD-10-CM in the Care & Services section. See pages 8 – 11 of the Recommendations Chart (pdf link). There are also some errors in this section of the Chart. One recommendation was repeated, and another was omitted. I’ve also added a recommendation listed in the Research section of the Chart. I point out the recommendations affected by these errors below.
Health Care Providers
Training health care providers to diagnose and treat ME/CFS patients is a critical need, but none of the CFSAC’s recommendations about it were included in the High Priority list. Their recommendations have not been successful, either.
Among CFSAC’s first recommendations was to make CFS a topic of training of health care providers at regional and national conferences sponsored by the Department (September 2004, repeated August 2005). No progress is noted on the Chart. Similarly, CFSAC said the Secretary should recognize the challenges of ensuring CFS is part of any efforts to train or educate health care providers (May 2010). No progress is noted, but the wording does not actually request specific and measurable action.
CFSAC requested that the Surgeon General to send a letter to state health departments and other professional organizations informing them about the education programs and resources (May 2007). No progress is noted here, either, but an update was part of a recommendation the following year. CFSAC requested that a concept paper be produced for consideration by the Surgeon General for development of a workshop (May 2008) as a preceding step to a Surgeon General letter. This recommendation contains a lengthy preamble making the case for such a workshop. This workshop was never held, and the Chart notes no progress on this recommendation. Finally, CFSAC recommended that an AHRQ review of the science be communicated to key medical education outlets, and that a Surgeon General’s letter be disseminated to clinicians and other health professionals (October 2009). No progress is noted, and the AHRQ review was never completed.
Finally, CFSAC recommended that the CFS Toolkit for health professionals be removed from the CDC website (June 2012). The recommendation does not appear in the Chart. However, Dr. Elizabeth Unger of CDC told the CFSAC that the Toolkit would remain on the CDC website until it could be revised, despite the Committee’s recommendation otherwise. (CFSAC Minutes, October 4, 2012, p. 12)
Despite the CFSAC’s obvious concern about educating health care providers, these recommendations have been unsuccessful. CDC has undertaken the production of CME and other provider education resources, but this has proceeded separately from the CFSAC recommendations. CDC’s stubborn refusal to remove the Tool Kit is significant and disappointing.
General Public
The idea of increasing public education through a public awareness campaign was first recommended by CFSAC in September 2004 (repeated August 2005). The CDC conducted a public awareness campaign from November 2006 through 2008, and this recommendation is marked complete. CFSAC recommended that the FY08 and FY09 budgets for the CDC campaign be increased beyond the FY06 level based on the positive initial response to the campaign launch (November 2006). This recommendation is marked complete, and includes a progress note detailing the results of the campaign. Finally, CFSAC recommended that HHS develop a CFS Toolkit for patients and caregivers, similar to the Toolkit for Providers (October 2008). No progress on this recommendation is noted, and CFSAC never revisited the issue.
One puzzle about this area is that the High Priority list included the September 2004 recommendation, despite its status as complete. Until the Committee discusses the priorities at the spring 2013 meeting, we won’t know if the members believe a new public awareness effort is needed and what parameters they are considering.
Others
CFSAC has recommended education activities through a variety of channels, which would have the effect of reaching different audiences. First, CFSAC encouraged education for Social Security reviewers and adjudicators (September 2004, repeated August 2005). The Chart note says that training for SSA adjudicators is ongoing. Second, CFSAC recommended that HRSA communicate with Area Health Education Centers regarding the availability of CME programs through CDC (May 2008). This recommendation is marked complete, and the Chart notes that HRSA communicated to its networks in the summer of 2008.
CFSAC returned to the issue of disability adjudication in 2011, recommending that a workshop be organized to engage disability assessment experts in order to produce a document for patients and adjudicators which could contribute to more efficient and fair disability processes (May 2011). This recommendation is listed twice on page 10 of the Chart, and no progress on this recommendation is reported (although a note related to the CDC Toolkit is listed there).
To help parents of children with CFS to access resources at the Department of Education, CFSAC recommended that a link be added to the CFSAC website for the Department of Education’s Parent Technical Assistance Center Network (June 2012). This recommendation has been completed. Finally, the Committee recommended that HHS should partner with CFSAC members and the Department of Education to educate teachers and school nurses on ME/CFS in children and adolescents (June 2012). The progress note states that this issue is being addressed through the HHS Ad Hoc Workgroup, including information dissemination through the Administration for Children and Families.
Keep in Mind
Of these fourteen recommendations, four have been completed (two on the public awareness campaign, HRSA communication, and link to parent resources). The recommendation to remove the CDC Toolkit was refused. Efforts to train Social Security adjudicators and cooperate to educate school personnel are listed as ongoing. The other six recommendations have no progress noted at all.