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Committee Recommendations

October 28-29, 2008

CFSAC voted upon and agreed for the following recommendations to be forwarded to the Assistant Secretary for Health and the Secretary:

  1. It is recommended that DHHS develop, or contract with a third party vendor to develop, a CFS Tool Kit for Patients and caregivers of patients (something similar to the CFS Tool Kit for Providers). This toolkit should contain information pertinent to diagnosis, treatment, and a detailed list of tools for CFS patients to help alleviate their symptoms. CFSAC recommends that this be done with diagrams of exercises that are beneficial, sleep health tips, and pain relieving tools that include physical therapy, medication, and other tools. The Patient Tool Kit should provide the patient and caregivers with resources to help patients manage their illness and find evidence-based treatment options.

  2. It is recommended that CDC’s external review process evaluate CDC’s use of third party contracts for provision of logistical support for research projects.

  3. It is recommended that DHHS solicit the Department of Education’s cooperation on issues relating to pediatric CFS.

  4. It is recommended that the Transition report to the new Administration and Secretary include the background of the CFSAC and CFS and a list of the recommendations that have been developed by this Committee over the past two chartered periods, with any action taken on each point.

  5. CFSAC endorses the planned State of the Knowledge Conference to be developed by the NIH.

  6. CFSAC recognizes that much can be done to ensure that every child with CFS has the best possible access to support and treatment and asks that the Secretary facilitate a taskforce or working group to establish an ongoing interagency and interdepartmental effort to coordinate school, family, financial, and health care support for children and young adults with CFS.