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CFSAC Recommendations – May 22-23, 2013

Recommendation 1

In response to a CFSAC recommendation made during the October 4, 2012 meeting, members unanimously approved the following list of websites to be added to the Office on Women’s Health website at www.womenshealth.gov, as well the criteria for used for inclusion on the list.

ME/CFS Organizations (Patient and General): CFIDS Association of America; IACFS/ME; Massachusetts CFIDS Association; New Jersey Chronic Fatigue Syndrome Association; Organization for Fatigue & Fibromyalgia Education and Research; PANDORA; Phoenix Rising; Rocky Mountain CFS Association; and Wisconsin ME/CFS Association Inc.

ME/CFS Research Institutes: CFIDS Association of America; Simmaron Neuroimmune Research Foundation; Chronic Fatigue Initiative; Stanford Chronic Fatigue Initiative; Open Medicine Institute; Institute for Neuro-Immune Medicine at Nova South Eastern University; and Stanford School of Medicine/Chronic Fatigue in the Department of Medicine.  

All met the approved criteria.

Recommendation 2

CFSAC members unanimously approved adding the following sites to the list of websites to be posted to the OWH website.

The National Advocacy Alliance for ME/CFS; the ME/CFS Forums; the ME/CFS Center at Mt. Sinai; the HHV-6 Foundation; and Health Rising.

All met the approved criteria.

Recommendation 3

CFSAC accepts the proposed criteria for ME/CFS Organizations to be listed on the OWH website.

Recommendation 4

CFSAC accepts a list that includes high-priority recommendations that will be listed on the CFSAC website in reverse chronological order.

Recommendation 5

New recommendations to our high-priority list will be added as they are approved by the committee.  Recommendations can be removed from the list by a majority of CFSAC voting members during a regularly scheduled meeting of the full committee.

 

CFSAC Work Groups Established 05/23/2013

Dr. Marshall gave the following information describing the work group concept:

  • It should be a core group of voting members, ex officios, and liaisons.
  • The minimum number should be three; the recommended number is somewhere less than seven.
  • Outside input can be invited as needed on an ad hoc basis.
  • We can add to or take from the working group based upon the specific need that you have.
  • The goal will be to develop a core plan along with timelines for implementation, timelines for progress toward developing implementation, and provision of interim progress reports that can be discussed.
  • The end goal is to prepare the background as well as the specific recommendation for approval of the CFSAC to be sent on to the Secretary.

Work Group 1

To investigate strategies to increase the number of capable investigators that are successfully funded for ME/CFS research.

Work Group 2

To develop recommendations for increasing the number of interested and capable healthcare providers to give the highest caliber of expert clinical care for ME/CFS patients.


Content created by Assistant Secretary for Health - Chronic Fatigue Syndrome Adv. Com
Content last reviewed on June 24, 2014