...Two major IACFS/ME efforts are in play. First our ME/CFS Primer for Clinical Practitioners published on our website in May has received many favorable reviews.
In addition, in its June meeting, the (US) CFS Advisory Committee in Washington, D.C. recommended wide dissemination of the Primer, particularly to primary care providers.
The discussion included the National Guideline Clearinghouse (NGC) as a possible venue.
The NGC is a website intended to make evidence-based clinical practice guidelines, related summaries, and companion materials widely available to health care professionals.
It is supported by the Agency for Healthcare Research and Quality, the lead US agency charged with improving the quality, safety, efficiency, and effectiveness of healthcare.
In response to an invitation from the NGC, we submitted the primer for consideration in their guidelines listings. We have just received word that the Primer has been accepted for inclusion and posting on the NGC website in the fall.
This will facilitate much wider dissemination of the document.
A future revision of the Primer will consider the public feedback we have received including
(a) concerns about the negative effect of any type of exercise in severely ill homebound patients;
(b) requests for more information on the potentially positive impact of pleasant activities;
and
(c) strong sentiments for wide dissemination of the Primer...
Fred Friedberg, PhD
President
IACFS/ME
