Phoenix Rising has signed, along with 11 U.S. ME/CFS organizations, a letter calling on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) to investigate the PACE trial concerns raised by David Tuller, other researchers and many patients and then take the steps needed to protect patients.
Take Action
You can add your voice by signing this accompanying petition. While the petition is directed to the CDC and AHRQ, their response will affect other countries as well, so we encourage people from all countries to sign.
Background
PACE is hugely influential in how patients are treated in the media, by society, and especially in medical practice. In the U.S., many ME/CFS clinical guidelines, including those of the Centers for Disease Control and Prevention (CDC), recommend CBT and GET, based in part on the PACE trial.
This is true even in medical education and clinical guidelines published since the 2015 Institute of Medicine (IOM) report. One updated guideline combines the IOM criteria for diagnosis with PACE-based recommendations for CBT and GET and also links poor prognosis to illness belief.
The impact of PACE is also seen in scientific evidence reviews. In 2014, the U.S. Agency for Healthcare Research and Quality (AHRQ, part of HHS) recommended CBT and GET, based in part on PACE, which it ranked as a “good” study. This is significant because the AHRQ Evidence Review can be used to support CBT and GET recommendations in future journal articles and in the clinical guidelines of any country. This evidence review already has been used for this purpose in at least one U.S. clinical guideline.
Even aside from concerns with the conduct of PACE, the AHRQ Evidence Review recommendation for CBT and GET for all ME/CFS patients is questionable since the evidence review itself acknowledged that PACE’s Oxford definition was overly broad and could include patients who do not have ME/CFS. NIH’s 2015 Pathways to Prevention report felt this problem was so serious that it called for the Oxford definition to be retired.
Continuing to use PACE and similar Oxford definition studies to support treatment recommendations for all ME/CFS patients is an issue of grave concern because it confuses doctors on the nature of the disease and results in medical treatment that can harm patients.
Take Action
You can add your voice by signing this accompanying petition. While the petition is directed to the CDC and AHRQ, their response will affect other countries as well, so we encourage people from all countries to sign.
Background
PACE is hugely influential in how patients are treated in the media, by society, and especially in medical practice. In the U.S., many ME/CFS clinical guidelines, including those of the Centers for Disease Control and Prevention (CDC), recommend CBT and GET, based in part on the PACE trial.
This is true even in medical education and clinical guidelines published since the 2015 Institute of Medicine (IOM) report. One updated guideline combines the IOM criteria for diagnosis with PACE-based recommendations for CBT and GET and also links poor prognosis to illness belief.
The impact of PACE is also seen in scientific evidence reviews. In 2014, the U.S. Agency for Healthcare Research and Quality (AHRQ, part of HHS) recommended CBT and GET, based in part on PACE, which it ranked as a “good” study. This is significant because the AHRQ Evidence Review can be used to support CBT and GET recommendations in future journal articles and in the clinical guidelines of any country. This evidence review already has been used for this purpose in at least one U.S. clinical guideline.
Even aside from concerns with the conduct of PACE, the AHRQ Evidence Review recommendation for CBT and GET for all ME/CFS patients is questionable since the evidence review itself acknowledged that PACE’s Oxford definition was overly broad and could include patients who do not have ME/CFS. NIH’s 2015 Pathways to Prevention report felt this problem was so serious that it called for the Oxford definition to be retired.
Continuing to use PACE and similar Oxford definition studies to support treatment recommendations for all ME/CFS patients is an issue of grave concern because it confuses doctors on the nature of the disease and results in medical treatment that can harm patients.
