IACFS/ME President’s Letter: "Recent Commentaries on the PACE Trial"

[Tom Kindlon]

From: IACFS/ME Newsletter

Volume 10, Issue 2 – April 2017

IACFS/ME President’s Letter

Extract:

Recent Commentaries on the PACE Trial
The PACE Trial continues to be of great concern to patients and clinicians due to the harmful effect of GET (Graded Exercise Therapy) on many patients with ME/CFS and the impossible expectation that GET and CBT (Cognitive Behavioral Therapy) will cure patients with ME/CFS. The PACE Trial is sometimes used as a guide for insurance benefits and patients may be denied disability benefits if they are designated as "non-compliant" when they are unable to participate in GET.

Our Association journal, Fatigue: Biomedicine, Health and Behavior, has recently published three commentaries on the controversial PACE behavioral intervention trial in ME/CFS (http://www.tandfonline.com/toc/rftg20/5/1?nav=tocList) including a critical look at the trial (Wilshire et al; 2017), a response to this commentary from the PACE trial authors (Sharpe et al. 2017), and a rejoinder from Wilshire and colleagues. These papers are all open access. Also a thoughtful opinion piece on the PACE trial in the New York Times by Julie Rehmeyer and David Tuller (March 17th; https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?_r=0), and my letter to the editor (March 27th; https://www.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html) about this article suggest that the behavioral intervention issue is getting into the mainstream media.

We need this type of high visibility media coverage to effectively challenge the misleading “recovery” claims of behavioral intervention in ME/CFS. Alternatively we can promote efforts (through our conferences and IACFS/ME practitioners’ primer) to educate physicians and the public about the serious medical issue this illness represents.

Fred Friedberg, PhD
President
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)
www.iacfsme.org

https://online.iacfsme.org/iacfsmes...k_through?p_mail_id=E372957A2619972B1C1046691

 

[Tom Kindlon]

Note that only the first paper is open access.

However the rejoinder can be read here: https://www.researchgate.net/public...arpe_Chalder_Johnson_Goldsmith_and_White_2017