PACE Protest

Many of you will have heard of the PACE study, a large multicentre study of Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS conducted in the UK. The first paper from this research was published in 2011 and the publicity around it suggested that many individuals with ME/CFS could be cured with these treatments. Several more paper from this study have been published since all suggesting that CBT and GET are more effective than pacing.

The experience of those of us who work in the field is very different. In my experience CBT can be a very useful therapy for treating mental health symptoms such as anxiety and depression and to help people cope with the impact of chronic illness. In my opinion. CBT doesn't cure chronic medical conditions. GET reliably results in patients developing post exertional malaise (PEM) and getting worse.

This conflict wouldn't be much of a problem – those of us with knowledge in the field use CBT to help patients cope and pacing to help moderate and increase activity levels. As a clinician my primary responsibility is to help my patients live the best life possible so the path on this is clear.

However insurance companies have a different interest. Their interest is to pay as little as possible to clients who are disabled so that that they earn larger profits. Some such companies have taken the PACE results at face value and mandate clients to participate in CBT/GET focussed rehabilitation programs. Then when patients get worse they blame the patient for not trying hard enough or not collaborating with treatment and they cut off their benefits. Over my 15 years in the field I have seen this numerous times. I haven't seen a single patient benefit from the CBT/GET rehabilitation provided by insurers. Some patients survive but most do not, their conditions worsen sometimes severely and for months to years. In the interests of fairness, it is possible that some people whom I haven't met or heard from do benefit and that only the discontented seek my assistance.

I, for one have been puzzled how a large research study could generate results that are so different from what I see every day in my practice. Now some of the reasons why may be coming to light. Journalist David Tuller has written a clear, concise several part analysis of the PACE study. He concludes that there are 4 major methodological and ethical problems with the PACE study which may have impacted the accuracy of the results.

In brief, 1. The criteria for recovery in the PACE trial were changed part way through the study. 2. The recovery criteria were loose enough that 13% of the participants qualified as recovered on some criteria prior to treatment. 3. Later participants in the PACE trial were given a newsletter letting them know that the two interventions being tested had been recommended by the UK government "based on the best available evidence." 4. Participants didn't improve on any of the objective measure used such as whether they got back to work or not. 5. Participants were not advised that the main investigators have had longstanding financial and consulting ties with disability insurance companies.

To read more by David Tuller on why the PACE results have been criticized go to: http://www.virology.ws/?s=david+tuller

Based on Mr. Tuller's research, 5 prominent researchers have written an open letter to the Lancet (the journal in which the PACE trial was published) to request an independent analysis of the methodology and results. To read the open letter to the Lancet go to: http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/

 Author: Eleanor (Ellie) Stein MD FRCP(C)

I am a psychiatrist with a small private practice in Calgary and am an assistant clinical professor in the faculty of medicine at the University of Calgary. Since 2000, I have worked with over 1000 patients, all with ME/CFS, FM and ES. My passion for this field comes from my own struggle with these diseases, my desire to improve my health and then pass on what I learn. My goal is for every patient in Canada to have access to respectful, effective health care within the publicly funded system. 

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