Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
This recent report by Friedberg et al. critically examines research claiming that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are effective and safe treatments for ME/CFS.
Analysis reveals unsubstantiated claims of recovery in non-blinded trials, which relied on subjective outcome measures, overly broad illness criteria, a flawed disease model and inadequate reporting of harm.
Instead of behavioural therapies, the report recommends a multi-disciplinary approach to aid patients in managing this complex illness.
“This [cognitive behavioural] model stands in stark contrast to the harsh reality of this disabling condition and the significant evidence of neurological, immunological, autonomic, and energy metabolism impairment.”
“With this inter-professional approach, practitioners can lessen harms while helping patients improve their health, function, and quality of life to the extent possible.”Friedberg et al (2020)
For over two decades, the standard of care for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been cognitive behavior therapy (CBT) and graded exercise therapy (GET). Both interventions had been recommended by the US Centers for Disease Control and the UK NICE guidelines. Behavioral intervention as the clinical standard was given a considerable boost by the 5 million–pound PACE trial, a large multi-arm randomized trial of CBT and GET launched in 2007. This British government–funded trial was intended to definitively answer whether such interventions were beneficial in ME/CFS. In their 2011 and 2013 publications, the PACE trial authors announced with widespread publicity that 22% of their patients had “recovered” and 59–61% had clinically improved across the CBT and GET interventions.
More generally, multiple literature reviews have reported that these therapies are not only effective at improving fatigue and, to a lesser extent, physical function in ME/CFS but also safe. It would seem obvious then that good clinical care of these patients would include these behavioral interventions. But, a closer look at these trials has generated many concerns about their applicability to these patients. This perspective critically examines their findings and more generally discusses the behavioral intervention literature in ME/CFS. Finally, we briefly describe a pragmatic clinical approach for these often-marginalized patients.
Friedberg, F., Sunnquist, M. & Nacul, L. Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of General Internal Medicine 2020; 35: 906–909. https://doi.org/10.1007/s11606-019-05375-y