by Kent Drescher, PhD, Bay Area Chapter Co-Director
I’ve had FSHD symptoms for over 50 years. It seems like I’ve spent much of that time waiting. Waiting for treatment. Waiting to see what precious physical ability I will lose next. Waiting for a cure. Along with physical symptoms of FSHD (e.g. weakness, pain, fatigue) there are large mental and emotional costs. These range from hopelessness and depression to worry about one’s future. It also brings struggles with self-worth as we fall prey to societal expectations about body image and implicit bias about disability. Unfortunately, little research has examined those costs.
I am excited to share positive results from a recent clinical trial of a psychological treatment for the mental and emotional costs of FSHD and other neuromuscular diseases. Michael Rose, Christopher Graham, and their team found large positive improvements in quality of life and mood within the group of patients who completed four weekly self-help modules at home using Acceptance and Commitment Therapy (ACT). Their study randomized 139 patients with neuromuscular disease (50% had FSHD) into two groups, comprising standard medical care (SMC) and ACT plus SMC.
ACT is a psychotherapy supported by over 600 clinical trials across many types of life problems. Its primary goal is to increase a person’s Psychological Flexibility. The ACT treatment in this study involved completing four weekly written / audio exercises at home (45-90 minutes to complete). Each participant also received a weekly therapist phone call (15-30 mins) to review the weekly materials and answer questions. They then evaluated participants 3, 6, and 9 weeks after they completed the ACT materials.
The ACT group saw big improvements in the primary outcome designed to measure life quality in muscle disease patients. It examines the impact of muscle disease on the patient’s activity, independence, social functioning, emotional functioning, and body image. The study also found improvements in other outcomes, including anxiety, depression, psychological flexibility, pain, fatigue, and social connection. This study is only the third clinical trial to show positive benefit from a psychological intervention for muscle disease and the first that targets outcomes broader than physical activity/fatigue.
Finally, at least some of our waiting can be over. There is now evidence supporting our ability to take back control over the quality and direction of our lives as we continue to wait for physical treatments to stop disease progression and ultimately for a cure.
Rose, M, et al (2022). A randomised controlled trial of acceptance and commitment therapy for improving quality of life in people with muscle diseases. Psychological Medicine 1–14. https://doi.org/ 10.1017/S0033291722000083
Kent Drescher is a clinical psychologist and an FSHD patient. He lives in California with his wife. They have two married sons, and four grandchildren.
For a basic introduction to ACT, check out this video from The Zen Social Worker