In 2014, a Dutch team reported that aerobic exercise training (AET) and cognitive behavioral therapy (CBT) decreased fatigue and improved the quality of life significantly in FSHD patients. Now, the same group has published a study demonstrating that not only did patients given AET or CBT feel more energized and active, but that their muscles degenerated more slowly than in patients who received standard care.
Strikingly, the effect was largest in the CBT group. CBT often focuses on how your thoughts can influence your behaviors and the choices you make. It is often used to treat patients with chronic illness to improve their functioning in their daily life.
The study comprised 31 patients in total; 13 received standard care, nine received AET, and nine received CBT. The results were primarily measured via magnetic resonance imaging (MRI). The scientists looked at edema and fat infiltration in the muscles. Edema is the level of water in muscles, and is interpreted as a sign of inflammation. When muscles degenerate, they are replaced by fat. This process is known as fat infiltration, and the fraction of a muscle group that has turned to fat is a good indicator for the progression of the disease.
With the MRIs, the scientists were able to measure the percentage of fat in a muscle and draw conclusions about the progression of the disease. They noted that this is a very useful metric that should be utilized in future studies.
While not every muscle responded the same to the treatments, the study showed significant differences between the control group of untreated patients and the patients who received either CBT or participated in an aerobic exercise program. In the control group, fatty infiltration progressed 6.7 percent over the course of a year. However, in the aerobic group, the increase was only 2.9 percent, and in the CBT group only 1.7 percent. This suggested a marked impact in slowing the degeneration of affected muscles.
Beyond these measurable physical effects, the patients who received CBT or AET showed significant improvement in their physical activity, which led to, among other things, a decrease in their level of fatigue, giving them the ability to participate more fully in their activities and improving their quality of life.
What might be going on?
According to study co-author Nicoline Voet, MD, “We think that an increase in physical activity is essential to treat fatigue and decelerate the increase of fatty infiltration in muscles of patients with FSHD.”
She noted that an essential goal for CBT is to increase physical activity. CBT also addresses ways to manage fatigue, pain, sleep disorders, and psychological barriers to participating in social activities. The resulting increase in physical activity, Voet hypothesizes, can lead to “epigenetic changes and a decrease in inflammation,” which could be the underlying mechanism that slows down the rate of fatty infiltration.
The Dutch group would like to see researchers in other countries replicate their study, Voet said.
This year, the Dutch group plans to recruit patients for a new trial, called “Life Balance,” which aims to help patients balance their current and future activities with their mental and physical capacities. Part of the plan for this trial is to replicate the CBT study and investigate underlying epigenetic factors, said Voet.
What does this mean for you?
“It is important to become, or remain, physically active,” Voet suggested, “because physical activity has a positive effect on fatigue, well-being, overall health, and fatty infiltration.”
The study suggests that CBT can be effective in encouraging greater physical and social activity in FSHD patients. It also suggests that FSHD patients are likely to benefit by incorporating aerobic exercise into their daily routines.
It is important that you consult with your doctor or physical therapist to make sure you find the right balance for your body, and it is advisable to try a graded exercise plan (starting slowly, maybe with only a few minutes, and working yourself up in small increments every day).
Barbara H Janssen*, Nicoline BM Voet*, Alexander CH Geurts, Baziel GM van Engelen, Arend Heerschap. Quantitative MRI reveals decelerated fatty infiltration in muscles of active FSHD patients. Neurology. 2016;86(18):1700-7.
*: contributed equally.