The research, which has been carried out by the School of Psychology at Queen’s University Belfast, the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London and King’s College Hospital NHS Foundation Trust, has been published in Psychological Medicine.

Acceptance and Commitment Therapy (ACT) encourages people to embrace their thoughts and feelings rather than fighting or feeling guilty for them. The research showed that ACT, when implemented in conjunction with a person’s usual care, can have a positive impact on people living with a range of chronic muscle diseases that do not have a cure.

Dr Andrew Robertson, one of the study’s participants, stated that he found the therapy to be a “game changer” at helping him to accept the effects of his illness.

Some 138 people with MD completed the nine-week study. Half of the group received guided self-help ACT tailored for people with MD. With the help of a trained therapist, they were supported to use skills that would help them to live life in a way that was personally meaningful to them.

Researchers checked in with the participants at three stages over the course of the study. At each stage, the participants receiving ACT showed a statistically significant improvement in their quality of life, including their independence, social and emotional functioning and body image. Participants who received ACT also noted improvements in their overall mood, a secondary but nonetheless important measure of a person’s wellbeing.

Co-first author Dr Chris Graham, a clinical psychologist from Queen’s University Belfast, who led on designing the intervention, said:

“We chose ACT partly because it includes the idea that it is OK and normal to have emotional reactions to the very real challenges presented by MD, but can also help people see ways to live well within this space.

“In my experience, where ACT is effective for someone living with a condition like MD, we tend to see them spending more of their valuable time and energy on activities that are life-enriching, even though some difficult emotions might still remain a part of the picture.”

Professor Trudie Chalder, the study’s lead author from King’s IoPPN said:

“MD can have debilitating effects upon the people that live with what can be a very difficult condition. Our study has shown that a combination of guided self-help ACT and traditional care can have a drastic improvement on their quality of life, providing an invaluable boost to their sense of independence.”

The care of MD generally involves a review of a person’s functional impairment due to muscle weakness, monitoring them for respiratory or cardiac complications, and a referral to local physiotherapy if appropriate. While there is evidence that Cognitive Behavioural Therapy can be effective at helping to manage fatigue in people with MD, there has been no research into its effectiveness into other symptoms. This new study presents good evidence that ACT can provide the psychological support necessary to help those in need.

Dr Andrew Robertson said:

“I was diagnosed with Muscular Dystrophy at 18, a week before I was due to sit my A-Levels. The meeting ended with me being told three things – that it’s incurable, that there are no treatments for it and the best thing I could do was to concentrate on my quality of life

Co-first author Dr Michael Rose, Neurologist and lead researcher from King’s College Hospital said:

“Muscle disorders are a life changing diagnosis that can have dramatic effects on a person’s day to day life. The loss of a person’s ability to take part in activities that they once enjoyed can have a profoundly negative impact on their mental health.”

The researchers are investigating whether there are long-term benefits of ACT, looking into whether the treatment effects persist for up to six-months. The hope is that, in addition to muscle disorders, ACT may present a useful way to live well with the symptoms and impacts of a range of chronic illnesses.

Dr Andrew Robertson concludes:

“In the two decades I’ve lived with my condition, I’ve never once been offered psychological support. ACT has changed that for me. The techniques I’ve learned as part of the trial have been a game changer, and there’s not a day that goes by where I don’t employ it in some form. I really hope that this can be made available for other people like me.”

This study was possible thanks to funding from the UK National Institute for Health Research (NIHR) Research for Patient Benefit grant and Muscular Dystrophy UK.