A new UK-wide study has found that fatigue is one of the most common and burdensome symptoms experienced by people living with motor neuron disease (MND), affecting nearly all participants in the research cohort.

These findings not only shed light on the prevalence of fatigue in MND but also offer new insights into how this symptom evolves. This knowledge could potentially revolutionise our approach to symptom management.

Under the leadership of Professor Carolyn Young and colleagues from the TONiC (Trajectories of Outcome in Neurological Conditions) study group, this research was a comprehensive analysis of data from over 1,058 people with MND recruited from 36 centres across the UK.

Using validated patient-reported outcome measures, the team assessed the severity of fatigue, its relationship with other symptoms, and how it changed over time.

Key findings:
  • Fatigue is nearly universal: All ratings and scales used showed that over 96% of participants reported fatigue, highlighting an almost universal experience of the symptom.
  • Severity varies: Fatigue was classified by participants as mild (27.3%), moderate (36.1%) or severe (36.2%) based on NFI-MND scores.
  • Fatigue is dynamic: Over an average follow-up of 11.6 months, 60.5% of participants had stable fatigue levels, 23.8% experienced worsening fatigue, and 15.8% saw improvements.
  • Three distinct fatigue trajectories emerged: low, average and high. Those in the high-fatigue group were more likely to experience muscle stiffness, cognitive difficulties and anxiety.
Why is this important?

Notably, the study found that fatigue was influenced not only by physical function but also by cognitive symptoms, breathlessness, pain, and psychological factors. This suggests that a holistic approach to symptom management, addressing both motor and non-motor symptoms, may be key to improving quality of life.

The study also reinforces the need for personalised care strategies. People with lower fatigue trajectories tended to have better overall functioning, fewer cognitive and emotional symptoms, and longer disease duration. Conversely, those with high fatigue were more likely to be male and to experience greater symptom burden.

What is TONiC?

The TONiC study continues to provide valuable longitudinal data on the lived experience of MND, equipping researchers and clinicians with the insights they need to develop more effective, patient-centred approaches to care.

The findings were published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

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