What lifestyle modifications and non-pharmacological interventions are recommended for managing patients with dysautonomia?

For patients experiencing dysautonomia, such as orthostatic intolerance or postural orthostatic tachycardia syndrome (POTS), which are common in Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), non-pharmacological interventions primarily focus on energy management and support for physical functioning ¹.

Energy Management:

• This is a self-management strategy led by the patient with support from a healthcare professional in an ME/CFS specialist team ¹.
• It involves managing all types of activity, including cognitive, physical, emotional, and social demands, taking into account the overall activity level ¹.
• The aim is to help individuals learn to use their available energy while reducing the risk of post-exertional malaise or worsening symptoms by exceeding their limits ¹.
• The approach is flexible and tailored, recognising that each person has a different and fluctuating energy limit ¹.
• A plan for energy management should be developed as part of the patient's care and support plan, discussing and recording aspects such as cognitive activity, mobility, activities of daily living, psychological/emotional/social demands, rest, relaxation, sleep quality, and the effect of environmental factors ¹.

Physical Functioning and Mobility:

• It is important to provide information, advice, and support on how to recognise and prevent possible complications of long-term immobility ¹.
• Support may include assistance with bed mobility, moving from lying to sitting to standing, transferring from bed to chair, using mobility aids, walking, joint mobility, muscle stretching, muscle strength, and balance ¹.

Referral and Specialist Care:

• Be aware that people with ME/CFS may experience orthostatic intolerance, including POTS ¹.
• Medicine for orthostatic intolerance in people with ME/CFS should only be prescribed or overseen by a healthcare professional with expertise in orthostatic intolerance ¹.
• Refer people with orthostatic intolerance to secondary care if their symptoms are severe or worsening, or if there are concerns that another condition may be the cause ¹.