So, although there is no clearly understood pathway regarding the disorder, based
on the evidence we have so far, a simple way to think about the illness is that:
• In some people there may be a pre-existing vulnerability, such as possible genetic factors or increased activation of the immune system during its development (Morris2019). Developmental changes occurring through childhood could be another vulnerability factor. Many patients were highly active before becoming unwell, often describing an inability to rest or relax prior to the illness and this may indicate a preexisting highly responsive sympathetic nervous system (on mode) and poor responses in the parasympathetic nervous system (off mode). Some conditions including Hypermobility and Autism may also constitute an underlying vulnerability asthey are now being recognised to have associations with Autonomic System Dysfunction.
• In some cases, there is a clear trigger for the onset of symptoms, for example a viral infection or a major emotional event such as a bereavement.
• In other cases, chronic demands over time act as the trigger possibly by causing the body to enter an immune reaction or sickness response, with changes in the HPA Axis and Autonomic Nervous System.
• The illness may impact on the regulation of the autonomic nervous system, causing dysautonomia including orthostatic problems (our body’s response to being upright against gravity)
• The body remains in a protective state and is highly reactive to any changes in internal and external demands, for example having an increased immune response to exertion (Post Exertional Malaise).
• In some people the nervous system remains in high sympathetic arousal and the parasympathetic responses are inhibited restricting the body’s restorative functions, such as sleep, and making it hard to achieve and maintain homeostasis (HPAregulation).
• Mitochondrial function can be altered with disordered recovery after activity meaning there is a reduction in the anaerobic threshold following physical activity. So, the dynamic systems in the body that are supposed to work together and regulate each other to keep us well or in homeostasis are now dysregulated and may work in opposition to each other. Many patients describe that their brain wants to go but the body wants to stop
What can be done about dysregulation?
As these are complex systems that need to regularly adjust and change in response to demands and our world, it is difficult to find one factor that will correct dysregulation. However, we know factors that can aggravate dysregulation along with strategies that can improve stability and support homeostasis.
The approaches that can be helpful to therapy include:
• Regulation of the body clock and circadian rhythms, including sleep, light and eating patterns
• Desensitisation of the sympathetic nervous system and increasing the parasympathetic response.
• Supporting orthostatic tolerance through fluid levels and management techniques.
• Matching energy availability and energy expenditure, understanding that there are different currencies for different types of activity, such as physical, cognitive, social and emotional. Working within the energy envelope, not pushing outside of it.
• Working aerobically within tolerance levels and reducing heart rate at rest and on exertion.
• Minimising immune activation and triggers for increased inflammation
• Balancing and managing overall demands and activity to remain within limits and allow recovery, reducing the impact of a boom-and-bust pattern on the HPA.
• Recovery time for restorative rest following exertion to allow return to baseline
• Ensuring diet is providing appropriate nutrients and delivered in different ways, for example by eating smaller portions more often, supports regulation of blood sugar levels.
Initially the focus is on consistency and regulating, to support stability before increasing the level of demand. This should be done gradually allowing development of tolerance and adaption prior to any further increases in demand, to enable the body to rebalance.
Therapy programmes should work on different phases of stabilisation and then building tolerance. It is important that any strategies are implemented after a careful assessment of the individual’s condition, and which aspects of dysregulation are most prominent and need to be addressed to support greater stability. Understanding how the body’s physiology can be affected by this illness is an important starting point to any therapy programme.
