One of the reasons this illness seems so difficult to investigate and treat is the fact that it affects many different but interrelated systems in our body. Each individual is likely to have different extents of disturbances in the different systems. In some cases attempts to tackle one of the systems can impact negatively on another so balanced improvement is difficult to attain. However, I believe that by having an understanding of the way this illness is impacting on our various systems, we can understand where we need to focus our self-help.
The mitochondria are the mechanisms within our cells that produce energy. It seems that mitochondrial dysfunction is common to all ME/CFS sufferers with some studies indicating a correlation between severity of the illness and the extent to which the mitochondria are affected. When our mitochondria don’t work properly excess demands for energy cause important molecules to be lost instead of recycled. This means that even less energy will be available to us until we have had time to rebuild these molecules. Rebuilding these substances from scratch instead of recycling them can take days. This explains why it takes us so long to get over things when we overdo it (‘post-exertional malaise’). Inefficient energy production in the muscles can also lead to an early switch to anaerobic energy production causing a build-up of lactic acid and stiff, sore muscles.
To tackle this dysfunction it is really important that we only use the amount of energy that we can readily recycle. We need to be able to judge how much energy we have available to us and use it wisely. Pacing is important as short spurts of activity with rests in between will ensure energy is recycled before it runs out.
Although I am not clear about what exactly causes mitochondrial dysfunction it seems that the chemicals produced by our immune response, viruses and toxins, and lack of appropriate nutrients such as magnesium, vitamin B12 and essential fatty acids could all be implicated. Hence tackling immune dysfunction and ensuring appropriate nutrition could all contribute to improving this central aspect of the illness. A diet high in natural antioxidants can reduce oxidative stress improving conditions for cellular energy production.
Immune dysfunction is implicated by the fact that the illness is usually triggered by some kind of pathogen or toxin. There seem to be several ways that ME/CFS sufferers experience a compromised immunity, sometimes experiencing different aspects at different stages of the illness. For some it seems that our emergency immune response doesn’t switch off causing extended sleep disturbance and flu like pain. Sometimes our immunity becomes inefficient, struggling to deal with new infections and allowing dormant infections to reactivate. For many of us a new infection triggers a worsening of all our usual symptoms, without the symptoms the same infection would prompt in others. For some, inefficient recognition of foreign substances can lead to increased allergies and autoimmune issues.
Its clear to me that an important focus of self-help is to provide the best conditions possible for a healthy immune system. This involves tackling sleep disturbance and ensuring I get enough quality sleep, eating a healthy diet, taking supplements and tackling any digestive issues to ensure appropriate nutrition.
Other bodily systems that can impact on our immune response include our hypothalamic-pituitary-adrenal axis and autonomic nervous system, the lymphatic system, the gastro-intestinal system and the liver detox system.
The Maladaptive Stress Response and HPA Axis Dysfunction
The hypothalamic-pituitary-adrenal axis refers to a system of organs that controls our reaction to stress along with many other bodily functions including digestion, immunity, sleep/wake cycle and storage and expenditure of energy. When we perceive a threat our sympathetic nervous system is activated to prepare us for a fight or flight reaction, preparing for an increased use of energy in our muscles, pulling resources away from our digestion and immunity. The HPA axis is the hormonal communications system that works in conjunction with the autonomic nervous system. When there is dysfunction in the HPA system, many people experience the effects of an overactive sympathetic nervous system with resulting digestive and immune difficulties. This over responsiveness of the HPA axis is often called a maladaptive stress response. The hormones involved in the stress response are also involved in maintaining blood sugar levels and regulating the sleep/wake cycle. Hence a dysfunction of the HPA axis can contribute to unstable blood sugar levels and a disrupted sleep/wake cycle.
Massage, aromatherapy, t’ai chi, yoga, relaxation and meditation can all help calm sympathetic nervous activity enabling our HPA axis to focus more on the important functions of digestion and immunity. Psychological therapies may also help us reprogramme our perception of ‘threat’. By introducing regularity to our daily routine we can help re-establish our body clock enabling the appropriate hormones to be released at the appropriate times.
The Perrin technique is based on the theory that the HPA axis dysfunction is caused by a toxic build up in the fluid around the brain and spinal cord. Manipulation and massage to aids lymphatic drainage aims to alleviate this dysfunction. However improved lymphatic drainage can result in an increase in the levels of toxins in the blood and a heavier load on the liver detox system. Appropriate movement and exercise and drinking plenty of fluids are also important for promoting detoxification and healthy lymphatic flow.
Our gastro-intestinal system plays a vital role allowing important nutrients to enter our blood stream and preventing unwanted toxic substances from doing so, eliminating them from the body. As the location of 80% of our immunity, any immune system dysfunction can result in disrupted digestion. When digestion is disrupted important nutrients may not be effectively absorbed causing problems with other bodily systems, particularly with energy production. A leaky gut could allow extra toxins into the blood system increasing the likelihood of allergies and autoimmune responses (where the body attacks itself) and further complicating cellular ability to produce energy. In order for the body to have the best chances of healing itself, the cause of any gastro-intestinal symptoms must be tackled.
We need to support the immune system with sufficient sleep, appropriate nutrition and fluid intake, and movement and exercise that will promote lymphatic circulation. We may need to take measures to tackle sleep disturbance and digestive disorders, improve nutrition with supplements and improve lymphatic drainage with massage.
We need to regulate our HPA axis and autonomic nervous system. A regular routine, massage, aromatherapy, t’ai chi, yoga, relaxation and meditation may all contribute as may a variety of psychological therapies. We may also need to take dietary measures to stabilise blood sugar levels.