CFS / ME Condition Evolution

From my last post you now hopefully have a general understanding of what CFS / ME is but to fully appreciate the true complexity and brutality of this condition, we need to go a lot deeper.

Let’s start with the name. For most I guess ‘Chronic Fatigue Syndrome’ would seem to be fairly descriptive, sufferers feel tired most of the time. Oh, if only it was a simple as that, the solution would also be simple, improve your quality of sleep and hey presto!

CFS is also referred to as ME, which stands for Myalgic (widespread muscle pain) Encephalomyelitis (inflammation of the brain and spinal cord affecting myelin, the protective coating for nerve signalling). This is starting to sound more complex right - but how does the affect the sufferer?

Whilst there is often a sudden onset of symptoms, which can be quite debilitating for some suffers, often the symptoms evolve over time – that was certainly the case for me. This evolution of symptoms and the associated varying cyclic severity make it so difficult to understand and diagnose. Every sufferer I have spoken to has at some point been unfairly categorised, usually by someone who clearly doesn’t know them very well, as a malingerer or hypochondriac.

I often describe the typical condition evolution using the diagram below.

Chronic Fatigue Syndrome Condition Evolution

The trigger could be a viral inflection, a trauma (current or historical) or prolonged stress or anxiety. For me, I believe the trigger was a viral infection in my inner left ear which led to brain stem inflammation and as a consequence flipped my autonomic nervous system into ‘sympathetic’ mode, otherwise known as ‘fight or flight’. Unfortunately, the virus persisted for so long that my nervous system could not naturally switch back to ‘parasympathetic’ mode, the ‘rest and digest’ state as it is often referred to.

For any chronic condition, patterns of pain and discomfort are repeated, so much so that the neural pathways in our brains become fixed, like a much trodden pathway, making is so difficult to reset even long after the trigger, in my case the viral infection in my left ear, has been resolved.

In this chronic state of ‘fight or flight’ other consequential changes occur in the body. The HPA ( Hypothalamic-Pituitary-Adrenal ) axis starts to malfunction, creating additional symptoms to the collage.

Not long after, the impact reaches a cellular level, with the performance of the cell’s mitochondria (the tiny battery packs that power the healthy function of the cells that make up every part of our body) impacted, leaving the sufferer feeling low on energy and physically depleted.

The impacted mitochondrial performance also impacts the duration and quality of the suffers sleep, at the very time when sleep is exactly what the sufferer needs more of to repair and restore. This vicious cycle is a clear example of the cruelty of this condition. Long term the consequential oxidative stress has significant health impacts for the sufferer triggering other conditions and premature aging.

In future posts I will provide more detail on each of the key elements of this evolution, and then explain how I have addressed each one to manage my condition, regain more quality of life and move toward recovery.

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Fight or Flight

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What is Chronic Fatigue Syndrome