ME/CFS a Brief Introduction

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ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)

A Brief Introduction:

Living with ME/CFS can be described as a profound, life-altering shift in how a person can exist in their own body.

This debilitating impact is due to a broken energy system and dysfunction at a cellular level. Unfortunately, many people with Long COVID have the same experience.

ME/CFS can be triggered in a few different ways; an infection (often viral), injury, surgery or other stressor.

Recently there has been a huge increase in people with ME/CFS due to the Covid 19 Pandemic. Following infection, some people have developed Long COVID and now meet the diagnostic criteria for ME/CFS.

The diagnostic criteria for ME/CFS gives some insight into the lived experience:

✦ Exhaustion: A body that feels “used up” by the smallest effort. It’s exhaustion that rest doesn’t fix.

✦ Post-Exertional Malaise (PEM): This is the crash that comes after physical, mental and other exertion. The crash might arrive hours after (say) a social event, or on the next day or two. Bed rest is likely needed after a PEM crash.

✦ Sleep issues: This can be needing to sleep a lot through to never waking up feeling refreshed.

✦ Cognitive dysfunction: “brain fog” that isn’t just fog. It's being unable to process information or recall things, and more.

✦ Orthostatic Intolerance: It’s feeling worse when moving to an upright position. Standing in a queue, in the shower, or at the kitchen sink, is problematic.

Many other symptoms may be involved, such as pain, gut problems, and sensitivity to light, sound, smells.

ME/CFS patients are categorised into four severities based on functional capacity.

MILD | MODERATE | SEVERE | VERY SEVERE

✦ Mild - At least 50% reduction in pre-illness activity level.

✦ Moderate - Mostly housebound.

✦ Severe - Mostly bedridden.

✦ Very severe - Totally bedbound and in need of care for basic functions.

STOP | REST | PACE

Energy and activity management to balance activity and rest is the most important part of ME/CFS management.

The goal of pacing is to minimise Post-Exertional Malaise, rather than eliminate it.