ME/CFS Awareness
Understanding a complex, often misunderstood illness
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a serious, life-altering condition that affects millions of people worldwide.
Yet despite its severity, it is still widely misunderstood, under-recognised, and too often minimised — especially when standard medical tests come back “normal”.
This page exists to offer clarity, validation, and reliable information, both for those living with ME/CFS and for the people who care about them.
What Is ME/CFS?
ME/CFS is a complex, multi-system illness. It is not ordinary tiredness, stress, or deconditioning. Common features include: - Profound, unrelenting fatigue not relieved by rest - Post-exertional malaise (PEM)— a worsening of symptoms after physical, cognitive, or emotional exertion - Cognitive difficulties (often described as “brain fog”) - Sleep disturbance - Pain, sensory sensitivity, and neurological symptoms - Immune, metabolic, and autonomic dysfunction Severity varies. Some people are able to work part-time or with adjustments. Others are housebound or bedbound, requiring full-time care. ME/CFS is recognised by the World Health Organization as a neurological condition.
Why ME/CFS Is So Often Missed or Dismissed
One of the greatest challenges with ME/CFS is that: - Many routine tests fall within standard laboratory reference ranges - There is no single diagnostic marker used in everyday clinical practice - Symptoms can fluctuate and are not always visible When tests come back “normal”, people are often told: - "nothing is wrong" - "it’s anxiety or depression" - "they just need to try harder, exercise, or think differently" For those living with ME/CFS — especially severe ME/CFS — this can be deeply harmful. A lack of abnormal results does not mean a lack of illness.
Severe ME/CFS
People may be: - Unable to tolerate light, sound, or touch - Unable to sit up, speak, or feed themselves - Completely dependent on others for care This level of illness requires protection, pacing, and profound gentleness — not pressure, disbelief, or forced intervention.
Why Awareness Matters
Greater awareness of ME/CFS helps to: - Reduce stigma and disbelief - Protect people from harmful advice or interventions - Encourage safer, more compassionate care - Support families and carers who are often isolated and exhausted Awareness is not about blame. It is about understanding the reality of this illness.
Learning More: Our YouTube Channel
We share educational content, lived experience, and discussions around:
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ME/CFS awareness
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Severe and very severe ME/CFS
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Why “normal” tests don’t always mean a healthy system
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Nutrition, biochemistry, and gentle support
You can find our videos on our ME & You YouTube channel, including the following recommended watch:
10 Essential Rules For Living With ME/CFS, what we wish we knew sooner 👉
(This video is particularly helpful for family members, friends, and professionals who want to better understand the realities of ME/CFS.)
Further Support
If you’re exploring whether nutrition-focused health coaching might be supportive for you, you’re welcome to get in touch.
There is no pressure, no obligation, and no expectation — just space for a calm conversation.
Belief, gentleness, and understanding are not optional extras for people with ME/CFS — they are essential.
