Understanding ME/CFS: What it is and why it matters

Understanding ME/CFS: What it is and why it matters

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex, chronic neurological condition that affects multiple systems in the body. The severity of symptoms can fluctuate, ranging from mild to very severe.

Causes of ME/CFS

ME/CFS can develop after viral infections, surgery, or significant physical or emotional stress. In some cases, no clear cause is identified. Historically, Epstein-Barr virus (also known as Glandular Fever in the UK) has been a common post-viral trigger. More recently, many cases have been linked to Covid-19, with some individuals developing ME/CFS as part of the broader spectrum known as Long Covid. While Long Covid and ME/CFS share many symptoms, they remain distinct conditions. However, many individuals meet the diagnostic criteria for both.

Diagnosing ME/CFS

Getting a diagnosis can be a slow and frustrating process. It often involves ruling out other possible conditions while considering a patient’s medical history and the nature and duration of their symptoms.

Symptoms of ME/CFS

People living with ME/CFS can experience a wide range of symptoms, which can vary in intensity and change from day to day — or even hour to hour. Common symptoms include:

• Severe fatigue, unrelieved by rest

• Unrefreshing sleep

• Muscle aches, widespread pain, and body heaviness

• Sore throat, swollen glands

• Cognitive dysfunction (“brain fog”)

• Sensitivity to light and sound

Post-Exertional Malaise (PEM)

The hallmark symptom of ME/CFS is Post-Exertional Malaise (PEM) or Post-Exertional Symptom Exacerbation (PESE), commonly referred to as “payback.” PEM refers to the worsening of symptoms after even minimal physical, cognitive, or emotional exertion. This worsening is often delayed, showing up hours or even days after activity.

Unlike other conditions, increasing physical activity does not lead to improvement in ME/CFS symptoms. In fact, it often causes severe setbacks. Even simple activities of daily living (ADLs), like using the bathroom, can trigger flare-ups that require significant recovery time. Many individuals with ME/CFS rely on mobility aids and home adaptations to manage these basic tasks.

Historical stigma and misunderstanding

ME/CFS has long been misunderstood and misrepresented — both in the media and within healthcare systems. In the 1980s, it was disparagingly referred to as “Yuppie Flu,” and misconceptions still persist today. People with ME/CFS may hear dismissive remarks like, “Everyone gets tired,” or “You must enjoy not having to work,” or even “Aren’t you better yet?” These attitudes reflect a broader lack of understanding about the condition and its profound impact.

Managing ME/CFS

Currently, there is no cure for ME/CFS, and it remains under-researched. While there is no universal treatment, individual symptoms may be addressed with medication or supportive therapies. The primary approach to managing the condition is pacing, which involves balancing activity and rest to avoid exacerbating symptoms. This process takes time, trial and error, and ongoing adjustments.

Many people with ME/CFS also adopt a holistic approach, factoring in rest, boundaries, mental health support and lifestyle changes.

Life with ME/CFS

Living with ME/CFS can be isolating. The condition often forces significant changes in life, such as reduced work capacity, disrupted social lives, and shifts in family dynamics. It can also impact self-identity, self-esteem and a sense of purpose. Support is essential for those living with ME/CFS to navigate these challenges and maintain a quality of life.

If this resonates with you, or if you’re seeking support, please reach out to see how I can help.

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The content in my blog posts is provided for your general information purposes only, that maybe of interest to you. Please remember it has not been created with your specific circumstances in mind and therefore should not be relied on as medical advice or any other type of advice.