Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome, is a chronic illness.
It is estimated to affect around 250,000 people in the UK- but still isn’t properly researched or funded.
Do you, or does someone you know, have ME/CFS? Have you been recently diagnosed or think you should be diagnosed? The condition and its abundance of literature can seem overwhelming to a new face, so we have tried to put the facts in simple terms that are easy to understand.
Symptoms will differ in each individual. They generally include:
- Extreme, debilitating fatigue
- Muscle pain
- Sleep disturbance
- Brain fog and difficulty concentrating
- Loss of stamina
- Headaches and migraines
- Slurring or loss of speech
- Heart palpitations
- Post-exertional malaise*
*Simply put, post-exterional malaise occurs when someone with ME/CFS exerts themselves physically (or sometimes mentally) and doesn’t immediately feel the effects, but ‘pays’ for it later with worsened symptoms.
Frequently Asked Questions
Are ME and CFS the same condition?
The differences between ME and CFS are often debated. Some regard them as separate conditions whereas others use the names interchangeably. The term ‘Chronic Fatigue Syndrome’ was introduced more recently, however many patients feel it is a reductionist umbrella term which does not fully represent their condition. Some also call the illness ‘Myalgic Encephalopathy’, which by eliminating the ‘myelitis’, separates the condition away from the debated theory that its cause is inflammation within the brain and spinal cord. #ThisIsME uses the term ME/CFS as a general description to include all forms of the illness, but it is up to the individual how they want to define their condition.
What causes ME/CFS?
There is not currently a confirmed direct cause of ME/CFS. However, the condition is usually triggered by a significant stressful event, another illness, or an infection. Some patients experience a sudden, steep decline whereas others deteriorate much more gradually, lowering to a new ‘baseline’ every so often.
Is there a cure for ME/CFS?
Currently, there is no universal drug or cure for ME/CFS. Various treatments have been suggested, such as light exercise, specific diet plans, and meditation, however many patients have reported feeling even worse as a result. The most important step towards recovery is pacing yourself– overexerting yourself on good days may result in a drastically reduced state on bad days.
Children and young people with ME/CFS tend to recover at a faster pace. Others may improve slowly over a long period of time, however for some it is a life-long illness.
Who can be affected by ME/CFS?
ME/CFS is currently estimated to affect around 250,000 people in the UK*. While more common in women aged 20-40, it can affect anyone of all genders and ages, from children to the elderly. The condition ranges in severity, with those affected mildly being able to live semi-regular lives while those with a moderate to severe case are likely to be house or bed-bound.
*ME Association, 2019