M.E. is a recognised, relapsing and remitting medical condition with many complex, fluctuating symptoms.
“M.E.” stands for “Myalgic Encephalopathy”, indicating the “pain in the muscles, neurological problems and general suffering” that accompany this chronic and debilitating illness.
There is no known cause of M.E. as yet, although it most commonly follows persistent viral infection or stress. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset and are not always aware there is an ongoing health issue until years later.
All types of people at all ages are affected. Currently, it is estimated that some 250,000 people in Britain are affected by this illness.
A Rose by Any Other Name
M.E. is known by many names, including:
- Myalgic Encephalomyelitis (M.E.)
- Chronic Fatigue Syndrome (CFS)
- Post Viral Fatigue Syndrome (PVFS)
- Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
However, none of these accurately reflect the full scope of the illness and each sufferer has a preference over what terminology to use.
What are the symptoms of M.E.?
Commonplace symptoms include:
- Severe and debilitating fatigue,
- painful muscles and joints,
- disordered sleep,
- gastric disturbances akin to Irritable Bowel Syndrome (IBS),
- poor memory (especially short-term) and concentration.
There is no predictable pattern to M.E. The profusion of symptoms can be confusing and alarming, and symptoms can fluctuate greatly over short periods of time.
What do the symptoms actually entail?
- Utter exhaustion, often to the point of collapse and which is totally different from the normal “tiredness” which healthy people experience. Just walking a couple of steps can be like tying lead weights to your hands and feet and then going mountain climbing.
- Fatigue levels fluctuate over the day and are different from patient to patient.
- Pallor of the skin may be evident when fatigue is worst.
- Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity.
- Persistent fatigue must be present for a diagnosis to be made, but is not always the worst symptom.
- M.E. pain can be difficult to ease with standard painkillers. It occurs anywhere in the body, but particularly as:
- headaches (sometimes akin to migraines with nausea and visual disturbances included)
- intense muscle and joint pain, especially in the lower limbs
- Skin sensations such as skin-crawling and pins and needles may be felt, as well as muscle cramps, twitches and/or restlessness.
- Poor short-term and medium-term memory,
- Mental confusion and mental fatigue (the brain seems to “run out of steam”),
- Difficulty concentrating,
- Difficulty word-finding and thinking,
- Inability to plan or organise thoughts.
These symptoms together are commonly called “brain fog”.
There are many other symptoms, which are not always obvious and can be easily missed (or confused with other illnesses).
- Body temperature disturbance, or a lack of temperature control,
- Dizziness, vertigo, postural hypotension (a form of low blood pressure that can make you feel dizzy or light-headed when you stand or sit up),
- Sensitivity to light and noise
- Sleep disturbance, including: Hypersomnia (sleeping all the time), insomnia (inability to sleep at all), restless sleep, unrefreshing sleep, and sleep reversal (sleeping during the day but being awake at night)
- Nausea, loss of appetite, gastrointestinal disturbance and irritable bowel,
- Mood swings, panic and anxiety attacks, and depression,
- Acquired sensitivity to food, medication, alcohol, odours and chemicals,
- Sore throat and swollen or tender lymph nodes,
- Chest pain and difficulty breathing.
Treatment and Diagnosis
There is currently no accepted cure and no universally effective treatment. Those treatments which have helped to reduce particular symptoms in some people (like Cognitive Behavioural Therapy or Graded Exercise Therapy) have unfortunately proved ineffective or even counter-productive in others.
An early diagnosis, together with adequate rest during the acute phase and during any relapse, appears to bring the most significant improvement.
Most people with M.E. fall into one of four groups:
- Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.
- The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
- The minority, who remain severely affected and may require a great deal of practical and social support.
- A few, who show continued deterioration.
M.E. has attracted more than its fair share of controversy. Initially, and for many years, there was a debate as to whether it was actually an illness at all (and some doctors still treat patients badly). In the ’80s, illnesses under the CFS umbrella were called “yuppy ‘flu” (because it appears to target those with high stress) and sufferers were considered lazy or frauds.
Although the situation is still not perfect, many influential bodies (The World Health Organisation, the Department of Social Security, the Department of Health, the Royal Colleges of Physicians (psychiatrists and General Practitioners amongst them)) are now in agreement that it is real. Even so, the medical community doesn’t quite know what to do with us: each patient diagnosed with M.E. could be under a completely different department from another.
Many sufferers of M.E. have put up with years of abuse or judgemental behaviour. This stress helps to cause relapses, so it’s important for family, friends and caregivers to understand the illness and to be supportive.