The Symptoms of Myalgic Encephalomyelitis
In the 1950s Britain had several outbreaks of a Polio-resembling illness, and in 1955 an outbreak occurred at the Royal Free Hospital, London. An account of this can be found in the British Medical Journal entitled An Outbreak of Encephalomyelitis in the Royal Free Hospital Group, London After the Royal Free Hospital outbreak, a disorder with similar symptoms was found among the general population and the epidemic form came to be considered the exception. Dr Melvin Ramsay of the hospital’s Infectious Diseases department coined the term Myalgic Encephalomyelitis (referring to the effects on the muscles, brain and nerves) recording three main clinical features to the condition:
- A unique form of muscle fatigue whereby, even after a minor degree of physical effort, three, four or five days, or even longer can elapse before full muscle power is restored. Tenderness in the muscle, along with spasms or twitching, also occurs quite frequently.
- Circulation impairment involving cold extremities (hands and feet), increased sensitivity to climatic change, and episodes of sweating (which can occasionally necessitate a complete change of clothes or bedding).
- Cerebral dysfunction involving impairment of memory and powers of concentration. Other typical symptoms include difficulties in completing a line of thought, mixing up words (for example, saying “hot” when the correct word is “cold”), sleep disturbances (including a complete reversal of normal sleep patterns) and emotional lability.
In addition, Dr Ramsay noted that all his patients would report on a characteristic variability and fluctuation of symptoms during the course of the day, along with the very strong possibility of the illness becoming chronic and disabling. M.E. is both complex and individual, which means it is hard to describe the illness without going in to a lengthy description. This is why I believe this original definition by Dr Melvin Ramsay is the best clinical description for the illness. You will find information about the other names and clinical descriptions associated with this condition in A Short History of M.E.
An informal questionnaire survey was carried out by Action for M.E in 1987 of people who had the cardinal symptoms described by Dr Ramsay. The open question asked was: ‘What symptoms have you had since the onset of the illness?’ and the following responses were given, roughly in order of frequency (very few medical terms are used in the list):
Symptoms made worse by exercise - 100 per cent.
Exhaustion and severe malaise - 85 per cent.
- Muscle weakness after using muscles, lasting for days.
- Muscle pain (mainly back of shoulders, upper arms and thighs).
- Blurred vision.
- Sensations of pins and needles or numbness.
- Loss of concentration.
- Muscle twitching.
- Difficulty in speech (using the incorrect word or not being able to think of a word).
- Poor circulation (cold hands and feet).
- Abnormal sweating with a sour smell.
- Impairment of memory.
- Breathing difficulty.
- Extreme sensitivity to sound.
- Tinnitus (ringing in ears).
- Sleep disturbances.
- Palpitations and/or racing heartbeat.
- Difficulty in standing for any length of time.
- Vivid dreams or nightmares.
- Joint pains.
- Chest pains.
- Emotional instability (crying easily or rapid mood change).
- Constipation or Diarrhoea.
- Recurrent sore throat.
- Enlarged or painful lymph glands.
- Altered sense of taste and/or smell.
- Balance problems.
- Difficulty walking.
- Panic Attacks.
- Poor temperature control.
- Poor co-ordination (clumsiness).
- Poor bladder control.
- Skin sensitivity to touch.
- Spontaneous bruising and skin rashes.
- Great thirst.
There are secondary features that affect a small number of patients. There is a common misconception that there are never any physical abnormalities in M.E. The following list shows some of these secondary features (medical terms are used throughout). Please be aware that this list has been placed in alphabetical order for ease of use:
- Autoimmune conditions may develop after some years (such as Rheumatoid Arthritis, Lupus, Thyroiditis or Sjögren’s Syndrome).
- Convulsions, suggestive of Temporal Lobe Epilepsy or Myoclonus.
- Loss of ability to chew and/or to swallow.
- Severe progressive weakness of the limbs, maybe even paralysis.
- Spasms of the hands and feet, leading to clawed deformities.
- The voice may become very weak or fall to a whisper, then total loss of speech.
- Vestibulitis, Tinnitus, poor balance and sensory confusion. These are more common after Encephalitis.
- Viral Myocarditis (inflammation of the heart muscle caused by a viral infection).
These lists consist of the commonplace symptoms of Myalgic Encephalomyelitis, which were compiled from references and my personal experience. Please be aware that these lists have been placed in alphabetical order for ease of use (medical terms are used throughout):
Particular Muscle Symptoms:
- Aching back and/or neck if sitting in an unsupporting chair.
- Aching in face after chewing.
- General muscle tenderness, with some acutely sensitive local spots.
- Inability to stand (the legs shake and ache after standing for a short time, the patient has to sit down, on the ground if necessary).
- Intermittent blurring of vision (due to fatigue of the eye-focusing muscles).
- Muscle weakness develops after minimal effort, and this may take days to recover from.
- The inability to write for long periods of time.
- The sufferer cannot hold their arms up (unable to hang up washing, for example).
- Difficulty carrying or grasping objects.
- Twitching in muscles, which may be visible to other people.
Brain Symptoms (Neurological & Psychological):
- Altered skin sensations: painful to the touch, a ‘creepy-crawly’ feeling or numbness, ‘pins and needles’ in the arms or legs.
- Hypersensitivity to sound (voices, the radio, even clocks ticking may become unbearable).
- Increased sense of smell or bizarre smells.
- Loss of arithmetic skills, and an inability to count money, for example.
- Muddled or even slurred speech when tired.
- Nightmares, sleep disturbance or deficiency in certain levels of sleep.
- Nominal Aphasia (being unable to find the word for something).
- Photophobia (hypersensitivity to light).
- Poor concentration (typically concentration cannot be sustained for long, whether you are listening to the radio, reading, studying or having a conversation).
- Poor balance and feeling of unsteadiness, with loss of spatial awareness, such that you find yourself bumping into doorways.
- Poor memory (forgetting the name of someone you know well, forgetting what has just been said, not knowing where you are, though in a familiar place, or why you are there).
- Transient blurred or double vision.
Autonomic Nervous System Disturbance:
- Alternative Diarrhoea and Constipation.
- Difficulty passing urine or Incontinence.
- Dizziness on standing.
- Feeling faint and sweaty between meals.
- Pallor (often ashen grey).
- Poor circulation to hands and feet (maybe only affecting one side).
- Poor temperature regulation (feeling suddenly cold in warm weather, for example).
- Profuse sweating, even when cold.
- Sudden racing heartbeat or palpitations.
Acute Neurological Events:
- Primary seizures, acute profound ataxia, focal weakness and transient loss of vision.
Symptoms Suggesting Immune Over-activity or Low-grade Infection:
- Enlarged and/or tender lymph nodes, in the neck or armpits.
- Episodes of low-grade fever or feeling feverish.
- Painful aching joints which are not swollen.
- Persistent or recurrent sore throat. The throat looks purplish-red but not septic.
Other Typical Features:
- Blackouts (feeling faint and collapsing upon standing and/or spontaneous attacks).
- Development of new allergies (particularly to chemicals and some foods).
- Difficulty in breathing, especially at night.
- Loss of nails on the hands and/or feet.
- Loss of sense of touch.
- Partial or complete loss of body hair (hair from the scalp may fall out by the handful).
- Sudden mood changes, untypical of the person.
- Temporary blindness.
- Tooth decay, erosion and/or discoloration.
‘Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease’ by A. Melvin Ramsay (Gower Medical Publishing 1988, ISBN 0-90-692399-9) was republished by the ME Association in 2005 to mark the 50th anniversary. I used ‘M.E. Chronic Fatigue Syndrome: A Practical Guide’ by Dr Anne Macintyre (Thorsons 1998, ISBN 0-7225-3539-2) as a reference to compile these lists. I also recommend ‘Living with M.E.: The Chronic, Post-viral Fatigue Syndrome’ by Dr Charles Shepherd (Vermilion 1999, ISBN 0-09-181679-3) which is particularly helpful with the secondary features of M.E.
In 2007 the National Institute for Clinical Excellence (NICE) published clinical guidelines for Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. There have been a number of clinical criteria published since Dr Ramsay's definition, the most recent being Myalgic encephalomyelitis: International Consensus Criteria from the Journal of Internal Medicine in 2011.
The World Health Organisation (WHO) has developed a classification system called the International Classification of Diseases (ICD) using a combination of alphabetic & numerical codes. The version used in the UK is the 10th and commonly referred to as the ICD-10. It is used within the acute sector of the NHS and provides a ‘diagnosis’ of disease, disorder or other health condition. Classifications are approved by the World Health Assembly, the world's highest health policy setting body, consisting of representatives from 194 WHO member states. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS) is classified in the ICD -10 as a neurological disorder under Diseases of the Nervous System, classification code G93.3.
The ME Association produced a booklet in 2001 entitled ME/CFS/PVFS: An Exploration of the Key Clinical Issues. It is written and regularly updated by Dr Charles Shepherd, medical adviser to the ME Association, and Dr Abhijit Chaudhuri, consultant neurologist at the Essex Neurosciences Centre, Queen’s Hospital, Romford.
I wrote The Symptoms of Myalgic Encephalomyelitis in 2001 and last updated this article in 2016. This information is provided for your information only; the diagnosis of M.E. should be determined only by a suitably qualified medical professional. M.E. is a variable illness with symptoms changing over time, affecting people in different ways and to . You will find further details in M.E. Diagnosis, Treatment & Prognosis and additional information in A Self-Help Guide to Managing M.E. I must stress that you should seek medical attention if you develop new symptoms; you should NEVER assume that it is associated with your M.E. You may print this article with my permission for personal use; please Click Here to download in it Microsoft Word file. Should you need any further information, please do not hesitate to Contact Me.