New ME Association Leaflet: Is ME a neurological disease? | 19 February 2020


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

The following is an extract from a newly updated leaflet.

This leaflet summarises all the key clinical, research and political evidence supporting a neurological classification for myalgic encephalopathy/encephalomyelitis (M.E.).

The ME Association position is that myalgic encephalopathy – meaning problems with muscles (myalgia) and with brain function (encephalopathy) is the most suitable name for the disease at this time.

There is no significant or consistent pathological evidence to support the use of the term  ‘encephalomyelitis’ (widespread inflammation of the brain and spinal cord) although the terms ‘benign myalgic encephalomyelitis’ and ‘post-viral fatigue syndrome’ have been (and still are) used to describe the condition by the World Health Organisation.

This lack of definitive evidence accounts in part for the reluctance of neurology to accept M.E. into its medical discipline. Many doctors still prefer to use ‘chronic fatigue syndrome’ but this is not a name we support as it does nothing to explain causation and downplays the severity of the condition. It’s akin to calling dementia, chronic forgetfulness syndrome!

We believe that myalgic encephalopathy (M.E.) should not be dismissed by neurology, and that neurologists have a key role to play in diagnosis and management, but we also believe that the cause of symptoms may stem from other systems in the body.

Until such time as research determines actual causes for the symptoms, and the name and description of this disease can be better determined, we continue to support a neurological classification.

What do we mean by neurological?

Neurological disorders are diseases of the nervous system. These include structural, biochemical or electrical abnormalities in the brain, spinal cord or peripheral nerves that can result in a range of symptoms.

Clinical evidence of neurological dysfunction

People with M.E. have a variety of neurological symptoms. These include (A-Z):

– Alcohol/Drug Intolerance

Intolerance or sensitivity is not uncommon, especially in relation to drugs such as antidepressants and painkillers that act on the brain and nervous system. Medications may need to be introduced slowly with a low dose that is built up over time.

– Autonomic Nervous System Dysfunction

This can produce symptoms such as feeling faint on standing, orthostatic intolerance and postural orthostatic tachycardia syndrome.

– Cognitive Dysfunction

Problems with short-term memory, concentration, attention span, information-processing and wordfinding ability; often referred to as ‘brain fog’ by patients.

– Chronic Fatigue

Activity-induced muscle fatigue is almost always present and even minor physical and/or cognitive exertion can lead to post-exertional malaise (PEM) and an often-delayed exacerbation of symptoms.

The fatigue in M.E. has similar features to the central (brain) fatigue found in other neurological conditions, such as multiple sclerosis and there may also be similar pathological mechanisms involved – although PEM is thought to be a rather unique and characteristic symptom of M.E.

– Dysequilibrium

Problems with balance that may induce feelings of vertigo and nausea.

– Headaches and Migraines

Headaches and migraines (sometimes without headache but acute sensitivity to light and/or nausea) are often experienced.

– Hypothalamic Dysfunction

Leading to disturbances in temperature control and down-regulation of the hypothalamic-pituitary-adrenal axis controlling the output of cortisol.

– Neuropathic Pain

Pain that has a burning, stabbing or searing quality.

– Sensory Disturbances

Include loss of sensation, abnormal sensations/paraesthesiae, and increased sensitivity to light, sound and touch.

– Sleep dysfunction

Including hypersomnia, fragmented sleep patterns, waking feeling unrefreshed, insomnia, vivid dreams and night-sweats.

– Tinnitus

The perception of hearing noises often a ringing in the ears.

– Other Symptoms

Some people, especially those with severe symptoms, may experience more severe neurological symptoms – including atypical seizures (i.e. not epilepsy), blackouts, double vision, loss of speech and loss of swallowing ability (requiring tube-feeding).

Also covered in this leaflet:

– World Health Organisation (WHO) Classification

– The UK Government Position

– Research evidence of neurological abnormalities

– Why do some doctors believe that M.E. is not a neurological disease?

– The NHS and the NICE clinical guideline on ME/CFS

– Research studies that demonstrate objective neurological abnormalities

The ME Association

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