UCL Queen Square Institute of Neurology


Chronic Fatigue Syndrome

Medline NLM definition: syndrome of unknown cause, characterized by clinically evaluated, unexplained persistent or relapsing chronic fatigue of at least six months' duration which is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction of previous levels of occupational, educational, social, or personal activities. Common concurrent symptoms (of six months duration) include impairment of memory or concentration, diffuse pain, sore throat, tender lymph nodes, headaches of a new type, pattern, or severity, and unrefreshing sleep. The etiology is suspected to be viral or immunologic. There are suggestions that chronic fatigue syndrome (sometimes called myalgic encephalomyelitis) may be identical to neurasthenia and fibromyalgia.

Chronic fatigue syndrome: information from the NHS website

Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): information from Patient UK website

PubMed Medline search on myalgic encephalomyelitis (ME)

Support Groups

ME Association
Offers support for people affected by ME. Disseminates information to the general public and health professionals; campaigns for the recognition of the illness. The ME Association also has a  large network of local support groups.

Action for M.E.

Leading UK charity for people with Myalgic Encephalomyelitis (M.E.) and their carers. Provides information, support and advice, including the impact of ME, services and support they offer, and their policy work and research they fund.

Solve Me / CFS Initiative
Solve ME/CFS Initiative (SMCI) has been the leading US organization focused on myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), since being founded in 1987. The website consists of educational materials, a CFS Newsletter, latest news, support and chat groups.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.

Invest in ME Research
UK charity working to establish a UK and European Centre of Excellence for ME – a centre which would exist to bring discovery, knowledge, and effective treatments to patients with ME and possibly, in future, other illnesses that are caused by acquired dysregulation of both the immune system and the nervous system. It finds, funds and facilitates a strategy of biomedical research into ME and promotes better education about ME.