United Kingdom

National
The British National Health Service estimates that 250,000 people in the United Kingdom have myalgic encephalomyelitis. This represents a prevalence of around 0.4% of the UK population.

Doctor Luis Nacul and colleagues found prevalence in some regions of England to be around 0.2% using the 1994 Fukuda criteria, and 0.11% using the stricter Canadian Consensus Criteria.

In 2006, in the report "How much is M.E. costing the country?" it was estimated that the total economic burden to the UK of ME was £6.4 billion per year. This report was prepared by the Survey & Statistical Research Centre at the Sheffield Hallam University, unfortunately it is not available online.

In 2017, the report "Counting the Cost" estimated that the total cost to the UK economy of CFS/ME in 2014/15 was at least £3.3 billion. The report does however note that they weren't able to account for a number of different costs including "productivity losses among carers themselves, through reduced hours in employment, and costs associated with ‘presenteesim’ (productivity losses due to working while unwell)" so the true cost would be expected to be higher. This report was written by 2020Health and was funded by an educational grant from The Optimum Health Clinic Foundation.

Regional
Estimated regional figures of people with ME/CFS:
 * 1500 in Shropshire
 * 7000 in Northern Ireland

Research

 * Medical Research Council (MRC)
 * National Institute for Health Research (NIHR)
 * In 1996 the influential 1996 UK Chronic Fatigue Syndrome report.pdf) was published by the Royal College of Psychiatrists, the Royal College of General Practitioners and the Royal College of Physicians was published that stated "There is consensus on the importance of a biopsychosocial approach to aetiology, assessment, and treatment and the need for further research". It was criticised in a Lancet editorial Frustrating survey of chronic fatigue which stated that "The condition shall now be called chronic fatigue syndrome (CFS) and not myalgic encephalomyelitis(ME), the report decrees" and "The sixteen-strong committee was top heavy with psychiatric experts, so the emphasis on psychological causes and management (introduction of graded exercise and cognitive behaviour therapy) is no surprise"

In response to a written question by Carol Monaghan MP, the UK government confirmed in May 2018 that biomedical funding for the 2014-2015, 2015-2016 and 2016-2017 financial years, including that from non-government sources, was £280,442, £295,626 and £130,958 respectively.

Medical guidelines

 * National Institute for Health and Care Excellence (NICE, England & Wales)

CBT/GET

 * Cognitive behavioral therapy
 * Graded exercise therapy
 * PACE trial

Social security and disability benefits

 * Department for Work and Pensions (DWP)

Patients are assessed for financial state support based on the Work Capability Assessment. The assessment is based on a handbook.

National Health Service
How many hospitals&doctors, which diagnose and treat M E (estimate): Rehabilitation offers for ME sufferers:


 * National Health Service (NHS)

Private health insurance

 * UNUM

Politics

 * Chief Medical Officer Report 2002
 * UK Parliament Grand Committee Room debate 21st June 2018
 * All-Party Parliamentary Group on Myalgic Encephalomyelitis
 * Secret files
 * In the Expectation of Recovery report by The Centre for Welfare Reform
 * Private Members' Bills

Media

 * Science Media Centre (SMC)
 * Sense About Science

Scotland

 * NHS Scotland

Northern Ireland

 * ME/CFS in Northern Ireland - Position Statement as at 31 August 2016

National groups
Action for ME, Invest in ME, Change For M.E. Change For Us, ME Association, Tymes Trust, MEActionUK, Forward-ME, Hope 4 ME & Fibro NI, Association of Young People with ME, 25 Percent ME Group, ME Research UK, MEAction Scotland

Regional groups
Welsh Association of ME & CFS Support, Sussex & Kent ME/CFS Society, Tyne and Wear ME/CFS Support Group, Edinburgh MESH, Leeds ME Network, The York ME Community, The Grace Charity for M.E. (Kent)

Research
Government-funded research is limited. Patient Graham McPhee created a video explanation examining UK government funding of ME/CFS research.

2016 government petition for increased funding
A petition was started in early 2016 to ask the British government to allocate more funding to the disease. It attracted 15,400 signatures over a six month period. As the signature count was in excess of 10,000, the government was obliged to respond, and did so as follows:

The Government supports research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the Medical Research Council (MRC), which receives funding from the Department for Business, Innovation and Skills; and through the National Institute for Health Research (NIHR), which is funded by the Department of Health. Together the MRC and NIHR welcome high quality applications for research into all aspects of CFS/ME. These would include studies to investigate the biological causes of the condition, improve our understanding of the condition and the complex and diverse range of symptoms experienced, and evaluate treatments.

Research proposals in all areas compete for the funding available with awards made according to their scientific quality and importance to human health.

Research into CFS/ME is a current priority area for the MRC. It received very few high-quality proposals in the area it has implemented a number of initiatives to stimulate more research in this important area and to increase research capacity by bringing new researchers into the field and supporting multidisciplinary teams to tackle research challenges and build partnerships. A highlight notice which outlines research priorities identified by the research community, and where applications are encouraged, is currently in place and can be found on its website at: http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfsme-highight-notice/

Notable studies

 * 2011, PACE trial
 * FINE trial
 * 2016, Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy

Research groups

 * Quadram Institute
 * UK ME/CFS biobank
 * ME Research UK

Clinics

 * Breakspear Medical, Hemel Hempstead
 * The Optimum Health Clinic, London
 * The National ME Centre, Harold Wood, Essex

Notable patients
Vicky Beeching, Jane Colby, Shirley Conran, L.A. Cooper, Robert Courtney, Clark Ellis, Catherine Hale, Nasim Marie Jafry, Peter Kemp, Countess of Mar, Tanya Marlow, Graham McPhee, Giles Meehan, Stuart Murdoch, Ean Proctor, Charles Shepherd, Valerie Eliot Smith, Jessica Taylor, Claire Wade, Naomi Whittingham, Doctor Speedy

MEAction regional Facebook groups

 * UK
 * London
 * England South East
 * England South West
 * England West Midlands
 * England North West
 * England North East
 * England Yorkshire & The Humber
 * England East Midlands
 * England East
 * Scotland
 * Wales
 * Northern Ireland

Learn more

 * The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers