United Kingdom

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United Kingdom of Great Britain and Northern Ireland

Demographics[edit]

National[edit]

The British National Health Service estimates that 250,000 people in the United Kingdom have myalgic encephalomyelitis.[1] 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.[2]

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.[3]

Regional[edit]

Estimated regional figures of people with ME/CFS:

  • 1500 in Shropshire[4]
  • 7000 in Northern Ireland[5]

Research[edit]

Medical guidelines[edit]

CBT/GET[edit]

Social security and disability benefits[edit]

Patients are assessed for financial state support based on the Work Capability Assessment. The assessment is based on a handbook.[6]

Access to care[edit]

National Health Service[edit]

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

Private health insurance[edit]

Politics[edit]

Media[edit]

Scotland[edit]

Northern Ireland[edit]

Patient groups[edit]

National groups[edit]

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

Regional groups[edit]

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[edit]

Government-funded research is limited. Patient Graham McPhee created a video explanation examining UK government funding of ME/CFS research.[7]

2016 government petition for increased funding[edit]

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.[8] 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[edit]

Research groups[edit]

ME Research UK

Researchers[edit]

Clinicians[edit]

Amolak Bansal, Peter Behan, Gabrielle Murphy, Sarah Myhill, Charles Shepherd, Nigel Speight, William Weir

Clinics[edit]

Notable patients[edit]

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

Deceased patients[edit]

Oliver Coles, Emily Collingridge, Victoria Elsbury-Legg, Lynn Gilderdale, Sophia Mirza

Learn more[edit]

See also[edit]

  1. NHS - Chronic Fatigue Syndrome
  2. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care
  3. http://forums.phoenixrising.me/index.php?threads/uk-general-election-template-letter-to-parliamentary-candidates.51315/#post-850478
  4. Shropshire Disability - Shropshire ME Group
  5. The ME Association – Cross-party pressure for a new Northern Ireland ME/CFS service
  6. Revised WCA Handbook - 5 July 2016
  7. ME - Science Friction in the UK
  8. Invest more money into scientific research to find the cause of M.E./CFS


The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history