United Kingdom

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United Kingdom of Great Britain and Northern Ireland

Demographics[edit | edit source]

National[edit | edit source]

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]

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.[4]

Regional[edit | edit source]

Estimated regional figures of people with ME/CFS:

  • 1500 in Shropshire[5]
  • 7000 in Northern Ireland[6]

Research[edit | edit source]

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.[7]

Medical guidelines[edit | edit source]

CBT/GET[edit | edit source]

Social security and disability benefits[edit | edit source]

Patients are assessed for financial state support based on the Work Capability Assessment. The assessment is based on a handbook.[8]

Access to care[edit | edit source]

National Health Service[edit | edit source]

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

Private health insurance[edit | edit source]

Politics[edit | edit source]

Media[edit | edit source]

Scotland[edit | edit source]

Northern Ireland[edit | edit source]

Patient groups[edit | edit source]

National groups[edit | edit source]

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[edit | edit source]

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), Lochaber PVFS/CFS/M.E. Support Network

Research[edit | edit source]

Government-funded research is limited. Patient Graham McPhee created a video explanation examining UK government funding of ME/CFS research.[9]

2016 government petition for increased funding[edit | edit source]

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.[10] 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 | edit source]

Research groups[edit | edit source]

Researchers[edit | edit source]


Clinicians[edit | edit source]


Clinics[edit | edit source]

Notable patients[edit | edit source]

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 | edit source]


MEAction regional Facebook groups[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ "Chronic fatigue syndrome (CFS/ME)". nhs.uk. October 20, 2017. Retrieved November 20, 2020.
  2. ↑ Nacul, Luis C.; Lacerda, Eliana M.; Pheby, Derek; Campion, Peter; Molokhia, Mariam; Fayyaz, Shagufta; Leite, Jose CDC; Poland, Fiona; Howe, Amanda (July 28, 2011). "Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care". BMC Medicine. 9 (1): 91. doi:10.1186/1741-7015-9-91. ISSN 1741-7015. PMC 3170215. PMID 21794183.
  3. ↑ "UK General Election: Template letter to parliamentary candidates". Phoenix Rising ME/CFS Forums. Retrieved November 20, 2020.
  4. ↑ http://www.meassociation.org.uk/wp-content/uploads/2020Health-Counting-the-Cost-Sept-2017.pdf
  5. ↑ Shropshire Disability - Shropshire ME Group
  6. ↑ The ME Association – Cross-party pressure for a new Northern Ireland ME/CFS service
  7. ↑ Chronic Fatigue Syndrome:Written question - 145357
  8. ↑ Revised WCA Handbook - 5 July 2016
  9. ↑ ME - Science Friction in the UK
  10. ↑ "Archived Petition: Invest more money into scientific research to find the cause of M.E./CFS". Petitions - UK Government and Parliament. Retrieved November 20, 2020.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See ME/CFS.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

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