Press release issued 16 September 2013
Two new research projects that aim to advance treatment for people with Chronic Fatigue Syndrome [CFS] or Myalgic Encephalopathy [ME], which affects an estimated 600,000 adults and children in the UK, have been awarded funding totalling nearly £1.2 million from the National Institute for Health Research [NIHR].
The University of Bristol-led research will help to improve current guidance and treatment through a programme of work investigating treatment and recovery in children with CFS/ME, and a first-of-its-kind study to find out how many adults in England are affected by this debilitating condition.
Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine, will also conduct a multicentre trial investigating the effectiveness of exercise therapy compared with activity management for mild and moderately affected children.
Dr Crawley, who has been awarded an NIHR Senior Research Fellowship, said: “Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.”
The five-year study entitled ‘Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been awarded NIHR funding of over £864,000.
Dr Simon Collin, Research Fellow also in the School of Social and Community Medicine, will lead the first study of its kind to investigate CFS/ME in primary and secondary care in England. He will use data from the Clinical Practice Research Datalink (CPRD) to obtain an up-to-date estimate of the number of adults diagnosed with CFS/ME by GPs in England. Dr Collin will also collect data from NHS specialist services for adults with CFS/ME, document the different approaches to treatment and investigate long-term outcomes.
Dr Collin, who has been awarded an NIHR Post-Doctoral Fellowship, said: “Approximately 9,000 adults are assessed annually by NHS specialist CFS/ME services in England, of whom approximately 80 per cent are diagnosed with CFS/ME. Assessment rates vary six-fold across England with specialist services using a range of treatments with little or no standardisation across the NHS. The extent to which patients recover from their illness and are able to return to normal activity levels are unknown.
“Findings from this study will help with planning and improvement of NHS specialist services for adults with CFS/ME as well as determining the most effective specialist treatment for adults with the condition.”
The three-year study entitled ‘CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services’ has been awarded NIHR funding of £321,861.
Professor Stephen Holgate, Chair of the UK CFS/ME Research Collaborative [UK CMRC], said: “For many years, researchers have struggled to fund studies into this important and yet devastating condition. The CFS/ME Research Collaborative brings researchers and charities together to increase funding in CFS/ME research. These fellowships show that funding bodies will fund high-quality research in CFS/ME.”
Chronic fatigue syndrome (CFS) is relatively common and disabling condition, characterised by post-exertional fatigue and malaise, accompanied by other symptoms, such as muscle pain, insomnia, and poor concentration. Children need to have fatigue for more than 4 months and adults more than 6 months before the diagnoses can be made. Approximately one per cent of secondary school children miss a day a week or more of school because of CFS/ME and many are undiagnosed for years. Approximately 50 per cent of adults with CFS/ME are unable to work.
The National Institute for Health Research (NIHR)
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).
Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.