ME Research UK severe ME/CFS

  • Research type

    Research Study

  • Full title

    Understanding the clinical characteristics of severe chronic fatigue syndrome (CFS/ME)and its relationship with cognitive and autonomic dysfunction

  • IRAS ID

    154422

  • Contact name

    Julia L Newton

  • Contact email

    J.L.NEWTON@NCL.AC.UK

  • Sponsor organisation

    Newcastle upon Tyne Hospitals NHS Foundation Trust

  • Duration of Study in the UK

    1 years, 7 months, 28 days

  • Research summary

    Chronic fatigue syndrome (CFS/ME) occurs in 0.2-0.4% of the population and currently its cause is unclear. Recent studies have confirmed that abnormalities of the autonomic nervous system are recognised in about three quarters of CFS/ME sufferers and we believe that it underpins many of the symptoms that are characteristic of CFS/ME. We have recently performed a number of studies in the Newcastle Fatigue Research Group that suggest autonomic symptoms are very common and that they associate with other symptoms such as cognitive (memory and concentration) problems and depressive symptoms. It is not clear however whether this is a problem that is generalizable across all levels of severity of CFS/ME. Patients with severe CFS/ME (ie. those who are housebound) are frequently excluded from research studies as they are unable to attend research units. As a result it is often suggested that their disease may be different from that that is currently studied in the research unit environment. This study therefore sets out to perform measurements in those who are housebound with CFS/ME (ie. the severest form of this disease) in order to explore the clinical characteristics of those with severe CFS/ME and whether the results found in studies performed in research units (ie. those able to physically attend a research unit for assessment) are generalizable. This would be important for those with housebound CFS/ME as it may make new treatments that are developed on the basis of studies performed in research units are also applicable to the broadest group of patients.

  • REC name

    North East - Newcastle & North Tyneside 2 Research Ethics Committee

  • REC reference

    15/NE/0103

  • Date of REC Opinion

    20 May 2015

  • REC opinion

    Further Information Favourable Opinion