Chronic fatigue syndrome
This is a chronic debilitating illness and is, for many, a long-term condition. Our focus summarises three recent research studies relating to chronic fatigue syndrome
Chronic fatigue syndrome (CFS) is a chronic debilitating illness and is, for many, a long-term condition. This focus summarises three recent research studies relating to this poorly understood illness
Chronic fatigue syndrome (CFS) – or myalgic encephalomyelitis (ME) – is an umbrella term encompassing symptoms that include overwhelming tiredness, post exertional malaise, cognitive dysfunction, sleep disturbances, muscle and joint pain, headaches, dizziness and heart palpitations. These symptoms cannot be explained by any underlying medical condition (Collin et al 2016). It is more common in younger females (aged mid twenties to forties) but can affect anyone, including children (NHS 2017). For many, CFS is a long-term condition. Approximately 8,000 adult patients receive treatment in the NHS and more than 50 specialist services have been developed. This chronic debilitating illness, with its significant economic and societal costs, remains poorly understood with wide variations observed in management and resources, as these three papers illustrate.
Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England
This multi-centre, UK cohort study selected two groups of patients with CFS/ME from ten specialist CFS services. Cohort one comprised newly diagnosed 952 adults. Questionnaires provided patient outcome data on fatigue, physical function, individual strength, mood, depression, anxiety, pain, daytime sleepiness, work and social life. Cohort two were former adult patients identified via the CFS/ME National Database. As fatigue and physical function measures were collected at their initial baseline assessments only these were repeated at follow-up (two to five years).
Overall consistency was found in changes in health between the different services. One third of participants reported an overall improvement following treatment, suggesting support for investment in specialist services provided individual, societal and organisational benefits. Follow-up across the services was disappointing, with 23-74% of newly referred patients contacted at one year and 30% of the former patients. Even after specialist treatment, CFS/ME persists with more than half reporting little or no change in their condition and 10-20% reporting a deterioration in overall health. Limitations included measuring change at a single time point as symptoms fluctuate, and wide variability in the content, delivery and duration of treatments. Further research is needed.
Randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: a study protocol
Researchers increasingly publish their study protocols to provide colleagues with information that may guide future practice. This study aimed to address a gap in the current evidence base in provision of appropriate, evidence-based CFS management programmes delivered by allied health professionals (AHPs). It theorised that knowledge and confidence to treat will be improved through a specifically targeted, self-paced, online education programme.
A randomised control trial (participant and wait-control groups) pre/post and follow-up study design has been approved to test this theory and 128 AHPs recruited. Following a review of existing online programmes, this programme, designed by a specialist CFS team of experts, will consist of seven targeted learning modules made accessible over a four-week period. Descriptive and statistical analyses will be conducted to assess group differences and measure four key primary and secondary outcomes, such as impact and effectiveness of such a programme on clinician CFS knowledge and skills. Final results are awaited.
Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study
For this case-control study coded data relating to patients with CFS/ME was collected through a national general practice research database. Anonymised medical record data from approximately 7% (700) of participating GP practices across the UK provided evidence of GP consultations, tests, prescriptions and secondary care referral rates.
Three significant features identified included overall higher health needs in children and adults compared to the general population following and predating diagnosis, evidence of greater health care resource use up to 15 years (peaking in adults two to four years and children one to two years, respectively) before diagnosis. The potential variation in patterns of healthcare use were acknowledged in the discussion but served as a reminder that for many years after diagnosis patients continue to have substantial healthcare needs.
- Children and adults have greater health resource use before and after diagnosis
- An education for allied health professionals is currently being evaluated
- Even after treatment in specialist services symptoms remain in more than half of patients
Compiled by Kathy Davis, research nurse, The Children's Trust