Consultants

About Chronic Fatigue Syndrome

 

Chronic Fatigue Syndrome (CFS) is a complex, multi-system, fluctuating condition characterised by physical, emotional, neuroendocrine, mental fatigue. The Canadian criteria for diagnosis include fatigue; post-exertional malaise after activity; unrefreshing sleep; cognitive impairment (sometimes described as ‘brain fog’); pain; headaches; sore throat and painful swollen lymph nodes (Fukuda et al., 1994).

It is known by many names- Myalgic encephalomyelitis (ME); Post Viral Fatigue Syndrome (PVFS) and Systemic Exertion Intolerance Disease (SEID).

Who We Are

The CFS clinic consists of a multi-disciplinary team of consultants (led by Professor Vinod Patel) and includes registrars, junior doctors, physician associate and occupational therapist. 

Aims/Focus

The service at GEH is focused on the following aims:

Offer a specific diagnosis of CFS and exclude other conditions that can mimic theseManagement of treatable conditions which can exacerbate CFSOffer support and advice on the patient’s concerns, including treatment of somesymptom
Promote and empower individuals to self-manage the condition

Service Times

Clinic - Monday, Wednesday and Thursdays 

Patients should note that patients are offered the following only due to a very heavy demand on services and a wish to keep waiting times as short as possible. 

Visit 1: An initial Clinic Appointment - virtual or face-to-face (up to 15-20 minutes)

Visit 2: Investigations- usually blood tests in General Practice, some on site at the George Eliot Hospital NHS Trust. 

Visit 3: Follow-up clinic Appointment to review results and management plan (up to 15-20 minutes)

The National Institute of Health and Care Excellence (NICE) estimate the prevalence of CFS to be about 2 per 1000 of the adult population; between 150,000 and 250,000 people in the UK have CFS.

The peak age of onset of CFS was 20-40 years  (Capelli et al., 2010)

76% of CFS suffers are female (Collin, 2011)

85% of CFS sufferers have experienced some form of lost employment due to the illness (PACE trial, 2012).

A 2017 analysis carried out by 2020 Health stated that the total cost of CFS in 2014/5 to the UK economy was at least £3 billion. The sum total accounted for health care cost, productivity losses and unpaid informal care as well as disability related welfare payments.

The report revealed NHS spending on people with CFS/ME was in the region of 542 million (2020 Health).

It is a complex and chronic disease that can limit the activities of individual affected.

Chronic fatigue syndrome 2.pngA comprehensive clinical assessment including detailed and relevant history; physical examination and investigations to exclude other similar causes will be carried out. CFS can be categorised as:

Mild - People with CFS can self-manage with some problems mobilising.  Most are working or in education but need to rest to recuperate and as a result may avoid leisure activities.

Moderate - People with CFS are unable to engage with activities of daily living. They may have stopped work or education and experience unrefreshing sleep.

Severe - Individuals struggle to carry out basic daily task, spend most of the time in bed and can be housebound. They may experience severe cognitive impairment and need wheelchair for mobility.

Very severe - Individuals need help with personal care and eating and bed bound all day.

There is no curative treatment.

NICE guidance on symptom management for people with CFS:

Energy management - individuals learn to use their baseline energy but avoid worsening their symptoms or relapsing. Referral to an occupational therapist or a physiotherapist is advised for people with severe or very severe CFS.

Sleep management - improvement of sleep hygiene and where indicated medication should be consider and given in a manner to prevent addiction.

Physical functioning and mobility - an individualised person centred programme aimed at managing, sustaining and if possible restoring to their baseline the patient’s physical, cognitive and emotional capacity.

Dietary management - A well-balanced diet is recommended with Vitamin supplements if required. Referral to a dietician for assessment is recommended f or people with severe or very severe CFS.

Cognitive Behavioural Therapy - this is not curative but offered where necessary to manage symptoms and reduce the distress of having a chronic disease.

Pain Management - where necessary pain relief to manage symptoms taking into consideration sensitivities and if necessary referral to a specialist pain service.

Promote Independence - individuals with moderate, severe or very severe CFS may need aids, support or adaptation.

The below are identified risk factors that are likely to make people vulnerable to Covid-19:

  • Male gender
  • Greater than 70 years of age
  • Immunocompromised or immunosuppressed (cancer)
  • Past medical history of chronic disease for example., diabetes, respiratory or heart disease
  • Obesity

Covid-19 is likely to exacerbate existing symptoms and/or protracted relapse in patients with CFS.

Covid-19 is a viral illness which can trigger onset of CFS or Post Covid Syndrome

Precautionary measures as advised: vaccination, face mask, social distancing, hand washing, balanced diet and minimise contact by staying at home is advised.

The Chronic Fatigue Syndrome Therapy service offers assistance in managing patterns and levels of activity and rest to maximise function, with the aim of reducing an increase in symptoms and flare ups.

When patients are referred to the service they will be offered an appointment to have a full holistic assessment. Once a full assessment has been completed with the therapist they will receive a treatment pathway which is bespoke to that person. 

Treatment pathway can include the following:

Pacing and grading of activities – including education about the “boom and bust” cycle of activity.Sleep management – including sleep hygiene and the use of sleep dairies.Work and Educational advice. This may include advice giving to employers and educational establishments.Memory and concentration advice.Rest and relaxation.Stress management advice.Relapse and setbacks advice.

 The aim is to provide patients with the knowledge of how to create the best conditions for recovery to occur, and for patients to become an expert in managing their own condition. 

This service is led by two senior Occupational Therapists, Tracy Atkins and Gail Loveridge-Wickins.

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