Chronic Fatigue Syndrome / ME ReferralforAdults

Criteria Based Access Policy
Date Adopted: 16th September 2016
Version:1617.1

Document Control

Title of document / Chronic Fatigue Syndrome / ME Referral for Adults Policy
Authors job title(s) / IFR Manager
Document status / v1617.1
Supersedes / New Policy
Clinical approval / February 2016
Discussion and Approval by Clinical Policy Review Group (CPRG) / 13th April 2016
Discussion and Approval by CCG Board / 3rd May 2016
Date of Adoption / 16th September 2016
Publication/issue date / 16th September 2016
Review date / September 2016
Equality and Impact Assessment

THIS IS A CRITERIA BASED ACCESS POLICY

TREATMENT MAY BE PROVIDED WHERE PATIENTS MEET THE CRITERIA BELOW

THIS POLICY RELATES TO ALL ADULT PATIENTS

Chronic Fatigue Syndrome / ME Referral Policyfor Adults

Policy Statement & Date of Adoption: 16th September 2016

Chronic Fatigue Syndrome / ME Referralfor Adultsis not routinely funded by the Clinical Commissioning Group (CCG) and is subject to this restricted policy.

General Principles

Treatment should only be given in line with these general principles. Where patients are unable to meet these principles in addition to the specific treatment criteria set out in this policy, funding approval may be sought from the CCG Individual Funding Request Panel by submission of an IFR application.

  1. Clinicians should assess the patients against the criteria within this policy prior to treatment.
  2. Patients will only meet the criteria within this policy where there is evidence that the treatment requested is effective and the patient has the potential to benefit from the proposed treatment. Where the patient has previously been provided with the treatment with limited or diminishing benefit, it is unlikely that they will qualify for further treatment and the IFR team should be approached for advice.

Background

What is Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. CFS is also known as ME, which stands for myalgic encephalomyelitis. It is commonly known in the NHS as CFS/ME.

CFS/ME is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.It is estimated around 250,000 people in the UK have CFS.Anyone can get the condition, although it's more common in women than men. It usually develops when people are in their early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.

Most cases of CFS are mild or moderate, but up to one in ten people with CFS have severe symptoms. These are defined as follows:

  • mild – you're able to care for yourself, but may need days off work to rest
  • moderate – you may have reduced mobility, and your symptoms can vary; you may also have disturbed sleep patterns and need to sleep in the afternoon
  • severe – you're able to carry out minimal daily tasks, such as brushing your teeth, but have significantly reduced mobility, and may also have difficulty concentrating

What causes CFS/ME?

It's not known exactly what causes CFS/ME. Various theories have been suggested, including:

  • a viral or bacterial infection
  • problems with the immune system
  • an imbalance of hormones
  • psychological problems, such as stress and emotional trauma

Some people are thought to be more susceptible to the condition because of their genes, as the condition is more common in some families.

How it is diagnosed?

There are specific guidelines issued by the National Institute for Health and Care Excellence (NICE) about the diagnosis and management of CFS/ME.

NICE says a diagnosis of CFS/ME should be considered if you meet specific criteria regarding your fatigue – for example, it can't be explained by other conditions – and if you also have other symptoms, such as sleeping problems or problems thinking and concentrating.

The diagnosis can then be confirmed if these symptoms are experienced for several months.

How it is treated ?

Treatment for CFS may be able to reduce the symptoms. Everyone with CFS responds to treatment differently, so your treatment plan will be tailored to you.

Some of the main treatments include:

  • specialist form of cognitive behavioural therapy (CBT)
  • a structured exercise programme called Graded Exercise Therapy (GET)
  • medication to control pain, nausea and sleeping problems

Most people with CFS/ME improve over time, although some people don't make a full recovery. It's also likely there will be periods when symptoms get better or worse. Children and young people with CFS/ME are more likely to recover fully.

Different terms for the condition

  • chronic fatigue syndrome – often used and preferred by doctors as there's little evidence of brain and spinal cord inflammation, which the term ME suggests; ME is also thought to be too specific to cover all the symptoms of the condition
  • myalgic encephalomyelitis (ME) – preferred by those who feel CFS is not specific enough and doesn't reflect the severity and different types of fatigue, and implies that fatigue is the only symptom (myalgic encephalopathy is sometimes also used)
  • systemic exertion intolerance disease (SEID) – a new term suggested in a 2015 report by the US Institute of Medicine, which implies that the condition affects many systems in the body (systemic); the word "disease" highlights the serious nature of the condition in some people

Referral to the Bristol CFS/ME Service providing specialist CFS/ME care to people in South Gloucestershire, Bristol and North Somerset

Any decision to refer a person to the specialist Bristol CFS/ME service should be based on their needs, the type, duration, complexity and severity of their symptoms, and the presence of comorbidities. The decision should be made jointly by the person with CFS/ME and the healthcare professional.

An individualised, person-centred programme should be offered to people with CFS/ME. The objectives of the programme should be to:

  • sustain or gradually extend, if possible, the person’s physical, emotional and cognitive capacity
  • manage the physical and emotional impact of their symptoms.

Presentation and diagnosis

CFS/ME is recognised on clinical grounds alone. Primary healthcare professionals should be familiar with and be able to identify the characteristic features of CFS/ME.

Primary healthcare professionals should consider the possibility of CFS/ME if a person has:

Fatigue lasting for more than four months, with all of the following features:

  • new or had a specific onset (that is, it is not lifelong)
  • persistent and/or recurrent
  • unexplained by other conditions
  • has resulted in a substantial reduction in activity level
  • characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at

least 24 hours, with slow recovery over several days)

and one or more of the following symptoms:

  • difficulty with sleeping, such as insomnia, hypersomnia,
  • unrefreshing sleep, a disturbed sleep–wake cycle
  • muscle and/or joint pain that is multi-site and without evidence of inflammation
  • headaches
  • painful lymph nodes without pathological enlargement
  • sore throat
  • cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
  • physical or mental exertion makes symptoms worse
  • general malaise or ‘flu-like’ symptoms
  • dizziness and/or nausea
  • Palpitations in the absence of identified cardiac pathology.

Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time.

Signs and symptoms that can be caused by other serious conditions (‘red flags’) should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated:

  • localising/focal neurological signs
  • signs and symptoms of inflammatory arthritis or connective tissue disease
  • signs and symptoms of cardiorespiratory disease
  • significant weight loss
  • sleep apnoea
  • Clinically significant lymphadenopathy.

Provision of care

Healthcare professionals responsible for caring for people with CFS/ME should have appropriate skills and expertise in the condition.

Every person diagnosed with CFS/ME should be offered:

  • information about the illness, acceptance and understanding, and assistance negotiating the healthcare, benefits and social care systems.
  • assistance with occupational activities including work and education if appropriate.

(NHS Choices, 2015)

Bristol CFS/ME Service

Information about the Bristol CFS/ME Service for adults, which covers South Gloucestershire, Bristol and North Somerset, can be found on the North Bristol NHS Trust webpages for the Bristol CFS/ME Service:

Up to date referral criteria including the blood tests required before referral can be found here:

The service was established in 2004, and provides specialist assessments, and support with rehabilitation in line with NICE guidelines(NICE, 2007), and the British Association for Chronic Fatigue Syndrome/ME (BACME) therapy guide.

Patients who are not eligible for treatment under this policy may be considered on an individual basis where their GP or consultant believes exceptional circumstances exist that warrant deviation from the rule of this policy.

Individual cases will be reviewed at the CCG’s Individual Funding Request Panel upon receipt of a completed application form from the patient’s GP, consultant or clinician. Applications cannot be considered from patients personally.

If you would like further copies of this policy or need it in another format, such as Braille or another language, please contact the Patient Advice and Liaison Service on 0800 073 0907 or 0117 947 4477.

This policy has been developed with the aid of the following references:

NHS Choices. (2015, February 25th). Chronic fatigue syndrome. Retrieved from NHS Choices:

NICE. (2007, August). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):

diagnosis and management. Retrieved from NICE:

Approved by (committee): / Clinical Policy Review Group
Date Adopted: / 16th September 2016 / Version: / 1617.1
Produced by (Title) / Commissioning Manager – Individual Funding
EIA Completion Date: / Date / Undertaken by (Title):
Review Date: / Earliest of either NICE publication or three years from approval.
CATEGORY / VERSION / CATEGORY / VERSION / CATEGORY / VERSION
Bristol / Criteria Based Access / 1617.1 / North Somerset / Criteria Based Access / 1617.1 / South Gloucestershire / Criteria Based Access / 1617.1