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National Collaborating Centre for Primary Care (UK). Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet]. London: Royal College of General Practitioners (UK); 2007 Aug. (NICE Clinical Guidelines, No. 53.)

Cover of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy)

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet].

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7People with severe CFS/ME

7.1. Introduction

No definitive studies have been carried out in the UK to determine the prevalence of severe CFS/ME in people with CFS/ME, but estimates range from 25%4 (population and setting not clear) to a lower figure experienced in general clinical practice.‡‡‡ People who have severe CFS/ME may be unable to carry out activities of daily living and may spend a significant proportion, or all, of the day in bed.

The symptoms experienced by patients with severe CFS/ME are diverse and debilitating, and these may fluctuate and change, both in type and in severity. It is therefore important that the management and care plan is flexible and reviewed regularly. In the clinical experience of several members of the GDG, some people with severe CFS/ME do improve and, after being bedridden for a number of years, now have mild/moderate symptoms and are active. However some people may have severe CFS/ME for years, and some may never recover. Reports have also been published of people with severe CFS/ME that has responded well to individually designed and supported activity management programmes.48;49

7.2. Purpose and context of this chapter

In the past, this group of patients have either received healthcare that is inappropriate and even harmful, or been unable to access healthcare services. There are anecdotal reports of people with severe CFS/ME not seeing medical practitioners for many years.

The purpose of this chapter is to highlight where there are additional needs or additional caution is required specifically in the care of people with severe CFS/ME. However, this is not intended as a definitive guide to the specialist CFS/ME care needed for this patient group, and further reading is recommended.50

This chapter does not address issues that commonly arise in conditions where individuals are severely and chronically ill, for example access to care and the stresses put on carers. These are addressed in other publications such as the National Service Framework for Long Term Conditions www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/LongTermConditions/fs/en (England only, no equivalent available for Wales). Although the NSF for Long Term Conditions does not refer specifically to CFS/ME, it is the GDG’s opinion that the standards and examples of best practice included are generalisable to the care of people with CFS/ME. The NHS Patient Advice and Liaison Services (PALS; www.pals.nhs.uk) also provide a general source of information and support to patients and carers.

People with severe CFS/ME should, in general, have the same access to services as would any person with CFS/ME. All of the recommendations in this chapter relating to people with severe CFS/ME should be read in the context of all the recommendations and be specially tailored to individual choice, need and level of severity. For reference, only those recommendations exclusively relevant to people with severe CFS/ME are repeated in this chapter.

7.3. General recommendations

Note: numbers in square brackets are as in the NICE guidelines.

Key principles of care for people with severe CFS/ME [1.9]

General principles of care [1.9.1]

Management of severe CFS/ME is difficult and complex and healthcare professionals should recognise that specialist expertise is needed when planning and providing care for people with severe CFS/ME. [1.9.1.1]

Diagnosis, investigations, management and follow-up care for people with severe CFS/ME should be supervised or supported by a specialist in CFS/ME. [1.9.1.2]

People with severe CFS/ME may need to use community services at times. These services may include nursing, occupational therapy, dietetics, respite care, psychology and physiotherapy (see the ‘National service framework for long-term conditions’§§§). The input of different professionals should be coordinated by a named professional. [1.9.1.3]

People with severe CFS/ME should be offered a summary record of every consultation because of their cognitive difficulties. [1.9.1.4]

Most people with CFS/ME will not need hospital admission. However, there may be circumstances when a planned admission should be considered. The decision to admit should be made with the person with CFS/ME and their family, and be based on an informed consideration of the benefits and disadvantages. For example, a planned admission may be useful if assessment of a management plan and investigations would require frequent visits to the hospital. [1.9.1.5]

Rest [1.9.2]

When making decisions about prolonged bed rest, healthcare professionals should seek advice from a specialist experienced in the care of people with severe CFS/ME. The significant physical and psychological risks associated with prolonged bed rest should be taken into account. [1.9.2.1]

Healthcare professionals working with people with severe CFS/ME who are in bed most (or all) of the time, should explain the associated risks (such as postural hypotension, deep venous thrombosis, osteoporosis, pressure sores and deconditioning) and monitor these. [1.9.2.2]

Management approaches [1.9.3]

People with severe CFS/ME should be offered an individually tailored activity management programme (see recommendation 1.6.2.22) as the core therapeutic strategy, which may:

  • be delivered at home, or using telephone or email if appropriate
  • incorporate the elements of recommendation 1.6.2.22 and draw on the principles of CBT and GET (see recommendations 1.6.2.1–21). [1.9.3.1]

An activity management programme should be reviewed regularly and frequently. [1.9.3.2]

7.4. Additional information related to Chapter 4 – General principles of care

People with severe CFS/ME should be given information about their condition and management in a format that is accessible to them. Patients with severe cognitive difficulties may benefit from an audio tape or written summary of the consultation. Contact and communication with the Department for Work and Pensions and other relevant benefit agencies may be an issue and this should be discussed and advice provided, if appropriate.

7.4.1. Support

The guideline has highlighted the impact that severe CFS/ME may have on many aspects of life and the following section highlights the support needs of patients and their carers. It is recognised that people with severe CFS/ME face particular difficulties and barriers when accessing care and that they have specific needs.

Home support

Patients with severe CFS/ME may require domiciliary visits by the CFS/ME multidisciplinary team with reviews from the GP and specialist clinician as appropriate. Regular home reviews and the use of telephone, video link, email or text messaging, as appropriate, may facilitate good communication and therapeutic support.

A mutually agreed key worker should be appointed, and an understanding, supportive and trusting relationship should be established early in the process of care.

A full functional assessment of the personal and domestic needs of the patient within the home should be completed (for example, people with severe CFS/ME are often sensitive to light, noise and chemicals, so may require quiet, dark surroundings with no or limited use of household products such as cleaning products or air fresheners), as well as an assessment of the carer’s needs. Carers for people with severe CFS/ME will need support and healthcare professionals should provide information on the sources noted above.

The provision of equipment and environmental adaptation as part of an agreed management plan should be considered in order to increase independence, allow dignity, and increase overall functioning for patients with severe CFS/ME. As with any intervention, the use of equipment and adaptations should be reviewed regularly.

There may, however, be occasions when patients with severe CFS/ME are unable to make progress at home (despite input from the CFS/ME team) and may benefit from a period of admission to specialist CFS/ME services. This provides an opportunity to review management and provide a higher level of support. It is also an opportunity to review symptom presentation and medication, and to access further investigations if needed.

Children and young people, and adults in further or higher education, who have severe CFS/ME will be unable to access conventional education and therefore individualised learning plans need to be developed. This will require close liaison between those providing education at home (home tuition and virtual learning) and the clinical team. It is important to make sure that cognitive activities are included in the management plan and it may be necessary to provide some training about CFS/ME for the teachers involved. See the exemplar on Chronic Fatigue Syndrome (CFS) and Myalgic Encephalopathy (ME) which forms part of the National Service Framework in England for children, young people and maternity services51 (available at www.dh.gov.uk/assetRoot/04/09/81/25/04098125.pdf). See also the Wales National Service Framework for children, young people and maternity services at www.wales.nhs.uk.

Impact on families and carers

Caring for a person with severe CFS/ME can be overwhelming for the family and carers. Healthcare professionals need to be aware of the impact that symptoms can have on family life, including the disruption of family routine, isolation, lack of support and changes in family roles. As with other illnesses, appropriate support should be offered to the family and carer. Please refer to the National Service Framework for Long Term Conditions (available at www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/LongTermConditions/fs/en for England; Wales does not yet have a specific NSF for long term care) which outlines what help and support carers and families can expect to receive.

7.4.2. Other considerations

Child protection

A lack of understanding and knowledge about CFS/ME, or lack of a clear diagnosis of CFS/ME, may lead to child protection concerns, as may disagreement between parents and professionals over preferred treatments.

Child protection should be considered as in any other chronic illness or disability. However healthcare professionals should be aware that:

  • unexplained symptoms in a child or young person do not constitute evidence of abuse
  • the exercising of choices about treatment or education by parents/carers and/or a young person does not constitute evidence of abuse
  • rapport with the family and a cooperative relationship using a flexible approach is essential to successful management. A child protection referral is likely to be destructive if based on flimsy or ill-reasoned evidence
  • the differential diagnosis of fabricated or induced illness (FII) is difficult. Paediatricians should follow the Department of Health guidelines and RCPCH guidelines on FII.

Key documents that address the issue of child protection include The Chief Medical Officer’s Working Group Report on CFS/ME4 and the Royal College of Paediatrics and Child Health Evidence Based Guideline for the Management of CFS/ME.1

Sectioning under the Mental Health Act

Whilst mental health professionals may have a role to play in the treatment of CFS/ME, both in assessment and management of the condition and in the treatment of comorbid psychiatric illness, use of the Mental Health Act in management of the condition is extremely rare. This is likely to occur where CFS/ME is complicated by severe eating disorders, depression, psychosis or other forms of severe mental illness.

Healthcare professionals should be aware that the stringencies and protocols that apply to use of the Mental Health Act for any condition should be followed if its use is being considered for a patient who also has CFS/ME.

7.5. Additional information related to Chapter 5 – Making a diagnosis of CFS/ME

7.5.1. Investigations

Patients should have as many as possible of the initial screening tests done at home. If further tests are necessary, the different options should be discussed with the patient so they can make an informed choice. The options are likely to include outpatient or inpatient assessment and timing of the tests. In such settings outside the home, people with severe CFS/ME may require additional provisions, such as an area to rest, as appropriate to their needs.

7.5.2. Diagnosis

As discussed in Chapter 5, a diagnosis of CFS/ME is made on the basis of exclusion of other conditions, and the assessment of symptoms indicative of CFS/ME. There is anecdotal evidence that, in the past, it has taken years for some patients to have a diagnosis of CFS/ME confirmed, and the recommendations should be used by healthcare professionals to raise the suspicion of CFS/ME early in the diagnostic process.

There is a risk in attributing new or unusual symptoms to existing CFS/ME. The healthcare professional must be alert to alternative diagnoses and conditions. Regular review should be carried out to identify and assess both ongoing and new or unusual symptoms in patients with severe CFS/ME.

7.5.3. Referral

As discussed in the management section of the guideline, people with severe symptoms should be referred immediately to specialist CFS/ME care for specific care and support. Early referral may minimise the progression of the illness.

7.6. Additional information related to Chapter 6 – Management

Because of the severity and complexity of symptoms, people with severe CFS/ME are often not able to contribute to, or may be excluded from or under-represented in, research trials. It is acknowledged that there is a lack of research for this patient subgroup. However, there is a growing understanding of how to manage severe CFS/ME from the experience of patients and carers, support groups and health practitioners specialising in this area.

7.6.1. Pharmacological interventions

For people with severe CFS/ME, symptom management is a useful form of management. Although there is no research evidence about greater intolerance to and more severe side effects from drug treatment in people with CFS/ME, some patients with severe CFS/ME have reported being sensitive to medication and experiencing more side effects. Where patients have concerns healthcare professionals should discuss this and may consider starting drug treatment used for the control of CFS/ME symptoms at a lower dose than in usual clinical practice. The dose may then be increased slowly, in agreement with the patient.

7.6.2. General management strategies and non-pharmacological programmes

Any management programme devised for people with severe CFS/ME must be developed and implemented with great care in order to lessen the chance of exacerbation or setback/relapse. People with severe symptoms may be more susceptible to the cumulative effect, with their bodies being unable either to undertake or to sustain activity. In devising a management programme, healthcare professionals should be aware of the level of disability of patients; for example, being able to sit up or hold a conversation may be very difficult.

7.6.3. Dietary interventions and supplements

While many people with CFS/ME gain weight as a result of reductions in activity, others may lose weight poor nutritional status. However, weight loss should be assessed, and investigated as appropriate, to exclude other possible causes.

People with severe CFS/ME may face many difficulties in achieving adequate and balanced dietary intake including:

  • pain and fatigue making the physical process of eating difficult and possibly requiring help with feeding
  • sensitivity to the smell or taste of food
  • difficult or painful swallowing
  • sore throat making eating difficult
  • nausea affecting the ability to eat
  • bowel symptoms affecting food choices
  • food intolerances leading to a restricted diet
  • disturbed sleep patterns causing meal patterns to be disrupted
  • the need for carers to help with all aspects of food purchase and preparation.

The healthcare professional should work with the patient and carers to address these problems. In some extreme cases, this may include the use of tube feeding, if appropriate.

Referral to a dietitian should be made where there are concerns about weight maintenance or the adequacy of nutritional intake or fluid balance. Dietary advice should be individualised, depending on the symptoms experienced. Advice on how to combine foods to maximise absorption of nutrients may be useful. Particular attention should be paid to calcium and vitamin D intake in this group, as they are potentially at long-term risk of developing osteoporosis due to the lack of exposure to sunlight, the lack of weight-bearing exercise and possible self-restriction of diet due to food intolerances. There may be a need for use of prescribable supplements where requirements cannot be met by conventional means.

7.6.4. Review

As with other people with CFS/ME the timing of reviews should be based on the needs of the patient. Because of the complexity of the condition, reviews should be carried out under the supervision of a specialist in CFS/ME.

It can be difficult to identify new and potentially serious or fatal comorbidities, and any changes in symptoms or increases in severity should be considered for investigation.

The individual with severe CFS/ME may find it difficult to cope with seeing a number of different people in a multidisciplinary team and efforts should be made to minimise the number of contacts, noise and disruption to the individual. As noted previously, it is important that the patient has a mutually agreed key worker and that they have established an understanding, supportive and trusting relationship.

Footnotes

‡‡‡

As noted, there are no cited epidemiological data to support these figures in the UK.

§§§

Available from www​.dh.gov.uk

Copyright © 2007, Royal College of General Practitioners.
Bookshelf ID: NBK53587

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