Review in primary care
Offer adults with ME/CFS a review of their care and support plan in primary care at least once a year.
Offer children and young people with ME/CFS a review of their care and support plan at least every 6 months.
Arrange more frequent primary care reviews for children, young people and adults with ME/CFS as needed, depending on the severity and complexity of their symptoms, and the effectiveness of any symptom management.
When carrying out a review in primary care, ensure you have access to the person's care and support plan and any clinical communications from the ME/CFS specialist team (including their discharge letter, if relevant).
As part of the review, discuss with the person with ME/CFS (and their family or carers, as appropriate) and record as a minimum:
- their condition, including any changes in their illness and the impact of this
- symptoms, including whether they have experienced new symptoms
- self-management - ask about their energy management plan and (if relevant) their physical activity or exercise programme
- who is helping them and how they provide support
- psychological, emotional and social wellbeing
- any future plans - ask if the person is considering any changes or if they have any challenges ahead.
Refer the person with ME/CFS to their named contact in the ME/CFS specialist team if there are any new or deteriorating aspects of their condition.
Consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether a referral is needed
Evaluate and investigate whether new symptoms, or a change in symptoms, are due to the person's ME/CFS or whether they are due to another condition.
Additional principles for children and young people
Ensure reviews are carried out or overseen by a paediatrician with expertise in ME/CFS. Involve other appropriate specialists as needed.
When deciding how often reviews or reassessment might be needed for children and young people with ME/CFS, take into account:
- their developmental stage
- transitions, such as changing schools or exams
- the severity and complexity of symptoms
- the effectiveness of any symptom management.
Ensure their voice is heard by:
- taking a child-centred approach, with the communication focusing on them
- discussing and regularly reviewing with them how they want to be involved in decisions about their care
- taking into account that they may find it difficult to communicate and describe their symptoms and may need their parents or carers (as appropriate) to help them
- recognising that they may need to be seen on more than 1 occasion to gain trust (with or without their parents or carers, as appropriate).
Definitions:
Care and support plan
- the personalised collaborative care and support plan is developed by the ME/CFS specialist team based on a holistic assessment. It is the basis for other assessments and plans in areas such as social care, energy management, physical activity, physical functioning and mobility, cognitive behavioural therapy and dietary management
Energy management
- a self-management strategy that involves a person with ME/CFS managing their activities to stay within their energy limit, with support from a healthcare professional.
Exercise
- Exercise is planned, structured, repetitive and purposeful activity focused on improvement or maintenance of 1 or more components of physical fitness. Exercise is a subcategory of physical activity
Flare-up
- a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform their usual activities. flare-ups may occur spontaneously or be triggered by another illness, overexertion or other triggers. flare-ups usually occur as part of post-exertional malaise but it is possible for other symptoms, such as pain, to flare-up without post-exertional malaise. The worsening of symptoms is transient and flare-ups typically resolve after a few days, either spontaneously or in response to temporary changes in energy management or a change in treatment. A relapse lasts longer than a flare-up
Graded exercise therapy
- is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active
Physical activity
- any bodily movement produced by skeletal muscles that results in energy expenditure. It should not be confused with exercise. Physical activity in daily life can be categorised into occupational, sports, conditioning, household or other activities, and can be done during leisure time, to get around or as part of a person's work. See World Health Organization advice on physical activity. Physical activity has a health benefit for most people and many conditions, but in people with ME/CFS, physical activity may make their symptoms worsen
Relapse
- a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare-up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits
Reference:
- NICE (October 2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management