This Guidelines summary covers recommendations on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Included are recommendations on principles of care; suspecting and diagnosing ME/CFS; providing information and support for those with suspected ME/CFS; symptom management for people with ME/CFS; dietary management and strategies; and review in primary care.
This summary only covers recommendations for primary care and does not cover very severe ME/CFS. For the complete set of recommendations, refer to the full guideline.
Severity of ME/CFS
|Box 1: Severity of ME/CFS|
Definitions of severity are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. The definitions below provide a guide to the level of impact of symptoms on everyday functioning.
People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.
People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
Very Severe ME/CFS
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
Principles of Care for People with ME/CFS
Also see the section on care for people with severe or very severe ME/CFS in the full guideline.
Awareness of ME/CFS and its Impact
- Be aware that ME/CFS:
- is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated
- affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity
- is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer
- can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work and education.
- Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness. Take into account:
- the impact this may have on a child, young person or adult with ME/CFS
- that people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.
Approach to Delivering Care
- Health and social care professionals should:
- take time to build supportive, trusting and empathetic relationships
- acknowledge to the person the reality of living with ME/CFS and how symptoms could affect them
- use a person-centred approach to care and assessment
- involve families and carers (as appropriate) in discussions and care planning if the person with ME/CFS chooses to include them
- be sensitive to the person’s socioeconomic, cultural and ethnic background, beliefs and values, and their gender identity and sexual orientation, and think about how these might influence their experience, understanding and choice of management.
- Recognise that people with ME/CFS need:
- timely and accurate diagnosis so they get appropriate care for their symptoms
- regular monitoring and review, particularly when their symptoms are worsening, changing or are severe (see the section on managing flare-ups in symptoms and relapse and review in primary care).
- Explain to people with ME/CFS and their family or carers (as appropriate) that they can decline or withdraw from any part of their care and support plan and this will not affect access to any other aspects of their care. They can begin or return to this part of their plan if they wish to.
- When working with children and young people with ME/CFS, 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).
- Explain to people presenting with possible symptoms of ME/CFS that there currently is no diagnostic test for ME/CFS and it is recognised on clinical grounds alone.
- Suspect ME/CFS if:
- the person has had all of the persistent symptoms in box 2 for a minimum of 6 weeks in adults and 4 weeks in children and young people and
- the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels and
- symptoms are not explained by another condition.
|Box 2: Symptoms for Suspecting ME/CFS|
|All of these symptoms should be present:|
- If ME/CFS is suspected, carry out:
- a medical assessment (including symptoms and history, comorbidities, overall physical and mental health)
- a physical examination
- an assessment of the impact of symptoms on psychological and social wellbeing
- investigations to exclude other diagnoses, for example (but not limited to):
- urinalysis for protein, blood and glucose
- full blood count
- urea and electrolytes
- liver function
- thyroid function
- erythrocyte sedimentation rate or plasma viscosity
- C-reactive protein
- calcium and phosphate
- serum ferritin
- coeliac screening
- creatine kinase.Use clinical judgement to decide on additional investigations to exclude other diagnoses (for example, vitamin D, vitamin B12 and folate levels; serological tests if there is a history of infection; and 9am cortisol for adrenal insufficiency)
- Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:
- orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
- temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
- neuromuscular symptoms, including twitching and myoclonic jerks
- flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
- intolerance to alcohol, or to certain foods and chemicals
- heightened sensory sensitivities, including to light, sound, touch, taste and smell
- pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
- Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether an early referral is needed. For children and young people, consider seeking advice from a paediatrician.
- When ME/CFS is suspected:
- continue with any assessments needed to exclude or identify other conditions
- give the person advice on managing their symptoms in line with the section on advice for people with suspected ME/CFS.
Referring Children and Young People with Suspected ME/CFS
- When ME/CFS is suspected in a child or young person based on the criteria in the second and third recommendation in the previous section:
- refer them to a paediatrician for further assessment and investigation for ME/CFS and other conditions
- start to work with the child or young person’s place of education or training to support flexible adjustments or adaptations.
Advice for People with Suspected ME/CFS
- When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:
- not to use more energy than they perceive they have – they should manage their daily activity and not ‘push through’ their symptoms
- to rest and convalesce as needed (this might mean making changes to their daily routine, including work, school and other activities)
- to maintain a healthy balanced diet, with adequate fluid intake.
- Explain to people with suspected ME/CFS that their diagnosis can only be confirmed after 3 months of persistent symptoms. Reassure them that they can return for a review before that if they develop new or worsened symptoms, and ensure that they know who to contact for advice.
- Diagnose ME/CFS in a child, young person or adult who has the symptoms in the second recommendation in the section Suspecting ME/CFS that have persisted for 3 months and are not explained by another condition.
- Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms at 3 months and whether further investigations are needed.
- Refer adults directly to an ME/CFS specialist team (see box 3 in the full guideline) to confirm their diagnosis and develop a care and support plan.
- Refer children and young people who have been diagnosed with ME/CFS after assessment by a paediatrician (based on the criteria in the second recommendation in the section Suspecting ME/CFS) directly to a paediatric ME/CFS specialist team (see box 3 in the full guideline) to confirm their diagnosis and develop a care and support plan.
Information and Support
- Ensure information is provided to people with ME/CFS and their family or carers (as appropriate):
- in a variety of formats, such as written materials, electronic and audio, and suitable for their needs (for example, in their preferred language or an accessible version)
- both in person in clinical settings and for them to use at home.
Follow the principles on communication, information giving and shared decision making in the NICE guidelines on patient experience in adult NHS services, people’s experience in adult social care services and shared decision making.
- When providing information for children and young people with ME/CFS, take into account their age and level of understanding, symptoms and any disabilities or communication needs. Use interactive formats such as:
- one-to-one or group discussion
- written materials and pictures
- play, art and music activities
- digital media, for example video or interactive apps.
Information About ME/CFS
- Give people with ME/CFS and their family or carers (as appropriate) up-to-date information about ME/CFS as soon as it is suspected. Tailor information to people’s circumstances, including their symptoms, the severity of their condition and how long they have had ME/CFS. Ask people regularly if they would like more information or to revisit discussions.
- Explain that ME/CFS:
- is a fluctuating medical condition that affects everyone differently, in which symptoms and their severity can change over a day, week or longer
- varies in long-term outlook from person to person – although a proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS
- varies widely in its impact on people’s lives, and can affect their daily activities, family and social life, and work or education (these impacts may be severe)
- can be worsened by particular triggers – these can be known or new triggers or in some cases there is no clear trigger
- can be self-managed with support and advice (see the section on energy management)
- can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.
- Explain to children and young people with ME/CFS and their parents or carers (as appropriate) that the outlook is better in children and young people than in adults.
- Give people with ME/CFS and their family or carers (as appropriate) information about:
- self-help groups, support groups and other local and national resources for people with ME/CFS
- where to access advice about financial support, including applying for benefits.
- Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.
Also see the section on care for people with severe or very severe ME/CFS in the full guideline.
- Discuss with people with ME/CFS the principles of energy management, the potential benefits and risks and what they should expect. Explain that it:
- is not curative
- is a self-management strategy led by the person themselves with support from a healthcare professional in an ME/CFS specialist team
- includes all types of activity (cognitive, physical, emotional and social) and takes into account overall level of activity
- helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits
- recognises that each person has a different and fluctuating energy limit and they are experts in judging their own limits
- can include help from a healthcare professional to recognise when they are approaching their limit (children and young people in particular may find it harder to judge their limits and can overreach them)
- uses a flexible, tailored approach so that activity is never automatically increased but is maintained or adjusted (upwards after a period of stability or downwards when symptoms are worse)
- is a long-term approach – it can take weeks, months or sometimes even years to reach stabilisation or to increase tolerance or activity.
- Help people with ME/CFS develop a plan for energy management as part of their care and support plan. Support them to establish realistic expectations and develop goals that are meaningful to them. Discuss and record the following in the plan along with anything else that is important to the person:
- cognitive activity
- mobility and other physical activity
- ability to undertake activities of daily living
- psychological, emotional and social demands, including family and sexual relationships
- rest and relaxation (both quality and duration)
- sleep quality and duration
- effect of environmental factors, including sensory stimulation.
- Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms. For example:
- agree a sustainable level of activity as the first step, which may mean reducing activity
- plan periods of rest and activity, and incorporate the need for pre-emptive rest
- alternate and vary between different types of activity and break activities into small chunks.
- Agree how often to review the person’s energy management plan with them and revise it if needed.
- Advise people with ME/CFS how to manage flare-ups and relapses (see the section on managing flare-ups in symptoms and relapse in the full guideline).
- Make self-monitoring of activity as easy as possible by taking advantage of any tools the person already uses, such as an activity tracker, phone heart-rate monitor or diary.
- Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:
- have difficulties caused by reduced physical activity or mobility (also see the sections on physical functioning and mobility and care for people with severe or very severe ME/CFS in the full guideline) or
- feel ready to progress their physical activity beyond their current activities of daily living (see the section on physical activity and exercise) or
- would like to incorporate a physical activity or exercise programme into managing their ME/CFS (see the section on incorporating physical activity and exercise).
Incorporating Physical Activity and Exercise
- Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.
- Only consider a personalised physical activity or exercise programme for people with ME/CFS who:
- feel ready to progress their physical activity beyond their current activities of daily living or
- would like to incorporate physical activity or exercise into managing their ME/CFS.
- Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.
- If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.
- If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
- establishing their physical activity baseline at a level that does not worsen their symptoms
- initially reducing physical activity to be below their baseline level
- maintaining this successfully for a period of time before attempting to increase it
- making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
- recognising a flare-up or relapse early and outlining how to manage it.
- Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a cure for ME/CFS
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme that does not follow the approach in the previous recommendation or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4 in the full guideline)
- physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
Flare-ups and Relapse
- Agree with the person how to adjust their physical activity during a flare-up or relapse. This should include:
- providing access to review and support from a physiotherapist in an ME/CFS specialist team
- stabilising their symptoms by reducing physical activity to within their current energy limits
- only once symptoms stabilise and the person feels able to resume physical activity, establishing a new physical activity baseline.
- Advise people with ME/CFS after a flare-up that the time it takes to return to the level of physical activity they had before varies from person to person.
Symptom Management for People with ME/CFSRefer to relevant NICE guidance for managing symptoms that are not covered in this section, taking into account the recommendations in the sections on principles of care for people with ME/CFS, access to care and support and energy management.
Rest and Sleep
- Advise people with ME/CFS:
- about the role of rest in ME/CFS
- that rest periods are part of all management strategies for ME/CFS
- how to introduce rest periods into their daily routine, including how often and for how long, as appropriate for each person
- that relaxation techniques at the beginning of each rest period could be helpful.
- Give people with ME/CFS personalised sleep management advice that includes:
- explaining the role and effect of sleep disturbance in ME/CFS
- identifying the common changes in sleep patterns seen in ME/CFS (such as broken or shallow sleep, altered sleep pattern or hypersomnia)
- developing good sleep habits
- taking into account the need for rest in the day, and balancing this against how the person is sleeping at night
- introducing changes to sleep patterns gradually.
- If sleep management strategies do not improve the person’s sleep and rest, think about the possibility of an underlying sleep disorder or dysfunction and whether to refer to an appropriate specialist.
- Review the use of rest periods and sleep management strategies regularly as part of the person’s care and support plan.
Physical Functioning and Mobility
- Include strategies to maintain and prevent deterioration of physical functioning and mobility in the care and support plans of people with ME/CFS. These strategies may need to be carried out in small amounts and spread out throughout the day. Think about including the following:
- joint mobility
- muscle flexibility
- postural and positional support
- muscle function
- bone health
- cardiovascular health.
- Assess at every contact people with severe or very severe ME/CFS or those with prolonged periods of immobility for:
- Give people with ME/CFS and their family or carers (as appropriate) information, advice and support on how to recognise and prevent possible complications of long-term immobility.
- Give families and carers information, advice and support on how to help people with ME/CFS follow their care and support plan in relation to physical functioning and mobility. This may include:
- bed mobility
- moving from lying to sitting to standing
- transferring from bed to chair
- using mobility aids
- joint mobility
- muscle stretching
- muscle strength
- going up and down stairs.
For training to provide care and support, see NICE’s guideline on supporting adult carers.
- Be aware that people with ME/CFS may experience orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).
- Medicine for orthostatic intolerance in people with ME/CFS should only be prescribed or overseen by a healthcare professional with expertise in orthostatic intolerance.
- Refer people with orthostatic intolerance to secondary care if their symptoms are severe or worsening, or there are concerns that another condition may be the cause.
- Be aware that pain is a symptom commonly associated with ME/CFS.
- Investigate and manage the person’s pain according to best practice, referring to specialist pain services if appropriate.
- Refer to the following for advice on treating neuropathic pain or headaches:
- Do not offer any medicines or supplements to cure ME/CFS.
- Offer people with ME/CFS a medication review in line with the NICE guidelines on medicines adherence and medicines optimisation.
- Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment. Consider:
- starting medicines at a lower dose than in usual clinical practice
- gradually increasing the dose if the medicine is tolerated.
- Drug treatment for the symptoms associated with ME/CFS for children and young people should only be started under guidance or supervision from a medical professional trained and experienced in paediatric prescribing.
Dietary Management and StrategiesAlso see the section on care for people with severe or very severe ME/CFS in the full guideline.
- Emphasise to people with ME/CFS the importance of adequate fluid intake and a well-balanced diet according to the NHS eat well guide.
- Work with the person and their family or carers (as appropriate) to find ways of minimising complications caused by gastrointestinal symptoms (such as nausea), changes to appetite, swallowing difficulties, sore throat or difficulties with buying, preparing and eating food.
- Encourage people with ME/CFS who have nausea to keep up adequate fluid intake and advise them to try to eat regularly, taking small amounts often.
- Explain that not eating or drinking may increase their nausea.
- Refer people with ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are:
- losing weight and at risk of malnutrition
- gaining weight
- following a restrictive diet.
- Be aware that people with ME/CFS may be at risk of vitamin D deficiency especially those who are housebound or bedbound. For advice on vitamin D supplementation, see the NICE guideline on vitamin D.
- Explain to people with ME/CFS that there is not enough evidence to support routinely taking vitamin and mineral supplements as a cure for ME/CFS or for managing symptoms. If they choose to take a vitamin or supplement, explain the potential side effects of taking doses of vitamins and minerals above the recommended daily amount.
- Refer children and young people with ME/CFS who are losing weight or have faltering growth or dietary restrictions to a paediatric dietitian with a special interest in ME/CFS.
- For advice on food allergies in children, see the NICE guideline on food allergy in under 19s.
- Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.
Cognitive Behavioural TherapyAlso see the section on care for people with severe or very severe ME/CFS in the full guideline.
- Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). Explain:
- its principles, including that it may help them manage their symptoms but it is not curative (see box 5 in the full guideline) and
- any potential benefits and risks.
- Only offer CBT to adults, children and young people with ME/CFS if, after discussing it (see the recommendation above), they would like to use it to support them in managing their symptoms.
- For children and young people with ME/CFS who would like to use CBT:
- involve parents or carers (as appropriate) in the therapy wherever possible
- adapt the therapy to the child or young person’s cognitive and emotional stage of development. Also see the section on principles of care for people with ME/CFS (including the additional principles of care for children and young people with ME/CFS).
- CBT should only be delivered by a healthcare professional with appropriate training and experience in CBT for ME/CFS, and under the clinical supervision of someone with expertise in CBT for ME/CFS.
Managing Coexisting Conditions
- Be aware that other conditions may coexist with ME/CFS and should be investigated and managed according to best practice.
- When managing coexisting conditions in people with ME/CFS, take into account the recommendations in the sections on principles of care for people with ME/CFS, access to care and support and energy management.
- For recommendations on multimorbidity, thyroid disease and irritable bowel syndrome in adults, refer to the:
- For recommendations on identifying and treating associated or comorbid anxiety, depression or mood disorders, see the:
Managing Flare-ups in Symptoms and Relapse
- Explain that flare-ups and relapses can happen in ME/CFS even if the person’s symptoms are well managed.
- Tell people with ME/CFS that:
- they are likely to be having a flare-up if they experience a worsening of their symptoms beyond their normal day-to-day variation, which lasts a few days
- a relapse is when there is a sustained and marked exacerbation of ME/CFS symptoms lasting longer than a flare-up and needing substantial and sustained adjustment of energy management.
- Include guidance on managing flare-ups and relapses in the person’s care and support plan.
- Evaluate and investigate any new symptoms or a change in symptoms and do not assume they are caused by the person’s ME/CFS.
- Discuss and agree self-management strategies with the person with ME/CFS to help them respond promptly if they have a flare-up or relapse, and record these in their care and support plan. This should include:
- For a flare-up:
- identifying possible triggers, such as acute illness or overexertion (in some cases, there may be no clear trigger)
- temporarily reducing their activity levels
- monitoring symptoms, recognising that although flare-ups are transient, some will develop into a relapse
- not returning to usual activity levels until the flare-up has resolved.
- For a relapse:
- reducing, or even stopping, some activities
- increasing the frequency or duration of rest periods
- reassessing energy limits to stabilise symptoms.
- For a flare-up:
- If a flare-up or relapse cannot be managed using the person’s self-management strategies outlined in their care and support plan or they are worried about new symptoms or a change in symptoms, advise the person to contact their named contact in primary care or the ME/CFS specialist team.
- When a person with ME/CFS has a relapse, review their care and support plan with them (if needed), and discuss and agree a course of action, taking into account:
- possible causes of the relapse, if known
- the nature of the symptoms
- the severity and duration of the relapse (bearing in mind this can be years).
After a Flare-up or Relapse
- Once a flare-up or relapse has resolved or stabilised, discuss with the person:
- whether their care and support plan needs to be reviewed and adjusted to reflect their current symptoms and energy limit if this is different from before the flare-up or relapse (for people participating in physical activity or exercise programmes, see the section on incorporating physical activity and exercise)
- their experience of the flare-up or relapse to determine whether strategies can be put in place to manage potential triggers in the future.
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.
Also see the recommendation on ensuring the child’s voice is heard and on involving their parents or carers, in the section on principles of care for people with ME/CFS.
For recommendations on training for health and social care professionals and care for people with severe or very severe ME/CFS, refer to the full guideline.