Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

Why the committee made the recommendations

Common themes across the qualitative evidence showed a lack of belief about myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) as a real condition by health and social care professionals, and a lack of understanding about what it is and the impact it has. The committee used this evidence to make recommendations to raise awareness about ME/CFS. One strong theme showed how experiencing a lack of understanding and prejudice can lead to people losing trust in health and social care services. The committee agreed that health and social care professionals need to take into account the impact of not being believed when building relationships with people with ME/CFS and their families. The committee considered this particularly relevant to children and young people and made separate recommendations highlighting communication with children.

The evidence showed this loss of trust can be compounded when people with ME/CFS have negative experiences of healthcare services if they decline treatments that have been offered to them. This was a strong theme in the evidence for children and young people. The committee agreed that declining a specific treatment should not affect other areas of the person's care.

The qualitative evidence also showed that one of the barriers to good ME/CFS management was a late diagnosis and a lack of monitoring, and this reflected the committee's experience.

How the recommendations might affect practice

These overarching principles will improve consistency of best practice and do not need any additional resources to deliver.

Return to recommendations

Why the committee made the recommendations

The committee took into account both the lack of evidence on diagnostic tests and the evidence that people value realistic advice about ME/CFS (particularly around diagnosis) when making the recommendation to explain how the condition is recognised.

How the recommendations might affect practice

There is variation in practice and no single set of criteria is used clinically, with a 'mix and match' approach used alongside clinical experience. These recommendations will standardise practice and it is not believed they will have any impact on resource use or training.

There will be no change to the current practice of diagnosing ME/CFS based on clinical assessment and history and performing tests for differential diagnoses as appropriate.

The recommendations aim to raise awareness of symptoms and associated conditions that should raise suspicion of ME/CFS, particularly among healthcare professionals with limited knowledge about ME/CFS. This could increase the number of people with suspected ME/CFS who are then referred to an ME/CFS specialist team, but it will help to ensure they get appropriate care and better outcomes.

The recommendation that children and young people with suspected ME/CFS should be referred to a paediatrician after 4 weeks is earlier than in current practice. However, referring earlier for further assessment will help children and young people to get appropriate care sooner by identifying and excluding other conditions as well as ME/CFS, improving their outcomes.

Return to recommendations

Why the committee made the recommendations

There was limited clinical evidence on management strategies for people with suspected ME/CFS. The qualitative evidence and the committee's experience suggested that managing symptoms early may prevent them from getting worse and the person's health deteriorating. To reflect this, the committee made a recommendation to give people advice on symptom management drawn from their own knowledge and experience.

The qualitative evidence suggested this can be an anxious time for people with suspected ME/CFS and the committee agreed it was important for people to know who to contact if their symptoms change.

How the recommendations might affect practice

Providing the advice in these recommendations would not impose a significant cost on the NHS. If this advice leads to fewer people with deteriorating symptoms, the recommendations would be highly cost effective.

Return to recommendations

Why the committee made the recommendations

The committee agreed that although a 6‑month delay before diagnosis is built into the Institute of Medicine criteria, the criteria could be safely amended by reducing this period to 3 months. The committee saw removing this delay as useful because it might enable earlier management and could potentially improve longer-term outcomes.

Reflecting the common theme across the evidence about a lack of knowledge of ME/CFS and evidence that non-specialists in ME/CFS are not confident about diagnosing and managing ME/CFS, the committee recommended referring people with ME/CFS to an ME/CFS specialist team at 3 months to confirm their diagnosis and develop a care and support plan.

How the recommendations might affect practice

The duration of symptoms before diagnosis can take place has been reduced but the criteria are now stricter, requiring that 4 different sets of symptoms are all present in order to suspect ME/CFS. The impact therefore will not necessarily be an increase in referrals but for people to receive their diagnosis earlier, which will bring forward their assessment and care plan. Earlier access to appropriate advice and care could prevent disease progression and therefore might lead to some resource savings in the longer term.

Return to recommendations

Why the committee made the recommendations

The committee agreed that the key to managing ME/CFS symptoms successfully is having a collaborative personalised care and support plan. This should be developed based on a holistic assessment as soon as the person's diagnosis is confirmed. The committee agreed that a medical assessment should be part of this assessment, typically requiring access to a medically trained clinician. A copy of the care and support plan can be shared with primary care and a copy held by the person themselves, and it can be referred to in situations such as planning an admission to hospital. In the committee's experience, this approach to assessment and planning is common in ME/CFS specialist teams.

The committee outlined key areas to assess what support might be needed, based on their experience. The committee noted that the key areas to assess and the support needed will depend on the person's severity of ME/CFS, the impact of their symptoms and their needs. Once the care and support plan is agreed, it then provides a basis for the more detailed assessments and plans outlined in specific interventions in the guideline, such as social care needs assessments, energy management, physical functioning and mobility, cognitive behavioural therapy (CBT) and dietary management.

How the recommendations might affect practice

Carrying out a holistic assessment and developing a care and support plan is already current practice in ME/CFS specialist services, although there may be more referrals to the specialist service resulting from these recommendations. However, having a care and support plan will facilitate people's care and may lead to better outcomes. If assessment is carried out early and a care plan is implemented, it could reduce resource use in the longer term by preventing progression of disease.

Return to recommendations

Why the committee made the recommendations

Qualitative evidence showed that people with ME/CFS valued information from health and social care practitioners in formats that took into account the way symptoms such as 'brain fog' affected their capacity to take in and remember information. The committee highlighted formats that were reported as useful.

The evidence showed people with ME/CFS and their families and carers valued general information about ME/CFS that they could use themselves and share with others (families, friends, employers and practitioners), particularly around the time of diagnosis and the early stages of ME/CFS. This enabled them to develop accurate expectations about the future, relieve distress caused by the general lack of information and educate others. The evidence suggested people with ME/CFS wanted realistic information about what ME/CFS is and how it might affect them in the future, and this formed the basis of the recommendations outlining the key characteristics of ME/CFS.

The recommendation noting that the long-term outlook can be better in children and young people was based on the committee's experience.

The evidence supported the committee's view that information about ME/CFS and advice about other support is not easily available from health and social care services, and they agreed that people would benefit from information from local and national support groups.

Evidence suggested that people with ME/CFS needed practical support, both for themselves and their carers. The committee considered that some people may have reservations about engaging with social care, after experiencing disbelief about their illness and the impact it has on their day-to-day functioning. For this reason, the committee emphasised the need for sensitivity when talking to people and their families about social care support.

The committee made recommendations signposting to different assessments and support that could be helpful. In their experience, health and social care professionals did not always know what support is available to families and carers of people with ME/CFS, so the committee also referred to the NICE guideline on supporting adult carers.

How the recommendations might affect practice

The recommendations are in line with the general principles for providing information already established in the existing NICE guideline on patient experience in the NHS and so were not considered likely to have any additional impact on practice.

Return to recommendations

Why the committee made the recommendations

The committee recognised that safeguarding is a particular issue in ME/CFS in a way that is different from other chronic illnesses and disabilities because people with ME/CFS commonly report that they are not believed. No evidence was identified on safeguarding in ME/CFS, but the committee agreed it was very important to make recommendations based on consensus. The recommendations address some of the misconceptions on this topic and highlight the need for expertise in ME/CFS when carrying out safeguarding assessments.

The committee emphasised the need for frequent review of children and young people with ME/CFS (in line with recommendations 1.15.2 and 1.15.3). The importance of appropriate review is also highlighted in the NICE guidelines on child maltreatment and child abuse and neglect.

The committee noted that although safeguarding is not solely about children and young people, most of the concerns they were aware of related to children and young people with ME/CFS so they made separate recommendations for this group.

How the recommendations might affect practice

The recommendations will improve consistency of best practice and do not need any additional resources to deliver.

Return to recommendations

Why the committee made the recommendations

The evidence showed that people with ME/CFS can have difficulty using healthcare services, particularly because of physical accessibility and the time constraints of appointments. This can make it more difficult to get the support and treatment they need. The committee were also aware that common sensitivities in ME/CFS, such as to light and sound, can make it challenging to travel to and attend appointments and to receive inpatient care. The committee made recommendations to improve access to care based on these potential barriers.

The committee discussed the unpredictable and fluctuating nature of ME/CFS and the risk that people will be discharged from a service if they miss appointments when their symptoms worsen. They made a recommendation based on consensus to address the lack of awareness about this in health and social care services.

How the recommendations might affect practice

Some of these recommendations might need extra staff time or other healthcare resource use, for example to offer flexible appointments and home visits, make adjustments during inpatient stays and provide access to aids and adaptations. However, for equity reasons, people with ME/CFS need the same access to healthcare and support as other NHS patients that is commensurate with the severity of their illness.

Return to recommendations

Why the committee made the recommendations

The evidence showed a lack of support with education and training for children and young people with ME/CFS and their families and carers, and this can result in some children or young people leaving education. This reflected the committee's experience and they agreed that many of the themes in the evidence could also be applied to people in work.

The common theme of lack of knowledge and understanding about ME/CFS was echoed in this evidence with a lack of awareness about the impact that a high-stimulus environment (such as a school) can have on someone with ME/CFS. There was a lack of understanding about the need for a flexible approach to education with possible adjustments. The committee agreed that better communication between health and social care professionals and training and education services is key to develop a shared understanding of the needs and impairments of people with ME/CFS and how to provide them with appropriate educational support.

How the recommendations might affect practice

The recommendations will improve consistency of best practice and do not need any additional resources to deliver.

Return to recommendations

Why the committee made the recommendations

There was limited evidence on the composition of a multidisciplinary team, but based on their experience, the committee agreed that good care for people with ME/CFS results from access to an integrated team of health and social care professionals who are trained and experienced in diagnosing and managing ME/CFS.

The fluctuating nature of ME/CFS means that people's support needs can change, so access to different expertise is needed at different times. The committee agreed that medical assessment and diagnosis would typically require access to an ME/CFS specialist physician or a GP with a special interest in ME/CFS. The committee agreed to make recommendations on providing a coordinated multidisciplinary approach and to identify the expertise that should be available.

In the committee's experience, care for most people with ME/CFS can be managed in primary care after their diagnosis is confirmed and they have a care and support plan agreed. However, the committee acknowledged the lack of confidence that non-specialists can have in managing ME/CFS and they recommended support from an ME/CFS specialist team.

The qualitative evidence showed that people with ME/CFS valued continuity of care and the committee agreed that having a single point of contact in their care team would avoid needing to have contact and appointments with multiple professionals which, for some people, could worsen their health.

How the recommendations might affect practice

The recommendations on the ME/CFS specialist multidisciplinary team, providing a named contact and giving support to primary care services may need resources. Current provision of ME/CFS specialist teams is very uneven across the country and increased staffing may be needed in some areas if there are more referrals. The specialist team will need to cover different areas of expertise, but most people will only need access to some elements and only at specific times. However, faster access to diagnosis and appropriate care should lead to better symptom management and to substantially better outcomes for people with ME/CFS and so might reduce health and care costs in the longer term.

Allocating a single point of contact to people with ME/CFS is not routine practice across the NHS. This could be implemented differently in different regions according to local service structures and may not necessarily need the addition of new staff. It could improve the efficiency of care for people with ME/CFS by reducing the burden of repeated appointments.

Return to recommendations

Why the committee made the recommendation

Overall, the evidence for non-pharmacological and pharmacological interventions for ME/CFS was heterogenous and inconclusive, with limited evidence for any single intervention, and this supported the committee's experience. The committee were aware of claims that have been made about cures for ME/CFS and that there is often a financial cost to people with ME/CFS when they pursue these. To address this, the committee agreed to raise awareness in the recommendations of the current lack of a cure for ME/CFS.

How the recommendation might affect practice

The recommendations reflect current practice so no effect on resources is anticipated.

Return to recommendation

Why the committee made the recommendations

The committee discussed how the controversy over graded exercise therapy had resulted in confusion over what support should be available to people with ME/CFS to safely manage their level of activity, including physical activity or exercise. They agreed it was important to provide clarity of information and clear guidance around energy management, physical activity and exercise to people with ME/CFS. The committee also agreed people need clear information about services available to them to support the development of energy management plans.

Based on their experience, the committee agreed that energy management is one of the most important tools that people with ME/CFS have to support them in living with the symptoms of ME/CFS. They agreed that people with ME/CFS should have access to support from an ME/CFS specialist team to develop a plan for energy management.

The committee listed the components of energy management and what an assessment and plan would include, noting that the key component is understanding the principle of using energy in a way to minimise post-exertional malaise. They recommended a detailed assessment that takes into account all areas of current activity and evaluation of rest and sleep, to establish an individual activity pattern within the person's current energy limit. The committee noted that energy management is not a physical activity or exercise programme, although the principles of energy management do apply to physical activity and exercise programmes.

To avoid potential harms by energy management being wrongly applied to people with ME/CFS without adequate support and expertise, the committee recommended that in specific circumstances, people with ME/CFS should be referred to a physiotherapist or occupational therapist in an ME/CFS specialist team.

How the recommendations might affect practice

The energy management plan forms part of the care and support plan and is part of ME/CFS specialist care. Appropriate energy management supports people to stay within their energy limits and aims to prevent their symptoms from worsening. It also supports them to increase their activity if possible. If this helps people maintain or improve their health this will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

The committee agreed that clarity of information and clear guidance on energy management in relation to all activity should be available to people with ME/CFS. The committee also agreed that people need clear information about services available to them, and particularly the specific circumstances in which a personalised physical activity or exercise programme could be considered by a person with ME/CFS.

In the committee's experience, people with ME/CFS have had varying results from physical activity and exercise programmes. The committee agreed it was important to discuss this with people with ME/CFS and to explain to them the possible risks and benefits.

Because of the harms reported by people with ME/CFS in the qualitative evidence, as well as the committee's experience of the effects when people exceed their energy limits, the committee recommended that people with ME/CFS should not undertake a physical activity or exercise programme unless it is overseen by a physiotherapist who has training and expertise in ME/CFS.

The committee outlined what a personalised physical activity or exercise programme should, and should not, include. In developing recommendations on the content, approach and delivery of physical activity and exercise programmes, the committee considered the benefits and harms associated with graded exercise therapy that had been reported with ME/CFS across the quantitative and qualitative evidence, alongside their own experiences. They recognised that different definitions of the term 'graded exercise therapy' are used, and as a result the content and application of graded exercise therapy programmes differ. This has resulted in confusion. Taking into account descriptions of graded exercise therapy in the evidence they reviewed, the committee included a definition in this guideline to clarify what graded exercise therapy is intended to mean in the recommendation.

The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME/CFS. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS.

For people with ME/CFS who do choose to take part in a physical activity or exercise programme, this should follow the principles set out in this section and the energy management section.

How the recommendations might affect practice

These recommendations should prevent inappropriate or unstructured physical activity or exercise programmes from worsening people's symptoms. The referral to a physiotherapist or occupational therapist in an ME/CFS specialist team may need increased resources. However, this should not impose a significant cost on the NHS and if it leads to fewer people with deteriorating symptoms, it will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

The committee considered that giving advice on planning rest and activity was a fundamental part of any management strategy. In their experience, understanding the role of rest and how to introduce rest periods was important in successful energy management.

There was a lack of evidence for sleep management, but the committee recognised that difficulty with sleep was an area of concern for many people with ME/CFS. The committee discussed making recommendations based on consensus for providing advice for people with ME/CFS and agreed they could recommend general advice for sleep management. They noted that there are common sleep patterns in people with ME/CFS that need to be considered when giving advice about sleep management. In addition, they made a recommendation for research on sleep management strategies.

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS and if they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

The committee discussed that people with ME/CFS can have reduced or limited mobility and, in their experience, this can lead to health problems. Physical functioning and mobility should therefore be assessed and included in the person's care and support plan.

The committee agreed that people with ME/CFS who are immobile need information to help them recognise and prevent the possible complications of long-term immobility, for example in relation to bone health and skin problems. In the committee's experience, families and carers are given only limited information about these areas of care (for example, how to transfer someone from a bed to a chair) and it would have helped them.

How the recommendations might affect practice

The recommendations are already established in other NICE guidance and should not impose a significant cost on the NHS. If they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

Orthostatic intolerance is identified as one of the symptoms commonly associated with, but not exclusive to, ME/CFS (see the section on suspecting ME/CFS). In the committee's experience, although not everyone with ME/CFS experiences orthostatic intolerance, it is very common and the symptoms can be hard to differentiate from other ME/CFS symptoms.

Based on consensus, the committee made recommendations to raise awareness that people with ME/CFS may experience orthostatic intolerance, and to clarify when people with orthostatic intolerance should be referred to secondary care.

The committee did not make any recommendations on managing orthostatic intolerance because this can involve advice on diet, daily activities and activity support and needs to be tailored to each person, taking into account their other ME/CFS symptoms.

The committee recommended that medicines should only be prescribed or overseen by a clinician with expertise in orthostatic intolerance because the medicines that are usually prescribed can worsen other symptoms in people with ME/CFS.

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS and if they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

Pain is identified as one of the symptoms commonly associated with, but not exclusive to, ME/CFS (see the section on suspecting ME/CFS). The committee agreed that pain is a common symptom in people with ME/CFS and is particularly intense in people with severe or very severe ME/CFS. The lack of evidence meant they could not recommend any interventions, but they did refer to the NICE guidelines on neuropathic pain and headaches. The committee also made consensus-based recommendations to raise awareness about pain in ME/CFS and what action to take.

How the recommendations might affect practice

The recommendation referring to other NICE guidance should not have a resource impact as those recommendations are already established. The other recommendations should not impose a significant cost on the NHS and if they lead to fewer people deteriorating then they would be highly cost effective.

Return to recommendations

Why the committee made the recommendations

The evidence for any pharmacological interventions for ME/CFS was inconclusive, with limited evidence for any one medicine, and this supported the committee's experience. The committee were aware of claims that have been made about cures for ME/CFS and there is often a financial cost to people with ME/CFS when these are pursued. The committee considered it was important to highlight that medicines or supplements should not be offered as a cure for ME/CFS.

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS and if they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

There was not enough evidence to make a recommendation for a particular dietary strategy for ME/CFS. However, the committee agreed some general recommendations to ensure that people with ME/CFS get appropriate support related to diet. This included guidance on when to refer someone to a dietitian with a special interest in ME/CFS. The committee also referred to other relevant NICE guidance.

The committee recognised that difficulties with diet and nutrition was an area of concern for many people with ME/CFS. They discussed making consensus-based recommendations for providing dietary strategies for people with ME/CFS, but they agreed it was hard to be confident in making recommendations when there was no evidence and a lack of consensus in the area, so they made a recommendation for research on dietary strategies.

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS and if they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Why the committee made the recommendation

The committee discussed the limited evidence on the Lightning Process. They acknowledged that although some benefit was demonstrated and aspects of it, such as goal setting, practical examples and applications and peer support, were found to be helpful, the qualitative evidence on people's experiences of the therapy varied and raised some concerns. In the qualitative evidence, some people reported negative experiences to do with the confusing nature of the educational component, the intensity of the sessions, and the secrecy surrounding the therapy. While in the SMILE trial children under 16 were accompanied by parents, the committee were particularly concerned about the reported secrecy of the Lightning Process in the qualitative evidence and the lack of public information on the implementation of the process in practice. The committee agreed the transparency of any intervention is important and noted that in the qualitative evidence it was reported that people had been specifically encouraged not to talk about the therapy. The committee agreed this was an inappropriate and unusual message to give, particularly to children and young people.

The committee discussed concerns that the Lightning Process encourages people with ME/CFS to ignore and 'push through' their symptoms and this could potentially cause harm. In the qualitative evidence, some participants reported they had received advice they could do what they wanted. The committee noted they had made clear recommendations on the principles of energy management and this advice appears at odds with these principles.

Overall, the committee considered there was a lack of clarity around the implementation of the Lightning Process in practice and some concerning issues raised in the qualitative evidence. As a result, the committee agreed the Lightning Process should not be offered to people with ME/CFS.

How the recommendation might affect practice

The Lightning Process is not offered as part of current practice so this recommendation will maintain current practice.

Return to recommendation

Why the committee made the recommendations

The quantitative and qualitative evidence was mixed for adults, children and young people, and this reflected the committee's experience. Based on criticisms in the qualitative evidence of cognitive behavioural therapy (CBT) being described as a 'treatment' (cure) for ME/CFS, the committee considered it was important to highlight that CBT is not a cure for ME/CFS and should not be offered as such. Instead, it aims to improve wellbeing and quality of life, and may be useful in supporting people who live with ME/CFS to manage their symptoms and reduce the distress associated with having a chronic illness. It should therefore only be offered in this context, and after people have been fully informed about its principles and aims. The committee agreed if a child or young person would like to use CBT, it was important to adapt the therapy taking into account their cognitive and emotional maturity.

The qualitative evidence showed that people with ME/CFS have found CBT useful when delivered by a therapist who understands ME/CFS, but also that there is the potential for harm when it is inappropriately delivered. To avoid this, the committee made the recommendation about who should deliver CBT and the clinical supervision they should have.

The committee also made recommendations based on their experience to explain the principles of CBT for people with ME/CFS and what people should expect if they decide to consider CBT.

How the recommendations might affect practice

CBT is currently provided for people with ME/CFS in specialist ME/CFS services. The recommendations clarify when CBT should be offered to people with ME/CFS. They should not have an impact on NHS resource and costs.

Return to recommendations

Why the committee made the recommendations

The evidence on the diagnostic criteria identified that some conditions are common in people with ME/CFS and this reflected the committee's experience. The committee made recommendations to highlight this and referred to relevant NICE guidance.

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS.

Return to recommendations

Why the committee made the recommendations

In the committee's experience, flare‑ups and relapse are a common part of ME/CFS. The committee considered it important to give people information about what a flare‑up is, how to recognise one and how they can lead to a relapse if activity is not monitored and adjusted.

The committee discussed the importance of recognising when a flare‑up has moved to a relapse and that it needs to prompt a review of their care and support plan. It is also possible that a relapse may lead to someone moving to a more severe form of ME/CFS. Part of the review of the care and support plan is to consider what the causes of relapse might have been and to consider this when revising the plan.

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS and if they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Why the committee made the recommendations

The evidence showed that people with ME/CFS did not always receive follow‑up or review of their care, but those who did valued this. This reflected the committee's experience, so they recommended at least annual reviews for adults.

The committee agreed that children and young people need more frequent review to take into account changes in their ME/CFS as they develop. They also wanted to highlight the importance of involving a paediatrician.

The committee outlined areas for discussion during the review, including asking people how much support they had to carry out their activities of daily living. This was because, in the committee's experience, this is an area often overlooked and the input of family and carers is often not acknowledged. The committee noted that if any problems are identified, advice should be sought from an appropriate specialist.

How the recommendations might affect practice

There is variation in practice and some people with ME/CFS, including those with severe or very severe ME/CFS, do not get a clinical review routinely, so for some this will be a change in practice. These recommendations are in line with other long-term conditions and support equity of access to care for people with ME/CFS. Routine follow‑up might not be present everywhere but most people with ME/CFS already have regular contact with their primary care teams, so there is not expected to be a large resource impact.

Return to recommendations

Why the committee made the recommendation

A strong theme in the evidence was the lack of knowledge, understanding and up-to-date training that health and social care professionals have about ME/CFS. This was reflected in the committee's experience, so they recommended that all health and social care staff who deliver care to people with ME/CFS should be trained so they are able to provide the care in this guideline.

How the recommendation might affect practice

Training and education in ME/CFS are not widespread and this will be a change in practice, so there will be a resource impact from the cost of providing this training. Improving knowledge and awareness about ME/CFS will support identifying ME/CFS earlier, which should improve people's care and lead to better outcomes.

Return to recommendation

Awareness of severe and very severe ME/CFS and its impact

People with severe or very severe ME/CFS were named as a group for special consideration in the guideline scope. Evidence relating to people with severe ME/CFS reinforced the committee's experience that this group of people are often neglected, and the severity of their symptoms misunderstood, and with every recommendation the committee considered whether different or additional recommendations were needed for this group. The rationale and impact sections for these recommendations are below. These additional considerations for people with severe or very severe ME/CFS were placed in a separate section to make sure they could be easily found within the guideline.

Return to recommendations

Assessment and care and support planning by an ME/CFS specialist team

Access to care and support

Energy management

Dietary management and strategies

How the recommendations might affect practice

The recommendations should not impose a significant cost on the NHS and if they lead to fewer people with deteriorating symptoms, they will be highly cost effective.

Return to recommendations

Cognitive behavioural therapy