UK Medical Education Resources on ME for Healthcare Professionals

Thank you for taking an interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

This page brings together a range of resources to help you keep up-to-date on the latest recommendations and support your patients.

CPD Module: Learn About ME

This free, CPD-accredited learning module aims to support GPs, paediatricians and other health professionals to develop their clinical knowledge of ME/CFS, consistent with the 2021 NICE guideline. It is available online and offers 1 CPD point. It normally takes less than an hour to complete and is based on case studies and the latest biomedical evidence.

The module is accompanied by a podcast series and webinars with contributions from clinicians, allied health professionals, people with lived experience and their carers.

Click here to take the CPD module
Click here to listen to the podcasts
Click here to listen to the webinars

NHS elearning on ME

This elearning programme has been developed in collaboration with patient groups and the Department of Health and Social Care as a resource for all healthcare practitioners looking to enhance their knowledge and support for individuals living with ME/CFS.

It aims to:

Introduction to ME/CFS: this session is accessible to all and aims to provide an introduction to the complex nature of ME/CFS. The session explains what ME/CFS is, discusses the potential causes and diagnostic challenges and provides an overview of possible management strategies.

The second session called ME/CFS: guidance for community-based healthcare practitioners aims to inform and empower community-based healthcare practitioners with the knowledge and tools needed to effectively diagnose, manage, and support patients with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

The last and third session will be focusing on long-term management of ME/CFS, treatment recommendations and pharmacological solutions and is aimed at clinicians.

NHS elearning

Resources for all Healthcare Professionals

Resources relating to Children and Young People


NICE Guideline (2021)

The NICE guideline for ME/CFS (NG206) is a vital update on the guidance for diagnosis and management of the condition. It is a significant revision of the previous guideline and includes specific guidance on caring for people with Severe and Very Severe ME/CFS, as well as children and young people.

Click Here

Key points from the UK's ME guideline

Severity

Mild ME
People with mild ME 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.

Moderate ME

People with moderate ME 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.
Severe ME
People with severe ME 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
People with very severe ME 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.

Diagnosis

In the UK, ME should be diagnosed in a child, young person or adult who has the symptoms below that have persisted for 3 months and are not explained by another condition.

ME should be suspected by 6 weeks in adults and 4 weeks in children and young people who have all of these symptoms for at least 4 weeks when they aren't explained by another condition.

When ME is suspected, people should be advised:

Debilitating fatigue
Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Post-exertional malaise
Post-exertional malaise after activity in which the worsening of symptoms:

  • is often delayed in onset by hours or days
  • is disproportionate to the activity
  • has a prolonged recovery time that may last hours, days, weeks or longer.
Unrefreshing sleep
Unrefreshing sleep or sleep disturbance (or both), which may include:

  • feeling exhausted, feeling flu-like and stiff on waking
  • broken or shallow sleep, altered sleep pattern or hypersomnia.
Cognitive difficulties
Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Key areas of information and advice

Access to care and support
Health and social care organisations should ensure that people with ME can use their services by:

  • adapting the timing, length and frequency of all appointments to the person's needs
  • taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking, and where rooms are for appointments
  • taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells
  • providing care flexibly to the person's needs, such as by online or phone consultations or making home visits.
Information about ME
People with ME should be given tailored information about their illness. It should be explained that:

  • ME is a fluctuating condition
  • the long-term outlook varies from person to person, but many will need to adapt to living with ME/CFS
  • ME can be worsened by particular triggers
  • ME can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.

People with ME should be signposted to support groups, given advice on financial and social support, and access to aids and adaptations.

Principles of care
Health professionals should 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.

They should involve families and carers (as appropriate) in discussions and care planning if the person with ME chooses to include them. They should also be aware that ME 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. It's important to understand this is a fluctuating illness.

Energy Management

Energy Management is the key management approach for all people with ME. It's a long term approach, that aims to help 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.

People with ME should be supported to develop an energy management plan that takes into account all the activities they do – including both physical and cognitive activities.

The new guideline clearly states that health professionals should "work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms."

A specialist physiotherapist or occupational therapist may be helpful for some people.

People with ME should be provided with further advice, support and treatments to manage different symptoms.

Read the NICE guideline

Click Here

Take the CPD Module: Learn About ME

Click Here