WHAT IS ME/CFS?

ME/CFS is recognised as a post-viral fatigue syndrome. It is a long-term, multi-system disease that can have a devastating impact on functional ability and quality of life

No effective drug treatment has yet been developed, and full recovery is rare, but symptoms can stabilise and improve over time with careful management and support

This section of the website comprises key extracts from the 2021 NICE clinical guideline for ME/CFS

ME/CFS/PVFS Clinical and Research Guide

Contains everything that health professionals and patients need to know about this devastating neurological disease.

The NICE Clinical Guideline

This booklet is available as a free download and is recommended reading. It lets you know what to expect from the NHS and social care services with regard to ME/CFS and features symptom recognition, diagnosis, management, referral, and ongoing care and support.

General Information

Awareness and Impact 

Be aware that ME/CFS: 

  • is a complex, chronic medical condition affecting multiple body systems. The pathophysiology is still being investigated. 
  • affects everyone differently – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity. 

Approach to delivering care 
People with ME/CFS need: 

  • a 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. 

Access to care and support 

Be aware that people with ME/CFS are unlikely to be seen at their worst because: 

  • debilitating symptoms or the risk that their symptoms will worsen may prevent people from leaving their home 
  • cognitive difficulties may often mean people wait until they feel they can speak and explain clearly before contacting services. 

Diagnosis

ME/CFS should be suspected, if:

  • a person has had all of the 4 key symptoms below 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 and is significantly reduced from pre-illness levels and,
  • symptoms are not explained by another condition.

All of the following 4 symptoms should be present:

  • Debilitating fatigue that is worsened by activity,
  • Post exertional malaise/symptom exacerbation,
  • Unrefreshing sleep and/or sleep disturbance,
  • Cognitive dysfunction.

Diagnose ME/CFS in a child, young person, or adult:

  • who has the above 4 symptoms where they have persisted for 3 months and are not explained by another condition.
  • Refer adults directly to an ME/CFS specialist team to confirm their diagnosis and develop a care and support plan.

Specialist Referral

ME/CFS specialist team

  • Specialist teams should consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating, and managing ME/CFS.
  • They should have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice, and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS.
  • These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.

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

  • Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers informed by their holistic assessment.
  • Recognise that the person with ME/CFS is in charge of the aims of their care and support plan.

Management

Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.

Energy and activity management

  • Health professionals should discuss the principles of energy management, the potential benefits and risks and what people with ME/CFS should expect.
  • 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.
  • Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms.

Primary care reviews

  • 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.

Severe and Very Severe

Symptom impact

Recognise that symptoms of severe or very severe ME/CFS may mean that people:

  • need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction),
  • are housebound or bedbound and may need support with all activities of daily living, including aids and adaptations to assist mobility and independence in activities of daily living (for example, a wheelchair)

Personal care and support

Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:

  • known to the person and their family or carers wherever possible
  • aware of the person's needs.

Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person.

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