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
– ME/CFS is more disabling and can have a greater impact on quality of life, functional ability, employment, education, and income, than other serious medical conditions like Multiple Sclerosis.
– It is a chronic, long-term disease that can affect people for years or decades. Illness and symptom severities can fluctuate, remain the same, or get progressively worse.
– Most people will experience a severe or even very severe form of the illness at some point, often during the initial acute phase or following a relapse.
– Those very severely affected require 24-hour care and support, will be bedbound, unable to mobilise, feed themselves, or communicate effectively.
– ME/CFS has been estimated to effect two hundred and sixty-five thousand people in the UK (0.4 per cent). This is almost double the prevalence of Multiple Sclerosis.
– It is indiscriminate; affecting children, young people, and adults – irrespective of socio-economic background or ethnicity.
– Eighty per cent of those affected are women and it is believed that prevalence may be higher in ethnic minority groups.
– It is the greatest cause of long-term sickness absence from school.
– It is not an uncommon condition, but many who experience symptoms do not have a diagnosis and are not receiving suitable care and support.
– It is generally known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) although research has yet to conclusively determine causal pathways.
– ME/CFS is classified by WHO ICD-11 as a Post-Viral Fatigue Syndrome (8E-49) and defined as a disorder of the nervous system i.e., neurological. This is accepted by the NHS in each of the devolved countries of the UK and by the UK Government.
– The NHS digital classification system (SNOMED-CT) also recognises this classification and patients can be recorded as having mild, moderate, or severe ME/CFS on their patient records.
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.
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.
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.
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.
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
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.