Individuals with ME/CFS often face scepticism and dismissive attitudes when trying to navigate the healthcare system. A major contributory factor is inadequate training of health and social care professionals, and thus a lack of understanding about the condition. Nevertheless, it is important to recognise that the NICE 2021 guideline for ME/CFS is available, which details the impact of ME/CFS and offers recommendations for coordinated, individualised care. Although the guideline alone does not replace up-to-date and comprehensive education for professionals, its use in clinical practice could improve the quality of life of individuals with ME/CFS.
NICE guidelines are officially produced for use in England, but they can inform decisions in Wales, Scotland, and Northern Ireland. Whilst adherence to NICE guidelines is not mandatory, NICE states that, “Healthcare and other professionals are expected to take [them] fully into account when exercising their clinical judgement.”
This article condenses the key recommendations from the NICE ME/CFS 2021 guideline which spans over 90 pages. By understanding these recommendations, individuals with ME/CFS can better advocate for themselves and be more informed about the care they should receive.
Summary of Key Recommendations for Health and Social Care Professionals from NICE 2021 Guideline for ME/CFS
1. Awareness of impact
Disease complexity
Professionals should recognise that ME/CFS “is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated”. Furthermore, they should acknowledge the broad and debilitating effects of ME/CFS on activities of daily living, family life, social life, work, education, and emotional wellbeing. Even seemingly minimal activities, have potential to trigger post-exertional malaise (PEM), and the condition fluctuates, involving “flare-ups and relapses even if symptoms are well managed”.
Stigma and Isolation
Professionals should acknowledge that individuals 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.”
NICE recognises that individuals may not be seen at their worst, as their condition may make it difficult to seek help when most symptomatic, e.g., cognitive difficulties impacting communication.
2. General management strategies
Professionals should understand that “ME/CFS symptoms can be managed but there is currently no cure (pharmacological or non-pharmacological)”.
Energy management (pacing)
Professionals should understand the principles of energy management, i.e. pacing, and work with individuals to “establish an individual activity pattern within their current energy limits that minimises their symptoms”. This should take into account all types of activity – cognitive, physical, emotional and social. A course of action should be agreed upon for flare-ups and relapses.
Diet
Professionals should encourage a balanced diet and adequate hydration and should help manage gastrointestinal issues, such as nausea. If needed, patients should be referred to an ME/CFS dietitian.
Preventing complications
Professionals should discuss strategies to maintain and prevent deterioration of physical functioning, addressing areas such as joint mobility, muscle flexibility, and cardiovascular health. Additionally, they should assess for and give advice on the prevention of possible complications of long-term immobility, such as pressure ulcers.
3. Individualised management of symptoms and comorbidities
Where possible, individual symptoms, comorbidities and co-existing conditions should be identified, addressed and managed using an individualised approach that also takes into account ME/CFS severity (mild, moderate, severe, very severe). Note: Medications are for management of ME/CFS, but should not be offered by health professionals as a cure.
The guideline highlights the following –
- Pain – Professionals should manage pain following best practices and refer to specialist pain services as appropriate. If relevant, professionals can refer to separate NICE guidelines for neuropathic pain and headaches.
- Sleep issues – Professionals should provide personalised sleep management advice and consider referrals to investigate potential underlying sleep disorders/dysfunction.
- Orthostatic intolerance, including postural orthostatic tachycardia syndrome – Management needs to be tailored to each person, taking into account their other ME/CFS symptoms, and medicines must be prescribed or overseen by a clinician with expertise in orthostatic intolerance.
- Vitamin D deficiency – Professionals should be aware that individuals with ME/CFS, especially those who are house- or bedbound, may be at risk of vitamin D deficiency, therefore should consider supplementation.
- Co-existing conditions – Professionals should also consider and address co-existing conditions (other conditions occurring at the same time), such as thyroid disorders, irritable bowel syndrome, and mental health issues.
4. Multidisciplinary care
Effective care involves a coordinated, multidisciplinary approach. If needed, and where possible, patients should be referred to ME/CFS specialist teams for comprehensive assessments and individualised care and support plans. These teams may include specialists from fields like rheumatology, neurology, and infectious diseases, alongside dietitians, physiotherapists, and “clinical or counselling psychologists”.
Prior to the NICE 2021 guideline, a Freedom Of Information request (FOI) request by Action for ME, sent to commissioning NHS organisations across the UK, revealed that only 44% of NHS organisations reported back as having commissioned specialist ME/CFS services, with vast areas, such as Northern Ireland, having no provision. A 2022 report to the Scottish Government states – “When asked to consider the current management of ME/CFS in Scotland there was a consistent response about the absence of a referral pathway, the paucity of provision, a lack of understanding from generalist services, and, if support was available, it was inconsistent and disjointed. ‘There isn’t really an infrastructure specific to ME – no specialist teams to refer people to – more interested individuals – tends to be the luck of the draw’ (Clinician).”
Following the COVID-19 pandemic, it is likely that the level of need has greatly increased, with many individuals with long COVID thought to meet ME/CFS diagnostic criteria, and the closure of a number of long COVID clinics.
5. Access to broader support
Professionals should guide individuals on how to access necessary benefits and social care services, as detailed –
- Social Care Needs Assessments – Professionals should refer or help individuals with ME/CFS and family or carers (as appropriate) self-refer for a social care needs assessment from their local authority.
- Aids and Adaptations – Professionals should expedite the provision of aids and adaptations identified in social care assessments to allow individuals to perform daily activities and maintain quality of life. Information and support in arranging home adaptations should be offered, including enabling prompt assessment for funding.
- Inpatient Care Needs – When inpatient care is required, potential issues that may arise should be discussed, including environmental factors like lighting, sound, heating, and smells, that may impact their wellbeing.
- Employment and Education – Professionals should offer to communicate on behalf of the individual with their employer, educational institution, or other support services. They should inform individuals with ME/CFS that they may be eligible for reasonable adjustments or adaptations under the Equality Act 2010 to facilitate their continuation or return to work or education (if appropriate), whilst recognising that individuals may need periods away from these activities.
- Supporting Family and Carers – Professionals should explain available support options for family members and carers, providing them with guidance as appropriate.
Information should be tailored to each individual’s needs and offered in various formats, such as written or audio. NICE advises that the timing, length, and frequency of appointments should be adjusted based on individual preferences, ensuring accessibility and accommodating sensory sensitivities.
Severe and Very Severe ME/CFS
There should be additional considerations for individuals with severe and very severe ME/CFS. Professionals should be aware that individuals with severe or very severe ME/CFS experience profoundly debilitating symptoms that can significantly impact their mobility, ability to care for themselves, and ability to interact with others.
Professionals should consider that individuals may require low-stimulus environments, support with all activities of daily, and assistance with hydration, nutrition and communication. Each interaction with a person with severe and very severe ME/CFS should be risk-assessed to avoid worsening symptoms, whilst “keeping the focus of the engagement on the person with ME/CFS.”
6. Caution in management approaches
Certain approaches are potentially harmful. NICE explicitly advises against recommending Graded Exercise Therapy (GET), which involves incrementally increasing physical activity, as this can worsen symptoms. The guideline states – “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.” Cognitive Behavioural Therapy (CBT) should not be promoted as a cure, although may help some patients adjust emotionally to living with ME/CFS. The Lightning Process or similar therapies should also not be offered.
7. Long-Term Support and Monitoring
Professionals should recognise that people with ME/CFS need “regular monitoring and review, particularly when their symptoms are worsening, changing or are severe”. Support should be provided long-term, as ME/CFS largely follows a chronic and fluctuating course. Adjustments should reflect any changes in condition. Professionals should offer adults with ME/CFS a yearly review, and children and young people a review every 6-months, of their care and support plan.
Conclusion
The NICE 2021 guideline for ME/CFS is comprehensive and detailed. Full implementation across the country and greater adherence to its recommendations by health and social care professionals ought to help individuals with ME/CFS receive more effective care, ultimately enhancing their quality of life.
