Information for Healthcare Professionals

Health Care Professionals

The ME Association is a national charity providing accurate and timely information, accessible support, topical campaigning, and vital biomedical research to help people with Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) and Long Covid.

ME/CFS presents as an acute illness – often following an infection – that can then become chronic with a devastating impact on functional ability and quality of life. HCPs have a key role to play in early recognition and diagnosis, ongoing support, symptom and illness management, and in the provision of clinician-led multidisciplinary specialist services.

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The ME Association welcomes the 2021 NICE Clinical Guideline on ME/CFS. We are working positively with colleagues in the NHS and social care to implement the Guideline's recommendations. We are part of the 2022-25 Government initiative to improve healthcare provision, understanding, awareness and biomedical research investment, working with the Department of Health and Social Care and the established working groups.

Key features of ME/CFS

How severe is it?

ME/CFS can cause have greater impact on quality of life and be more disabling than other serious medical conditions e.g., congestive heart failure, multiple sclerosis, and most cancers. 25% of people are severely affected and bedbound. Those very severely affected need 24-hour care and continuous support.

Definition

ME/CFS is classified by WHO ICD-11 as a Post-viral Fatigue Syndrome and defined as being a disease of the nervous system. This is accepted by the NHS in each of the devolved countries and by the UK Government. The NHS digital classification system (SNOMED-CT) also recognises this classification and ME/CFS should be recorded as such on patient records. 

How many affected?

It has been estimated that 265,000 people in the UK have ME/CFS (0.4 per cent). It effects both children and adults irrespective of socio-economic background or ethnicity. 80% of those affected are women. It is not an uncommon condition, but many are undiagnosed.

NICE Guideline

We hope the 2021 NICE Guideline will mean greater awareness of ME/CFS by HCPs in the NHS and social care. It should mean that anyone who presents with key symptoms receives validation and understanding, a prompt diagnosis, ongoing tailored support, referral to a suitable and local secondary care service, and appropriate help with management.

Management

Sensible, safe, and tailored symptom and illness management strategies are the best way to avoid relapses, move towards greater stability, and experience functional improvements.

Symptoms

Key symptoms – such as post-exertional malaise – help to clinically differentiate ME/CFS from other medical conditions and exclude other causes prior to a diagnosis being made.

Diagnosis

A physical examination, review of patient history, and use of established clinical criteria, help to make an early and accurate diagnosis – which can increase the chances of a better prognosis.

Free Booklet available

Diagnosing ME/CFS: Early and Accurate Diagnosis

This booklet is available as a free download. We explain why an early and accurate diagnosis is so important and review the recommendations in the 2021 NICE Clinical Guideline. We examine the core symptoms, the need to consider a patient's clinical history, clinical investigations and blood tests, and consider other explanations for persistent symptoms.

DOWNLOAD

Continuing Professional Development

NHS ENGLAND: ME/CFS E-LEARNING PROGRAMME

This 2024 e-learning 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 also aims to:

  • highlight the variability in patient experiences and the impact on individuals and their families
  • encourage the adoption of a multidisciplinary approach to patient care
  • highlight the importance of pacing, symptom management, and supportive networks

The programme offers 3 sessions, each with slightly different focus:

  • Session 1: 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.
  • Sessions 2 and 3: are aimed at primary and secondary care clinicians. They focus on the management of ME/CFS, treatment recommendations and pharmacological solutions. These will be launched in the near future.
VISIT THE COURSE SITE

LEARNA STUDY PRN: ME/CFS

FREE online CPD module composed of 10 clinical cases assessing your knowledge of ME/CFS. Receive a 1 Hour CPD Certificate on successful completion of this module.

The module will challenge your clinical knowledge and patient management as a Healthcare Professional. It has been written by clinical and patient experts including Dr Nina Muirhead (Doctors with ME), Dr Charles Shepherd (The ME Association), and members of the CFS/ME Research Collaborative (CMRC).

It is designed to update and assess your clinical knowledge and patient management of the evolving international biomedical narrative on ME/CFS. On successful completion, you will have an improved understanding of:

  • Post-exertional malaise as a principal feature of ME/CFS
  • Main diagnostic features of ME/CFS
  • Commonly comorbid conditions related to ME/CFS
  • The importance of early and accurate diagnosis
  • The dangers of prescribing exercise for ME/CFS
  • Differential diagnoses that may emerge when considering and following a diagnosis of ME/CFS
  • Relevant blood tests and investigations excluding alternative diagnoses and establishing disease features relevant to ME/CFS
  • Evaluating the needs of individuals in formulating treatment plans and propose the need for the development of disease-specific pharmacological management
  • The importance of providing patients with relevant documentation in connection with applications for state benefits, and social and community care
  • The heterogeneous nature of the condition, common patterns of onset, fluctuating levels of ability, variability in presentation, course of illness and outcomes, and range of severity
VISIT THE COURSE SITE

MIMS LEARNING: NICE guidance on ME/CFS

In this learning module, Dr Toni Hazell highlights relevant points for GPs and primary healthcare professionals from the 2021 NICE guideline on myalgic encephalomyelitis/chronic fatigue syndrome.

Educational objectives: After completing this module, healthcare professionals will be better able to:

  • Recall what’s new and what’s relevant to them in the October 2021 NICE guidance on ME/CFS
  • Know what to do differently in practice in the light of the NICE guidance
  • Accurately assess symptoms and severity of ME/CFS
  • Know what treatments are appropriate for ME/CFS
  • Know when to refer for specialist input
  • Be aware of areas of controversy in the management of ME/CFS

This module is not free. It requires a subscription, available from £14.99 a month.

VISIT THE COURSE SITE

Dialogues of a Neglected Illness 

This is an excellent project supported by the Wellcome Public Engagement Fund. It includes commentary from leading clinical and research experts – including Dr Charles Shepherd from the ME Association – as well as people who live with ME/CFS. 

To see more on Dialogues for ME/CFS visit their site here and below are 3 of their videos showing aspects of the illness.

NHSE E-learning for Healthcare:
An introduction to ME/CFS

An ‘Introduction to ME/CFS' is the first module to be released and is aimed at anyone – healthcare professionals and the wider public – as well as people with symptoms. Work will continue on the final two modules later this year.

Module 1

If you have any comments about the module please email: Feedback@meassociation.org.uk. Thank you.

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