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.
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.
This website page features:
- The ME Association ME Medical magazine,
- Key features of ME/CFS,
- How to locate an ME/CFS Specialist Service,
- Free summary of the 2021 NICE Clinical Guideline on ME/CFS,
- Free booklet on Diagnosing ME/CFS,
- Continuing Professional Development (CPD) online courses,
- Doctors with ME,
- Dialogues of a Neglected Illness (Videos).
The Magazine for Healthcare Professionals
What is in the magazine?
- Topical News and Developments
- Healthcare Recommendations.
- Research Publications.
- Implementing the 2021 NICE Guideline.
- “Ask the Doctor” with Dr Charles Shepherd.
- Personal stories from Healthcare Professionals with ME/CFS.
Sign-up below to receive a free quarterly magazine in the post! We will also send you a free copy of the MEA Clinical and Research Guide each year after it has received its annual update.
The ME/CFS/PVFS & Long Covid guide is the most comprehensive, evidence-based summary currently available, and contains everything that healthcare professionals need to know about this devastating neurological disease.
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.
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.
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.
The NICE Clinical Guideline on ME/CFS
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 symptom recognition, diagnosis, management, referral, and ongoing care and support. You can read the full NICE Guideline here.
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.
Continuing Professional Development
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
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.
Doctors with M.E.
Doctors with M.E. is a global professional association for medical practitioners and scientists that brings together leading experts and regional associations.
We aim to represent healthcare professionals who have M.E. and Long Covid. We are the first global professional association, and the first to be established and led by medics and experts who suffer from M.E.
What we can provide:
- Education and training
- Policy and compliance
- Distribution and collaboration
Our mission is to improve patient outcomes worldwide by empowering medics, scientists, industry and policymakers with up-to-date practices and scientific rigour, fostering collaboration between professionals, the industries they serve, patients and the public.
We are Doctors with M.E. and Doctors who stand with M.E.
Join us to take part in our Committees and Working Groups and help sculpt the future of M.E. and Long Covid.
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.