Information for Healthcare 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.
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 Guidelines' 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.
Sign up for the free ME Medical Magazine and a copy of the Clinical and Research Guide (Purple Book) for Healthcare Professionals:
We have a comprehensive poster with expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) to help primary healthcare professionals diagnose ME/CFS and provide NHS specialist referrals.
We are empowering change in regional ME/CFS and Long Covid services
The 2025 H4ME annual report has been published. This report presents the findings from the H4ME pilot program conducted over the previous year.
The team has played a crucial role in collaborating with healthcare organisations and people with ME/CFS/LC throughout various regions of the UK. A primary focus has been on engaging with service leads in Wales and England, who oversee services for ME/CFS and Long Covid. Our efforts have focused on advocating for the establishment of the NICE Guidelines when services are not adhering to them, or on enhancing specialist services when this is not evident. Moreover, direct engagement with individuals experiencing ME/CFS and Long Covid has enabled us to share their lived experiences effectively.
Over the past year, the Healthcare Team has conducted a pilot project aimed at enhancing understanding, accessibility of care, and service quality for individuals living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid.
This initiative documented significant outcomes over 12 months, evaluating existing health and social care provisions, identifying gaps, and proactively engaging with various services to inspire meaningful change. Despite the progress made, substantial challenges remain, including prolonged waiting times, inconsistent access to care, limited services for severe ME, and outdated treatment methodologies. Addressing these critical areas will be essential in the future.
Nonetheless, the project achieved significant advancements, including influencing service specifications, eliminating detrimental practices, and enhancing referral pathways and clinical guidelines. A notable strength of this initiative has been its emphasis on collaboration and advocacy.
This infographic is a quick ovrview o the results and outcomes achieved from the year-long project in numbers.
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.
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.
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.
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.
Visit our full range of free literature
- NICE Guideline
- Symptoms
- Management
- Benefits
- Carers
- Diet and Nutrition
- Medication
- Fibromyalgia
- Blood tests explained …and more…
Written by Dr Charles Shepherd, other advisers, and topic experts
Contact the Healthcare 4 ME care team
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