Myalgic Encephalomyelitis (ME) is a serious, long-term complex disease that affects multiple body systems and can greatly reduce a person’s health and quality of life.

According to international estimates, ME affects between 1% and 2% of people, many of whom are likely to be undiagnosed. Both children and adults can be affected by mild, moderate, severe, very severe, or profound forms of ME.

ME has historically been described and named in inconsistent ways. Currently, there is no agreed Irish guideline for diagnosing, treating, or managing ME, and approaches vary worldwide.

In 2025, Ireland’s Health Service Executive (HSE) received funding to create the first HSE National Clinical Guideline for ME.

The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.

The guideline will be informed by international evidence, models of ME care, clinical experts, and people with lived experience of ME.

The guideline will be useful for:

• Health and social care workers in community and hospitals services
• People with ME (of all ages and severity levels) and their families and chosen supports.
• Advocacy groups supporting people living with ME.
• Policymakers planning services and funding.

This website will provide updates on the guideline’s development and share progress reports and resources over time.

HSE Chief Clinical Officer

“Developing this ME clinical guideline is a vital step in ensuring consistent, evidence-informed care for our patients. It reflects our commitment to quality, safety, and clinical excellence.”

HSE National Clinical Director Integrated Care

“This clinical guideline represents a critical opportunity to address the long-standing gaps in care for people living with ME. By listening to the community and grounding our approach in both lived experience and the best available evidence, we aim to deliver care that is compassionate, informed and responsive to needs.”

Department of Health Principal Officer, Population Health Screening, Cardiovascular and Stroke Policy

“Developing a national guideline for Myalgic Encephalomyelitis (ME) will be a significant step forward in supporting those affected by this challenging disease. This process is firmly grounded in evidence, agreed ways of working and, importantly, shaped by the experiences and voices of people living with ME. The dedication of all stakeholders working together reflects our shared commitment to enhancing services and care for individuals with this complex illness.”

HSE National Director Operational Performance & Integration

“The development of the ME clinical guideline is an important step in ensuring accurate diagnosis, safe and effective treatment, and equitable, evidence-based care for people living with this complex and often misunderstood disease. Having patient and service users as genuine partners in this work will, in line with all of the evidence for co-design, lead to more effective, personalised, and respectful service incorporating patients’ and service users’ lived experiences.”

Patient / Service User

“As a patient advocate living with ME, I strongly welcome the development of a national ME Clinical Guideline. It is an essential and long-overdue step forward. For too long, people living with ME have endured inconsistent and inadequate care. This project represents meaningful progress toward accurate diagnosis, safer treatments, as well as empathetic and equitable support. What distinguishes this project is its respectful and inclusive collaboration with people living with ME, including those with Severe ME. By centring lived experience and embracing co-design principles, it offers a path toward care that is truly responsive, compassionate, and effective across health, social care, and policy settings."

Patient / Service User

"As a patient and service user living with ME, I have my own story and have had the privilege of hearing the stories of so many other people. I believe we are now in a very different place than at any time in the past."

This HSE National Clinical Guideline is dependent on your voices being heard at every step of the process as the outcome has to meet your needs and ensure you have access to health and social care services which evidence a comprehensive understanding of ME.

Together, we need to create ways to connect and communicate so that all who wish to use their voices are able to be included in a way which meets their functional capacity.