The ME Society of Iceland

The ME Society of Iceland is a non-profit organisation working to protect the interests of people living with Myalgic Encephalomyelitis (ME) and to represent them toward public authorities, as well as national and international partners. It provides patients and families with a trusted platform for connection, mutual support, and practical assistance.

The association grew out of online discussions among patients who compared their experiences and recognised a shared problem: existing treatments — often designed for chronic fatigue or fibromyalgia — were ineffective and, in some cases, harmful. This highlighted an urgent need for better understanding, accurate resources, and formal recognition of ME.

From the outset, the organisation has worked to raise awareness of ME as a distinct biomedical disease and to move away from the misleading and minimising term Chronic Fatigue Syndrome (CFS).

Focus Areas

A core focus of the ME Society of Iceland is close collaboration with the Akureyri Clinic, which serves as a national treatment and service centre for people with ME and Long Covid. The organisation maintains ongoing dialogue with the clinic, healthcare professionals, and public institutions to help improve care pathways and patient experiences.

More broadly, its work centres on:

• Advocacy for accurate diagnosis and appropriate care
• Preventing harmful or unsuitable treatments
• Improving understanding of ME among healthcare professionals, educators, and authorities
• Supporting children, young people, and families affected by ME

Working Together at European Level

The ME Society of Iceland collaborates closely with the European ME Alliance by:

• Participating in shared advocacy efforts
• Exchanging research updates and best practices
• Contributing to joint European initiatives to improve awareness, policy responses, and patient representation

Through this cooperation, Icelandic perspectives are integrated into wider European action.

Key Achievements & Recent Initiatives

Over the years, the association has actively engaged with Icelandic health authorities on critical issues, including cases where children received incorrect diagnoses and ME or Long Covid patients were exposed to inappropriate or harmful treatment approaches.

Notable initiatives include:

• Supporting the establishment of UngME, a dedicated group for children and young people with ME and their families
• Active alignment with major national healthcare developments, including the opening of the Akureyri Clinic
• Hosting public talks, educational events, and expert lectures for members and the wider community

On 12 May 2025, International ME Awareness Day, the association launched its new website, strengthening its ability to share reliable information and connect with the public.

Support for Patients & Families

The ME Society of Iceland offers a wide range of practical resources, including:

• A helpline
• Online support groups
• Patient guidelines
• Healthcare provider guidelines
• Pacing guidelines
• Guidance for schools supporting students with ME

These resources aim to support daily life, education, and interactions with healthcare and social systems.

Support for Healthcare Professionals

To improve professional knowledge and standards of care, the association provides:

• Educational materials on ME
• Icelandic translations of key international resources, including NICE and Mayo Clinic guidelines
• The book Classic Pacing: For a Better Life with ME

By making high-quality information accessible in Icelandic, the organisation supports more informed and safer clinical practice.