ME FORENINGEN

EMEA Member since: 2020

The ME Association Denmark is a politically independent, non-profit organisation founded in 1992. It supports people living with Myalgic Encephalomyelitis (ME) and their families, while working to ensure that ME is recognised as a biomedical and neuroimmune illness, grounded in scientific evidence.

For more than three decades, the association has promoted accurate, research-based knowledge about the causes, diagnosis, and treatment of ME. Through its website, publications, seminars, and outreach, it provides accessible and scientifically documented information to both patients and healthcare professionals.

The organisation is committed to making ME visible in Denmark — and to securing diagnosis and treatment that reflect current biomedical understanding, particularly the central role of Post-Exertional Malaise (PEM).

Focus Areas

• Development of resources for relatives of people with ME
• Patient counselling helpline
• Webinars with ME professionals
• Printed educational materials on PEM, POTS, ICC and related topics
• Collaboration with researchers and an ME Advisory Board of medical doctors
• Long-standing information and advocacy efforts directed at the Danish Health Authority
• Promoting biomedical knowledge of ME within the Danish healthcare system

A central priority is ensuring that ME is diagnosed and treated correctly, with PEM recognised as a mandatory diagnostic criterion.

Working Together at European Level

As a member of the European ME Alliance:

• The Chair participates in monthly EMEA meetings
• Information and updates from EMEA are shared with the Danish community via social media
• The association contributes to strengthening coordinated European advocacy

Key Achievements & Recent Initiatives

In 2025, the ME Association dedicated substantial time and expertise to engaging with the Danish Health Authority during a national knowledge-gathering process on ME initiated by the Minister of Health. This involved detailed written submissions, consultations, and ongoing dialogue to ensure that biomedical evidence and patient perspectives were properly represented.

Other recent initiatives include:

• Expanding from two to five annual ME Update newsletters
• Hosting 3–4 webinars per year with professionals and experts
• Working to establish dedicated support groups for people who are completely bedridden, for relatives, and for young people living with ME

These efforts reflect a strong commitment to both systemic change and direct community support.

Support for Patients & Families

The association provides:

• Patient guides and educational brochures
• Telephone counselling twice weekly
• Online support groups
• Webinars and information sessions

A particular focus is placed on supporting relatives, recognising the vital role families play in the lives of people with ME.

Support for Healthcare Professionals

The association’s new website includes a comprehensive section for healthcare professionals, offering:

• Clinical guidance
• Research updates
• Educational resources
• Continuing education materials

By strengthening professional knowledge, the organisation works to improve the quality of care available to people with ME across Denmark.

Additional Notes

Membership currently around 1000 paying members