Report says care for ME and related illnesses falls short

A report by a working group appointed by Iceland’s Directorate of Health says services for people with ME, long COVID-19, environmental illness, POTS and related conditions do not match the severity of their illnesses. The report, covered by mbl.is, calls for expanded healthcare and services at the Akureyri Clinic, as well as more training for health workers.

The group also recommends defining ME as a serious chronic neurological disease. It says patients often struggle to access care, and that their symptoms can be dismissed as psychological, leaving them without appropriate treatment.

Friðbjörn Sigurðsson, a doctor at the Akureyri Clinic and a member of the working group, said the burden of illness among people with ME was greater than that of most people with other serious diseases, citing research from abroad. A former oncologist, he said some of his patients with cancer had been healthier from one day to the next than many of the patients he treats now.

Sigurðsson said the wait for a first appointment at the clinic was about eight months, and that staff had not been able to provide follow-up care as thoroughly as they wanted. He added that these illnesses carry a high cost for patients, their families and society because many people leave work or school.

The report says rehabilitation and research are important. For people with ME or long COVID, rehabilitation based on substantial physical activity can have the opposite of the intended effect. Instead, activity management has been most effective in keeping symptoms stable and improving quality of life. It involves managing energy use, avoiding symptom flare-ups after exertion, identifying personal limits and spreading activities throughout the day.

The working group says these chronic conditions have been under-researched. It proposes establishing a research centre on the long-term effects of infections and other environmental factors, in cooperation with the University of Iceland, Landspítali hospital and the Akureyri Clinic. The report says Iceland could play an important role in research and treatment in this field if the work is developed systematically.

Patient associations have welcomed the report’s findings. Sigurðsson said their involvement in shaping policy was notable because it was the first time patient groups had taken an active part in the process, following a model from the United Kingdom.

An open international conference, “A Bridge Between Continents,” is scheduled for Thursday at the Reykjavík Hilton, with leading Icelandic and international experts in ME.