Calls for National Center to Address Chronic Fatigue Syndrome and Revise Harmful Treatment Guidelines

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), remains a significant healthcare challenge in Sweden, with an estimated 40,000 individuals currently affected. The majority of those diagnosed are women, and sufferers often experience persistent fatigue, pain, and a range of debilitating symptoms that can severely impact daily life. Despite the prevalence and severity of the condition, patients frequently encounter inadequate support and limited access to specialized care.

Currently, most individuals with ME/CFS are directed to primary care services, where knowledge and resources to address the complexity of the disease are often insufficient. This situation has highlighted the urgent need for a national center dedicated to ME/CFS, as well as the restoration and expansion of specialist clinics across the country. The limited number of specialized facilities has proven inadequate in meeting the needs of those with more severe symptoms, with recent reductions in such services contributing to increased patient suffering.

ME/CFS is characterized by a significant lack of energy and worsening symptoms following physical or mental exertion, a phenomenon known as post-exertional malaise (PEM). The disease can affect multiple systems in the body, including the nervous and immune systems, and in some cases, internal organs. Recent advances in biomedical research have identified potential biomarkers, offering new insights into the underlying mechanisms of the condition, but comprehensive understanding and effective therapies remain elusive.

There is growing consensus among medical professionals and advocacy groups that a substantial improvement in knowledge and care protocols is needed. In 2022, a parliamentary commitment was made to establish a national knowledge center for ME/CFS, with subsequent government reviews proposing the inclusion of additional diagnoses under the same framework. Despite these developments, progress has been slow, and existing specialist resources are not sufficient to serve the national patient population.

Another area of concern is the guidance currently provided to patients. The Swedish National Board of Health and Welfare issued updated advice in 2024, which has faced criticism for promoting gradual increases in activity levels--a recommendation that many experts believe can exacerbate symptoms and hinder recovery for those with ME/CFS. While a formal review of these guidelines is underway, patients continue to be exposed to advice that may worsen their condition. Immediate action has been called for to suspend these recommendations until more evidence-based protocols are developed.

In addition to clinical care improvements, stakeholders advocate for increased investment in both patient-centered and biomedical research. By adopting a national research strategy and allocating targeted funding, Sweden could accelerate the development of diagnostic tools and effective treatments for ME/CFS.

The ongoing situation underscores the need for systemic changes in how ME/CFS is managed within the Swedish healthcare system. Establishing a national center, expanding specialist services, revising treatment guidelines based on the latest scientific evidence, and supporting robust research initiatives are seen as essential steps to ensure that individuals with ME/CFS receive comprehensive and effective care.