KCE Report: ME/CFS Care in Belgium Needs Urgent Reform

Nearly 48,000 Belgians living with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome (ME/CFS), face a healthcare system that fails to understand or adequately treat their condition, according to a comprehensive report published Tuesday by the Belgian Health Care Knowledge Centre (KCE). The report, based on a survey of 749 patients and an extensive review of scientific literature, calls for urgent reforms including new specialized reference centers, increased research funding, and a structured multidisciplinary care pathway.

A Debilitating Condition Largely Misunderstood

ME/CFS is a complex, multi-systemic disease recognized by the World Health Organization. It is characterized by profound, persistent fatigue without apparent cause that does not improve with rest, unrefreshing sleep, and post-exertional malaise — a worsening of symptoms after physical, intellectual, or emotional effort. As the KCE notes, the condition is frequently misunderstood, and patients often report that healthcare professionals minimize their symptoms or attribute them to purely psychological causes.

According to RTBF, the diagnosis is often made only after months or even years. Four out of ten patients surveyed — 39% — waited more than five years before receiving a diagnosis.

Only One Reference Center for 48,000 Patients

Belgium currently has only one active multidisciplinary reference center operating under an INAMI (National Institute for Health and Disability Insurance) convention, located in Flanders. No such center exists in Wallonia, leaving patients in the southern half of the country without access to specialized care. Other structures operate outside the convention, generally at higher cost to patients.

The KCE report recommends opening new specialized reference centers, particularly in Wallonia, to address this geographic imbalance in care.

Devastating Impact on Quality of Life and Employment

The patient survey reveals a stark picture of the condition’s toll. Among respondents:

• 93% have difficulties performing daily activities
• More than 70% experience severe mobility problems, sometimes requiring a wheelchair
• 91% report pain or other forms of discomfort
• 70% stopped working due to their condition
• Approximately 80% stopped working for more than one year at some point during their illness

The economic impact is substantial, with lost productivity and disability benefits representing a significant burden on both patients and the social security system.

International Context and the Long COVID Connection

The KCE examined care models in four countries and found that only the United Kingdom currently has a structured and widely accessible care pathway for ME/CFS. The uncertainty surrounding the causes and treatment of the condition complicates the adoption of a coherent strategy in most countries.

The KCE has previously published reports on long COVID (October 2021), which shares symptom similarities with ME/CFS. The growing recognition of long COVID has brought renewed attention to ME/CFS and its management, potentially opening new avenues for research and care.

Key Recommendations

The KCE report outlines seven key recommendations:

1. Open new specialized reference centers, particularly in Wallonia
2. Establish a structured, multidisciplinary, and well-coordinated care pathway
3. Strengthen clinical expertise among all healthcare professionals involved in ME/CFS care
4. Intensify research into the causes and treatment of ME/CFS
5. Improve accessibility of information on available care and support
6. Develop recommendations for employers to support workplace accommodations
7. Improve access to reasonable school accommodations for young patients

The study was conducted in close collaboration with patient associations BOFiP, CVS-contactgroep, Millions Missing Belgique, and 12ME, reflecting a growing recognition of the importance of patient-centered research.

What’s Next

The KCE report (KCE Reports 420B) represents the most comprehensive assessment of ME/CFS care in Belgium to date. However, implementing its recommendations will require political will and budget allocation from federal and regional authorities. The complexity and heterogeneity of ME/CFS make it difficult to develop standardized treatment protocols, and stigma about the condition persists among some healthcare professionals and the general public.

As the KCE press release states: “Improving knowledge of the disease will be a necessary step to truly revolutionize its management, which above all requires intensifying research.” The question now is whether Belgian policymakers will act on the report’s findings to transform care for the tens of thousands of patients living with this debilitating condition.