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KCE: how to better support CFS patients?
30.06.2026
Chronic fatigue syndrome: how can we turn the tide for patients?
Myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), is a complex condition with a severe impact on health. Because much remains unknown, treatment often remains a major challenge for healthcare providers. So how can these patients be better supported? The KCE first surveyed the patients themselves. This allowed the researchers to gain a clearer picture of the patients' difficulties and actual needs. Subsequently, using scientific literature and examples from abroad, they examined the crucial factors for effective care organization. Although information is limited, it is clear that a multidisciplinary, personalized, and sufficiently flexible approach is important. This approach must be able to adapt to a wide variety of symptoms and the patient's limitations. At the same time, there is a clear need for greater understanding of and knowledge about the disease, aided by targeted research programs. The expertise of all involved healthcare providers must also be further strengthened.
ME/CFS is characterized by deep, persistent fatigue without a clear cause that does not improve with rest. In addition, patients experience non-restorative sleep, are no longer able to maintain their former activity level, and experience
episodes of worsening symptoms following physical, cognitive, or emotional exertion (post-exertional malaise). The condition is often also accompanied by pain and other general complaints.
Unfortunately, the underlying mechanisms of ME/CFS are still insufficiently understood. This
complicates diagnosis and treatment and leads to a lack of understanding from those around them. The high response rate to the survey with which the KCE aimed to map the needs of patients (no fewer than 749 people participated) is as much a signal of the extent of their problems as the answers themselves.
Assault on the quality of life, on all levels
The survey reveals a
sharp decline in quality of life in a context where even simple daily tasks become a challenge. For instance, 93% of respondents indicate having difficulty with everyday activities. More than 70% struggle with severe mobility problems — sometimes even requiring a wheelchair — and 91% report pain or other forms of discomfort.
The limitations imposed by the disease often create an additional burden. Because patients
must carefully conserve their scarce energy , they are constantly forced to make choices: they must cancel activities they enjoy but that exhaust them, limit social contact, and give up future plans. They often have to drastically adapt their professional, social, and family lives to their limited capabilities. For many of them, it is a frustrating, discouraging, and depressing situation—especially because the reality of their illness is not always acknowledged by their loved ones or even by healthcare providers.
Many treatments, but not always effective
The wide variety of treatments patients undergo is another striking finding from the survey. Energy management, many types of medication, physiotherapy, (neuro)psychological and psychosocial support, relaxation techniques, dietary adjustments, alternative therapies… the impression arises that many embark on a long search with varying results. This is not surprising: strategies to alleviate symptoms or improve functioning are often only partially scientifically substantiated. Moreover, no single approach is equally effective for everyone, highlighting the importance of a tailored approach. Unfortunately, patients also run the risk of resorting to many, often expensive, examinations and treatments that serve no real purpose.
In general, measures to regulate exertion and
manage energy appear to be the most useful. At the same time, they can also limit patients in their activities and social contacts.
Lack of expertise and structure
Many patients who participated in the survey find their
interactions with the healthcare system difficult. They often feel that healthcare providers, due to a lack of knowledge about ME/CFS, minimize their symptoms or attribute them to purely psychological causes. As a result, the diagnosis is often only made after months or even years: more than five years for 39% of the respondents. This clearly points to a need for more expertise and for a clearer and better-structured care pathway.
The Belgian government has been seeking solutions to improve care for ME/CFS patients for quite some time. However, currently there is
only one multidisciplinary reference center active under a RIZIV agreement , and that is located in Flanders. Other institutions operate outside that system, which usually leads to higher costs for the patient. A revision of the system at the national level is therefore urgently needed.
No ready-made solution
How can care for ME/CFS best be organized? There is no simple answer to this. Of the four countries studied by the KCE in this research,
only the United Kingdom currently has a structured and widely accessible care pathway . Both among our European neighbors and in Belgium itself, the uncertainties surrounding the causes of and treatments for ME/CFS make it difficult to develop a coherent strategy. Improving knowledge about the disease is therefore a crucial step to truly advance care. This requires, first and foremost,
an intensification of scientific research .
In the meantime, and in the absence of a ready-made solution, the KCE can already list several key points to guide patients as effectively as possible. For instance, there is a need for a structured, multidisciplinary, and well-coordinated
care pathway , supported by a larger number of specialized
reference centers (particularly in Wallonia). Additionally, it is essential to strengthen
the clinical expertise of all involved actors so that every patient has access to integrated, multidisciplinary care tailored to his or her individual situation.
It is also important to improve the accessibility of information regarding care, help, and support, including procedures for reasonable accommodations at school. This can be done, for example, through a single central platform or website where specialized care providers are clearly listed. In addition, measures for job retention and reintegration into the labor market are also supported. Clear recommendations can help employers implement adjustments that take into account patients' limited energy levels and fluctuating capacities — for example, through adjusted working hours and tasks, telework, or a gradual return to work.
This research was conducted in close collaboration with the patient associations BOFiP, CVS-contactgroep, Millions Missing Belgium, and 12ME.
You can consult the full KCE report 420A "Myalgic encephalomyelitis/chronic fatigue syndrome in Belgium: how to better respond to patient needs?" here.
