The knowledge of healthcare professionals on the treatment and rehabilitation of chronic fatigue syndrome (ME/CFS) and long covid needs to be increased
Recognizing the symptoms of ME/CFS and long covid and investigating the causes are often lacking, which has led to underdiagnosis, inadequate care, and a poorer prognosis. In addition to the treatment is often negatively affected by the stigma faced by patients, writes over 60 social and healthcare professionals in their perspective article.
Efforts must be made to develop the treatment and rehabilitation of patients with chronic fatigue syndrome (ME/CFS) and long covid, the training of healthcare professionals and the implementation of treatment recommendations.
Chronic fatigue syndrome (ME/CFS) and long-lasting covid-19 (long covid) are long-term physical diseases that significantly impair functional and work capacity and quality of life, affecting several organs and organ systems (1–16).
According to current research data, the pathophysiology of ME/CFS and long covid includes disturbances in the regulation of the immune system, cardiovascular and neurological problems, as well as gastrointestinal, metabolic and mitochondrial dysfunctions (7, 9–12).
The symptoms of ME/CFS and long covid are remarkably similar, and some people with long covid meet the diagnostic criteria for ME/CFS (3, 7, 8, 11–13). The disease picture is diverse and the set of symptoms and the severity of the disease vary individually.
The occurrence of phases of improvement and exacerbation is common. Disadvantages of functional capacity vary depending on which parts of the body the disease affects and how serious the dysfunctions caused by it are. (3,4,7,8,10-12)
The most important symptom of ME/CFS and long covid is PEM/PESE (post-exertional malaise/post-exertional symptom exacerbation), i.e. a significant worsening of symptoms and impairment of functioning even after little physical, cognitive, social or emotional activity. The PEM/PESE symptom occurs in all ME/CFS and the vast majority of long covid patients. (1, 3–8, 17, 19–21) PEM/PESE cannot be explained by deconditioning, i.e. poor physical condition due to inactivity (11, 23, 24).
Pacing is the main recommended method
Numerous recommendations have been published for the treatment of ME/CFS and long covid, which are consistent in content and based on up-to-date scientific evidence. The recommendations emphasize the importance of a long-term treatment relationship and patient-centered, individual and symptomatic treatment, as well as the fact that the treatment must not cause harm (18, 17–22).
With the help of multiprofessional treatment and rehabilitation, functional capacity can be supported and symptoms alleviated, although curative treatment is currently unknown (1, 3–7, 17, 19–21). Due to the consistency of the disease picture, it is recommended to use the methods recommended for the treatment of ME/CFS in the treatment of people with long covid (5, 7, 19). PEM/PESE is the most important symptom to consider in treatment and rehabilitation. The most recommended method is pacing, i.e. the rhythm of activity and rest adapted to the symptoms. The goal of pacing is to avoid or minimize the occurrence of PEM/PESE symptoms, to support symptom control and the experience of standing, and to optimize functional capacity (1, 3–7, 17, 19–21).
Methods based on deconditioning or avoidance behavior are not recommended
Key treatment recommendations do not recommend methods based on theories that patients' symptoms are caused by deconditioning, harmful beliefs, avoidance behavior, or fear of post-activity symptoms (1, 3, 4, 17, 21, 22).
A gradual increase in exercise using the GET method (graded exercise therapy) or other ascending methods is not recommended for patients with PEM/PESE symptoms, but the importance of minimizing the PEM/PESE symptom by means of pacing adapted to the symptoms is emphasized.
Moderate uphill training may be suitable for patients without PEM/PESE symptoms (1–7, 17, 19–22).
The recommendations emphasize that the psychosocial interventions offered to this group of patients do not assume that harmful thoughts or behaviors are the underlying cause of these illnesses. Instead, it is recognized that thoughts, feelings, behavior and physiological factors interact with each other (3, 17).
Cognitive behavioral therapy (CBT) or other methods should not be offered as curative treatment, but to support adaptation to the illness (1–5, 17, 19–22).
Psychological support must be available, as being seriously ill is often mentally taxing (1–5, 7, 17–21).
Investment should be made in the implementation of treatment recommendations and training
Research has progressed significantly in recent years, but healthcare professionals' knowledge of these diseases is still insufficient (1, 7, 12, 21, 26). Recognizing the symptoms and finding out their causes are often insufficient, which has led to underdiagnosis, insufficient treatment and a worse prognosis (1, 10, 11, 13, 21, 26). In addition, treatment is often negatively affected by the stigma faced by patients (8, 15, 17, 21, 26).
Efforts must be made to develop the treatment and rehabilitation of patients with ME/CFS and long covid, the training of healthcare professionals and the implementation of treatment recommendations. Research funding must be increased and international cooperation and patient participation must be promoted. Eliminating the stigma is important, and it should be ensured that patients receive treatment according to the recommendations. These diseases should be taken seriously in all social and healthcare sectors (4, 12, 16, 17).
