Berlin: (hib/PK) Physicians and professional associations are calling for targeted help for patients suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specialist care and increased research would be needed, experts said in a hearing by the Health Committee on an application (20/4886) of the Union faction. The experts expressed themselves in the hearing on Wednesday and in written statements.
The motion states that ME/CFS is a serious, multisystem disorder that causes fatigue and post-exertional malaise (PEM). The MPs are calling for immediate financial and structural support for the establishment of the competence centers and interdisciplinary outpatient clinics for ME/CFS mentioned in the coalition agreement.
According to the German Society for ME/CFS, the disease has been “marginalized or misclassified” since it was classified as a neurological condition by the World Health Organization (WHO) in 1969. ME/CFS has been “in the blind spot of the healthcare system” for decades. Investment in ME/CFS research has been neglected for decades.
The Long Covid Germany (LCD) initiative for those affected explained that ME/CFS often leads to a lifelong and high degree of physical disability. A subgroup of patients with post-Covid syndrome meet diagnostic criteria for ME/CFS at six months. Due to the ongoing infections with Sars-Cov-2, an increasing number of ME/CFS diseases in connection with Covid-19 can be assumed. Since ME/CFS can neither be cured nor treated causally, the disease is becoming an increasing cost factor for the health and social system.
The German Hospital Society (DKG) also spoke of a little-known, very serious illness. With a view to the connection between ME/CFS and post/long-Covid, the association noted that the suspicion of two underlying similar postviral infection syndromes with severe multi-system impact is almost inevitable.
According to the National Association of Statutory Health Insurance Physicians (KBV), the diagnosis of ME/CFS is difficult. There are no objective diagnostic tests to confirm the disease. Therefore, a complex, symptom-oriented, differential diagnostic clarification is almost always required, often as a diagnosis of exclusion.
Children and young people are also affected by Long-Covid and ME/CFS. The non-genesenkids parents’ initiative reported a steady increase in inquiries and requests to join. Parents and grandparents turned to the initiative because previously active and sporty children would no longer recover after a corona infection. Many parents are desperate because there is a lack of competent contact points for diagnostics, treatment options and understanding of the situation.
At the hearing, experts made it clear that early diagnosis is crucial to prevent possible further deterioration in patients’ health. Uta Behrends from the Technical University of Munich said that diagnosing children and young people is more complex than that for adults. It must be taken into account that affected children are in education and lose important time in their peer group. (pc)