According to those affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), patient care remains inadequate, even with the initial availability of drugs used outside their approved indications (off-label use).
A spokesperson for the Long Covid Deutschland patient initiative told the “Rheinische Post” that the medications mentioned in the off-label list are not widely used. While patients who gain access to these drugs report that the benefits are limited, many eventually discontinue their use due to the high burden of side effects.
The spokesperson added that while these medications are “immensely important,” substantial and lasting improvements can only be achieved through targeted research. Many patients rely on these drugs to stabilize or, ideally, improve their health condition, but current scientific knowledge does not allow doctors to reliably predict which medication will be effective for a specific person or which will cause worsening side effects.
Adding to the pressure, German Bundestag member Stella Merendino pressured the government to increase its commitment to medical research. Merendino criticized the government’s stance, which frequently points to a lack of scientific evidence. She argued that instead of pushing forward necessary clinical trials and creating pathways for cost coverage, the government is letting sufferers wait, adding that a lack of evidence should not be a “free pass for political inaction.”
ME/CFS is a severe neuroimmunological illness. Many sufferers resist the frequently used synonyms, “Chronic Fatigue Syndrome” and “Chronic Tiredness Syndrome,” because they feel these terms are dismissive. Across Germany, several hundred thousand people are estimated to be affected. The disease typically involves severe impairments and a high degree of disability, frequently leading to early death. Despite the fact that the cumulative number of impaired and lost life years due to the illness is higher than for most other diseases, the funding allocated for drug research remains low.
