Half a million people with Long COVID are waiting for help – Zurich should take the lead
Chronic fatigue, pain, and debilitating exhaustion after minimal exertion are hallmarks of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a severe illness that can drastically alter the lives of those affected. Tasks like working, socializing, or even reading a book become overwhelming challenges. Though often triggered by viral infections such as the flu or COVID-19, the incidence of ME/CFS in Switzerland has doubled since the onset of the COVID-19 pandemic. Currently, it is estimated that over 60,000 people in Switzerland suffer from ME/CFS, while around 450,000 individuals live with Long COVID. The majority of those affected, around 70%, are women.
Lack of Diagnosis and Treatment
Despite its widespread impact, ME/CFS remains poorly understood, with no definitive test for diagnosis and no cure. Treatments primarily focus on symptom management. The disease is not even included in medical school curricula, leaving many healthcare providers unfamiliar with it. As a result, many patients face dismissive attitudes, often being told their illness is merely "psychological," further exacerbating their suffering.
Renata Grünenfelder, a nursing expert and member of the Zürich Cantonal Council, has witnessed firsthand the frustration and desperation of families whose loved ones suffer from ME/CFS or Long COVID. She recalls multiple instances where relatives brought their sick family members to the emergency room at the University Hospital Zurich, feeling helpless as their conditions worsened and they received little support.
Political Action for Coordinated Care
In response to these challenges, Grünenfelder and other members of the Zürich Cantonal Council from parties including AL, EVP, the Greens, and GLP have introduced a motion calling for a coordinated care system for ME/CFS and Long COVID patients in the canton. This initiative seeks to create a regional strategy to address the needs of those affected, rather than waiting for the national plan, which is still in development. The federal government has recently approved the creation of a national strategy, which is expected to be drafted by 2027, but Grünenfelder argues that Zürich should lead the way and take action now.
Proposal for Specialized Mobile Teams
One key proposal in the motion is the establishment of mobile, specialized teams that would provide support to patients in their homes across the canton. These teams would offer both medical care and assistance with navigating bureaucratic challenges related to insurance and other administrative matters. Grünenfelder emphasizes that this approach would not only improve patients' quality of life but also reduce long-term costs by preventing unnecessary social welfare claims.
Need for Awareness and Training
Nicole Spillmann, president of the ME/CFS Switzerland Association, emphasizes the importance of an awareness campaign about the disease. She points out that even healthcare professionals often struggle to recognize and manage the complex and diffuse symptoms of ME/CFS and Long COVID. Spillmann advocates for specific training for medical professionals, social insurance bodies, and the general public, as well as better coordination between different sectors involved in patient care. The goal is to stabilize patients and prevent long-term disability, which ultimately reduces overall costs.
Economic Impact
The economic burden of ME/CFS and Long COVID is already significant in countries like Germany, where over 1.5 million people are affected. Research there has estimated that the cost of these conditions will exceed 63 billion euros in 2024 alone, with total costs for the period from 2020 to 2024 reaching approximately 254 billion euros. Grünenfelder argues that investing in specialized care not only alleviates suffering but also provides long-term economic benefits by reducing the need for social welfare support.
Political Divisions in Zürich
The motion is set to be debated in the Zürich Cantonal Council, and the outcome is uncertain. While parties on the left, including the SP, AL, Greens, GLP, and EVP, have pledged support, the right-wing SVP, FDP, and Centre parties have opposed the motion. This creates a political divide in the council, with the left-wing bloc holding a slight advantage. If the motion is approved, the Zürich government would have two years to produce a report and a proposal for action, by which time the national strategy will likely have already been developed.
Grünenfelder stresses the importance of Zürich addressing the issue now, so that the canton can act swiftly when the national plan is ready.
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