Part 1: Why ME/CFS and Long COVID Activism in Germany Has Been Relatively Successful
For Patients, This Was Nothing New.
When Long COVID began to receive broader public attention in 2020, it was widely framed as a new and unprecedented condition. For many patients, however, it was anything but new. In Germany, patient advocates, ME/CFS activists, and leading researchers quickly recognized familiar patterns that had existed for decades.
Symptoms such as post-exertional malaise (PEM), cognitive dysfunction, autonomic disturbances, and orthostatic intolerance were already well known to people living with ME/CFS, POTS, and other post-acute infectious syndromes. Long COVID was therefore not understood by patients as a fundamentally new disease, but rather as another trigger leading to the same or very similar chronic conditions. Early on, it was placed within the broader framework of infection associated chronic conditions (IACCs) or post-acute infectious syndromes (PAIS).
This perspective was not formed in hindsight. Already in April 2020, when COVID-19 was still largely discussed as an acute respiratory illness and before most physicians or policymakers had the issue on their radar, people with lived experience were sounding the alarm. Daniel Loy, who had been living with ME/CFS long before the pandemic, publicly warned of an impending wave of new ME/CFS cases following SARS-CoV-2 infections. At a time when long-term consequences were barely acknowledged, patients were already connecting the dots based on decades of neglected post-infectious disease history.
This patient-led framing proved to be crucial. Because Long COVID was not perceived as something entirely separate or novel, there was no widespread competition for attention or legitimacy between patient groups. Instead of rivalry, there was recognition: regardless of whether someone carried a diagnosis of Long COVID or ME/CFS, the challenges were largely the same lack of medical recognition, inadequate care, insufficient research, and gaps in social and disability support.
As a result, many people with Long COVID who developed ME/CFS-like symptoms joined existing ME/CFS organizations. At the same time, new initiatives such as NichtGenesen were founded with an explicitly inclusive approach, welcoming all people affected by post-infectious illness. This allowed newly ill patients to connect quickly with established knowledge, advocacy experience, and support structures rather than starting from scratch.
This early solidarity strengthened the movement as a whole. Patients understood that the specific infection triggering their illness was less important than the shared systemic failures they were facing. By organizing together, people affected by post-acute infectious syndromes were able to amplify their voices, support one another, and work collectively toward improving care and recognition.
One of the reasons for the relative success of ME/CFS and Long COVID activism in Germany lies in this approach: For most patients, Long COVID was not treated as something entirely new, but rather as confirmation of a long ignored problem and as an opportunity to finally address it together.
Note: While infections are a major and well-documented trigger for ME/CFS and related conditions, they are not the only ones. ME/CFS can also be triggered by other events such as physical trauma, surgery, or other severe physiological stressors. Ensuring that these non-infectious triggers are not overlooked or deprioritized remains an ongoing challenge in research, clinical care, and advocacy. A comprehensive understanding of ME/CFS must include all patients, regardless of how their illness was triggered.
Part 1: Why ME/CFS and Long COVID Activism in Germany Has Been Relatively Successful
Part 2: Why ME/CFS and Long COVID Activism in Germany Has Been Relatively Successful