Berlin Buyers Club Organizes Second Demonstration for Long Covid and MECFS Care: 40 Attend Open-Mic Protest Outside Bundestag

Berlin, [14.09.2024]—Today, the art collective Berlin Buyers Club, in collaboration with a group of Long Covid long haulers, held their second demonstration near the Bundestag, calling for urgent action in response to the Berlin Senate’s failure to deliver on its promises to those suffering from Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS).

In early 2023, the CDU and SPD coalition for the state of Berlin made a significant pledge to establish specialized, easily accessible, interdisciplinary support centers for people affected by these conditions. Now it has become evident that this promise will not be fulfilled. The coalition has walked back its commitment, on the assumption that the current healthcare provisions in Berlin are adequate—an assertion that today’s protest challenged directly.

The open-mic demonstration, which drew a crowd of 40 people and attracted the attention of several passers-by, provided a platform for participants and remote contributors to share their stories and highlight the urgent need for systemic change. Some attendees stood, others sat on the ground or in wheelchairs, all wearing high-quality respirator masks due to the high circulation of the virus. A bold black banner with white writing proclaimed the message directed at the Bundestag across the street: “You decide on life and death! Long Covid and MECFS care NOW!”

The demands of the protesters are clear:

1. The reinstatement of the Berlin Senate’s broken promise to establish competency centres for Long Covid and MECFS.

2. The release of the off-label list for treatments to support people living with Long Covid and MECFS.

3. An end to forced rehabilitation programmes for individuals suffering from Post-Exertional Malaise (PEM), a hallmark symptom of both conditions.

Participants shared harrowing yet tragically familiar stories of neglect, medical gaslighting, and mistreatment. One protester expressed their frustration with the system: “I feel I’m part of a medieval role play, I feel I have to keep proving how sick I am, and I have lost all faith in the healthcare system.” Another attendee emphasised the damaging effects of rehabilitation programmes, saying: “The Reha did nothing for me except worsen my condition.”

Others pointed to the lack of up-to-date expertise within current Long Covid clinics: “I was advised to undergo activation rehab. It is untenable how little even Long Covid outpatient clinics know about the disease and don’t keep up with the latest research findings,” said one participant. Another shared the mental anguish of living with the illness: “Your own iron will to live becomes your personal torture master.”

Organisers had invited Berlin’s health senator, who played a central role in the coalition’s broken promise, to attend and listen to these personal accounts. Despite her absence, the organisers remain resolute in their mission. “This is a movement that grows naturally because the number of affected people only grows due to the unmitigated spread of the virus,” said one of the organisers. They reaffirmed their commitment to fighting for specialised medical care and support for the growing number of Long Covid and ME/CFS sufferers.

Berlin Buyers Club and the Long Covid community vow to continue their activism until proper care and resources are established to meet the needs of those affected.