“Just Call 116 117”? New Findings Reveal Berlin's Long COVID Care Is Virtually Non-Existent
Berlin, April 28, 2025 – After public claims by the Kassenärztliche Vereinigung Berlin (KV Berlin) that people with Long COVID and ME/CFS should call the 116117 hotline to access care, our latest investigation reveals that this advice is inadequate and dangerously misleading.
Berlin Buyers Club, an activist collective known for advocating for Long COVID and ME/CFS, has compiled over 20 firsthand accounts from patients and caregivers who followed KV Berlin’s advice, shared on March 31, 2025, during a hearing at Berlin’s House of Representatives, and called the 116117 hotline. The result: not a single person received appropriate care through the recommended hotline. Instead, they were left in eternal loops, redirected to unrelated services, and according to patient testimonies, some were advised not to mention Long COVID at all when approaching new doctors to avoid an immediate rejection.
“What we’ve uncovered is truly disturbing,” says a member of Berlin Buyers Club. “A representative for KV Berlin contacted people affected and spoke to them condescendingly and argumentatively. We are disappointed and gravely concerned for our community.”
The information shared with us uncovers a troubling pattern:
- Zero successful referrals to Long COVID (or ME/CFS, Dysautonomia) competent physicians via 116117
- No access to home visits or efforts to make contact accessible for people severely impacted and confined to bed
- No ability to filter for Long COVID expertise through official services
- Staff unaware of the promises made by KV Berlin’s leadership
- Patients gaslit, redirected, or told to ‘try again later’
What affected people and their carers reported:
- A bedbound patient with limited support was told to send family members to plead with clinics in person for an appointment
- People were instructed not to mention Long COVID to increase their chances of being accepted by doctors
- A KV Berlin representative dismissed serious infection control failures, such as nurses ignoring and mocking an immunocompromised patient’s requests to mask, as irrelevant
- Patients whose GPs refused to implement treatment suggestions from Charité’s Fatigue Centrum, were told this was “normal”
Another affected person reported being advised to “be more friendly” when visiting a healthcare clinic. Several were pressured to disclose their doctor’s names so the KV representative could “speak to them”. Meanwhile, the “Long COVID network” operated by KV Berlin, often cited as a solution, remains entirely secret. This network, which is supposed to educate doctors, operates without transparency. Participating doctors’ names are hidden, and no public referral system is available.
These findings have been submitted privately to members of Berlin’s state parliament. A redacted version is available upon request for journalists.
Our demands include:
- A public list of doctors with Long COVID and ME/CFS expertise
- Transparent standards and quality control for training
- An end to forced gatekeeping through uninformed GPs
- Accessible, written pathways to care for severely ill and cognitively impaired patients
- Recognition of Long COVID and ME/CFS as physical diseases requiring biomedical care.