Release of the Off-Label list for people with Long Covid and pre-pandemic ME/CFS (Myalgic Encephalomyelitis). What is ME/CFS?

While we believe further adequate research is necessary due to decades of neglect, patients shouldn’t be forced to cover the costs of partial symptomatic relief themselves. The Off-Label List was proposed during the first Long Covid Round Table in September 2023 to identify medications that, while not officially approved for treating Long Covid and ME/CFS, could still be prescribed and covered by insurance based on emerging evidence of their effectiveness. Despite the urgent need, patients have been left to cover the costs of partial symptomatic relief themselves. We demand the immediate release of this list for people with Long Covid and pre-pandemic ME/CFS to alleviate the financial burden on those suffering from these conditions.

End to forced “Reha” for people with PEM.

The "Reha vor Rente" law in Germany mandates rehabilitation before granting disability pensions. However, for people with Long Covid and ME/CFS who suffer from Post-Exertional Malaise (PEM), this approach is profoundly harmful and counterproductive. German health insurance companies require people who receive long-term sick leave payments (“Krankengeld”) to undergo rehabilitation to be made fit for work again. Even when people are too ill to go to rehab, or it’s unsuitable (as is the case for people with PEM), health insurance companies can be very demanding and have even threatened to withdraw payments if they do not apply to and attend Rehab.

PEM causes worsening symptoms after even minor physical or mental exertion, making traditional rehabilitation not only ineffective, but dangerous.

Additionally, due to a lack of infection mitigation, rehabilitation facilities increase the risk of reinfection, further deteriorating patients' health. With data showing that most people with Long Covid worsen with reinfections, it's clear this system needs urgent reform.

Reinstatement of the Berlin senate’s broken promise for Long Covid & ME competency centres.

The Berlin Senate promised to establish specialised competency centres for Long Covid and ME/CFS to provide necessary, integrated care. These centres were meant to address the unique needs of these patients, but the promise has not been fulfilled. This failure leaves patients without specialised care, perpetuating inadequate treatment and neglect. We demand the immediate establishment of these competency centres to ensure patients receive the comprehensive care they deserve.

FFP2 (or equivalent) masks in healthcare.

At minimum, when healthcare staff interact with Long Covid and ME/CFS patients, their families, and other immunocompromised people, particularly when requested by patients. Many people with Long Covid & ME/CFS live incredibly isolated lives due to their energy limitations and their need to protect themselves from further infection in an ongoing pandemic. Forcing patients to expose themselves to extra risk during healthcare appointments is harmful, irresponsible and unacceptable. We demand masks back in healthcare immediately; their removal is a regression of public health policy.

Adequate long-term research funding secured for Long Covid & ME/CFS.

Research urgently needs to catch up to the disease burden; with the pandemic ongoing and the continued evolution of SARS-CoV-2, this crisis won’t end. We need long-term research to study the long-term impact of pathogens so the lives of millions of people can be improved.

Establishment of support structures for people with severe ME/CFS.

Globally, healthcare systems have not been structured to consider the specific needs of people with severe ME/CFS; this is another legacy of neglect. The most sick people need urgent assistance and support, and structures must be set up to help the most vulnerable patients.

Research for COVID-19 (SARS-CoV-2) preventatives.

Current vaccines do not adequately prevent Long Covid or infection. We need fast-tracked, expanded programs to develop next-generation vaccines and other preventatives. The ongoing risk of SARS-CoV-2 reinfections is a public health disaster.

Public indoor clean air standards and laws.

Clean air should be a fundamental right, just like clean water. We demand laws regulating air purification, ventilation, and far-UV technology to ensure safe indoor air quality.

High-risk status and Paxlovid access for people with Long Covid & ME/CFS.

Reinfections worsen outcomes for people with Long Covid and ME/CFS, many of whom have impaired immune systems. We demand recognition of this population as high-risk as well as guaranteed access to Paxlovid.

Approval of Xocova in the EU.

Xocova, an antiviral treatment, has shown promise in reducing symptoms and viral load in COVID-19 patients. We demand its approval in the EU to provide additional treatment options.

Protected right to remote work.

With the ongoing threat of reinfection, the right to work remotely must be protected for those who wish to safeguard their health.

Transparency concerning the magnitude of the problem.

Failure to assign the correct ICD codes (U 09.9 or U 10.9 for Long Covid; G 93.3 for ME/CFS) and frequent misdiagnosis of psychosomatic conditions hide the accurate scale of the problem. We demand the systematic recording of cases and proper allocation of ICD codes to ensure patients receive the necessary care.

Improved education for healthcare providers

Mandatory training for healthcare providers on the latest research and treatment guidelines for Long Covid and ME/CFS.

Global coordination of research and treatment

Global coordination between governments to share research, treatment protocols, and resources for Long Covid and ME/CFS.