There is no clear answer yet to the question “What exactly is Long COVID and Post COVID Syndrome?” The health symptoms and complaints are too complex and varied and too little is known to date about what triggers the long-term effects following a SARS-CoV-2 infection. Even the terms “Long COVID” and “Post COVID” are frequently used differently.
Attempts at a definition
According to the guidelines of the German Society of Pneumology (DGP), Long COVID is said to occur when complaints and symptoms persist or recur four weeks after infection. If affected individuals still have symptoms three months after the disease, this is referred to as Post COVID syndrome. Basically, it is still difficult to clearly identify the disease as such, since its symptoms are diverse and difficult to distinguish from other diseases.
Post and Long COVID initiatives and networks
In the Berlin-Brandenburg metropolitan region, many institutions have responded to the increasingly frequent Post COVID cases and offer help in various forms. For example, the BG hospital Unfallkrankenhaus Berlin (ukb) has started a Post COVID program. The program was developed by the BG hospitals as institutions of the statutory accident insurance of Germany which insures employees for injuries or illness incurred through their employment. The program aims at employees who suffer the consequences of a COVID-19 infection due to their work. It includes counseling and diagnostics as well as inpatient rehabilitation and outpatient aftercare. The multifaceted therapy includes training with virtual reality goggles, as well as olfactory training and psychotherapy.
A comprehensive approach is taken by the “Post COVID Network” of Charité University Medical Center Berlin. Various specialized outpatient clinics of Charité have joined forces in the network, among others, the Charité centers for Fatigue, Cardiology and Pain as well as Palliative Medicine. The network provides information for physicians and patients and organizes training courses for physicians and other medical personnel. The goal is to ensure that Long and Post COVID are correctly diagnosed and that those affected receive appropriate therapy in a targeted manner. Charité explains at its website: “Patients with Post COVID syndrome have a variety of symptoms and individual needs, which require varying degrees of diagnostic clarification and treatment,”
The Association of Satutory Health Insurance Physicians Berlin (KV Berlin) has also established a network for diagnosis and treatment of Long COVID, which cooperates with the Post Covid Network of Charité. The “Long COVID Network” is aimed above all at experts and medical specialists across all disciplines. Among other things, a directory is being set up – 70 practices are already connected. In the protected member area, physicians can share their experiences. In addition, KV Berlin organizes regular online meetings on the current state of knowledge on Long COVID. The meetings have different foci such as Long COVID from a pneumological perspective.
“DiReNa“ – online contact point from Brandenburg
In Brandenburg, on the other hand, the Long COVID network “DiReNa” was founded in April under the auspices of the State Ministry of Health. The acronym “DiReNa” stands for Diagnostics, Rehabilitation and Aftercare. “DiReNa” is aimed both at people suffering from Post COVID as well as at actors in the healthcare system. As a cross-sector internet platform, the network provides information about the specialist medical services in the state of Brandenburg, including the two university outpatient clinics of the Brandenburg Medical School and the Treuenbrietzen site as a focus outpatient clinic.
The platform is linked with the “Rehaland-Brandenburg”, a platform of all Brandenburg rehabilitation clinics that have developed a specialized therapy for Long/Post COVID patients. In addition, various therapeutic areas are presented under the bullet point of aftercare. An essential aspect is the networking with self-help groups in the state as well as throughout Germany, which are also present on this platform. Close cooperation with the Post-COVID Network of Charité is an integral part of “DiReNa.”
Activities of the Healthcare Cluster Berlin-Brandenburg – HealthCapital
The Healthcare Cluster Berlin-Brandenburg – HealthCapital invited experts from the German Capital region for an exchange on Post and Long COVID in January 2022. The Experts discussed which issues urgently need to be addressed to ensure optimal care for Post and Long COVID patients in the Berlin-Brandenburg region. As a result, three working groups were established.
- Working group 1: Organization of training courses on Long and Post COVID for various professional groups in Berlin-Brandenburg
- Working group 2: Creation of structures and resources for the diagnosis and treatment of Long and Post COVID
- Working group 3: Rehabilitation and aftercare for Post COVID.
Results from these working groups formed the basis for this year’s Innovative Care Future Workshop of the Healthcare Cluster Berlin-Brandenburg. Under the heading The topic “Care for patients with Long and Post COVID in Berlin-Brandenburg” was discussed in presentations and working groups, in order to elaborate theses on necessary improvements in care for the region. The results of the workshop were handed over to the healthcare administrations of Berlin and Brandenburg and were published on the Cluster’s website.
“We have many patients who are severely limited in their capability and participation in social and professional life due to Post COVID. As a rule, those affected are young. They want to work and have an active life but are unable to do so because of the disease,” says Dr. Gesine Dörr, Chief Physician at the hospital Alexianer St. Josefs-Krankenhaus Potsdam-Sanssouci. She presented the results from the aforementioned working groups at the Future Workshop and chaired the afternoon working group on “Training on Long and Post COVID for healthcare professionals.” “Until now, there are no findings on specific therapies for Long/Post COVID. Therefore, there is an urgent need to promote research and studies on the disease and to link this research, in order to ensure the transfer of knowledge. As the first contact for those affected, family doctors in particular need training courses that they can easily integrate in their everyday work, they need decision aids to be able to classify patients with their often diffuse symptoms and to initiate the necessary diagnostic steps and therapeutic options according to the current state of knowledge,” says Dörr.
Many participants of the future workshop contributed their experiences from direct patient care as well as from their personal involvement in the networks described above. They all pointed out limits they repeatedly encounter. Most of them are financial or structural problems. Many ideas for possible solutions were discussed – from increased use of technical solutions such as telemedicine and artificial intelligence (AI) to even closer inter-professional and cross-sector networking as well as adapting existing rehabilitation programs to the special needs of Post COVID patients with fatigue syndrome.
The experts were convinced that Long/Post COVID remains a problem, which is likely to increase in the coming years. The Cluster Healthcare Berlin-Brandenburg – HealthCapital will further support the actors in Berlin-Brandenburg in their efforts to improve and innovate care for these patients.