We are launching a complex online health survey on Long COVID and ME/CFS to collect data on how the abilities of affected individuals, secondary sufferers and professionals develop – or decline – under these particular disease burdens and associated physical, mental, emotional and social stress.
We are particularly interested in the extent to which this affects physical, psychological, and social well-being, health-related quality of life, functional capacity for activities of daily living and social participation, life satisfaction, and activity-related work coping capacity in Long COVID and ME/CFS sufferers.
Complexity management skills, as described in the C2M model (Peyn/Peyn, 2019), play a role in dealing with all types of complex challenges and stress. When interacting with ever-changing environments, high demands on the management of these complex, still insufficiently researched chronic diseases pose additional difficult conditions for affected individuals and those around them. Lack of understanding, experiences of stigmatization and discrimination are further psychosocial burdens and barriers with regard to access to health services and opportunities for work integration.
Complexity management skills are therefore all the more important as resources for coping, prevention and a conducive way of life that need to be strengthened in a targeted manner.
Empirically, the ability to manage complexity more effectively reduces the experience of stress.
It can be stated that this is also perceptible in the context of illness-related limitations, which are accompanied by an increased need for resources and that C2M can thus contribute to a lower psychosocial and health-related stress. This could also have a positive impact on stabilization/better compensation of cognitive impairment, fatigue, and other symptoms that are particularly relevant and limiting to everyday life.
We want to investigate this within the framework of scientifically accompanied projects in different contexts under different questions.
Observations of individual cases in practice indicate that those affected can be helped if they are enabled to make complex contexts tangible in their own way and to set up their own concepts, adapted to personal prerequisites and their capacity. Be it in understanding, reflecting and expressing symptoms and their effects in dealing with sudden and difficult-to-assess physical, cognitive, psychological, sensory or communicative impairments. Or in orienting and shaping new life paths in drastic upheaval and transitional situations and in order to be able to perceive changed needs, limits and requirements more consciously and communicate them more clearly.
Overarching qualitative health and complexity competence characteristics influence whether and to what extent those affected can use stress as an adjustment reaction for themselves without this being associated with significant overload/overstrain and adverse health consequences. The decisive factor is access to the necessary resources in each case and their situationally and contextually appropriate use via functional regulation and management processes in the corresponding scope of action of their learning environment in living and working environments.
In the first subproject, our focus is on C2M complexity management skills in Long COVID and ME/CFS sufferers.
For new patients it is essential not only to have knowledge about these diseases, but also to be able to classify and name problems in different life situations and complex contexts. For themselves and, for example, in medical-therapeutic consultations. This also includes being aware of health hazards due to overload and recognizing warning signs of progressive processes at an early stage.
When cognitive abilities are impaired due to illness, especially with slowed information processing, and when self-regulatory abilities are insufficiently developed, affected individuals benefit from structural guardrails and easily accessible everyday practical tools for kinesthetic, cognitive and linguistic support. Effective symptom-focused self-help, efficient stress, risk, and comorbidity management, and relief from initial cognitive deficits is of immediate importance to individuals and ultimately to prognosis-with the goal of averting chronifying courses.
Therefore, a comprehensive, transdisciplinary view and differentiated primary data collection is needed in this field to derive further questions and investigations: To what extent and for which groups can better life management be realized through C2M. Whether a realistic self-assessment and prospect of successful social and professional reintegration is supported among those affected – and under what boundary conditions. And whether this will result in a better overall medical picture from a systemic perspective on Long COVID and ME/CFS.
The data collection is intended to produce the necessary material to develop a universal, complex online testing, self-awareness and training universe.
This is intended to help sufferers, secondary sufferers, and professionals increase their complexity management skills and provide preventive/accompanying complexity management experiences that can be used in illness or extraordinary stressful situations. This also includes a vocabulary for dimensioning emotional stress spaces in order to be able to more easily self-regulate over them.
In summary, in addition to the medical necessity, we are developing current and future-relevant fields of action of outstanding importance via already implementable possibilities to learn from the COVID-19 pandemic and to give impulses for overall social challenges with the help of the knowledge gained. In inter- and transdisciplinary settings, recommendations will also be derived for better networking of primary, secondary and tertiary prevention in the future.
We are happy to receive donations
Donation Account: FORMWELT gUGIBAN: DE34 2585 0110 0230 6070 61BIC/SWIFT: NOLADE21UEL
Im Anger 18
+49 58 41 97 37 130
Webdesign: Dominik Ortelt