GaPaMUC-CFS

Project description

The GaPaMUC-CFS study is centred around th evaluation of an innovative, interdisciplinary, multimodal, intersectoral treatment concept for adolescents and young adults with chronic pain in the context of ME/CFS.

ME/CFS is a complex, poorly understood chronic disease. In childhood and adolescence, ME/CFS is usually preceded by an acute infection, predominantly with Epstein-Barr-Virus (EBV). Similar symptoms are currently being observed as a result of an SARS-CoV-2 infection. In addition to the cardinal symptom of chronic fatigue and persistent deterioration of overall functional condition after physical and psychological stress lasting at least 14 hours, known as post-exertional malaise (PEM), those affected often suffer from multi-locular pain to generalized pain, which have so far not been studies in a differentiated manner. The study GaPaMUC-CFS evaluates as an explorerative cohort study clinical routine data from an inpatient therapy program. The study aims to comprehensively characterize the cohort over time. For this joint-cooperation project, small groups of patients at the MRI Chronic Fatigue Center (MCFC) have been carefully pre-diagnosed and recruited for a four to five-week stay at the Center for Pain Therapy for Young People in Garmisch-Partenkirchen, since 2019. The specially developed interdisciplinary therapy concept takes advantage of the team's expertise and is further developed in close collaboration. At the start of the project, there was no inpatient concept in German-speaking countries that was adequately adapted to the needs of affected children and young people.

Various questionnaires and functional tests were used two weeks before the start of the project, weekly immediately after the stay, and three and six months after the end of the project, in order to best characterize a first pilot cohort (n = 27, female = 25, male = 2) and the course of treatment. Important pillars of the concept are the flexible adaptation of application and therapy density to the current energy level of those affected in order to best prevent overload and the development of PEM, the possibility of being able to complete an interdisciplinary treatment offer by staff trained in ME/CFS, and without potentially strenuous journeys to treatment sites. Additional pillars include recognizing the forms of therapy that are individually perceived as useful for future integration into one's own everyday life and the peer-group effect through contact with other affected people. After caring for the first cohorts, there is increasing consensus among the treating medical staff about the importance of selecting suitable inpatient therapy concepts for those affected, depending on patients' maximum exertion tolerance. Overall, the study teams expects this project to provide information on which ME/CFS sufferers can best benefit from the innovative, stationary concept evaluated, recognizing once again the urgent need for outpatient care options for very severely and severely affected patients.

(Description adapted from project website: see link above)