Study on Long COVID and ME/CFS Symptoms in Patients with Mental Disabilities and the Experiences of Patients, Relatives and Carers in the German Healthcare System

Project description

To date, there is no scientific study that deals with the specific Long COVID or ME/CFS symptoms in people with mental disabilities based on reports from sufferers, their close relatives and carers. Individual reports show that cases also occur in people with mental disabilities, but symptoms are usually not recognised by doctors or misdiagnosed. Fore example, there are reports that in these patients only psychotropic drugs were prescribed aiming for immobilisation. Relatives and carers feel left alone in these situations.

The aim of the study is to find out more about the special situation of people with mental disabilities and Long COVID or ME/CFS from those affected or from their relatives and carers in order to (a) for the first time identify the predominant symptoms of Long COVID or ME/CFS in patients with mental disabilities and (b) to be able to formulate recommendations for action based on the reports on the experiences of those affected in the German healthcare system that will lead to better care for Long COVID or ME/CFS patients with mental disabilities.

As part of this survey-based projects, the investigators ask those affected, relatives and carers to contact us in writing to report on the symptoms of the disease (which symptoms occurred when, how long symptoms have existed, under what conditions do individual symptoms occur, how severe are the symptoms) as well as to describe in detail the experiences that patients with Long COVID or ME/CFS with mental disabilities, their relatives or carers have had in connection with the illness in the German healthcare system. In the second part of the survey, the investigators deliberately ask about subjective opinions, motives and attitudes in addition to basic informtaion (e.g. about age, gender, type and degree of mental disability, additional illnesses, type of living). We also need to know whether a medical diagnosis of Long COVID or ME/CFS has already been made. The collected data is finally evaluated quantitatively and subjected to a qualitative content analysis.

The survey is aimed at Long COVID or ME/CFS patients with mental disabilities, close relatives of people with mental disabilities and Long COVID or ME/CFS, and caregivers of people with mental disabilities and Long COVID or ME/CFS.

(Description adapted from project website: see link above)