Study: Emotional Patient Survey on ME/CFS
This webpage provides only a brief overview of the study. Detailed information about the study is available at the beginning of the questionnaire:
Study: Emotional Patient Experiences in ME/CFS
What is the study about?
This study explores how people with ME/CFS or ME/CFS-like symptoms experience having their illness, their symptoms, their emotions, or they themselves doubted, misunderstood, devalued, or not taken seriously.
It is based on the conviction that patients' emotional experiences deserve greater attention not only in medicine, but also in philosophy, ethics, and society.
We are particularly interested in how certain social and medical responses affect patients' emotional lives, their sense of self, their trust in others, and the way they navigate medical, social, or institutional situations.
We also seek to understand whether such responses may further intensify their suffering.
Who can participate?
You are eligible to participate if you are at least 18 years old, are able to complete the questionnaire in German, and meet one of the following criteria:
- I have received a medical diagnosis of ME/CFS.
- I clearly experience ME/CFS-like symptoms but have not yet received a formal diagnosis.
What does participation involve?
We are interested in what you can tell us about your experiences as a patient with ME/CFS.
However, because ME/CFS is associated with fluctuating energy levels, cognitive exhaustion, and post-exertional malaise (PEM), we decided against conducting lengthy, pre-scheduled interviews.
Instead, we invite you to complete an online questionnaire in which you can describe your experiences in your own words.
You may answer the questions at your own pace, take breaks whenever needed, and spread your responses across as many sessions as you wish until you are satisfied with your answers.
You decide which questions you answer and how much you would like to write. Participation is entirely voluntary, and you may withdraw at any time.
Who are we?
Prof. Dr. Sven Walter
I am a philosopher, and in recent years my research has increasingly focused on philosophical questions concerning oppression, marginalization, and injustice—including how people can be socially harmed, devalued, or not taken seriously not only in relation to their knowledge and being understood, but also in their emotional lives.
My interest in ME/CFS is not purely academic.
Because the illness also affects people in my close personal environment, I am aware of how profound experiences of not being taken seriously, being questioned, and being devalued can be.
At the same time, the focus of this study is not on my own theoretical assumptions, but on the experiences of those who are affected.
What happens next?
If you would like to participate in the study, you can access the questionnaire here:
Study: Emotional Patient Experiences in ME/CFS
www.uni-osnabrueck.de
