Table 2.
Illustrative quotations from qualitative data collected from participants regarding their diagnosis, and their feelings toward the provided medical care and prescribed therapies.
| Disease diagnostic | Patient's feelings toward provided medical care | Reported therapies |
|---|---|---|
| “The psychiatrist was the only one who knew ME/CFS.” (Female, 55, BE) | “I gave up going to doctors. I am so angry and frustrated. They have to learn to see patients as collaborators and not enemies.” (Female, 47, ZH) | “Before my disease, I have always been a big sportsman, so GET was attractive to me when prescribed. However, it worsened all my symptoms.” (Male, 53, BE) |
| “All doctors said I had depression, but the psychiatrist said I had no depression and that it was somatic.” (Female, 41, GR) | “If I had money, I would go abroad to a good doctor.” (Female, 59, LU) | “One of the first diagnoses was burn-out; doctors asked me then to do a lot of sports, which worsened my symptoms terribly. Then around ten doctors said it was psychosomatic, and I was sent to the psychiatrist, who said I was mentally healthy, and it was somatic, and I was sick. Then I was finally diagnosed with ME/CFS by a CFS specialist.” (Male, 38, ZH) |
| “I gave up going to physicians in Switzerland, I went to London, where I was diagnosed with ME/CFS. Back in Switzerland, I shared the report with my doctor, who said that CFS did not exist.” (Female, 51, AG) | “Being taken seriously by a doctor helped me to carry the burden caused by the disease.” (Male, 38, BE) | “Previously, I was mis-diagnosed as having psychosomatic issues and sent to a rehabilitation clinic. I had to do a lot of group activities to foster communication, as well as aggressive massages and lots of fitness. I had to stop, as I was getting sicker and sicker.” (Male, 51, VS) |
| “It was a relief to know what is wrong with me after 31 years, and understand my symptoms.” (Female, 46, LU). | “It is important for GPs to know the disease, because private clinics are too expensive for follow-ups.” (Female, 46, ZH) | “I was sent to a psychosomatic rehabilitation clinic. They made me do plenty of sports, which ultimately harmed me. I went into a three month crash afterwards. Nobody knew about ME/CFS there.” (Male, 44, AG) |
| “I was relieved to receive a diagnosis; after 10 years of being told it was all in my head, I really started believing I was mad.” (Female, 33, ZH) | “The specialist who diagnosed me is too far away; it is impossible to do follow-ups.” (Male, 69, AG) | “I went to a psychosomatic rehabilitation clinic, where I had to do a lot of sports. I left the clinic in a wheelchair. I went into a 1.5 month severe crash afterwards with fever and worsening of all symptoms; these clinics have to understand ME/CFS.” (female, 41, ZH) |
| “I am too weak to go the doctor and can often only do telephone appointments.” (Female, 54, AG) | “Many wrong diagnoses and therapies (anti-depressives and physical activities) worsened my condition over the years.” (Female, 57, SG) | |
| “There is no support; if my disease gets worse, I will register with EXIT.a” (Female, 46, LU) | “After the diagnosis of ME/CFS, I stopped the anti-depressants, and I feel so much better now.” (Female, 46, ZH) | |
| “Before my ME/CFS diagnosis, I received anti-depressants over many years. All my symptoms worsened.” (Male, 53, ZH) | ||
| “My worst experience was a doctor who forced me to do a lot of physical activities, which then worsened my symptoms a lot.” (Male, 38, BE). | ||
| “The wrong therapies I received, that led to severe worsening of the disease, make me now fearful to go to new doctors.” (Female, 31, AG) |
a
EXIT: Swiss Society dedicated to human self-determination, including physician-assisted suicide.