Health system support among patients with ME/CFS in Switzerland, 2023, Tschopp

Free fulltext: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9957780/

J Taibah Univ Med Sci. 2023 Aug; 18(4): 876–885. Published online 2023 Jan 4. doi: 10.1016/j.jtumed.2022.12.019 PMCID: PMC9957780

Language: English | Arabic

Health system support among patients with ME/CFS in Switzerland

Rea Tschopp, PhD,a,c,d,∗ Rahel S. König, MD,b Protazy Rejmer, MD,e and Daniel H. Paris, MDa,c

Abstract

Objectives

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic and debilitating multifactorial disease. Adequate patient care is challenged by poor knowledge among health care professionals and the historical misconception that the disease is psychological in nature. This study assessed the health-related challenges faced by patients with ME/CFS in Switzerland and examined whether they receive adequate health care.

Methods

Quantitative and qualitative data were collected through a self-administered questionnaire between June and September of 2021, among 169 patients with ME/CFS in Switzerland.

Results

The mean age at diagnosis was 38.8 years. Only one-third of ME/CFS affected children and youth were correctly diagnosed before their 18th birthday. The mean time from disease onset to diagnosis was 6.7 years, and patients had an average of 11.1 different appointments and 2.6 misdiagnoses. A poor diagnosis rate and insufficient disease knowledge among health professionals in Switzerland led 13.5% of the patients to travel abroad to seek a diagnosis. Most patients (90.5%) were told at least once that their symptoms were psychosomatic. Swiss patients expressed high dissatisfaction with the health system and indicated that physicians lacked knowledge regarding ME/CFS. Therapies prescribed by physicians or tried by patients, as well as their perceived efficacy, were described. Graded Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing, complementary/alternative medicine, and dietary supplements and medications to alleviate symptoms were reported to be helpful to varying degrees.

Conclusion

This study highlights that poor disease knowledge among health care providers in Switzerland has led to high patient dissatisfaction, and delays in ME/CFS diagnoses and prescription of inappropriate therapies, thus adding to patient distress and disease burden.

Keywords: Diagnostic, Knowledge, Medical care, Myalgic encephalomyelitis/chronic fatigue syndrome, Switzerland, Therapies

 

Next up: The wetness of water among rivers in Switzerland, 2023, Smith et all.

Jokes aside, no matter how obvious it already is to patients, it needs documented in painstaking detail.

 

Some quotes from patients in the survey:

"All doctors said I had depression, but the psychiatrist said I had no depression and that it was somatic."

"“Before my disease, I have always been a big sportsman, so GET was attractive to me when prescribed. However, it worsened all my symptoms.”

"“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."

"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)

"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."

"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.”

"After the diagnosis of ME/CFS, I stopped the anti-depressants, and I feel so much better now.”

"“My worst experience was a doctor who forced me to do a lot of physical activities, which then worsened my symptoms a lot.”​

The authors write: "Of all types of therapy attempted by patients, GET was the only one reported to have harmful effects"