Trial Report Identifying the mental health burden in ME/CFS patients in Switzerland: A pilot study, 2024, König et al

[Dolphin]

https://www.sciencedirect.com/science/article/pii/S2405844024030627

Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study

Rahel Susanne König, Daniel Henry Paris, Marc Sollberger, Rea Tschopp

PII: S2405-8440(24)03062-7
DOI: https://doi.org/10.1016/j.heliyon.2024.e27031 Reference: HLY 27031 To appear in: HELIYON

Received Date: 7 May 2023 Revised Date: 9 February 2024 Accepted Date: 22 February 2024

Please cite this article as: , Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study, HELIYON (2024), doi: https:// doi.org/10.1016/j.heliyon.2024.e27031.

Abstract
Background
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic disease of significant public health and clinical importance. It affects multiple systems in the body and has neuro-immunological characteristics. The disease is characterized by a prominent symptom called post-exertional malaise (PEM), as well as abnormalities in the immune-inflammatory pathways, mitochondrial dysfunctions and disturbances in neuroendocrine pathways. The purpose of this study was to evaluate the impact of ME/CFS on the mental health and secondary psychosocial manifestations of patients, as well as their coping mechanisms.

Method
In 2021, a descriptive cross-sectional study was conducted in Switzerland. A self-administered paper questionnaire survey was used to gather data from 169 individuals diagnosed with ME/CFS.

Results
The majority of the patients (90.5%) reported a lack of understanding of their disease, resulting in patients avoiding talking about the disease due to disbelief, trivialization and avoidance of negative reactions. They felt most supported by close family members (67.1%). Two thirds of the patients (68.5%) experienced stigmatization. ME/CFS had a negative impact on mental health in most patients (88.2%), leading to sadness (71%), hopelessness for relief (66.9%), suicidal thoughts (39.3%) and secondary depression (14.8%). Half of the male patients experienced at least one suicidal thought since clinical onset. Factors significantly associated with depression were the lack of cure, disabilities associated with ME/CFS, social isolation and the fact that life was not worth anymore with ME/CFS. The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%), (ii) being at the end of one's strength (80.7%) and (iii) not feeling being understood by others (80.7%).

Conclusion
This study provided first time significant insights into the mental and psychological well-being of ME/CFS patients in Switzerland. The findings highlight the substantial experiences of stigmatization, secondary depression and suicidal thoughts compared to other chronic diseases, calling for an urgent need in Switzerland to improve ME/CFS patient's medical, psychological and social support, in order to alleviate the severe mental health burden associated with this overlooked somatic disease.

Keywords
Depression
Myalgic Encephalomyelitis/ chronic fatigue syndrome
Stigmatization
Suicidal ideations
Switzerland

https://twitter.com/user/status/1762172388366504053

 

[Dolphin]

Highlights

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  First time study on mental health and well-being among M/CFS patients in Switzerland.
  
  
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  High level (68.5%) of stigmatization reported due to ME/CFS.
  
  
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  Overall, ME/CFS led to a third of the patients and to half of the male patients to have suicidal thoughts.
  
  
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  ME/CFS led to secondary depression in 14.8% of the patients.
  
  
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  Lack of disease recognition and adequate patient support.
  

 

[RedFox]

This is a very important study. It shows that telling people with ME/CFS that their illness is psychosomatic makes them suicidal.

 

[RedFox]

This paper is a solid example of good psychosocial research into ME.

 

[ME/CFS Skeptic]

Quote from the paper:

"The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%), (ii) being at the end of one's strength (80.7%) and (iii) not feeling being understood by others (80.7%)."​

 

[Sean]

"The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%),..."

Now that is an actual pathological psychosocial factor.

 

[Hutan]

Yes, this is really valuable for advocacy.

If the BPS people can't fix ME/CFS with therapies based on a psychosomatic paradigm, and there's no evidence that they can, then there's absolutely nothing to balance the considerable harm that is created by telling someone that their symptoms are, or are probably, psychosomatic. Unmitigated harm.