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

Dolphin

Dolphin

Senior Member (Voting Rights)
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
Click to expand...
 
Highlights


  • •
    First time study on mental health and well-being among M/CFS patients in Switzerland.

  • •
    High level (68.5%) of stigmatization reported due to ME/CFS.

  • •
    Overall, ME/CFS led to a third of the patients and to half of the male patients to have suicidal thoughts.

  • •
    ME/CFS led to secondary depression in 14.8% of the patients.

  • •
    Lack of disease recognition and adequate patient support.
 
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.
 
I was looking for research on cognitive dysfunction, and am about to read this, but decided to come here first. First impression, 14.8% rate of secondary depression sounds extremely low, especially if ~33% of pwme have suicidal thoughts. It implies suicidal thoughts are twice as likely as depression in ME/CFS. The first source I check says suicidal thoughts are present in 80% of depressed patients, an opposite relationship. Of course the concepts of depression and suicide are separate, although closely related if not only by the fact that suicidal thoughts are one of the screening symptoms for depression accounting for 11% of the PHQ-9.
 
nafione said:
I was looking for research on cognitive dysfunction, and am about to read this, but decided to come here first. First impression, 14.8% rate of secondary depression sounds extremely low, especially if ~33% of pwme have suicidal thoughts. It implies suicidal thoughts are twice as likely as depression in ME/CFS. The first source I check says suicidal thoughts are present in 80% of depressed patients, an opposite relationship. Of course the concepts of depression and suicide are separate, although closely related if not only by the fact that suicidal thoughts are one of the screening symptoms for depression accounting for 11% of the PHQ-9.
Click to expand...
I don’t feel like it’s particularly contradictory. I’ve had suicidal thoughts and I think it’s uncommon for people with my level of disability to never have had them. But I’ve never been depressed I don’t think. Never had lasting anhedonia and the like.

pwME aren’t in the statistically “normal” cohorts. We probably have a much higher suicidality rate because of things intrinsic to being severely disabled with a misunderstood illness in our sociopolitical system, but that doesn’t have to mean having depression, as you said it’s only 11% of the PHQ-9
 
Maybe I'm projecting, but I suspect most pwme would qualify for a depression diagnosis based on the phq9. Feeling down or hopeless, trouble sleeping, feeling tired, feeling bad about yourself, trouble concentrating, moving or speaking slowly or being restless, thoughts of hurting yourself are 7 of the 9 categories I would assume most pwme would associate with. If you feel those things nearly every day, that would qualify as severe depression. Anhedonia is only one category.
 
Yes, the bottom line is that many questionnaires are really badly designed and frequently conflate secondary consequences of many diseases as symptoms of a specific disease. Not that it is necessarily easy to design a good questionnaire but given the potential for harm from the use of many questionnaires the effort really should be made.
 
It also doesn't factor in the context. It doesn't make sense to talk of depression when someone is locked and chained. Being miserable with no quality of life is not depression, or even low mood or anything like that. The whole concept is very flawed as there is no way to take any of this into account, not by questionnaire, and certainly not by judgment when the context (of chronic illness) itself is denied.
 
Yes, there are very critical distinctions between a normal, and dare I say, healthy response to extremely shitty circumstances of unhappiness, despair, and desperation on one hand, and actual clinical depression on the other.

Obviously the first can lead to the second. But they are not the same.
 
ME/CFS Science Blog said:
"The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%)..."
Click to expand...
Yes, and what’s more, it’s a moral conflict. "If my mind is capable of such sadism, then it must be eliminated. It’s a monster."
It isn’t, how shall I put it, a realisation of an own worthlessness. It’s the sensation of evil itself.
 
You must log in or register to reply here.
Back
Top Bottom