studies that do NOT find a connection between ME and pre existing mental health conditions

V

V.R.T.

Senior Member (Voting Rights)
I recently had an infuriating run in with a doctor online who was going on and on about the 'well documented' mental health connection with ME. I.e preexisting conditions. Saying things like its a shame the patients arent open to it and ignoring my story of how being open to it destroyed my health and functioning.

I have seen several studies in the past that find no connection between e.g. depression and ME. I was wondering if anyone could point me towards them for the next time I encounter one of these confidently incorrect windbags online.
 
V.R.T. said:
I recently had an infuriating run in with a doctor online who was going on and on about the 'well documented' mental health connection with ME. I.e preexisting conditions. Saying things like its a shame the patients arent open to it and ignoring my story of how being open to it destroyed my health and functioning.

I have seen several studies in the past that find no connection between e.g. depression and ME. I was wondering if anyone could point me towards them for the next time I encounter one of these confidently incorrect windbags online.
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I think what you’ll often find is studies saying that there was no increased psychological issues before ME onset, and therefore concluding that the higher psychological issues found after ME onset, are likely due to the difficulties faces / grief etc. of being disabled.

I’m sorry you had a nasty encounter with a doctor online.
 
Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al
Article | Thread
Abstract conclusion:
Conclusion
At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.

Follow up paper on the same cohort
Cytokine networks analysis uncovers further differences between those who develop ME/CFS following infectious mononucleosis, 2021, Jason et al
Article | Thread
From the abstract:
Results
Those with S-ME/CFS had a more interconnected network of cytokines, whereas recovered controls had more differentiated networks and more subgroupings of cytokine connections. Those with ME/CFS had a network that was denser than the controls, but less dense than those with severe ME/CFS.

Conclusions
The distinct network differences between these three groups implies that there may be biological differences between our three groups of study participants at baseline.
 
Trish said:
Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al
Article | Thread
Abstract conclusion:
Conclusion
At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.

Follow up paper on the same cohort
Cytokine networks analysis uncovers further differences between those who develop ME/CFS following infectious mononucleosis, 2021, Jason et al
Article | Thread
From the abstract:
Results
Those with S-ME/CFS had a more interconnected network of cytokines, whereas recovered controls had more differentiated networks and more subgroupings of cytokine connections. Those with ME/CFS had a network that was denser than the controls, but less dense than those with severe ME/CFS.

Conclusions
The distinct network differences between these three groups implies that there may be biological differences between our three groups of study participants at baseline.
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Yep this study is mentioned in a second hand source here for example:

Similar to other chronic diseases that can decrease patients’ quality of life, the psychological burden of ME/CFS is enormous, and secondary mental illnesses such as reactive depression may occur. However, as Jason et al. [41]
show in a prospective study, patients with ME/CFS are no more likely to have a history of mental illness before the onset of their disease than the average population.
​
https://www.mdpi.com/1648-9144/60/1/83
 
Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study, 2006, Hickie, Lloyd et al
An old prospective study that found that psychological characteristics did not predict 'post-infective and chronic fatigue syndromes'.

There was a much later paper that rummaged around in the same data trying to find some psychological link. They claimed to have found something but actually there was nothing.
Here it is:
Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al
 
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I doubt it could change anyone's mind. This isn't a rational position so rational arguments won't make a difference.

The 2015 IOM report explicitly said so and I've seen MDs dismiss it out of hand, saying they skimmed it and don't see anything that disproves that it's not mental illness. Either unaware or indifferent that proving a negative is impossible. Even though it says it in completely unambiguous terms.
 
Two helpful papers from Prof Julia Newton’s group:

Rethinking childhood adversity in chronic fatigue syndrome, 2017
Background: Previous studies have consistently shown increased rates of childhood adversity in chronic fatigue syndrome (CFS). However, such aetiopathogenic studies of CFS are potentially confounded by co-morbidity and misdiagnosis particularly with depression.

Purpose: We examined the relationship between rates of childhood adversity using two complimentary approaches (1) a sample of CFS patients who had no lifetime history of depression and (2) a modelling approach.

Methods: Childhood trauma questionnaire (CTQ) administered to a sample of 52 participants with chronic fatigue syndrome and 19 controls who did not meet criteria for a psychiatric disorder (confirmed using the Structured Clinical Interview for DSM-IV). Subsequently, Mediation Analysis (Baye’s Rules) was used to establish the risk childhood adversity poses for CFS with and without depression.

Results: In a cohort of CFS patients with depression comprehensively excluded, CTQ scores were markedly lower than in all previous studies and, in contrast to these previous studies, not increased compared with healthy controls. Post-hoc analysis showed that CTQ scores correlated with the number of depressive symptoms during the lifetime worst period of low mood. The probability of developing CFS given a history of childhood trauma is 4%, a two-fold increased risk compared to the general population. However, much of this risk is mediated by the concomitant development of major depression.

Conclusions: The data suggests that previous studies showing a relationship between childhood adversity and CFS may be attributable to the confounding effects of co-morbid or misdiagnosed depressive disorder.
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Impairments in cognitive performance in chronic fatigue syndrome are common, not related to co-morbid depression but do associate with autonomic dysfunction (2019)
Objectives
To explore cognitive performance in chronic fatigue syndrome (CFS) examining two cohorts. To establish findings associated with CFS and those related to co-morbid depression or autonomic dysfunction.

Methods
Identification and recruitment of participants was identical in both phases, all CFS patients fulfilled Fukuda criteria. In Phase 1 (n = 48) we explored cognitive function in a heterogeneous cohort of CFS patients, investigating links with depressive symptoms (HADS). In phase 2 (n = 51 CFS & n = 20 controls) participants with co-morbid major depression were excluded (SCID). Furthermore, we investigated relationships between cognitive performance and heart rate variability (HRV).

Results
Cognitive performance in unselected CFS patients is in average range on most measures. However, 0–23% of the CFS sample fell below the 5th percentile. Negative correlations occurred between depressive symptoms (HAD-S) with Digit-Symbol-Coding (r = -.507, p = .006) and TMT-A (r = -.382, p = .049). In CFS without depression, impairments of cognitive performance remained with significant differences in indices of psychomotor speed (TMT-A: p = 0.027; digit-symbol substitution: p = 0.004; digit-symbol copy: p = 0.007; scanning: p = .034) Stroop test suggested differences due to processing speed rather than inhibition.

Both cohorts confirmed relationships between cognitive performance and HRV (digit-symbol copy (r = .330, p = .018), digit-symbol substitution (r = .313, p = .025), colour-naming trials Stroop task (r = .279, p = .050).

Conclusion
Cognitive difficulties in CFS may not be as broad as suggested and may be restricted to slowing in basic processing speed. While depressive symptoms can be associated with impairments, co-morbidity with major depression is not itself responsible for reductions in cognitive performance. Impaired autonomic control of heart-rate associates with reductions in basic processing speed.

Citation: Robinson LJ, Gallagher P, Watson S, Pearce R, Finkelmeyer A, Maclachlan L, et al. (2019) Impairments in cognitive performance in chronic fatigue syndrome are common, not related to co-morbid depression but do associate with autonomic dysfunction.
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And a recent study from Switzerland which shows that when viewed from the perspective of ME/CFS patients, issues with mental health are consequences of the illness and not causes (as opposed to most studies where mental health is assessed by clinicians with questionnaires that are not valid):

Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study (2024)
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.
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.
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Note that this study is very much in line with Leonard Jason’s study on the risk factors for suicide in ME/CFS:

Risk factors for suicide in chronic fatigue syndrome (2022)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) includes symptoms such as post-exertional malaise, unrefreshing sleep, and cognitive impairments. Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area. This study explores risk factors for suicide among 64 individuals with ME/CFS using archival data, 17 of which died from suicide. Results indicated an increased risk of suicide for those for those utilizing the label CFS, for those with limited overall functioning, and for those without comorbid illnesses. Findings suggest that stigma and functional impairments limit access to care and social supports.
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There's also a lot of LC papers showing no connection between LC and pre existing mental health conditions. The possibly most famous LC paper by Iwasaki et al finds
Importantly, the aggregated medical history of individuals with LC did not significantly differ from that of CC individuals in prevalence of anxiety or depression. Complete demographic features and medical histories are reported in Extended Data Table 1.
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rvallee said:
I doubt it could change anyone's mind. This isn't a rational position so rational arguments won't make a difference.

The 2015 IOM report explicitly said so and I've seen MDs dismiss it out of hand, saying they skimmed it and don't see anything that disproves that it's not mental illness. Either unaware or indifferent that proving a negative is impossible. Even though it says it in completely unambiguous terms.
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I'm not trying to change their minds. At this point I am concerned that even a biomarker and treatment won't change these quacks mind as they've bought in so deeply to the BPS professors new clothes. This was part of a debate over long covid and I want to be able to show evidence to other people that might read the discussion that these doctor's views are incorrect. They confidently assert these views and it sounds very authoritative. It's important to be able to counter them where we can imo.
 
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