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.
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.
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
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 Impairments in cognitive performance in chronic fatigue syndrome are common, not related to co-morbid depression but do associate with autonomic dysfunction (2019) 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) 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)
For all its many faults, Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (2024, Nature Communications) stated —
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
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.
