Death Studies: Risk factors for suicide in chronic fatigue syndrome - 2020 - Johnson, Jason et al

Risk factors for suicide in chronic fatigue syndrome

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.

ETA: Whole article now available

 

Leonard Jason and his team at DePaul University look into key community-based (demographic, social, psychological) aspects of ME/CFS that remain barely studied. Tough things that, I presume, noone really wants to look at.

Their results depict the reality of the disease, and it's a bleak picture. But then that means they are all the more helpful in exposing the horror that is ME -- especially for advocacy purposes --. While we, the patients, know about it, hard data is necessary to prove what we're claiming to people making healthcare-related decisions. So a massive thanks to Jason & team for their continued work over the years.

 

It's a small sample at 64 but 25% deaths by suicide is as absolutely disastrous as it was predictable, shocking but entirely unsurprising. The outcome of the BPS model of ME can borderline be considered genocidal. Whether it rises to that level is highly debatable but it absolutely meets the threshold for willful criminal negligence.

The small sample size makes accuracy low but this is very telling. An ME diagnosis alone means complete denial of health care. Having an unrelated health problem that allows for medical care makes a significant impact. The BPS/MUS model insists, INSISTS, that no investigation of any problem should continue past the psychosocial label of chronic fatigue, thus guaranteeing that comorbid problems would be missed.

I personally estimate that at least half of the total disease burden of ME in the last half century was caused directly by the state of denial and discrimination. At the very least and probably closer to 90%. This supports it well enough that it is imperative to confirm or falsify ASAP. I never bought that ME does not significantly reduce life expectancy. It never made sense with the data.

This is a death rate on par with the male Russian population, known for its low life expectancy in part because of high rates of alcohol consumption. Look at the list of worldwide life expectancy: the ME population would be in the bottom 10 lowest life expectancy levels if it were a country, or at best bottom 10% if we account for a low sample. And that is coming from a US population.

It bears repeating what is surprisingly a controversial statement but: neglecting sick people to fend for themselves is very bad for them and ultimately kills them while making life until that point unbearable cruelty. I wish medicine learned that painful lesson some day.

 

Is it available for free? I can’t see how to read the full article without paying.

it’s important work and I am glad they have published it. We could use a bigger study or collection of cause of death stats for all of us.

 

It wasn't, then it was, then it wasn't

 

It's on sci-hub.

Thank you, sci-hub.

 

I was eager to read it. Thanks @rvallee
Here's the link on sci-hub.

Risk factors for suicide in chronic fatigue syndrome

 

We do need this kind of information. I am glad they have looked at it. I was surprised at the conclusion that pain wasn’t a factor that differentiates between those most at risk and those not. I wonder if those that had pain but didn’t commit suicide were in the bedbound and unable to carry it out category? (It’s been a couple of days since I read the paper, so apologies if I have forgotten the detail).

I recently lost a close friend to assisted dying and extreme pain was a factor but I would
have liked the study to look at sleep dysfunction. My friend could possibly have coped better if they could have had more than two hours drug induced sleep per night. The pain and other ME-symptoms may even have not escalated as fast.

This study also raises the contentious question of the lack of choice of those in the very severe category to have any control over their death, in most countries. Obviously better medical and social care should be the first thing to change, and is such a huge source of distress and lack of quality of life for so many of us.

The devastating thing is that so many of these lives could be saved and made bearable with care and support, and a lack of neglect and active harms by professionals.

 

Meet the Scientists: Leonard Jason & Madeline Johnson: risk factors for suicide in people with ME/CFS

interview

https://meassociation.org.uk/2021/0...sk-factors-for-suicide-in-people-with-me-cfs/

 

If you take this and apply it to longcovid, we have a duty to try to prevent this kind of outcome for a new wave of patients.

Its good the ME association are looking at this and from Dylan Murphy's blog interviewing the authors the following is very pertinent to the activity of communities like this one.

 

Discussion

Our study identified illness label, level of functionality, and lack of comorbidities as risk factors related to suicide among patients with ME/CFS. We found significantly higher rates of suicide for patients identifying with the illness label CFS, for patients with a moderate overall level of functionality, and for patients without comorbid diagnoses. Pain, however, was not significant as a risk factor between those who died by suicide versus those who died of other causes.

Those who utilized the CFS label were more likely to die of suicide. CFS is a stigmatizing term as this label only focuses on the symptom of ‘fatigue’ despite the presence of many other debilitating symptoms. Terms with the acronym ME suggest physiological aspects of the illness, as “myalgic” refers to muscle pain, whereas “encephalomyelitis” means inflammation of the brain and spinal cord (Jason, Paavola, et al., 2010). Several studies examining the attitudes associated with various labels found that medical students and college students have a more physiological explanation of this illness when using the term ME as opposed to CFS (Jason et al., 2002, 2004). What individuals associate an illness with, or how it is labeled, has a direct effect on illness treatment and outcomes (Wojcik et al., 2011). Perceptions of illnesses sometimes evolve (i.e., favoring physiological over mental causes), and subsequent biological findings associated with medical advancements contribute to these changes (Wojcik et al., 2011). Unfortunately, our study did not have a direct measure of stigma, but it is highly likely that the term CFS is stigmatizing to many patients with ME/CFS.

We found that patients who were housebound and demonstrated limited overall functioning were at the greatest risk for suicide. Patients who had enough energy and physical functioning to leave their bed, but who did not have the energy for activities outside the house, were at the greatest risk for suicide. This is compatible with Joiner (2007) who found that one’s capability to overcome physical limitations and fear associated with self-harm significantly increases one’s ability to carry out a lethal suicide attempt. It is possible that those patients who were bedbound and with the lowest level of physical functioning might have also wished to end their lives, but were without the physical energy levels required to accomplish this. In regard to the highest functioning group of patients, it is possible that although they possessed the physical capability to successfully engage in a suicide attempt, their ability to participate in social and vocational commitments, even if limited, served as protective factors for suicidal ideation and suicide (McLean et al., 2008).

In our sample, high levels of pain endorsement were not significantly different from the suicide and non-suicide groups. This suggests that pain may not be a primary factor contributing to one’s decision to die of suicide, whereas other factors such as thwarted belongingness, or perceived burdensomeness, may have greater influences on decisions to end life (Wilson et al., 2013). There might also be a threshold factor where above a certain amount of pain, there are comparable levels of difficulties, and that all the patients had reached this level.

We also found that those without comorbid illnesses, both prior to and following the onset of ME/ CFS, were at greater risk of suicide than those patients diagnosed with one or more comorbidities. Findings of this nature are unique in comparison to current literature that has found suicide risk to be greater for patients experiencing multiple illnesses (Druss & Pincus, 2000; Juurlink et al., 2004). However, for an illness such as ME/CFS that is largely misunderstood, it is possible that a second illness may serve as a social buffer. That is, a comorbid illness may allow the patient to present an illness label to others that is more acceptable and has fewer barriers to accessing support and resources (Jutel, 2015).

There were several limitations to the current study. The sample of participants recruited was small, of which only 17 indicated suicide as the cause of death. Still, because there are so few investigations of risk factors for suicide among those with ME/CFS, this preliminary study could provide investigators with ideas for future studies with larger samples. A second limitation is that the study was conducted following the deaths of each patient. Therefore, data were collected from close family members and friends, rather than directly from the deceased individuals. Because information was reported by way of a second party, data obtained might not match the conditions and experiences of the patients themselves. In addition, data were collected through an online survey. Future investigations could attempt to conduct assessments in person with patients who are critically ill and close to death so as to fully apprehend the feelings and experiences of those effected. However, collecting this type of data might be particularly difficult for those experiencing suicidal ideation.

In summary, this study identified label attribution, functional deficits, and the absence of comorbidities as possible risk factors for suicide in patients with ME/CFS. These findings might be due to the debilitating nature of this illness as well as the challenges encountered in regard to accessing care and convincing others of the seriousness of their illness. The findings highlight the importance of health care professionals developing ways to counteract these risk factors when interacting with patients and their family members or friends, particularly through efforts to legitimize their illness and provide needed medical resources, social resources, and support.

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Thanks to Leonard Jason we have known the story for some years. I have said in the past, which probably got dismissed by people I said it to, that CFS (its an old comment before I really emphasized ME) has a suicide rate that is much worse than major depressive disorder. I recall an old study in Victoria, Australia, that had an attempted suicide rate in long term patients of about 16%. Those were the people still with us and who were willing to share what they went through.

ME and CFS are not joke disorders, as we well know here.