Commentary: Suicide is a Concern for the Chronic Invisible Illness Community, 2020, Pederson

Andy

Andy

Retired committee member
Rates of suicidal ideation, attempts, and completion are alarmingly high in chronic invisible illness communities. Suicide is the second leading cause of death for people with myalgic encephalomyelitis/chronic fatigue syndrome [1], with 20% of patients dying by suicide [2]. In postural orthostatic tachycardia syndrome, approximately 50% are at high risk for suicide, with 15-18% reporting past suicide attempts, and 13% stating that they will likely make a future suicide attempt [3,4]. In the fibromyalgia community, 33% report suicidal ideation [5], while 4% of people with hypermobile Ehlers Danlos syndrome attempt suicide [6]. Finally, 1,200 chronic Lyme disease patients die by suicide in the United States annually [7]. Clearly, the chronic invisible illness community is highly affected by suicidal ideation
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Open access, https://escires.com/articles/Health-1-176.pdf
 
Suicide is the second leading cause of death for people with myalgic encephalomyelitis/chronic fatigue syndrome [1], with 20% of patients dying by suicide [2]
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I was surprised by this, so I checked the reference. They have got it badly wrong.

Mortality in a cohort of chronically fatigued patients
Abstract
Background. Comprehensive studies of mortality among patients with chronic fatigue (CF) and chronic fatigue syndrome (CFS) have not been published, but several sources suggest that CFS is associated with an elevated risk for suicide.

Method. Data on 1201 chronically fatigued patients followed in a university-affiliated tertiary-care clinic for up to 14 years were submitted to the Center for Disease Control and Prevention (CDC) National Death Index (NDI) to evaluate all-cause and suicide-caused death rates against standardized mortality rates (SMRs). We used Life Table Analysis to examine the influence of sex and diagnoses of CFS and depression.

Results. All-cause mortality in chronically fatigued patients was no higher than expected, but suicide-caused death rates were more than eight times higher than in the US general population. The significant elevation in the SMR of suicide was restricted to those who did not meet criteria for CFS [SMRCF=14·2, 95% confidence interval (CI) 5·7–29·3 versus SMRCFS=3·6, 95% CI 0·4–12·9]. Among chronically fatigued patients who did not meet CFS criteria, those with a lifetime history of major depression (MD) had higher suicide-caused death rates than among their non-depressed counterparts (SMRMD=19·1, 95% CI 7·0–41·5 versus SMRNMD=5·6, 95% CI 0·1–31·4), although the difference was not significant.

Conclusions. CFS does not appear to be associated with increased all-cause mortality or suicide rates. Clinicians, however, should carefully evaluate patients with CF for depression and suicidality.
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My bolding.

The study looked at chronically fatigued patients. The high suicide rate reported applied to those with major depressive disorder, not to those with CFS.
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Edit: I have written to Dr Pederson to point this out.
 
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Mortality in [PwME/CFS] McManimen et al 2016.

A different approach here, they want to determine if PwME are dying earlier of the same causes than the general population.

Methods
Family, friends, and caregivers of deceased individuals with ME or CFS were recruited through social media, patient newsletters, emails, and advocate websites. This study analyzed data including cause and age of death for 56 individuals identified as having ME or CFS.

Results
The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years)

compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age.
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After this finding there is an issue with suicide, but it is not clear if this would translate into a higher rate.
 
Another thing which bothers me a bit is that suicide is commonly associated with feeling depressed or something like that. This would make it a pathological behaviour. I am afraid this is not true, and such an approach will not hinder all these suicides which are not thought through well enough (I think, it´s only one fifth of these who survive their own attempts who try again, two years later is quite a pattern, if I am remembering rightly). In fact, suicidal prevention does not appear to be effective.

Therefore it should be important to look also at this finding on ME/CFS, but again without any rates.

Suicidal ideation in non-depressed individuals: The effect of a chronic, misunderstood illness
Devendorf et al 2018

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.
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Loss of basic income must rank up there. Adequate income goes a long way to making the rest of life's slings and arrows manageable and bearable.

If psychs were serious about reducing anxiety and depression in particular, and certainly suicide, then an adequate guaranteed minimum level of material and social support would be a central pillar of their profession's advocacy. But it isn't.

Terror is a word not often used in these contexts. But having to deal with serious adverse unknowns, including an unrelentingly and increasingly hostile socioeconomic situation with no resolution in sight, being at the irrational mercy of hostile others, is terrifying. It crushes even the most resilient of people.

The failure of psychs to adequately address this issue is one of their greatest and most damning.

The real question for them is why have they failed? This is not complicated stuff. There is no original insight or research needed to understand that the lack of basic necessities, especially a chronic lack, is never going to end well for those on the receiving end.

Instead, all these arse holes are doing is generating endless convenient excuses for the political and economic elite, not to mention themselves, for inflicting this savagery upon the poor, sick, and vulnerable.

It is cruelty writ large.

(With honourable individual exceptions, of course. But the profession as a whole is guilty as sin.)
 
Sean said:
The real question for them is why have they failed? This is not complicated stuff. There is no original insight or research needed to understand that the lack of basic necessities, especially a chronic lack, is never going to end well for those on the receiving end.
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It's not in their self interest to propose interventions that don't involve psychology or don't require a psychologist to deliver.

In my view the most effective psychosocial intervention would be to tell patients they are sick (ie. the opposite of downplaying), that nobody knows the cause and that there is no reason to believe they brought this on themselves, and that they need to learn live with it as best as they can. This is approximately the opposite of what the BPS brigade is telling society.

Then make sure patients have financial support and housing. You don't need a psychologist for that.

I suspect that considerable harm results from patients not being told they (probably) have an incurable disease.
 
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Perversely it might be in their interest to create dysfunction in the doctor patient relationship so that they can position themselves as solution (for the difficult patient). Given that the advice they give to doctors is consistently terrible, one wonders whether that might be occurring. This would not require an intent to do this, it might just be that the organizations and belief systems that promote behaviours that perpetuate the organization and belief system will be the the ones that persist over time, when the ones that don't just fade away and are forgotten.
 
Twenty odd years ago MS patients were not told their diagnosis as it was thought no one would want to know that they had a lifelong disease with a serous risk of severe disability.

Patients complained (many of them found out by accident from locums for instance) and they got their way with an almost "on your own heads be it" attitude.

They may have been some who gave up at the thought, but most people were happier with a diagnosis rather than a vague, unknown ill health, and it gave them control. This may be fad diets or strange alternative medicine but they felt better feeling they were doing something.

So the experiment has been done. Acknowledging people's ill health, even if there are not treatments makes people feel better.
 
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