Risk factors for suicidal ideation in a chronic illness 2022 Elliott and Jason

[rvallee]

There isn't enough known on suicides in LC, but my impression is that more often than not it happens early on, as a result of awful interactions with healthcare, driven by symptoms. Gaslighting has a body count, it drives people to suicide. As anyone with half a brain could understand, frankly.

But, of course, there is almost no data on this because reasons of suicides are held secret, even when they can be known. There are some good reasons for this, but I would not be surprised if after a major breakthrough on chronic illness suicides and homelessness drop massively, to the point of being noticeable.

 

[RedFox]

The random factors are important though. A particularly irritating response from a doctor, or some household hassle, or some other such factor could push the patient into deciding not to deal with life anymore.

This is very true. A significant fraction of suicides are impulsive.

I think I was quite lucky to have had several temporary remissions, which convinced me that this disease was reversible; it could quite simply be 'shut off'. That gave me hope that I could find another way of triggering that switch and keeping it in the off position.

My experience leads me to the same conclusion. It seems like every time I get a vaccination, I have a short "window" lasting about a week with dramatically reduced symptoms. For example, I can think way faster and get very mild PEM from things that would normally give me severe PEM. This gives rise to two hypotheses: That my immune system is involved, and there's little to no permanent damage.

 

[Creekside]

This gives rise to two hypotheses: That my immune system is involved, and there's little to no permanent damage.

I have no doubts that my immune system is involved in my ME. I'm also convinced that my glial cells are involved.

When I had my temporary remissions, my ME switched off completely over a matter of minutes. Thus I'm also convinced that my ME is an abnormal state being held that way by a feedback loop. In the early stages, it was possible to snap that feedback loop out of that state, but other factors seemed to keep switching it back to ME.

 

[cfsandmore]

These Doctors Admit They Don’t Want Patients With Disabilities. (This can be read freely for 2 weeks.)
https://www.nytimes.com/2022/10/19/...L6PIn4uv9oZWfEIgam3Gn-fAldJvIg&smid=share-url

I think the article relates to why pwME turn inward becoming suicidal.

Thread on the article here: These Doctors Admit They Don’t Want Patients With Disabilities, NYT

 

[Hutan]

I doubt that they considered direct chemical responses. Niacin made me strongly suicidal. I believe the mechanism involved quinolinic acid, which is known to induce suicidal ideation.

Not to diminish the awfulness of chronic illness and the losses, and the additional impact of being disbelieved and stigmatised, but I do think that the handing out of anti-depressants with little followup or monitoring for side effects or information about the problems that come with ceasing the treatment surely contributes to suicide rates.

 

[DokaGirl]

@Laurie P and @cassava7

Yes, agreed.

Receiving benefits also makes the situation more real and official. It may put a final-like stamp on one's health, and life. It indicates others confirm and agree the pwME is quite unwell, and not able to work for at least a significant period of time. All the hard work, plans and hopes for the future are at least viewed as on hold, or are dashed.

Going further down the road, being assessed as permanently disabled and unable to work, as opposed to temporarily on benefits, really finalizes things. This makes official the detour one's life has taken.

 

[DokaGirl]

Based on what I have read and heard out of desperate pwME (and LC) over the years, I find only one factor, everything else is derived from it: lack of hope.

It's one thing to have a disease with support and the knowledge that people are at least trying to help, even if it's not much. But knowing that the very people whose job it is to do something instead are committed to making sure this never happens, hold those patients in contempt because of their illness, all hope is lost. Almost every interaction with the healthcare system is a reminder of how committed they are to keep this disaster going.

From LC forums every time desperate people voice their hopelessness, replies are always in the form that with time, most recover, so they have to hold on to that hope, to chance, basically. It's all chance, no one is affecting things, let alone improving them. Hope that medicine can help, now or in the future, is already long over.

So the cause and solution are obvious: medical neglect, and its end. I don't think any single factor matters a fraction as much as chance here: how ill someone is, how long it lasts, their financial and familial situation. It's all chance, random, mostly by the complete absence of the only professionals allowed to do anything. That's all consequence of negligence.

It's always the lack of hope that gets people. That's technically easy to deal with, except the way out is essentially blocked by politics and culture, as it goes through acknowledging that medicine itself played the main role in this despair. Nothing kills hope faster and more thoroughly than the damned psychosomatic ideology that choked all life out of this issue. None of this had to happen. None of it.

Very well put. Thank you.

 

[DokaGirl]

indeed. I'd also add that in uk the system is byond hostile, going through the process of regular reassessment (which is like being cross examined in court accused of a crime you havent committed), has provoked ideation in me, regardless of being ill etc.

Ongoing reassessment is terrible. Benefit programs seem to operate on the assumption that the person receiving benefits is guilty until proven innocent.

Official guidance to restrict testing, of course assists in proving the "guilt" of pwME who are actually suffering from a very debilitating disease.

 

[Tom Kindlon]

Merged thread
IACFS/ME Virtual Journal Club: January 2023 Recording



Discussion of "Risk factors for suicidal ideation in a chronic illness" (on ME/CFS)

Paper available here:



Blurb:
Although suicide is one of the 3 leading causes of death among people with ME/CFS and 40-60% of moderately and severely affected patients have thought about suicide,not much is known about what factors may increase or decrease risk. Furthermore, surprisingly, there is a lack of research about suicide and chronic illness in general.

Ms. Elliott will discuss her work exploring this important and urgent topic. The article discussed is titled "Risk factors for suicidal ideation in a chronic illness".

Click link below for full text:

Presentation starts at 5:40 and Discussion starts at 22:04

If you enjoyed this video and are a clinician, researcher, or other professional interested in ME/CFS, long COVID, and related conditions, join us for live future sessions by contacting us at iacfsmeorg@gmail.com. Please provide verification of your professional status by including a link to your profile on your organization/ personal website or on LinkedIn.

Since 1990, IACFS/ME has served as an international, non-profit organization for scientists, clinicians, patients, families, and other interested parties to learn about and share information concerning ME/CFS and related conditions. To find out more about IACFS/ME and our journal, conferences, and other activities, visit iacfsme.org.

 

[hibiscuswahine]

Thank you Tom, don’t get enough papers on the suicide risks of ME.

Mod note: thread has been merged into existing thread

 

[Shadrach Loom]

“The only protective factor is being married, which is not modifiable on an individual level.”

Unwarranted gloom there about the prospects for Boston Dynamics coming to market with affordable empathetic anthropoform robo-spouses.

 

[hibiscuswahine]

“The only protective factor is being married, which is not modifiable on an individual level.”

Unwarranted gloom there about the prospects for Boston Dynamics coming to market with affordable empathetic anthropoform robo-spouses.

, hard enough getting disability aids now, let alone the next generation of them.

 

[CRG]

Minor grumble - we have no idea how most people with ME/CFS die - we don't even know what age they die at or what old age is for people with ME/CFS. Suicide may be a significant risk in ME/CFS but we know so little about the whole patient population that saying things like suicide is one of the three leading causes of death is unjustified when the samples are so low.

Elliot and Jason quote two studies -

1) Roberts, Wessely, Chalder, Chin-Kuo & Hotopf (boo hiss etc but the numbers look right in this study) https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext

"Results
We identified 2147 cases of chronic fatigue syndrome in CRIS with 17 deaths. Of them, 1533 patients were women of whom 11 died, and 614 were men of whom six died. Eight deaths were from malignant neoplasm, five from suicide, and four from other causes.

There was no significant difference in age-standardised and sex-standardised mortality ratios for all-cause mortality (SMR 1·14; 95% CI 0·5–1·85; p=0·67) or cancer-related mortality (1·39; 0·60–2·73; p=0·45). This remained the case when stratified by sex, and when those deaths from external causes were removed from the analysis. However, there was a significant increase in suicide mortality with an SMR of 6·85 (95% CI 2·22–15·98; p=0·002; table 1). Although the suicide-specific SMR was significantly increased compared with the general population, if there had been two fewer deaths by suicide, this result would have been non-significant, although the effect size (SMR>4) would still be indicative of a strong effect. Table 1 shows detailed SMRs for the study cohort."

and

2) Jason, Corradi, Gress, Williams & Torres-Harding https://sci-hub.st/10.1080/07399330600803766 which uses National CFIDS Foundation Memorial List a cohort of just 144 deaths.

"Table 1 presents the reason for death among the 144 individuals where this information was available. The three leading causes of death were heart failure, suicide, and cancer, accounting for 59.6% of cases. In regard to gender, 74.4% of this sample were female and 25.6% were male, and this difference was significant at the p < .01 level using a binomial test. There were also significant differences between males and females at the p < .01 level for deaths due to suicide and cancer. Small sample sizes probably led to lack of significance on other variables."

 

[shak8]

“The only protective factor is being married, which is not modifiable on an individual level.”

Unwarranted gloom there about the prospects for Boston Dynamics coming to market with affordable empathetic anthropoform robo-spouses.

I would like a robo-spouse who is also capable (upon my demand) to change into an attractive housecat. Able to vacuum, shop, and clean without negative comments or smirks. A sort of Stepford husband-cat-robot.

 

[hibiscuswahine]

Minor grumble - we have no idea how most people with ME/CFS die - we don't even know what age they die at or what old age is for people with ME/CFS. Suicide may be a significant risk in ME/CFS but we know so little about the whole patient population that saying things like suicide is one the three leading causes of death is unjustified when the samples are so low.

Elliot and Jason quote two studies -

1) Roberts, Wessely, Chalder, Chin-Kuo & Hotopf (boo hiss etc but the numbers look right in this study) https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext

"Results
We identified 2147 cases of chronic fatigue syndrome in CRIS with 17 deaths. Of them, 1533 patients were women of whom 11 died, and 614 were men of whom six died. Eight deaths were from malignant neoplasm, five from suicide, and four from other causes.

There was no significant difference in age-standardised and sex-standardised mortality ratios for all-cause mortality (SMR 1·14; 95% CI 0·5–1·85; p=0·67) or cancer-related mortality (1·39; 0·60–2·73; p=0·45). This remained the case when stratified by sex, and when those deaths from external causes were removed from the analysis. However, there was a significant increase in suicide mortality with an SMR of 6·85 (95% CI 2·22–15·98; p=0·002; table 1). Although the suicide-specific SMR was significantly increased compared with the general population, if there had been two fewer deaths by suicide, this result would have been non-significant, although the effect size (SMR>4) would still be indicative of a strong effect. Table 1 shows detailed SMRs for the study cohort."

and

2) Jason, Corradi, Gress, Williams & Torres-Harding https://sci-hub.st/10.1080/07399330600803766 which uses National CFIDS Foundation Memorial List a cohort of just 144 deaths.

"Table 1 presents the reason for death among the 144 individuals where this information was available. The three leading causes of death were heart failure, suicide, and cancer, accounting for 59.6% of cases. In regard to gender, 74.4% of this sample were female and 25.6% were male, and this difference was significant at the p < .01 level using a "

Yes, the problem is initially ME/CFS is not recorded in the Electronic Health Record (or diagnosed for some people) and seen as a contributing factor worldwide. Death certificates only have a few spaces for the recording of data contributing to death.

 

[hibiscuswahine]

Stigma is a major factor, increasing risk of suicidal ideation by roughly 4 times. No surprise there.

Receiving disability benefits increases the risk of suicidal ideation? That's strange. Is it because people on disability have worse functioning, maybe more social isolation?

Yes, people met criteria of their government’s disability benefit schemes so have higher assessed disability (usually in relation to other chronic conditions).

People with reasonable social support (or income caps on benefits, depends on country) often do not go on disability benefits. This indicates people on disability benefits are more vulnerable, often due to other health comorbidities.

Sometimes if a person is on the cusp of a severity criteria (eg, severe - housebound, and see they are heading towards becoming very severe bedbound) and because of stigma, negative interactions with GP, other medical professionals like psychiatrists etc, and the difficulty getting a benefit/care in their country or lose social support (partner, family), and other factors individual to them, may start having suicidal ideation, resurrect suicide plans of the past and complete suicide.

Some will also have clinical depression or other psychiatric disorders making them at risk of suicide.

There are also cultural factors that moderate suicidality.

Edit: typos

 

[Sean]

I wonder if being inappropriately and relentlessly psychologised and having our reputations smeared for decades by, well, just about everybody might be a significant factor?

Apparently the source of psychopathology is never the way we are treated by those imposing the diagnosis of psychopathology.

Who is mentally and morally ill in this scenario?

 

[RedFox]

Edited to add: Stigma to being on benefits.

I feel pretty low whenever I buy food with food stamps. (For non-Americans: If you have low income, you get a card with money for food only. It was actual stamps long ago.) Nobody in the store knows I did everything right in life, then became disabled.

 

[RedFox]

“The only protective factor is being married, which is not modifiable on an individual level.”

Unwarranted gloom there about the prospects for Boston Dynamics coming to market with affordable empathetic anthropoform robo-spouses.

I collect Childhood Disability Benefit--essentially a disability pension off a parent's work record--I lose my benefits permanently if I get married. Luckily I've never wanted to.