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

Discussion in 'PsychoSocial ME/CFS Research' started by Kalliope, Jun 12, 2020.

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  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    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
     
    Last edited: Jun 12, 2020
  2. cassava7

    cassava7 Senior Member (Voting Rights)

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    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.
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
    Last edited: Jun 14, 2020
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  4. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    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.
     
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    It wasn't, then it was, then it wasn't :confused:
     
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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    It's on sci-hub.

    Thank you, sci-hub.
     
  7. brf

    brf Established Member (Voting Rights)

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  8. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    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.
     

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