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Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Chu, Jason et al
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JemPD
Senior Member (Voting Rights)
I have had a therapist tell me flat out that she could do nothing for my ME whatsoever. However i did have PTSD at the time (long after ME dx) & she said that support for that might, might help me manage the ME better - in terms of being able to pace myself better if not interrupted by nightmares, or by having adrenaline surges when triggered (leading to my ended up overdoing it). As you can imagine, i stayed with her & found it absolutely excellent. But that was Humanistic counselling, very non-freudian and non directive.
Edited for sense (spelling/tense errors)
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JemPD
Senior Member (Voting Rights)
I echo Trish's comment here @hope123 and I broadly agree with the main points in your paper (although i confess i not read all of it)
However personally i cringe whenever it's referred to as 'suicidality'. I think thats where the problems start in those who dont really understand the shit-show that is life with severe/very severe ME (not suggesting thats you of course @hope123 !)
But the fact is that Nobody says a sufferer of other currently incurable conditions who want to go to Dignitas*** for Voluntary Euthanasia is 'suicidal'. Any more than we call people who enable euthanasia 'murderers'. Or people who have to euthanise their pets "animal murderers"
I am not nearly as severe as many, but I have wanted it to end it all many times. But it's not remotely that i am depressed or suicidal. I WANT TO LIVE!! I can tell you, sobbing with joy at the idea & grief at the impossibility, all the things i would do tomorrow, the wild fantasies of going to the shop on my own, going horse riding or out for coffee with friends, let alone going on holiday or getting a job. Oh the life i could live if the ME improved. Depressed people cant usually do that.
But i very much do not want to live through another 20yrs the same as the last 10, & have thought very seriously about ending it on several occasions. I'm only continuing on because i love someone who would be traumatised if i ended my suffering. (note there that i said 'ended my suffering, not my life - i dont have a 'life'). I would endure anything to protect her. But thats what life with ME is, an endurance test.
Wanting to bring that test to a close doesn't make me "suicidal".
I'm not suggesting you don't know any of this @hope123 I'm just suggesting that it might help one of the issues your paper is about, (ie the difficulty of appropriate treatment/support for those PwME who are thinking seriously about euthanasia), if we stopped calling them 'suicidal'.
That term is imho inaccurate in most cases & only serves to reinforce the idea that PwME are mentally ill.
Wanting to euthanise oneself during unbearable suffering is rational not mental pathology.
>I think in the US what Brits would call Voluntary Euthanasia is called Physician Assisted Suicide in the US??? Which i also think is an unhelpful term, because again i think there is a difference between euthanasia & suicide just as i think there is between enabling euthanasia & murder<
It's a huge, deep subject and i know people have strong feelings on the subject so i'm really sorry if i have offended anyone with these comments. I recognise mine is not the only valid point of view.
Jem, your post is absolutely brilliant. Absolutely. And it bears repeating: "Wanting to euthanise oneself during unbearable
suffering is rational not mental pathology." I had a friend, a GP who finished himself off when he received a diagnosis of pancreatic cancer. He was a brilliant man. He was not mentally ill. I had another friend who was given a diagnosis of schizophrenia, and he was an intern at the time, and came from a well to do family , so supports were never an issue. He decided, knowing the illness, he did not want to go on that road. People who have severe ME are in a vise all day and night, and this is not really understood well by the healthy. They think: ah, he/she is resting. NO, they are lying there often wracked with all kinds of unbearable symptoms. Some which feel as if they are dying. I believe Dr. Davis has on more than one occasion described what it is like. There is no adequate funding for this illness, not enough researchers. What is to be expected? Everyone wants to live. But to live in a reasonably bearable way. I do not wish to offend anyone either. But the truth is the truth, and to call folks suicidal or mentally ill is actually imposing more suffering on them. I also know that mine is not necessarily a majority outlook. Forgive me if I am too intense about this.
This is a much belated response but I want to respond anyway. This is my point of view and not necessarily my co-authors (i.e. I don't know all their views about it) so I want to make that clear.
I may be a bit unique in that I have worked with people with other conditions (not ME/CFS: cancer, multiple sclerosis, Alzheimer's disease) who wanted to end their lives because they were so sick. There were lots of things they wanted to do but they could not do them. In fact, I was asked by a few for direct help during a time when it was illegal in my country.
I know their feelings aren't the same necessarily as people who were depressed but we still used the word "suicidal" because that is the term most people - lay and professionals - most understood then and even now. In my experience, we do use it for people affected by other medical conditions. If there is an alternate term that is understood/ acceptable by most professionals/ the public, we would not be opposed to using it.
These issues are extremely complicated medically, legally, ethically, and emotionally. These aspects also can differ greatly between countries, cultures, etc. which is why my co-authors and I did not delve into them. They would draw attention away from the other topics and would benefit from a paper focusing solely on them.
(In the medical situations above, I and my staff were able to help our patients in different ways. In some cases, the "double effect" meant that administration of certain medications could ease pain while increasing the risk of death but that was both legally and ethically acceptable (yes, even by some religious authorities). Just for the record, clinicians have been helping patients die for centuries and even in countries that outlaw medical aid-in-dying. One of my university professors was internationally known for bringing this topic into the public eye. Clinicians gave pills to their patients and gave them a 'warning" about its risks and benefits. Of course, this is done very cautiously as clinicians can be prosecuted for such actions by governments, medical boards, and even families who opposed the patient's actions.)
Snow Leopard
Senior Member (Voting Rights)
The problem is that depression (or anxiety) are symptoms, not causes.
The underlying causes are the lack of satisfaction of human needs, but few in the field (researchers or clinicians) bother to actually map the relationships between human need and satisfiers or lack thereof.
I think there is too much focus (in the field of suicide) on the acute aspects -
stopping suicide related behaviours or focusing mental health "treatment" (drugs and CBTs) or "management" and too little focus on the underlying factors. Focusing on acute suicidally might make a goo statistics, but it does not reduce long term suffering.
Suicide screening questionnaires in clinical practise are often worse than useless for several reasons. The first of which, it requires both help-seeking behaviour for someone to show up and answer the questionnaire accurately (in which case, you don't need a questionnaire, you just ask the person are they feeling suicidal) and poor sensitivity and specificity. Some people may report suicidally but unlikely to go all the way. Others may not feel depressed until the moment they actually take their life. Too much focus on suicide rates (or attempt rates) itself misses the big picture. Both of my examples may have the same underlying causes (lack of satisfaction of human needs), and the solution in both cases is not to focus on acute mental health treatments, but increased social and economic accommodations.
I realise there is a huge bias in the field, namely there is long held belief that psychology or psychiatry can fix problems of suicidality, when in reality the role of these field is more akin to fire-fighting at best and the real solution requires social change. Which is of course much harder to solve.
I really really really wish someone would study this in depth - focusing on the human needs aspect of individuals suffering from 'moderate'-severe chronic illnesses in a great deal of depth.
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Snow Leopard
Senior Member (Voting Rights)
@hope123
Additionally, I partially identify with the "Maria" case study (on a disability pension, no partner or kids), although I am much younger and have been ill since I was a teenager (and I have a different pattern of symptoms).
I can tell you that the proposed interventions for Maria, are not only mostly useless, but harmful in the case of amytriptiline which caused me severe side effects (I could not stand up due to severe OI due to the medication) and led to a health setback, which in turn increased feelings of depression. I can tell you, no patient gives a shit about "mouth feels a bit dry".
Suicide prevention helplines are another case of non-evidence based interventions that are frequently assumed to be useful without any evidence. No one has bothered to study the effect on chronically ill patients long term. Those of us who have severe chronic illnesses who have tried to call such lines know that the lack of practical help from such lines can actually increase feelings of depression!
Additionally, I partially identify with the "Maria" case study (on a disability pension, no partner or kids), although I am much younger and have been ill since I was a teenager (and I have a different pattern of symptoms).
I can tell you that the proposed interventions for Maria, are not only mostly useless, but harmful in the case of amytriptiline which caused me severe side effects (I could not stand up due to severe OI due to the medication) and led to a health setback, which in turn increased feelings of depression. I can tell you, no patient gives a shit about "mouth feels a bit dry".
Suicide prevention helplines are another case of non-evidence based interventions that are frequently assumed to be useful without any evidence. No one has bothered to study the effect on chronically ill patients long term. Those of us who have severe chronic illnesses who have tried to call such lines know that the lack of practical help from such lines can actually increase feelings of depression!
*Raises hand* Of course it would depend on how dry, but I would be worried about my oral health and ability to chew food properly.
Snow Leopard
Senior Member (Voting Rights)
That would be more than "a bit dry"
We don't know what is meant by "a bit". Dry mouth from this type of drug is a known risk factor for poor oral health, something not everyone is aware of and it is easy to downplay it (I'm not saying you are doing that, but I know at least one GP that does).
This is another brilliant post by Snow Leopard. My daughter has told me that one by one she has had to cauterise, repress, destroy, kill, and deny normal human needs--because the illness simply does not allow for much that is normal in human life.
Invisible Woman
Senior Member (Voting Rights)
@Perrier. I initially "liked" your post to acknowledge it but that really doesn't seems appropriate.
Then I put a hug & they're too smiley.
I can understand the need to repress etc. Talking about normal human needs that are not being met only to discover you're being offered no practical help, especially when even just talking can knock the stuffing out of you can feel like the ultimate act of cruelty.
As can offers to help manage how you feel about the situation without any intention of addressing the actual.problem.
Useless & dehumanizing.
Then I put a hug & they're too smiley.
I can understand the need to repress etc. Talking about normal human needs that are not being met only to discover you're being offered no practical help, especially when even just talking can knock the stuffing out of you can feel like the ultimate act of cruelty.
As can offers to help manage how you feel about the situation without any intention of addressing the actual.problem.
Useless & dehumanizing.
Yes dear Invisible Woman, yes. I recognise how many other folks endure this, paraplegics, and other suffering people. I am amazed by our so-called humane society that is capable of often just reducing people to something like 'things.' Maybe there is something in the human being that cannot endure sickness or suffering. I don't know. Maybe a burn out occurs when faced with suffering endlessly, I don't know. But the point here is that suicide is therefore a rational choice, much as none of the people really want it at all. Best wishes.
Invisible Woman
Senior Member (Voting Rights)
Absolutely,
But often when one tries to discuss this type of suicide as a completely rational choice the conversation is turned, by the listener, into a conversation about how to make you feel better, ignoring the fact that "feelings" have beggar all to do with it. It's about circumstances.
So, you're given no help to address the problems that could resolve at least some of the issues that give rise to suicide as a rational choice.
You're also often not permitted to even rationally discuss suicide in this manner.
It's adding of insult to injury and gets in the way of having grown up discussions about suicide, quality of life and practical ways to address some of the causes of suicide.
This is a nice guide to dealing with feelings of despair and suicidality. I hope it reaches the doctors it needs to.
It was good to see this - about BPS views of ME/CFS:
I would like to comment on the paragraph about sleep though:
Unrefreshing sleep is waking up feeling exhausted. In ME/CFS, that can happen even if you have had 7 or 8 hours, or even 12 or 14 hours of sleep. I'm not aware of any treatment for that, other than reducing activity. So often, unrefreshing sleep is scooped up into the category of 'sleep disorders'. In my view, classing ME/CFS unrefreshing sleep as a sleep disorder makes as much sense as saying that people with the flu have a sleep disorder because they feel rubbish when they wake up. I wish we could stop seeing the 'unrefreshing sleep' symptom grouped with sleep disorders in care guidelines.
Even for actual sleep problems, such as insomnia, often the cause is pain. The paragraph says 'treating sleep dysfunction could be a practical way to reduce suicide risk' - and I guess it could. But if the 'sleep dysfunction' is unrefreshing sleep, there is no treatment. The problem is that for 'sleep dysfunctions', so often the response is advice on 'sleep hygiene'. And if the cause is pain, then being told to not have the laptop in the bedroom isn't going to help.Telling someone who is just hanging onto a will to live that they must not play computer games in the evening (possibly their only social interaction and source of joy), or must not watch Netflix in bed (often a very important distraction), or must force themselves to get up at 8 am every morning when their body is screaming for more rest could be damaging. Telling a carer that they must get their person with ME/CFS up at a certain time every day when the person simply cannot could cause stress and arguments that contribute to a feeling of isolation.
I think the evidence for instruction in sleep hygiene being beneficial, even in sleep dysfunction uncomplicated by ME/CFS is pretty weak.
That reference in the last sentence of the paragraph is
The Mediating Effect of Sleep Disturbance on the Relationship Between Nonmalignant Chronic Pain and Suicide Death
The study has problems.
This was retrospectively looking at patient records for some people who died by suicide and controls who did not. It seems to me that a scenario where developing mild chronic pain does not increase suicidality, but developing severe chronic pain, the sort of pain that keeps you awake at night, does increase suicidality explains this study's findings. So, rather than the answer being behavioural treatments to address 'comorbid sleep problems' as this study concluded (i.e. fixing the sleep problem will fix the suicidality), the answer is to fix the cause of the pain, or at least provide pain relief to reduce the pain (thereby fixing the sleep problem and the cause of the suicidality). Of course there is more to it, for example, perhaps people planning suicide told their doctor they needed something to help them sleep in order to get a stock of sleeping pills.
Anyway, I think the conclusion the ME/CFS suicidality paper made from the study:
And I think doctors should be warned that offering sleep hygiene as a solution to 'unrefreshing sleep' or sleep problems caused by pain is likely to be unhelpful at best, and might even contribute to patients feeling their problems are being dismissed as being fixable with a glass of warm milk at bedtime.
It was good to see this - about BPS views of ME/CFS:
I would like to comment on the paragraph about sleep though:
Unrefreshing sleep is waking up feeling exhausted. In ME/CFS, that can happen even if you have had 7 or 8 hours, or even 12 or 14 hours of sleep. I'm not aware of any treatment for that, other than reducing activity. So often, unrefreshing sleep is scooped up into the category of 'sleep disorders'. In my view, classing ME/CFS unrefreshing sleep as a sleep disorder makes as much sense as saying that people with the flu have a sleep disorder because they feel rubbish when they wake up. I wish we could stop seeing the 'unrefreshing sleep' symptom grouped with sleep disorders in care guidelines.
Even for actual sleep problems, such as insomnia, often the cause is pain. The paragraph says 'treating sleep dysfunction could be a practical way to reduce suicide risk' - and I guess it could. But if the 'sleep dysfunction' is unrefreshing sleep, there is no treatment. The problem is that for 'sleep dysfunctions', so often the response is advice on 'sleep hygiene'. And if the cause is pain, then being told to not have the laptop in the bedroom isn't going to help.Telling someone who is just hanging onto a will to live that they must not play computer games in the evening (possibly their only social interaction and source of joy), or must not watch Netflix in bed (often a very important distraction), or must force themselves to get up at 8 am every morning when their body is screaming for more rest could be damaging. Telling a carer that they must get their person with ME/CFS up at a certain time every day when the person simply cannot could cause stress and arguments that contribute to a feeling of isolation.
I think the evidence for instruction in sleep hygiene being beneficial, even in sleep dysfunction uncomplicated by ME/CFS is pretty weak.
That reference in the last sentence of the paragraph is
The Mediating Effect of Sleep Disturbance on the Relationship Between Nonmalignant Chronic Pain and Suicide Death
The study has problems.
This was retrospectively looking at patient records for some people who died by suicide and controls who did not. It seems to me that a scenario where developing mild chronic pain does not increase suicidality, but developing severe chronic pain, the sort of pain that keeps you awake at night, does increase suicidality explains this study's findings. So, rather than the answer being behavioural treatments to address 'comorbid sleep problems' as this study concluded (i.e. fixing the sleep problem will fix the suicidality), the answer is to fix the cause of the pain, or at least provide pain relief to reduce the pain (thereby fixing the sleep problem and the cause of the suicidality). Of course there is more to it, for example, perhaps people planning suicide told their doctor they needed something to help them sleep in order to get a stock of sleeping pills.
Anyway, I think the conclusion the ME/CFS suicidality paper made from the study:
and the inference that directly addressing sleep fixes suicidality is not warranted.
And I think doctors should be warned that offering sleep hygiene as a solution to 'unrefreshing sleep' or sleep problems caused by pain is likely to be unhelpful at best, and might even contribute to patients feeling their problems are being dismissed as being fixable with a glass of warm milk at bedtime.
Mithriel
Senior Member (Voting Rights)
I was very disappointed when they put unrefreshing sleep as a symptom of SEID giving it prominence equal to PEM. It is one of these things like fatigue where patients will accept the term as describing what they are feeling even though it is not exactly what they experience. Then doctors carry on quite happily with a trivial idea of what ME is. (If all that MS patients were offered was "difficulty standing up from a chair" they may well all agree they get it but their problems are not the same as someone in their fifties who has sat too long watching the tennis)
Basically, with ME you go to sleep feeling MEish and waken up feeling MEish. Why sleep should make your ME go away anymore than your RA is beyond me. It is a hangover from thinking fatigue is central to ME and the same as fatigue in other illnesses which it is not.
The tragedy is that ME does affect the sleep system I get very vivid colourful dreams when I am in PEM and my sleep quality is directly affected by my ME status.
The connection with suicide is probably quite simple, lying for hours at night too ill to do anything but no sleep leaves too much time for thinking. All the things people do to help themselves in that situation from getting up altogether to having a cup of tea are denied us.
And the whole question of pain ... I will only say that I had pain medication that let me sleep but it is no longer prescribed and many nights it keeps me from sleep.
Basically, with ME you go to sleep feeling MEish and waken up feeling MEish. Why sleep should make your ME go away anymore than your RA is beyond me. It is a hangover from thinking fatigue is central to ME and the same as fatigue in other illnesses which it is not.
The tragedy is that ME does affect the sleep system I get very vivid colourful dreams when I am in PEM and my sleep quality is directly affected by my ME status.
The connection with suicide is probably quite simple, lying for hours at night too ill to do anything but no sleep leaves too much time for thinking. All the things people do to help themselves in that situation from getting up altogether to having a cup of tea are denied us.
And the whole question of pain ... I will only say that I had pain medication that let me sleep but it is no longer prescribed and many nights it keeps me from sleep.
Invisible Woman
Senior Member (Voting Rights)
Once more I feel language is too loose and slippery.
Unrefreshing sleep - you could take it to mean -
Even if you sleep & no matter if you get many hours of sleep under your belt you still feel extremely ill. I would agree with that - I think I'm not alone in saying I feel worse immediately after sleep and then that fades.
Or
You simply can't get to sleep, when you do you keep waking up. In which case it's not unreasonable to wonder if you could improve sleep, could you ease some of the suffering. From that point then you have the issue of whether poor sleep is the cause or a downstream effect.
So, once again you have the issue of loose language that can easily be interpreted in several meaningfully different wags in combination with healthcare professionals who automatically put their interpretation on the ambiguous description when it's the patient's interpretation that matters. Then you add to that the language difficulties some of us experience & the rushed, inadequate appointment times. What could possibly go wrong?
Unrefreshing sleep - you could take it to mean -
Even if you sleep & no matter if you get many hours of sleep under your belt you still feel extremely ill. I would agree with that - I think I'm not alone in saying I feel worse immediately after sleep and then that fades.
Or
You simply can't get to sleep, when you do you keep waking up. In which case it's not unreasonable to wonder if you could improve sleep, could you ease some of the suffering. From that point then you have the issue of whether poor sleep is the cause or a downstream effect.
So, once again you have the issue of loose language that can easily be interpreted in several meaningfully different wags in combination with healthcare professionals who automatically put their interpretation on the ambiguous description when it's the patient's interpretation that matters. Then you add to that the language difficulties some of us experience & the rushed, inadequate appointment times. What could possibly go wrong?
Tom Kindlon
Senior Member (Voting Rights)
Merged thread
"Doctors with ME [Eleanor Stein and Lily Chu] Confront the Taboo of Suicide"
Interesting exploration of this sensitive topic
https://phoenixrising.me/myalgic-en...igue-syndrome/lily-chu-eleanor-stein-suicide/
A Twitter thread of mine with some extracts
A corollary I drew:
"Doctors with ME [Eleanor Stein and Lily Chu] Confront the Taboo of Suicide"
Interesting exploration of this sensitive topic
https://phoenixrising.me/myalgic-en...igue-syndrome/lily-chu-eleanor-stein-suicide/
A Twitter thread of mine with some extracts
A corollary I drew:
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Mithriel
Senior Member (Voting Rights)
This is a very important subject. Mental health treatment is denied to people with ME because either we dare not go to a practitioner or, if we do, they decide that "sorting" our psychosocial problems is the way forward. As with our physical problems no one in health care is interested in what we feel to be the problem but keep pushing their own ideas.
There are many on ME forums who feel they have reached the limit of what they can bear after years of superhuman endurance and they need support and hope.
There are many on ME forums who feel they have reached the limit of what they can bear after years of superhuman endurance and they need support and hope.
Agree with the second tweet 100%.