Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Chu, Jason et al

The authors note that this is important work to look into those who attempted suicide and that data is tricky because ME (and suicide) is not always diagnosed nor on the death certificate. I would be interested to see data for all deaths but given what we know re: ME diagnosis (and likelihood of severity being noted), autopsy and likelihood of cause of death being attributed then would guess that is another issue. But it shouldn't be. It is relevant when they talk of those being bed-bound as 'protected', to check whether that is the case (given lack of support would have issues on health as well).

Some of the things in this article are powerful:
"I once attended a webinar given by a former [disability benefits examiner] who told the doctors present that their supportive documentation could literally save lives. He had had a few clients die after their benefits were denied."

"I know of several situations where people have died by suicide or considered it, yet they did not consider themselves depressed. Instead, as noted earlier, factors like severe symptoms, decreased function, poverty, etc. played a bigger role."

Psychology in its proper sense should begin with fixing the situational (which is effectively what BPS ideology prevents), taking the hot iron off the hand before you assess if it needs treating. Turn access to those basic needs into sources of threat (maybe you are imagining the iron) and what do you have?

Indeed I think it might be even more 'straight-line' than people might like to pretend. Support system and basic safety and needs being fulfilled (without that hanging as constant threat) is supposed to be one key protective thing against suicide. Along with options. BPS knows this.

This touches on things like lack of these functional and supportive aspects. It also notes a lack of belongingness (which has to be laid at the door of those who push and suck up dodgy ideas). It notes the depression link that has been claimed is more complex than suggested (saying such diagnoses were sometimes made post-hoc, and this data doesn't necessarily bear it out).

I always worry that a well-intentioned suggestion be twisted to send people to the very ideology that underlies these issues existing to such an extent. I worry that the suggested pathways are naive without a significant change to the system and flushing out of misguided ideology (if we are to be required to keep to such polite terms). Without massive compulsory re-education alongside this people will just get churned into it as a back-coverer, probably closing-off access to the identified aspects needed.

Sending people to mental health departments, whatever form, with the current climate would be seen as a threat to many, and for good reason. Such a path has served to remove 'informal support' by making them invalidated/support be told 'they'd better not get involved' (which is the message mind-body and mental health first aid directly send out so is everywhere - and would also need to be targeted).

In the UK IAPTS where most would be sent uses the exact same 'LTC' CBT that was signed off based on using CFS-ME as a blueprint and does not address the functional issues mentioned. How will it be safe? How will such triage not create more problems re: the illness being understood and researched biomedically long-term?

 

Some big questions I think are timely and relevant are:

- how many suicided/attempted rather than end up somewhere that would do their health more harm (and maybe remove their voice) ? Or all the variations of threat this is used as to prevent access to support stated as the issue at hand

- I don't see how cfs-CBT(+GET) is much different to a conversion course (other than everyone around you being trained to believe the same). If this is the case what is the potential psychological harm, and the cycle that creates with physical health/support? I'm imagining a situation where they cannot be accepted/get their other functional needs unless they mismanage/deny their illness leading to worse health and so on. This is relevant in many ways but including ending up with the same practitioners (how could someone who ingrained to think one way tell you the opposite without that causing trust issues/damage?).

- how many could not tackle problematic situations or bad behaviour towards them as others would be able to due to the BPS ideology polluting any support network, thereby exacerbating rather than helping any existing issues?

- what stigmatisation messages have affected access to key support, and where/what has been the source?


I'm sure there are also some simple questions that could be asked to all those who have had ME for enough years (so seen the worst of it) regarding their fears, how real/deep they are (and triangulate this with facts so it can't be twisted into 'perception or marketing' issue), and what they would need to see change to feel safe in accessing help for all/any of the above things identified.

This is an urgent issue to address as it is accelerating the wrong way, and needs blunt things like memes and postcards saying something like:
'don't harm and taunt me by saying 'mind-body', to pretend you're not a bigot whilst being a bigot. Educate yourself. #puppetstrickedintobullyingthedisabled '
(sorry I don't have better words - I'd say 'this' psychosomatic foot on the neck via 'the public and allieds' is currently multitudes worse than it has ever been in daily onslaught so mincing words..).

Just like physicians need to be taught PEM means they cause harm with exercise they need to know that saying mind-body to someone with ME is revolting behaviour trained into them not 'something up for debate that is helpful'. I suspect the short courses through workplaces in mind-body and mental health first aid other types of 'management' stuff are hooking people into these ideas (from where pop psych and other media takes over, along with the power of numbers so people all believe they are right because they've all being told the same), so someone needs to be targeting these strongly to sort out their mis-messaging re: ME.

 

I often wonder what hides beneath suicide causes, how much could be known if it were checked formally. It's been ongoing formal policy for decades to never speak of causes of suicide, and speak of it as little as possible, as it's alleged that some people follow through where they wouldn't have otherwise (fishy, but it's a belief).

If we could know many of the causes, how many of those would we find the typical scenario of: I have no quality of life or means to survive because of illness, I asked for help, I was told I wasn't ill.

But we literally can't know, because of beliefs about social contagion of illness. Lots of truth hidden behind the privacy curtain of medicine.

 

This may be why suicide should not be a taboo subject and not have a rule against its discussion, even here.

 

It’s often framed as an impulsive, irrational act that could have been allayed had a seasoned CBT practitioner intervened.

However, I would suspect that in many instances, suicides in the ME community are the picture of rationality. Individuals facing homelessness with a debilitating disease take a perfectly reasonable defensive measure against intolerable suffering. I can’t imagine existing on the streets with this disease, and it haunts me that many likely do.

 

Indeed. I have remarked before here on S4 that for many ME sufferers who take their own lives, it is voluntary euthanasia rather than suicide.

I know i have considered ending it many times & am not even that severe compared to many. I carry on because i dont want to traumatise the people who love me. I'm pretty sure I wouldnt be here if it werent for that. I honestly dont know how many very severe sufferers go on, its beyond me they are some of the most courageous people on the planet. Particularly when you remember how perfectly healthy people wet themselves at having to stay indoors for 3 months except for a daily walk!

But its not that i dont want to live, I DO! I just want to actually live rather than endure/survive. Its quality of life that is important and that has nothing whatever to do with my illness or the physical suffering of it. It's the all round BioPsychoSocial picture that makes it intolerable.

A picture which would be able to be utterly transformed if everyone saw ME in the same way as (for example) MS. There are no problems that make my life utterly intolerable, that i would still have if I had an illness that friends/family/neighbours/general society/government/local authorities etc saw as being genuine, serious, not my fault & not changeable by me.

Those problems would all be entirely fixable.

How perverse is it that a bunch of psychiatrist/psychologists actions have created a situation where their own actions are what make me not want to live. If they would all just sod off I would be safe and happy, despite being just as ill as i am now.

 

This whole ideology that " ME is in the head ", has persecuted the pwme community for decades and certainly contributed to the suicide of some... this is beyond doubt in my mind and deeply outrages me, while breaking my heart every time.

Based on their own false beliefs about ME, these people prevented suffering and vulnerable people from accessing the support they needed, monetary, physical and psychological. These supposed professionals have hurt pwme's being and dignity by torturing them with their lies, causing these pwme to lose confidence in their voice and increasing their already heavy burden. Worse than not helping, these people made the situation worse for the patients. I sincerely hope that one day justice will be done.

So, following all this persecution, this absence of real help, faced with this horrible experience to be misunderstood and abandoned in great suffering, how can we be surprised that suicide comes to the mind of some...? As mentioned before, I think many would have chosen to live if they had had the help, support, understanding and compassion they urgently needed.

 

Yep they've just come up with more thinly veiled terms like 'mind-body' for allowing people to be ignorant to others' faces and claim superiority.

Instead of them seeing what harm they've caused.

 

I seriously tried to kill myself after having ME for a year, although the distress was added to by the extreme distress of my all-time favourite cat disappearing, probably killed by hunt-supporting neighbours. I spent a month in hospital.

I had to give up my house, having walked out of my job (which I hated) and failed to get another, eventually being unable to work due to ME. Could no longer afford to drive.

But I realise how lucky I am compared to many with ME. Mine hasn't got seriously worse, although it has worsened over the years. And I have a house, and country views.

 

Merged thread

Identifying and managing suicidality amongst people with ME: A Conversation with Dr Lily Chu and Dr Eleanor Stein

• Thread starter Bronc
• Start dateThursday at 4:00 PM

by
Bronc

During November of 2023 the UK government issued a five year suicide prevention strategy. This stated that there is plenty of evidence to suggest that there are several communities who are at much higher risk of suicide than the rest of the general population. The five year anti suicide strategy has a particular focus on those at risk groups.

People with ME belong to one of those communities yet there is no recognition of this in the 'new' guideline for ME which has issued by the National Institute of Clinical Excellence (NICE) nor in the Department of Health's recent consultation for improving services/quality of life for pwME.

There is a body of evidence to suggest that people with Myalgic Encephalomyelitis (ME) are one of those highly vulnerable groups. For example, in the UK a 2016 Lancet paper noted that, ‘our findings show a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with chronic fatigue syndrome’. It stated that people with ME have a more than six-fold increase in suicide risk compared to the general population.

Continues at:
https://forums.phoenixrising.me/thr...-with-dr-lily-chu-and-dr-eleanor-stein.91300/