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

Abstract

Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and managing suicidality in an outpatient medical setting. A clinical case is used to illustrate how information from this article can be applied. Characteristics of ME/CFS that make addressing suicidality challenging include absence of any disease-modifying treatments, severe functional limitations, and symptoms which limit therapies. Decades-long misattribution of ME/CFS to physical deconditioning or psychiatric disorders have resulted in undereducated healthcare professionals, public stigma, and unsupportive social interactions. Consequently, some patients may be reluctant to engage with mental health care. Outpatient medical professionals play a vital role in mitigating these effects. By combining evidence-based interventions aimed at all suicidal patients with those adapted to individual patients’ circumstances, suffering and suicidality can be alleviated in ME/CFS. Increased access to newer virtual or asynchronous modalities of psychiatric/psychological care, especially for severely ill patients, may be a silver lining of the COVID-19 pandemic.

Open access: https://www.mdpi.com/2227-9032/9/6/629

 

Can it really?

My biggest stressor, since I got semi adequate pain meds sorted out, is the DWP (benefits agency), forms, and assessments - and of course forms in general as everything in the UK needs a damn form.

If anything causes my death it will not be ME (that will be a secondary factor), it will be the DWP refusing to accept that I am sufficiently ill to qualify.

Medicine or mental health has sod all to do with it - remove, or attempt to remove, my means of surviving, and guess what...I won't survive.

 

Not as long as medicine discriminates against us and refuses to work on the problem, definitely not. The biggest consequence by far is the resulting ostracization, which is deliberate and 100% the fault of medicine. Most of those consequences are directly created by the neglect; end the neglect, end most of the problem, certainly all the ones created by willful neglect.

 

I guess it depends if one assumes suicide can only be caused by mental health problems rather than a logical and rational choice where one chooses the lesser of two evils.

The burden of disability in ME is massively underestimated.

Very ill patients already face enforced isolation and when you add in the disbelief, moral assumptions & judgements freely made about ME patients in addition to lack of support and punitive benefits systems is it surprising that some choose suicide?

 

Personally I find the most common triggers of suicidal ideation relate to interacting with benefits agencies.

No amount of psychological intervention aimed at me would impact this. The only solution is to create a fair, honest and reliable benefits system.

 

having a doctor who refused any help regarding the dwp ie a supporting letter setting out how disabling this disease is really helps no one his excuse was he did not do politics .

 

I wonder if that doctor filled out forms for people with less controversial diseases.

 

@Invisible Woman

Exactly.

 

ME is horrendous. Added to this is the mistreatment and cruelty that is directed at a pwME from all sides.

I don't know how successful counseling is, or has been for others with ME. It's not what's kept me going.

 

One of the problems I have with the idea of counselling or therapy of any kind is that it doesn't actually change anything. It won't change the opinions of the people who can make a difference to my quality of life, it won't undo the decades of neglect, it won't prevent neglect in the future. The people I interact with - NHS staff at all levels who have access to my medical records and see I've been labelled, family and friends who really don't understand my life and how often I get dismissed, insulted, and gaslighted - won't be changed by any counselling directed at me. The labels are still on my records, my family and friends see nothing different. So why even bother putting myself through therapy of any kind?

 

Counselling has it's place but when it is used as a sticking plaster measure it can cause more problems than it helps.

For those who are dealing with discrimination and neglect on the scale we face it then it isn't going to resolve the issue. Worse still it allows the authorities the get out clause of providing support, while being fully aware it's the wrong kind of support. With the right kind of support there'd be less need for it.

In addition, for patients like us who don't have the capacity to perform what others would deem to be basic self care as often as is considered normal then counselling that doesn't change anything or improve our lot in any meaningful way is harmful because it causes unnecessary expenditure of resources. That just makes life even harder. That's assuming the counselling itself doesn't undermine the patient or gaslight them.

 

Though in theory I would agree with this, but not when those promoting and providing the counselling are the same people who are dismissing, deserting and gaslighting.

Though I personally have had positive experiences of psychotherapy, only a cursory glance through patient forums indicates that psychotherapy provided through the UK ME/CFS specialist services is often part of the problem, and through the frequent imposition on patients of profound misunderstandings of ME is for many ultimately likely to increase rather than reduce suicidal ideation.

 

Adding another layer of complexity is increasing availability of Medical Assistance in Death in Canada. i know of at least one patient who has been approved for it.

i have read the paper and find it difficult to wrap my head around the fact that there is now guidelines for suicide prevention and screening but still no treatment or understanding of the disease.

 

Yes, what happened to good old fashioned Rogerian non directive counselling? I guess it is not currently fashionable. Early on in my ME I saw a counsellor in this mould and found it a positive experience, though we have no research evidence of the value of this in relation to ME. It could be that for some/many just taking on any additional non essential activity could trigger PEM and/or longer term deterioration.

My personal issues are with the ‘pre-determined direction’ rather than the psychotherapy type.

My potentially inaccurate memories of CBT when first mooted, are it was central to the process that any objectives were mutually agreed by the practitioner and the client, which is completely contradicted by PACE type CBT. Some years ago I undertook a course of CBT via my GP practice aimed at overcoming my resistance to pacing, and at the time it seemed a positive experience, though this was only an option because at time my ME was in relative remission, and it was undertaken by a newly qualified clinical psychologist willing to do her research and work with my objectives. However again with n=1 we have no research evidence to back up anecdotal arguments for ‘supportive CBT’, just the PACE evidence that PACE type curative CBT does not work.

On patient forums it seems that several at least of the UK specialist services offer or have offered psychotherapy aimed at treating ME by resolving presumed underlying psychological trauma. I would have thought that reliving disturbing and distressing trauma in moderate to severe ME could almost be guaranteed to trigger PEM and potentially longer term deterioration. Certainly the forum accounts of this I have seen suggested just such negative consequences are common.

The research paper heading this thread has identified a potential issue, suicidal ideation in ME, but like ME itself, the existence of a problem does not necessitate what is effectively arbitrary action/treatment if we have no idea of what action is appropriate.

It might be arguable that counselling and/or psychotherapy are sufficiently evidenced in other parallel circumstances to justify their use in ME, but such should be treated with caution given the specifics of ME are such that any exertion either physical (attending any intervention) or cognitive can be harmful.

I would argue that solving the practical difficulties we face, issues of daily living, accessing employment and/or benefits, appropriate housing, etc should be addressed before psychological factors, unless of course any psychological issues are so pressing that they interfere with daily living. Certainly the comments here suggest that our experience is that medical disbelief and/or gaslighting and practical difficulties are significant determinants of any suicidal ideation.

Further until we have more concrete evidence on the specific value of psychotherapy or counselling they should be considered, for those that do not have identified additional mental illnesses, as a lifestyle choice or recreation activity.

 

Would this be a useful research project, to provide people with ME good social worker, advocacy and carer support and see how this impacted their activity levels/types and quality of life?

 

This is a well written and informative paper.

I have many of the listed risk factors for suicide. What is preventing suicide is the support of my family. Once they're gone, I'll be in a bad situation.Hopefully by then I'll have managed to build a a secure and stable foundation for a life with acceptable quality.

I also note that suicide is often seen as having a psychological cause but the risk factors for suicide don't have much to do with a psychological cause. The psychological component is a downstream effect. Psychotherapy isn't going to make pain go away, provide housing, clothes, food and water, create social inclusion or allow me to do something meaningful with my life.

Poverty, low quality of life in combination with little hope of improvement seem to be the big cause of suicide. These need to be adressed. Let's find some real hope in realistic plans to improve these for ourselves and others.

 

I very much agree with you Invisible Woman. It is often a rational choice based on the lesser of two evils. Brilliant post, concise and to the point. People aren't stupid. A life shackled as in chains with unrelenting discomfort, and pain, or a final release. This kind of thinking is not mental illness. It is logical and rational. Yes, it is horrifically painfully for all of us on the side lines. I wish the researchers would get some fire under their butts, so that there would be a chance for all the young folk.