Grief in Chronic Illness: A Case Study of CFS/ME, 2022, Byrne

[Dolphin]

This is not biomedical research so I'm posting it here. However, it may be a sympathetic exploration of the topic and that there are no major problems in the paper.

https://www.ingentaconnect.com/contentone/imp/jcs/2022/00000029/f0020009/art00009

Grief in Chronic Illness: A Case Study of CFS/ME


Author: Byrne, Eleanor Alexandra

Source: Journal of Consciousness Studies, Volume 29, Numbers 9-10, September 2022, pp. 175-200(26)

Publisher: Imprint Academic

DOI: https://doi.org/10.53765/20512201.29.9.175

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief.

I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized.

I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study.

I then use this analysis to highlight some clinical challenges that arise should this claim receive uptake in clinical practice.

Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high.

If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated.

I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve.

Document Type: Research Article

Affiliations: TEMA-T, Linköping University, Sweden

Publication date: 01 September 2022

 

[Andy]

Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high.

Is it? I thought that it was the opposite?

 

[Hutan]

Yes, I agree that the literature is questionable. Often rates of depression on ME/CFS are not set in the context of rates in the general population - when prevailing rates are compared, the ME/CFS ones are often unremarkable. We also know that the tools for measuring depression are skewed by the incapacity that ME/CFS causes.

If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated.

I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve.

We are accepting of stories of higher suicide rates in ME/CFS than in the general population, and we know that there is grieving of losses. Does the expected sadness, and even the suicide necessarily equal depression? In some cases, even suicide may be the rational outcome of chronic pain and incapacity and a society that makes it impossible to meet basic daily needs, depression (as in, unwarranted sadness) is not present.

I haven't read this paper, there is a paywall. I'm not sure where the author is going with this idea of 'pathological grief' - from the abstract, it does not seem to be a particularly useful to distinguish it from depression.

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief.
....
I then use this analysis to highlight some clinical challenges that arise should this claim receive uptake in clinical practice.

I have to say, I'm surprised if it is true that the idea of grief caused by the losses of chronic illness is not already well accepted and applied in psychological counselling.

Linköping University, Sweden

 

[BrightCandle]

I think we will see a lot of the suicides disappear if we fund living with the condition properly and medicine accepts they have it and goes about doing all it can to understand it and treat the symptoms. That basic acknowledgement and a route to living will stop a lot of the suicides that occur, its mostly solvable in my opinion as its not just the grief its society gaslighting the sufferers that drives people over that edge (having stood on that edge quite a few times). Nothing destroys hope for the future than being continuously mistreated by medicine with no research being done, its not even that no one cares your ill its that they just wished you disappeared instead of admitting you were.

 

[DokaGirl]

Is it? I thought that it was the opposite?

Yes, that's my understanding as well.

ETA: spelling correction

 

[DokaGirl]

Yes, I agree that the literature is questionable. Often rates of depression on ME/CFS are not set in the context of rates in the general population - when prevailing rates are compared, the ME/CFS ones are often unremarkable. We also know that the tools for measuring depression are skewed by the incapacity that ME/CFS causes.



We are accepting of stories of higher suicide rates in ME/CFS than in the general population, and we know that there is grieving of losses. Does the expected sadness, and even the suicide necessarily equal depression? In some cases, even suicide may be the rational outcome of chronic pain and incapacity and a society that makes it impossible to meet basic daily needs, depression (as in, unwarranted sadness) is not present.

I haven't read this paper, there is a paywall. I'm not sure where the author is going with this idea of 'pathological grief' - from the abstract, it does not seem to be a particularly useful to distinguish it from depression.




I have to say, I'm surprised if it is true that the idea of grief caused by the losses of chronic illness is not already well accepted and applied in psychological counselling.

Linköping University, Sweden

Good point, @Hutan. Grieving losses in chronic illness is most likely accepted and included in counselling protocols.

However, because ME has long been considered a made up condition, practitioners may not acknowledge pwME have any losses to grieve.

In fact they may think we have gained much, e g. "not having to work, disability compensation, attention, and sympathy etc.

Of course, their beliefs and attitudes about pwME are terrible, as we have lost so much: health, respect, our old lives, relationships, trust, our jobs, careers, our homes, future plans healthy people take for granted etc.

 

[RedFox]

I think we will see a lot of the suicides disappear if we fund living with the condition properly and medicine accepts they have it and goes about doing all it can to understand it and treat the symptoms. That basic acknowledgement and a route to living will stop a lot of the suicides that occur, its mostly solvable in my opinion as its not just the grief its society gaslighting the sufferers that drives people over that edge (having stood on that edge quite a few times). Nothing destroys hope for the future than being continuously mistreated by medicine with no research being done, its not even that no one cares your ill its that they just wished you disappeared instead of admitting you were.

It will. It definitely will. Just providing every pwME with sympathetic doctors and the supports they need to survive would drastically reduce suicides. Disease-modifying therapies will reduce that even more.

 

[bobbler]

Yes, I agree that the literature is questionable. Often rates of depression on ME/CFS are not set in the context of rates in the general population - when prevailing rates are compared, the ME/CFS ones are often unremarkable. We also know that the tools for measuring depression are skewed by the incapacity that ME/CFS causes.

I don't know about other countries' data but in the UK depression is diagnosed by GPs and so I'd take any rates for those with ME/CFS with a massive pinch of salt because:
1. it was a systematic first misdiagnosis for many who eventually got an ME/CFS diagnosis - and that's only those who know of that because...

2. it was often not done by any sort of proper questionnaire or anything but

3. GP surgeries are private businesses and their 2 incomes are: approx 'money per head of patient registered' and 'payments for meeting targets on certain 11 listed illnesses'. For many years (and probably still now) depression was one of these and to reach said target x% who a GP listed as depression had to have 'been given a card to with IAPT phone number on'. That's it.

I'm sorry but if you've a load of actual depressed people on your books you can't drag in to just hand them said card, and are at 90% with a month to go, and have someone with probable or actual ME/CFS wandering in a lot because they've got symptoms then shove them an IAPT card and put depression on the notes ...

And yes, the don't ask don't tell regarding IAPT not diagnosing often, and indeed even if they do it doesn't change what is put on your notes, is also relevant.

I'd like to know the rate of those who since having ME/CFS have actual had accurate diagnoses of depression because BPS have dined out on this rumour-spreading of an effect caused by misdiagnosis for a long time.

 

[bobbler]

I think we will see a lot of the suicides disappear if we fund living with the condition properly and medicine accepts they have it and goes about doing all it can to understand it and treat the symptoms. That basic acknowledgement and a route to living will stop a lot of the suicides that occur, its mostly solvable in my opinion as its not just the grief its society gaslighting the sufferers that drives people over that edge (having stood on that edge quite a few times). Nothing destroys hope for the future than being continuously mistreated by medicine with no research being done, its not even that no one cares your ill its that they just wished you disappeared instead of admitting you were.

It's shocking how society rather than accept and help someone to live at 70-90% would rather crush them to 25% of function and then abuse them. No matter what their skills and ability were in the first place. Probably many more productive with adjustments than 95% of the population if actually respected, treated right with adjustments and support and not made to carry that even bigger disability of the abuse encouraged by the system. Because that makes people well my backside, people hold onto their bigotry so tight.

I notice with dismay that less and less PEM-first info is going out from the primary charities. Exactly what BPS wanted. Just 'broken people' rather than people who could actually function it were treated like a disability, instead of a 'sort em out programme'. I don't believe for a second this comes from medicine or society wanting to help, it's being unprepared to put up with any different to normal in 'behaviour', having to be considerate and admit the consequences of that (PEM being important here), even if it kills brilliant people who are more productive than them.