Factors that influence how relationships adjust to a diagnosis of chronic fatigue syndrome: A grounded theory, Swinton, 2022 (thesis)

This is not biological research so I'm posting it here. But I'm not necessarily criticising it: couples counselling can have a place so perhaps this is fine.

Via Dr. Marc-Alexander Fluks

Source: University of Wolverhampton Date: January and May 4, 2022 URL: https://wlv.openrepository.com/handle/2436/624944

https://wlv.openrepository.com/bitstream/handle/2436/624944/Swinton_ProfDoc_Thesis_Redacted.pdf

Factors that influence how relationships adjust to a diagnosis of chronic fatigue syndrome: A grounded theory
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Jennifer Swinton - Faculty of Education, Health and Wellbeing, University of Wolverhampton, U.K.

Abstract

Background

There is relatively little research explaining how an intimate couple jointly adapt to a diagnosis of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). A large body of literature exists that investigates the impact of ME/CFS on the individual and a smaller body of work addresses the effect on the partner and the influence the partner has in the management of the condition.

This research, therefore, sought to illuminate couples' experiences of ME/CFS, in order to gain a greater understanding of the factors that influence adaptation to the condition in their joint relationship. A Grounded Theory Methodology was adopted to create a tentative theory of adaptation which could supplement the current evidence base and begin to inform future professional practice.

Method

Eight semi-structured interviews were conducted with experiencers diagnosed with ME/CFS. Five interviews were conducted with the experiencer alone and three interviews also involved the experiencer's partner. Interviews focused upon the couple's experience of living with and adapting to ME/CFS. Interviews were analysed following the constructivist grounded theory principles outlined by Charmaz (2006).

Findings

A tentative model of reconciliation was constructed which explained the couple's journey from disruption towards adaptation. This tentative model explained how the couple manage 'fundamental disruptions' to their identities and expectations brought about by the introduction of a powerful entity ME/CFS ('Illness identity or It'). The couple managed these disruptions by working through periods of 'loss and grief' using skills such as humour, communication and understanding. Through this process the couple were able to identify and begin to implement appropriate 'adaptations' that helped them to manage the impact of ME/CFS within their relationship.

Conclusion

This research identified how ME/CFS impacts upon the individual with the diagnosis and their partner and illuminates that the process of reconciling with loss and grief and implementing adaptations is a joint journey. It highlights the importance of considering the couple and not just the individual in the management of ME/CFS and makes tentative recommendations that could inform professional support interventions in the future.

 

Relationships, uh? I remember the concept. In the before time.

No more. That's how it affected my relationships. No more and with no end in sight, thanks to this dystopian nightmare.

Probably without the discrimination and pseudoscience it would have been OK. But the discrimination and lies and gaslighting and all the other nasty stuff, just doesn't work out in real life.

It's one thing to deal with the consequences of illness. It's so much worse to deal with this and gaslighting and lies and pseudoscience distorting everything happening to you.

I think on the whole the gaslighting and systemic failure in healthcare ended up doing most of the harm here.

 

Thanks Hutan for your detailed review and feedback. I was struck that it might be useful feedback to pass on to her. Please do.

I suspect this will have been completed well before the NICE guideline was updated and published. These things take yonks to move through the academic systems.

Reflection is important in any research and if others can see perhaps what she might be missing / not aware of then I would hope being approached with constructive feedback would help to move this on.

I suspect her supervisor had little experience or knowledge of the history and background. Dunno.

Please invite her to join the forum. If you get no response please let me know and I could try later on.

 

Deserves a dedicated reading which I don't currently have the reserves for, however on a skim through it looks like a thorough piece of work that stands up on its own terms. The author had sheer bad luck that their period of study didn't encompass the publication of NICE 2021, although she does presage that at para 5.6.1. page 168. I didn't find the references to Larun and similar authors to be inappropriate and overall the references seem balanced given the context of the study.

It's difficult to not cheer on "one of our own" (the author declares her status a person with ME) for such a huge piece of work, but from the (very) little I know of the field I can't see this as being other than solid authorship. To the extent that I want to criticise it, it is because it isn't something else, which is a wholly unfair basis for criticism and simply down to a difference in preferred perspective, basically I want to bang on about social not marital conflict, but that's not where this study is located.

 

ooh above my capability right now to get into it but the fact that this is absolutely about using Grounded Theory (as a thesis I guess there are methodology marks to tick off - and the second part where there are tables rating the quality of the references used by various different models is another) I think probably needs to be underlined.

This person had to pass their course effectively.

I do think that this choice of Grounded Theory and methodological approaches warrants some big discussion in the general, and perhaps this type of piece is good enough as any in which to contextualise that re: its validity and weaknesses.

They/she very ironically seem to have taken an approach based on observation rather than ethnographic for an area such as counselling where you'd think being led by the patient's experience (after all she does prefer the term 'experiencer') is the all-important.

I also have issues with using 'coding' when it would be based on sessions that would be couples-based and involve people with ME - energy-limited condition where they are not entirely in control of what topics get brought up so lots of room to 'go beyond their energy limits' in each, and you'd hope she would be aware and would have written that when people are talking beyond that point many with ME/CFS might be 'talking' but they don't have that same level of being able to really think and get their words right to put into this after a certain time.

Like someone with any other type of cognitive fatigue being put on the spot as different issues are levelled at them their ability to find the right words, terms or sheer exhaustion to get out of there will have a huge bearing. Where is the context noting how this would affect the 'data' ie discussion of patient's need for adjustments like this?

 

It would be interesting to see research on how the relationship between doctor and patient changes once the patient has been diagnosed with ME/CFS (from the doctor's point of view).

It would also be interesting to see research on how the doctor's attitudes to a patient change once a doctor (any doctor) has flagged the patient's medical records with any number of insulting comments, from the point of view of both patient AND doctor.

 

Agree with everything that you have said. And very much how contextualised this needs to be to imagining what this author would have been sat in the middle of. It could present a pretty fascinating historical document (of the influence of paradigms) if paired, by herself, with updates over the coming years.

Psychology is a department but it is also something a human can have in layman's terms I find it very clear that only the psychology of the 'experiencer' is put under judgement here and none of that of those who created these dodgy theories or indeed the other partner in the room. I fear now a lot of what is done under the dept name is just the latter hidden under pseudo-methods and a burgeon of poor literature masquerading as literature, but it isn't like someone doing a thesis where this is believed could submit without a review hitting the orthodox standards.

It's hard to contextualise how someone could have submitted this if putting the new facts of the guidelines (and the research quality assessment) against years of research based on an opposite premise and years of literature self-fulfilling that debunked list of ideas. What a time to have been collecting this data and writing up.

There are still points of fascination worth fishing out here given her chosen area (couples). Whilst I note the 'commonality' between the 'other partner in the room' is that they are in a relationship with someone who has ME/CFS I find it quite shocking that someone could write something that would reduce the individual to personality issues within this - seeking them out based on prior research (and not confirming them with 'diagnoses' - not there is such a thing for perfectionism) and coding based only on their mention.

The 'psychology' and ideology of those who created these old guidelines, in my mind, are entirely responsible for much of this 'conflict' - if raw data were to be reanalysed to identify what % of 'issues' brought up were under these false labels and accusations (yes, I've used that word as it is accurate) couples have discussed. This certainly leaves room for 2nd,3rd, 4th acts as such orthodoxy, information, propaganda changes (and such words and attributions stop being put into both partners' mouths).

It very much did place blame and power differentials that simply would not be present if compared with 'couples therapy' for other conditions with normal guidelines and media articles for the last few decades. That would be a good comparison - to show the damage done merely by these dodgy guidelines by comparing with other illnesses that have little 'cure' but also less 'bigotry charading as treatment'.

And indeed that could indeed be a great next move for the author themselves to take this data and - if they are keen that information and training could change things - redo to show how much the 'attributions' (blame) of old guideline was responsible for in 'matched pairs'. Or indeed could be longitudinal as new paradigms bed-in. Which could provide a flagship for a 'new era' of responsibility and 'moving towards a come to Jesus' - which would be hugely brave but as someone with the condition, if she managed to find a 'safe' and supported team might just be able to carry off (if she perhaps managed to set up some sort of psychologists for ME).

Part of the quote @Hutan quoted from the article itself:

Agree that is a manipulated version (for their/her own agenda? as it certainly seems to serve that). I feel like each time I check certain 'more official' sources the description of guideline recs in this area has been shifted just that little bit further this way - I find it hard to evidence with copies and wonder whether it is context of 'now seeing what they were up to' or actual edits.

Taking out the ya-di-yah BS 'personalised' line, saying 'expertise' as many times as possible, softener words that infer they can 'only do good' (emotional and social wellbeing) yells sales pitch - but in some ways most is 'expected filler'. Even if you are deluded so think without knowing in what, 'more' training can fix your profession (but then that is a metaphor for their treatment and reason for being in ME/CFS at all to be fair - they seem blind to the harm they can cause or possibility of being wrong or the visceral intrusion of someone not knowing what they are talking about obtaining access to personal relationships, so yes there is massive conditionality as to whether psych can help or do harm) there are also a number of reasons you might stop short of this marmite topic you don't need to add into the end of a thesis you've worked on.

But given the time context and politics then - who working there needing this signed off could dare to write anything different?

But, the guidance did NOT mention psych as part of MDT (or shouldn't and they certainly should NOT have input into what patients need) nevermind 3 different definitions of it being in any way ESSENTIAL - it was supposed to be an add on if someone needed it to grieve. It wasn't necessary to pass for that to be inferred wrongly. And this needs to be the dept that is most trusted and trustworthy, yet reading this it shouldn't be. I just don't like 'not precisely accurate' when the 'precisely accurate' was the obvious thing to insert - it reasonably makes anyone ask 'why choose to gerrymander the facts' (you'd surely have checked the document itself directly)?

It does indeed show what effect culture and 'power over position' can have on someone, as yes it must have been a very tough gig and I struggle to see how some of these things would be concluded by someone with the condition without being straitjacketed by the literature so far and need to pass being signed off within EDIT* an ONE established paradigm (with the latest being an opposite to what you worked within and causing 'outcry' internally). No way that someone unqualified could become so by whistleblowing what they do I guess. And you can hardly 'think outside the box' when you know what the set-up is and have to assume what will be delivered will be within that remit.

The issue is - as a part of the literature it doesn't come with this caveat.

 

Unfortunately I don't see how anything positive could come from this kind of framing, particularly in the context of potential couples' counselling where one of the partners has ME/CFS. "Perfectionism", "personality" etc? This seems to go against the couple really dealing with the reality of the disease together and coping together and puts up a load of junk concepts and self-gaslighting ideas for the patient. It's just a barrier. All of this seems profoundly inhumane under the guise of "caring" and "counselling".

I would be worried for my partners or caregivers to come across these ideas, and do not think it's a good idea to mislead patients about their condition.

I realize it's difficult to write anything even when not an ME/CFS patient. But this comes across as a way for someone to further their prospects without interrogating the frameworks which cause fellow patients such harm and consequently hopelessness and further destruction of relationships of all kinds. The BPS framework doesn't help us with relationships; it gives other people a permission structure and conceptual framework to blame us and abandon us whist spouting buzzwords, false statements, and platitudes.

I have also not been well enough or been able to have a relationship since I got ill. I don't know what world this is written in; I do not recognize it. I was also not able to complete my PhD due to becoming ill either, which hardly matters in comparison! I understand how hard it is to publish anything. I am very fortunate; my family did not abandon me. They do not believe in this kind of nonsense. I am so glad. It worries me to be living in a society where so many people think this way and propagate these ideas, including fellow patients.

I am genuinely shocked each day that anyone finds this stuff plausible - except in cases where their salary, employment, and job prospects depend on it. I realize that all sorts of people get ME/CFS and there may be a lot of cognitive dissonance for some working or interested in these kinds of fields. I urge people who are tempted by fanciful ideas to think about the practical effect that these pet theories and pseudoscientific frameworks have had and are still having on some very sick and disabled people, who could use genuine help and understanding; not this.

I am sorry that I am not able to have a more sympathetic response; reading stuff like this makes me feel hopeless about anyone truly helping. Proliferation of these ideas seems dangerous to patients and their families, who often believe the false stories and pseudoscience of practitioners, with tragic consequences.

Thank-you @Hutan for your thoughts and analysis; it was very helpful. I am afraid I am a bit overwhelmed with it all this evening and have only managed to look at this briefly! I guess I simply do not understand this field and the way patients are dealt with; the basics seem to be those with which I fundamentally disagree.

Edit: changed word

 

I'm assuming this goes through the normal PhD process. This means that one has their Viva (oral interview) and then makes the amends that they are told to make [during this viva] in the intervening months.

I doubt that from the author's own perspective there would be opportunity for much amend between these two times in line with the new guidelines as it would effectively be in the hands of the assessment process around that point