Successful Psychological Strategies of Experienced Chronic Fatigue Patients: A Qualitative Study, 2021, Hall et al

I have no idea what this is like.

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https://journals.sagepub.com/doi/full/10.1177/23743735211034962

Successful Psychological Strategies of Experienced Chronic Fatigue Patients: A Qualitative Study



Katherine H Hall, BSc(Med), BA, MBBS, PhD, FRNZCGP, Claire Amos, BSc(Hons), PGDip, PhD, Chrystal Jaye, BA(Hons), PGDipTertT, PhD,
Jessica Young, BPEd(Hons), MPEd, PhD

First Published August 6, 2021 Research Article

https://doi.org/10.1177/23743735211034962

Abstract

Trying to care for patients with medically unexplained symptoms (MUS) can lead to frustration and disappointment for both patients and health care professionals alike.

Learning positive ways to assist patients avoids professionals collapsing into therapeutic nihilism.

We sought to understand how people with such symptoms can live well despite (or even because of) their condition.

Chronic fatigue was chosen as the exemplar symptom.

Participants were invited to join the research if they, themselves, considered they were living well with this symptom.

One-on-one interviews using an appreciative enquiry approach were performed and thematic analysis undertaken.

Twelve participants were interviewed before data saturation occurred.

The emotional stance or relationship a participant had with, and towards, their illness was the primary determinant underlying their interpretation of “living well.”

Five major themes of this meta-theme were identified:
(1) engaging with elusiveness,
(2) befriending uncertainty,
(3) reflecting on self,
(4) living creatively,
and
(5) moving in stillness.

Encouraging patients who are struggling with MUS to consider how they emotionally engage with their illness via these 5 positive dynamics may lead to better health outcomes for patients and happier, more fulfilled health care professionals.



challenges, chronic fatigue syndrome, clinician–patient relationship, long-term care, patient/relationship-centered skills, patient engagement, patient perspectives/narratives, qualitative methods

 

"Moving in stillness." I hope that includes breathing.

 

These people spent like 22+ years in education to produce this.

Would have done society a favor to just drop out and play video games all day.

 

So the first sentence the writers include both patients and their therapists.

But in the very next line we see the real focus . . . concern for those poor therapists and the possible collapse into nihilism.

What catches my attention is their determination to push through and find a way for the patients to give them what they want without all the drama of the patient telling the therapist it's not effective.

One way or another they will succeed and patients will be made to stop complaining.

And they have had decades to succeed. With little success.

I also noticed I did not see any consideration of people's relation to and response to their illness with regards to external factors such as family/social group support and other supports that require financial capacities that would mitigate some of the burden of illness.

The people coming forward are more likely to be in a highly capable group.

 

Am I right in assuming that they aren't necessarily talking about people with ME, but rather anyone who has 'chronic fatigue' as a symptom?

 

My reading is that they are seeking conclusions that they believe relate to anyone who has the symptom of chronic fatigue that can be generalised to anyone with medically unexplained symptoms, that they indicate is a description that includes those with symptoms unexplainable by an underlying organic condition. However I am sceptical that they reliably distinguish between medically unexplained symptoms as a neutral description and MUS as a quasi psychiatric diagnosis; however I need to reread the article when my brain is functioning better.

Further they seem suggest that some or all of their subjects may turn out to have chronic fatigue syndrome or ME that may have a physiological basis and so may turn out to not be either a medically unexplained symptom or the presumed condition MUS. However because there is no agreed clinic assessment tool for chronic fatigue syndrome they imply it is acceptable to allow assumptions of overlaps between the symptom of chronic fatigue and the condition of CFS and between the symptom/condition of chronic fatigue/CFS and the descriptor medically unexplained symptoms and/or the diagnosis of MUS.

They seem to define chronic fatigue syndrome solely on the basis of the persisting chronic fatigue for more than (four months?), all of which suggests despite their best efforts an awful lot of hedging their bets or worse a total lack of any intellectual rigour.

Obviously this methodology although good for generating ideas, does not allow drawing of any scientifically demonstrated conclusions, at best it suggests possible hypotheses for future experimental verification.

[added - Further, even with highly skilled facilitators this methodology creates very real risks of researcher bias in selection of the presumed significant issues or themes.]

[edited for clarification]

 

Though I very much agree with what you say, @Hutan , I am not sure that the authors are referring just to GPs or consultants under the term ‘health care professionals’ and to play Devil’s advocate there are a lot of people one comes across on social media that seem to be looking for such support or direction.

The problems arise when that is all that is on offer and it is presented as a treatment for the underlying condition and assumed to be appropriate for everyone and not just those that are actually seeking it.

 

I think this study is an example of how (as usual) the healthcare system is concerned first of all with helping itself. If patients are helped, it would be a happy side effect. Specifically the motivation here seems to be to manage doctor's fear that nothing can be done by inventing some pseudo intervention that maybe allows them to feel like they can offer something to patients.

Real help for patients will come when they get to decide what is studied.

 

This reminds me of @Sarah94 ' s recent post on @lunarainbows thread on NHS care giving an update from her mum.
NHS is not run for patients , more for the benefit of staff.

 

Some quotes from the article:

"Learning positive ways to assist patients avoids professionals collapsing into therapeutic nihilism"

"By learning from people who have transcended, at least in part, some of the suffering induced by their symptom(s), clinicians can develop skills and avoid the sense of impotency and experience of heart-sink with other patients with MUS"

"....clinicians can facilitate a therapeutic movement through stillness to a place where patients can live well despite, or because of, being unwell."​

So it seems that MUS patients should learn ways to transcend their symptoms so that they don't bother clinicians that much.

 

It is interesting to see the use of "therapeutic nihilism" as though it is some new idea. It seemed to be a mainstay of early Wessely. It was then used in the Festschrift for Gelder by another (possibly Salkovskis) in relation to another condition treated with CBT. It did appear that avoidance of therapeutic nihilism may have been a significant factor in development of CBT. It seems not much of an endorsement that a treatment is possibly better than nothing.

Iam always on the look out for use of the term earlier than Wessely or the Geldings.

 

A study based on intentionally selecting for survivor bias. Applied to drowning this would include a) those who avoided water, b) those who only went in ankle deep, c) those who had a lifebelt.

 

Perhaps I should submit the following, sarcastic letter

Dear Sir/Madam,

We read with great interest the manuscript by Hall et al. on strategies for patients with medically unexplained symptoms (MUS) to avoid therapeutic nihilism in their healthcare providers. Based on our experience, however, we advise restricting the exposure to MUS patients to a bare minimum. These patients rarely have identifiable pathology, usually don’t get better and their diagnostic consultations can be extremely boring. Given the high rate of burnout among doctors and nurses, it would be bad practice to expose our medical professionals to these heart-sink patients.

To reduce the burden of MUS on the healthcare system we have developed a brief cognitive-behavioral intervention named SHUT-IT (no acronym). It teaches MUS patients to transcendent the suffering induced by their symptoms by focusing on positive aspects of being unwell. Patients are instructed to provide upbeat narratives focusing on willpower, perseverance, and spirituality as means to overcome illness and misfortune. SHUT-IT stresses ‘moving in stillness’, where MUS patients strive to be less burdensome to the productive members of society. Linguistic reprogramming is used to reduce catastrophizing, symptom-focusing, and somatic attributions and encourage patients to say they are doing somewhat better.

We piloted a randomized trial of SHUT-IT in which 15 clinicians were exposed to MUS patients of different degrees of dreadfulness. Satistically significant improvements were seen on a standardized boringness scale. Descriptive terms for MUS consultations shifted from ‘depressing’ and ‘frustrating’ to ‘inspiring’, ‘cute’, and ‘uplifting’. 86 percent of participants indicated they were happy to tell MUS patients to SHUT-IT and some even indicated they were already using techniques based on similar principles. The percentage of patients who reported doing somewhat better increased by 0.14 percent, effectively reducing the mental burden on healthcare professionals. These encouraging results indicate that more research, seminars, conferences, educational leaflets, and TED talks are needed to elucidate the effectiveness of SHUT-IT and encourage its implementation in clinical practice.

MUS patients are prevalent and can result in distressing experiences for doctors, nurses, and other healthcare workers. SHUT-IT is a promising intervention to reduce negative encounters and depressing stories. We hope that in the future, healthcare professionals will be able to manage MUS effectively by telling their patients to SHUT-IT.​

 

p = 0.048

 

Brilliant. Go for it.

Just note typo in 2nd para 2nd line. Transcend rather than transcendent