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

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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
 
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.
 
This emergence can be stifled by the lack of a sustained, positive relationship with a health care practitioner. Referrals and re-referrals to new health carers, rather than clarifying the elusiveness, tend only to accentuate it, fracturing its growth and exhausting the patient from having to continually retell their story.
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Yes, don't refer your patient to other clinicians, instead help them cultivate quiet acceptance. Because you are actually doing your patient a favour, saving them the effort of recounting their story.

The biographical disruption associated with illness implies a deficit, yet coming to terms with chronic fatigue also indicated strength, resilience, and grace. The reconciliation and freedom from seeking an unobtainable diagnosis liberated people from a futile cycling for unobtainable certainty and cure.
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Look, this study, while not revelatory, is not terrible. It's true that there are ways to live well with chronic fatigue so long as you aren't too badly affected and you have enough money, and, ideally, a few people who really care for you, even when you can't contribute what you used to. The authors say they are aware of the fact that some people may not be having such an easy time to accept their limitations and difficulties:
By consciously developing the themes we identified, patients regained previously lost or impaired senses of their personhood and purposefulness for living. We are aware, however, that one limitation of the study was that we were unable to interview currently or permanently bed-bound participants, so that it is possible that these results may differ for the most severely afflicted.
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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.
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But there's a sense of condescension, an implicit assumption that the interviewees' strength of character has contributed to them not being bed-bound, and the study seems primarily concerned with the feelings of the clinician. I think, yes, we should appreciate what we have and cultivate calmness. But that isn't going to move the field forward fast enough for all the people for whom circumstances mean that they can't have a pleasant life pottering in their raised garden. I'm sorry if that means we sometimes make clinicians feel a bit uncomfortable. But not that sorry.
 
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TigerLilea said:
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?
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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]
 
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While pottering in my (partially) raised garden, it occurred to me that part of the problem with this paper is the assumption that it is the doctor's role to provide life advice (and discourage a patient's quest for medical answers for their condition).

Doctors often come from a very defined social strata and often have a very particular outlook and approach to life. I don't think they, as a group, necessarily have the background or training to be offering life advice to the range of people dealing with debilitating chronic fatigue. Even if they do, when I make what is a considerable effort to see my doctor, I do not go there expecting them to provide me life advice in the 15 minutes I have with them. Similarly, if I am fortunate enough to get in front of a specialist, I don't want to waste that time discussing my goals in life. I have come to see if the doctor can bring their very specific knowledge to the issues I have that are relevant to that knowledge. If they have no ideas, I want them to tell me so, and we can stop wasting each others time.

If I want someone to give me advice about how to live my life, there are others who are more likely to be of use and who have more time and interest.
abstract said:
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.
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Doctors who can't help their patients clinically don't have to fill the void with condescending advice about how to make lemonade when life gives you lemons. They can say they don't know, express sympathy and fill out whatever forms are likely to give the patient some practical help. And, if doing that makes them feel nihilistic, then I recommend a bit of gardening.
 
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Hutan said:
While pottering in my (partially) raised garden, it occurred to me that part of the problem with this paper is the assumption that it is the doctor's role to provide life advice (and discourage a patient's quest for medical answers for their condition).

Doctors often come from a very defined social strata and often have a very particular outlook and approach to life. I don't think they, as a group, necessarily have the background or training to be offering life advice to the range of people dealing with debilitating chronic fatigue. Even if they do, when I make what is a considerable effort to see my doctor, I do not go there expecting them to provide me life advice in the 15 minutes I have with them. Similarly, if I am fortunate enough to get in front of a specialist, I don't want to waste that time discussing my goals in life. I have come to see if the doctor can bring their very specific knowledge to the issues I have that are relevant to that knowledge. If they have no ideas, I want them to tell me so, and we can stop wasting each others time.

If I want someone to give me advice about how to live my life, there are others who are more likely to be of use and who have more time and interest.

Doctors who can't help their patients clinically don't have to fill the void with condescending advice about how to make lemonade when life gives you lemonade. They can say they don't know, express sympathy and fill out whatever forms are likely to give the patient some practical help. And, if doing that makes them feel nihilistic, then I recommend a bit of gardening.
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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.
 
We chose to study patients living with undiagnosed chronic fatigue as our exemplar study group, fatigue being one example of MUS. When there is no clear diagnosis, patients may then be diagnosed as having chronic fatigue syndrome/myalgic encephalitis (CFS/ME), defined as “disabling, unexplained fatigue that is not alleviated by rest and lasts for at least four months”
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I haven't read it all, but this rang alarm bells. The also refer to CF and CFS interchangebly and refer to it as 'the symptom'. They clearly have no idea what ME/CFS is.

I'm allergic to people trying to psychologise us in order to make doctors feel better. I can't read the rest for that reason.
 
Katherine Hall is not a student producing a Masters thesis by interviewing 12 people and writing up the themes. She is a senior lecturer in the Otago University Department of General Practice and Rural Medicine.

She is also someone with an interest in ME/CFS. For example, she was a co-author of this recent paper, along with Warren Tate.
Wood, E., Hall, K. H., & Tate, W. (2020). Role of mitochondria, oxidative stress and the response to antioxidants in myalgic encephalomyelitis/chronic fatigue syndrome: A possible approach to SARS-CoV-2 ‘long-haulers’?
We have a thread here on that paper, I'd missed it and I see we haven't discussed it yet.
Role of mitochondria, oxidative stress and the response to antioxidants in ME/CFS: a possible approach to SARS-CoV-2 ‘long-haulers’?, 2020, Tate et al

I've been told that Katherine Hall has a genuine interest in ME/CFS and I'm sure that that is true. I've just realised that I've had some interactions with her in the past. When we helped our regional health authority to write an updated and useful ME/CFS Health Pathway, I contacted her to find out the status of ME/CFS Health Pathway guidance in the Southern regional health authority. She replied via email that she doesn't use the Health Pathways system but 'writes her referrals based on her medical knowledge and experience rather than rely on a computer algorithm' and noted that 'in 35 years that (her medical knowledge and experience) had never led her astray'. So, she didn't know what the Southern region's ME/CFS Health Pathway said, or even if there was one. And couldn't find out. Which was disappointing. I mean, she may well be infallible, but some of the medical students she teaches may end up being rural doctors, operating alone, and 'faking it until you make it' can have some pretty sad outcomes when it comes to medicine. The Health Pathways isn't a computer algorithm, it's like an online condensed version of the NICE Guidelines - for lots of conditions - that aims to always reflect best practice - it doesn't make doctors experts, but it can help them be adequate. So, surely, as a lecturer of General Practice and Rural Medicine you'd want to teach the med students about the tool? And surely, if you wanted to make management of a disease better, you'd check out the Health Pathway for that disease to see what information doctors are seeing?

This is part of the conclusion of the 'Successful psychological strategies' paper:
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. By thinking beyond the concepts of diagnosis, investigation and cure, and instead aiding narrative consistency, modeling comfortableness with uncertainty, encouraging self-reflection and stimulating creative solutions, clinicians can facilitate a therapeutic movement through stillness to a place where patients can live well despite, or because of, being unwell.
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The authors seem to be suggesting that doctors need to each learn from the patients they see who transcend their suffering - which is fine, but it's bad luck if you get seen by a doctor who hasn't yet seen a patient transcend from your particular disease, or worse, thinks everyone can transcend their suffering if they just think right and do yoga. Instead of spending time on this study, the time could have been spent making and promoting a good ME/CFS Health Pathway (i.e guideline) for the Southern region. That would have made a real reduction in doctor uncertainty and therapeutic nihilism.
 
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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.
 
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.​
 
Michiel Tack said:
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.
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different degrees of dreadfulness - :rofl: - perhaps Chalder can supply a scale for that.

satistically significant improvements - is that a cross between statistically and sadistically significant improvements? seems very appropriate.
 
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