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

[cassava7]

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

A hearty laugh thanks to you both. It would not be surprising that the editor publishes Michiel's letter.

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.

Social strata aside, medical doctors are incited to push through long, busy and stressful working hours from their first year of education at medical school. This behavior is encouraged early on and all throughout their education by senior staff that supervises them as students, interns and residents.

It may be that a significant proportion of MDs deals with chronic fatigue to some degree, especially in financially overstretched, understaffed hospitals and surgeries. The result is that disregard or scorn rather than compassion towards patients presenting with chronic fatigue is the norm.

 

[Sean]

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.

Therapy by koan?

Demonstrate moving in stillness, young Grasshopper, via the medium of interpretive free-form convalescence.

 

[rvallee]

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.

Ah, well, that's simple: we don't. This can end here. We don't live well. At all. This is a well-documented fact. Why even make this obviously false assumption? We survive, in no way does this ever amount to living well. They'd know if they'd ever listen. And what in the hell is this "(or even because of)" doing there?! This is borderline "yes you were raped but a baby is always a blessing". Hell not even borderline it's just as disgusting.

And boy the lengths some people will go to avoid doing their job. Amazing, in the end it's literally more work.

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.

You can find identical statements to this going back decades. No, it "may" not, we know for a fact, we have decades showing otherwise. But, sure, crippling selective institutional amnesia does just as well.

 

[rvallee]

Therapy by koan?

Demonstrate moving in stillness, young Grasshopper, via the medium of interpretive free-form convalescence.

Basically Deepak Chopra substituting quantum woo with neuroscience woo.

 

[Trish]

It appears they asked among patient organisations for people to volunteer for the study who feel they are 'living well' with chronic fatigue. So it's a self selecting huge bias intended from the start. From the minimal data it seems many of them were educated, employed, had families etc.

I am very uncomfortable with conclusions being drawn on the basis of such a small self selected sample with effectively predetermined outcomes and thinking this is useful in learning about living with ME/CFS.

Maybe the main effect will be for pwME who are less fortunate to feel judged when they are told some pw chronic fatigue 'can live well despite (or even because of) their condition.'

 

[TigerLilea]

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.

This is why I'm assuming that this article is about 'chronic fatigue' and not ME.

 

[Peter T]

This is why I'm assuming that this article is about 'chronic fatigue' and not ME.

My reading is that the authors don’t think they need to make this distinction.

They understand the symptom of chronic fatigue is not the same as CFS which they acknowledge may be a distinct biomedical condition, which they confusingly also seem to regard as solely defined as persistent chronic fatigue. However I think they see it as irrelevant if their subjects have ME/CFS or not and assume that any conclusions they chose to draw from their arbitrarily pre selected subjects will be relevant to anyone with the symptom of chronic fatigue including CFS and MUS.

[corrected typos]

 

[Subtropical Island]

Just wanted to bump this one. It hits it on the head: Yes, I do as a pwME want to learn more about successful strategies to live as well as I can when I can with this condition. But it is not a doctor’s role to focus on that.

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 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.

I especially like your last paragraph.


Ultimately (as I’m pleased to see @Trish already mentioned), this is a selection of people who would choose to characterise themselves as doing well, who would volunteer to take the time to do this and are happy to be held up as an example case for others to learn from.
I’m afraid that demonstrates a correlation with the attitudes observed and reported on …and not much about causation. (Added for clarity: Nor about treatment or what to do if you’re not currently ‘doing well’. To put it very simply: people selected for thinking they have a ‘good attitude’ report having a ‘good’ attitude)


And this bit I’m just very sad to find out that this is closer to home than I initially realised.

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:

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.