Making recovery conceivable: perspectives from [HCPs] using psychologically and behaviourally informed approaches to [CFS], 2026, Bakken et al

[forestglip]

Making recovery conceivable: perspectives from healthcare professionals using psychologically and behaviourally informed approaches to chronic fatigue syndrome

Bakken, Anne Karen; Mengshoel, Anne Marit; Synnes, Oddgeir

PURPOSE
Healthcare professionals (HCPs) treating patients with chronic fatigue syndrome (CFS) work within a contested field marked by uncertainty. This study explored how HCPs using psychologically and behaviourally informed approaches to CFS understood therapeutic change and their role in facilitating recovery.

METHODS
We used reflexive thematic analysis of two focus groups and three individual interviews with 16 HCPs from five professions, purposively sampled across clinical settings. Participants had at least two years' experience working with patients with CFS and represented diverse therapeutic and theoretical perspectives.

RESULTS
The analysis was organised around four interrelated themes: (1) meeting patients in a "no-man's-land", (2) offering a new explanatory "map", (3) navigating by the map, and (4) maintaining trust in a contested field. HCPs described offering frameworks integrating biological, psychological, and social processes.

Two overlapping orientations emphasised either stress, overload, and impaired regulation or maladaptive learning, perception, and self-sustaining symptom processes. Across orientations, validation and fostering agency were central.

Embodied experiences of improvement were considered important for strengthening trust and confidence that change was possible. Competing illness narratives challenged trust.

CONCLUSIONS
Participating HCPs described explanatory frameworks, their application in practice, therapeutic relationships, and patients' embodied experiences of improvement as interacting to make recovery conceivable.

Web | DOI | PDF | International Journal of Qualitative Studies on Health and Well-being | Open Access

 

[jonathan_h]

I read about half of this carefully before losing interest. These two sentences caught my attention:

Some [of the brain-retraining healthcare practitioners interviewed] also expressed residual diagnostic uncertainty and concern about how current approaches might be viewed if future research were to establish a treatable biological dysfunction with little or no role for the processes they currently targeted. Several clinicians also reported being criticised for not believing patients or for minimising their suffering, highlighting the moral and professional stakes involved.

I don’t think I’ve ever seen psychologizers admit concern about how history might (read: will) remember them. It’s also notable to me that the worry expressed is limited to the consequences they might face for being wrong (and not the harm they’ll have caused their patients.)

 

[SNT Gatchaman]

HCPs portrayed shifts in patients’ illness understanding as potentially important, but also challenging, with much at stake for both patients and clinicians. Participants emphasised patients’ fear of symptom exacerbation and the uncertainty involved in interpreting symptoms in new ways. For clinicians, perceived risks extended beyond the therapeutic relationship to professional legitimacy, criticism from colleagues and the public, regulatory scrutiny, and possible legal repercussions.

 

[NelliePledge]

Which is all so much more serious for the clinicians than some actual symptoms actually getting worse.
How very catastrophising thinking.

 

[Hutan]

Gosh, thank you @jonathan_h and @SNT Gatchaman for reading the paper and reporting that content. I just read the abstract, made a disapproving noise and moved on.

I agree, I can't remember ever seeing proponents of the 'think and be well' mantra ever considering how they will be viewed if they turn out to be unequivocally wrong. I can't recall seeing these proponents ever mentioning criticism from colleagues and possible legal repercussions either.

This seems significant.

 

[neurophusion]

Talking about looking back from the future ...

DISCUSSION: Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

Here is the Wessely segment Duncan Jarvis: Chronic Fatigue Syndrome is confusing. It’s gone by various names in the past, the etiology is currently unknown and they’re aren’t any diagnostic tests or biomarkers for it. Various causal agents have been suggested in the past and a new one, XMRV...

forums.phoenixrising.me

2010:

SW: We’re not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it, there’s nothing we’re going to do about it. We’re gonna... in the business of rehabilitation.

DJ: So, it’s very pragmatic approach to...

SW: It is a very pragmatic approach, that’s absolutely right. And, it may well be, in a hundred years time, people look back and laugh at our pathetic and puny approaches to this illness - sobeit. But, it’s an approach that works. Uhm. It’s about improving control of illness; it’s about improving management; it’s about improving quality of life; ahh, improving the control of symptoms and many people will do very well on this approach.

 

[Peter T]

Presumably something is ‘pragmatic’ only if it actually works.

 

[Sean]

We used reflexive thematic analysis of two focus groups and three individual interviews with 16 HCPs from five professions, purposively sampled across clinical settings.​

That was as far as I needed to get to justify going no further.

Though I agree that it does seem to indicate some degree of self-awareness creeping into the psycho-behavioural club, albeit more at the level of self-preservation and arse covering, and less about the harm they have done to patients.

But, it’s an approach that works. Uhm. It’s about improving control of illness; it’s about improving management; it’s about improving quality of life; ahh, improving the control of symptoms and many people will do very well on this approach.​

A shameless liar and self-promoter from start to finish.

 

[Andy]

I think we can safely assume that these health care 'professionals' also believe that they are able to influence the change from night to day and back again, as well the changing of the seasons.

 

[Trish]

I read most of the article. I think it's notable that there is no mention of any discussion in the focus groups of how they interpret or deal with patients who get sicker using their approach, or any evidence base they use to justify their two explanatory models of stress/trauma/burnout or faulty symptom perceptions. Nor do they mention any clinical trial evidence supporting their treatment approaches of gradual exposure to avoided activities and changing beliefs.

It's basically a bunch of CBT/GET/brain retraining clinicians congratulating themselves on how wonderful they are.

It makes me sick.

They are either misdiagnosing as ME/CFS a patient group suffering from stress, burnout or health anxiety where such methods may be helpful, or they are deluding themselves and inflicting harmful treatments on pwME.

 

[neurophusion]

What would help with "making recovery conceivable" using "psychologically and behaviourally informed approaches"? Actual good evidence. What would help with "validation and fostering agency"? Allowing us to opt out of this zombie science nonsense permanently.

What would help with "strengthening trust and confidence"? Stop promoting a poorly evidenced "explanatory map" consisting of "frameworks integrating biological, psychological, and social processes" that feature "stress, overload, and impaired regulation or maladaptive learning, perception, and self-sustaining symptom processes".

Finally, what would help with "maintaining trust in a contested field" is helping to reign in the endless stream of low quality articles from the e-paper mill. The CBT/GET saga has basically destroyed all credibility of psychological medicine in the eyes of a large section of the ME/CFS community.

 

[Lou B Lou]

The participants (Health Care Professionals) reinforce each others beliefs by repeating unevidenced ideology, and by producing anecdotes heavily framed to fit their belief system.

The Health Care Professionals promote the practice of isolating the patient in their own home environment, by recruiting family members/caregivers to foist the therapists' belief (belief in ignoring and overriding ME symptoms) onto their severely sick loved ones. The family members/caregivers on whom ME/CFS patients are reliant for their safety and actual survival.

'Support from family members or other caregivers was described as crucial in this [therapy] process, at times reinforcing and sustaining the approach introduced in clinical encounters.'

'There have to be steady, reassuring people around them who believe that even if they faint, vomit, or have diarrhoea, it’s still not dangerous: ‘We set the next goal and carry on.’​

'Reflecting on the limitations of previously encountered approaches, one HCP commented:

“We can’t keep clinging to a purely biomedical model. Many still do—as if what can’t be measured simply doesn’t exist.”

“It’s about validating the patient’s experience: if you’re tired, you’re tired. I can’t measure that, but it’s real for you. My role is to explore plausible explanations and help make sense of the symptoms, even if their causes are not what the patient believes.”

'HCPs also noted that recovery narratives from individuals with whom patients could identify could foster hope and openness to change,'

“If I’m met with messages like ‘Recovery isn’t possible’ or ‘The ME association says this, so you don’t know what you’re talking about,’ we’re dealing with conflicting views. That can make me feel insecure as a clinician and hesitant about being questioned or criticised....."

'Some {HCPs] also expressed residual diagnostic uncertainty and concern about how current approaches might be viewed if future research were to establish a treatable biological dysfunction with little or no role for the processes they currently targeted. Several clinicians also reported being criticised for not believing patients or for minimising their suffering, highlighting the moral and professional stakes involved.'

'Here, some HCPs drew more explicitly on psychological concepts, describing difficulties recognising and regulating stress and emotions and encouraging reflection on the balance between external demands and internal needs. For some patients, bodily discomfort was also understood as potentially reflecting psychological stressors or conflicts of which they were not fully aware.

Taken together, stress- and overload-oriented explanations were used when they resonated with patients’ experiences and circumstances, making symptoms more understandable while introducing the possibility of change. The second orientation placed greater emphasis on self-perpetuating processes and the brain’s role in symptom perception and generation. Persistent symptoms were described as reflecting learning processes that increased the sensitivity of the body’s “alarm system”:

“With long-lasting pain and fatigue, it’s like a pathway forms in the brain. Over time, that pathway becomes more well-worn, so the system becomes more sensitive—it takes less and less to trigger symptoms. You can think of fatigue as the body’s alarm system… and if that alarm becomes too sensitive, it can get stuck.”


HCPs also described how previous experiences could shape subsequent symptoms through expectations and predictions:

“Our expectations shape experience as much as what actually happens—that's how the brain works. From this perspective, chronic fatigue can be understood as a chronic misprediction. The brain has learned that activity is exhausting, so that prediction is triggered before you even begin, shaping the experience itself.”


'Across accounts, HCPs viewed symptoms as potentially becoming self-perpetuating through learning, sensitisation, and expectation, and increasingly decoupled from the original trigger.'


...... 'Support from family members or other caregivers was described as crucial in this [therapy] process, at times reinforcing and sustaining the approach introduced in clinical encounters. One participant illustrated this through the role of a severely ill patient’s husband:

“He had to support her because she had no balance and feared falling down the stairs. But he said, ‘No, it’s not dangerous. We’ll walk slowly—this is our training now.’ There have to be steady, reassuring people around them who believe that even if they faint, vomit, or have diarrhoea, it’s still not dangerous: ‘We set the next goal and carry on.’

.
.

 

[rvallee]

Gosh, thank you @jonathan_h and @SNT Gatchaman for reading the paper and reporting that content. I just read the abstract, made a disapproving noise and moved on.

I agree, I can't remember ever seeing proponents of the 'think and be well' mantra ever considering how they will be viewed if they turn out to be unequivocally wrong. I can't recall seeing these proponents ever mentioning criticism from colleagues and possible legal repercussions either.

This seems significant.

Unfortunately, it goes no further than this. The quoted part is the extent to which they thought about it. Which is basically none at all. Not much of interest in the rest of the text, this is almost solipsistic in its self-centeredness.

All I see here is physician-centered everything. Some of them might actually want to help, but they're going about it all wrong so it doesn't even matter. The main theme of the paper is still the common everything psychobehavioral, leading absolutely nowhere. They are simply not informed, and they never listen to a damn thing we tell them.

It can never be said enough that none of this is normal. Professionals are not supposed to be this incompetent at anything that has been around this long and is that impactful. It just doesn't normally happen, everything is stuck in place insisting on the psychosomatic ideological models and giving not a second's thought to the possibility of being wrong. And about all they can think about it is how it would impact them when it happens, and how it impacts them now, where it's a possibility.

This system doesn't bend, it doesn't flex, it doesn't break either. It makes people break on it, is completely inflexible, and clearly cannot even care about it.

 

[rvallee]

“It’s about validating the patient’s experience: if you’re tired, you’re tired. I can’t measure that, but it’s real for you. My role is to explore plausible explanations and help make sense of the symptoms, even if their causes are not what the patient believes.”

No professional's job is to manufacture excuses. The role of a professional is to offer, or if necessary develop, solutions. You solve problems, you don't merely answer questions unrelated to the problem. Of course they fail at everything with this loser mindset.

 

[rvallee]

“With long-lasting pain and fatigue, it’s like a pathway forms in the brain. Over time, that pathway becomes more well-worn, so the system becomes more sensitive—it takes less and less to trigger symptoms. You can think of fatigue as the body’s alarm system… and if that alarm becomes too sensitive, it can get stuck.”

And yet most of these professionals would gladly promote something like the LP and other short courses that fully reverse those "well-worn pathways" quickly, even promote Garner's incoherent narrative about a single phone call fixing all of this. They can't even remain consistent in their own hallucinations, all of which are pure baseless speculation asserted as fact.

“Our expectations shape experience as much as what actually happens—that's how the brain works. From this perspective, chronic fatigue can be understood as a chronic misprediction. The brain has learned that activity is exhausting, so that prediction is triggered before you even begin, shaping the experience itself.”

This wouldn't even pass on Wikipedia. That's how low the standards in health care have become, that what used to be the standard for "you can't trust what people put in there, anyone can edit it" is now so vastly superior that what's in their textbooks wouldn't even be allowed. This is not how any of this works, there is no such thing, they don't even bother with the linear passage of time and other pesky requirements like it.

 

[Lou B Lou]

Yep - the concerns of the HPCs in those interviews are still all about them. Even when having doubts about their theories/practices, their concern is how will they look if (when) they are shown to be wrong.

'Some [HPCs} also expressed residual diagnostic uncertainty and concern about how current approaches might be viewed if future research were to establish a treatable biological dysfunction with little or no role for the processes they currently targeted. Several clinicians also reported being criticised for not believing patients or for minimising their suffering, highlighting the moral and professional stakes involved.

 

[Utsikt]

Let’s look at the authors (auto-translated profiles from public sources):

Anne Karen Bakken link

is a medical doctor and specialist in child- and adolescent psychiatry with extensive experience in clinical consultation-liaison psychiatry, psychosomatics and interdisciplinary family based medical care at The University hospital of St. Olav, Trondheim, Norway. She now holds a research fellowship at VID Specialized University in Oslo, Norway. Her key areas of interest include interdisciplinary care for patients with pain, fatigue, medical traumatic stress and other complex illnesses.

She signed the Oslo manifesto

Anne Marit Mengshoel link

My research interests are predominantly related to clinical research on so-called medically unexplained illnesses and suffering from persistent pain, fatigue, and restricted daily functioning. In particular, I am occupied in studying illness and recovery narratives of patients with fibromyalgia, chronic fatigue syndrome or long-Covid, health care providers' clinical experiences, narratives of patients with cancer and their next of kin's experiences of home death. I have coproduced patient education program together with stakeholders and a rehabilitation team, and is now engaged in exploring these experiences further. In my research, I have adopted quantitative, qualitative and mixed methods designs, as well as designs for systematic literature reviews

Positions:

• Panel member of the Norwegian Women Association (2019 - )
• Mentor programme for female postdoctors at the University of Oslo (2020-2021)
• Panel member of the Research Professorships program, National Institute of Health Research, England (2015 - 2020)
• Member of the COST network group of Chronic fatigue/ME in the EU, (2016 - 2020)
• Founder and chair of the research group Self-management SELMA until 2019

Courses:

Master of Public Health and Epidemiology: lecturing in qualitative research methods and supervisor for master thesis. At PhD level: How to write a synopsis, and the phenomenon of recovery

Oddgeir Synnes link

Oddgeir Synnes is the head of the Centre for Diaconia and Professional Practice and an associate professor at VID University College in Oslo and an associate professor II at Molde University College. He is a philologist and has worked with narrative perspectives in elderly care and palliative care for a number of years. His PhD (2012) was an analysis of palliative care patients' stories as narrative identity constructions.

It’s particularly concerning that Mengshoel seems to be some kind of mentor and have been involved in training students in research methodology. I don’t think she’s going to do much good for the cause of women either, if this is how she goes about things.

The worst part is that this is on par for Norwegians. They might even be better than average.

 

[Sean]

The Health Care Professionals promote the practice of isolating the patient in their own home environment, by recruiting family members/caregivers to foist the therapists' belief (belief in ignoring and overriding ME symptoms) onto their severely sick loved ones. The family members/caregivers on whom ME/CFS patients are reliant for their safety and actual survival.

'Support from family members or other caregivers was described as crucial in this [therapy] process, at times reinforcing and sustaining the approach introduced in clinical encounters.'

Nothing more than extreme medical abuse, especially when it is done to children and their families.

“Our expectations shape experience as much as what actually happens—that's how the brain works. From this perspective, chronic fatigue can be understood as a chronic misprediction. The brain has learned that activity is exhausting, so that prediction is triggered before you even begin, shaping the experience itself.”​

​

And this, boys and girls, is why assumption and speculation soaked medicine is a very bad idea.

 

[Joan Crawford]

"Support from family members or other caregivers was described as crucial in this process, at times reinforcing and sustaining the approach introduced in clinical encounters. One participant illustrated this through the role of a severely ill patient’s husband:

“He had to support her because she had no balance and feared falling down the stairs. But he said, ‘No, it’s not dangerous. We’ll walk slowly—this is our training now.’ There have to be steady, reassuring people around them who believe that even if they faint, vomit, or have diarrhoea, it’s still not dangerous: ‘We set the next goal and carry on.’”

Such support was described as essential for sustaining engagement in a demanding and often counterintuitive process of change. Close others could assist patients, moment by moment, in practising new ways of relating to their symptoms."

The engagement of patients close family and friends in the delusion is chilling.

At best this is a tentative hypothesis that they seem unwilling to approach has been studied to death for decades with no discernable, objective positive results.

The self interest is evident. The poor us (HCPs, not patients) narrative shines through. The absence of empathy for the patients is quite staggering. Truly antisocial. These people live in an narcissistic, pseudo caring altered reality universe.