Patients’ experiences with fluctuations in persistent physical symptoms: a qualitative study - Barends et al July 2020

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Abstract
Objectives
To explore patients’ experiences with
fluctuations in persistent physical symptoms (PPS) and to
understand which factors—from their viewpoint—play a
role in these fluctuations.

Design
Qualitative study using semistructured interviews
and thematic content analysis.
Setting This qualitative study is part of a multicentre
prospective cohort study on the course of PPS. Patients
were recruited in general practices and specialised
treatment facilities for PPS throughout the Netherlands.
Participants Interviews were conducted with a sample of
fifteen patients with PPS to explore their experiences with
fluctuations in symptom severity.

Results
We identified three themes in the analysis: (1)
patterns in symptom fluctuations (2) perceived causes
of symptom exacerbations and (3) Patients’ strategies
in gaining control over symptom exacerbations. Daily
and weekly fluctuations in symptoms were an important
element in patients’ experiences. In particular anticipating
on the worsening of symptoms impacted their daily
routines and posed various challenges. Symptom
exacerbations were attributed to overstepping physical
limits and/or the impact of negative emotions. Resigning
to physical limits, adjusting ones daily planning, weighing
personal needs and learning to say ‘no’ were described
as different strategies in gaining control over symptom
exacerbations.

Conclusions
Fluctuations in the severity of
symptoms—and in particular daily and weekly symptom
exacerbations—are an important element of the symptom
experience in patients with PPS and poses various
challenges. Patients attributed symptom exacerbation to
overstepping physical limits and/or negative emotions.
Patients described different strategies in gaining control
over symptom exacerbations.
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https://bmjopen.bmj.com/content/10/7/e035833.info

eta:
Our findings correspond to some findings from quantitative
studies in CFS. Ecological momentary assessment
established that patients experienced difficulties in
balancing their activities in response to symptoms. More
fatigue-related symptoms and pain predicted more activity
limitation whereas feeling subjectively well predicted more all-or-
nothing behaviour, resulting in ups and downs.15
Pacing activities was helpful in preventing fluctuations in symptoms.
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A completely naive approach to research simply does not work when working with signs and symptoms. This isn't completely useless but it doesn't actually contribute anything either. And even when it's not totally off the mark, it's still wrong:
Pacing activities was helpful in preventing fluctuations in symptoms
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It does not prevent, it merely can reduce. And it still completely misses the reality of living like this, the immense impact on quality of life turned into survival mode because the only way to actually manage to reduce relapses is with significant help, financial and otherwise, which never materializes.

Medical science needs to freaking grow up. Seriously. Physics and other fields of science understand that this constant churn of low-quality stuff doesn't amount to anything on the remaining problems. Try all you want to smash the limits of particle physics with your own lab-made personal accelerator, it's never going to happen. This scattered approach of maximum quantity with no regard to quality is a complete and total failure. Grow the F up with this, it's been decades of stagnation already.
 
I'm not really opposed to qualitative studies. But there has to be bias in the selection of these participants - the 15 participants were selected from participants in a longitudinal study of people with Persistent Physical Symptoms (n=325) - and those 325 people will already have self-selected. The participants were selected to represent both those who experienced fluctuations in their illness and those with a seemingly stable level of symptoms.

The paper is interesting to read as an example of a shift in BPS thinking.

They are quite happy to lump anyone with 'Persistent Physical Symptoms' together in a group,
A recent and perhaps more appropriate term—putting less emphasis on the mind-body dualism in the origin of symptoms—is persistent physical symptoms (PPS)
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There is acknowledgement of symptom variability, and 'overstepping physical limits' is recognised as a cause of symptom worsening:
At first I was up and down, all over the place. I really thought ‘I’ll get over this, I’ll do it again, I’ll do everything again (…) Well, it takes a couple of years before you really hit the wall and think ‘sorry, you can try as hard as you like, you will still have these setbacks.’ And then you can start all over again, because then you are overstepping your limits. (P11, female)
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Despite the prominence of negative emotions as a cause of exacerbation of symptoms in the abstract and discussion, out of the 15 carefully selected people, only two are reported as saying that negative emotions exacerbated symptoms:
A couple of patients experienced that their symptoms represented or were exacerbated by negative emotions.
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One patient linked her symptoms solely to negative emotions and viewed her symptoms as a representation of these emotions. She found the solution in getting a hold of her emotions—that she attributed to her personal situation at that time. By changing her personal situation with the help of her religion, she explained she got rid of these negative feelings. At the time of the interview, she was free of symptoms.
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But that whole section is quite vague about exactly what people were saying, with it seeming that more than just two people believed that negative emotions affected them.
Although symptom exacerbations were attributed to negative emotions by some patients in our study, patients also indicated initial difficulties in accepting the connection. In a recent study on consultations between GPs and patients, symptoms could be attributed to emotions when patients introduced this link themselves. However, when the GP introduced this link it tended to be denied.30 This again underlines the stigma that still pertains on mental distress and its relation to physical health.
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With respect to strategies for coping, the authors highlight 'resigning to physical limits', 'adjusting daily planning', 'weighing personal needs and learning to say 'no''.
Most patients eventually adjusted their daily planning and routines to their physical limits and capabilities. They mentioned pacing activities and resting effectively as important strategies in gaining control over symptoms and experiencing fewer ups and downs.
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One thing to watch for in other papers and policies is this differentiation between resignation and acceptance:
Although many patients mentioned the importance of resigning to physical limits, they described this ongoing process as challenging and often frustrating. By resigning, we mean that patients expressed the need to take their physical limits seriously and anticipate by limiting their activities in order to prevent exacerbations of symptoms. Resigning to limits was experienced as different from accepting their limits, as many kept struggling with the acceptance of their physical limits. They for example encountered new situations as a result of changing environments and life changes over time, again confronting them with their physical limits.
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Finding a plausible explanation for the experienced symptoms was seen as helpful in accepting their physical limits.
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So, it seems that acceptance is good, but resignation is bad.
A prior qualitative study described that in particular patients who displayed acceptance of PPS—as opposed to resignation—shifted their focus towards improving their quality of life.24 Resignation and acceptance seem closely related, but the latter implies to be a later stage in a process of change. Acceptance was also an important condition for symptom improvement25 and facilitated a process of change towards self-compassion and self-care in patients with PPS.26
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Of course, there is something in what they are saying, that if we keep trying to do what we could do before we became ill, we deteriorate. So accepting our new reality is important.

But the fact that there is something in what they are saying is part of the danger. I'm wary of this new empathetic BPS view that appears to incorporate pacing and has us accepting our flawed selves and our negative emotions, applying self-compassion to accept ourselves and our new limited capacities. It sounds as if it's ok to give people with PPS a plausible explanation for the symptoms (any old plausible explanation will do - 'faulty HPA axis' springs to mind) to encourage us to accept our new limited reality and be happy with that.


Second, as an HCP, exploring patients’ experiences with symptom exacerbations—with attention paid to the experienced impact of physical limits and negative emotions—might be a useful starting point to gain an understanding of what your patient is struggling with on a daily basis and may create a common ground for supportive care to improve well-being and provide illness-based interventions and advice.
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To me it sounds like a recipe for insidious brainwashing - where the health professional 'helps' the patient to identify the 'real' reason for their illness, addressing their negative emotions. And where failure to improve is a failure in self-awareness.

(Minor edits to try to make my writing clearer.)
 
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Hutan said:
Of course, there is something in what they are saying, that if we keep trying to do what we could do before we became ill, we deteriorate. So accepting our new reality is important.

But the fact that there is something in what they are saying is part of the danger.
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That's the way of BPS. Mix in a couple of grains of truth, several dollops of correlation=causation, plus a heaped barrel of misinterpretation.

A couple of patients experienced that their symptoms represented or were exacerbated by negative emotions.
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What about the effects of positive emotions, that's what I want to know. Did they even look? I know extremes either way have an effect on me - the both chew through resources. They don't cause any magical improvement.
 
Is this part of the shift away from directive CBT to therapies like 'Acceptance and Commitment therapy' (ACT)? I haven't read the study, but from the bits quoted it sounds like they weren't just asking patients to describe their experiences, they were also trying to influence them, and making judgements about them. It gets more and more like a religion.
 
Does anyone remember the life of Bryon?

"We're the people's front of Judea! No we're not we're the Judean People's Front!". Or something quite similar .

These therapists & their therapies are like a dodgy double glazing company that rip people off and the open up shop again as a completely different company, under a different name doing more or less exactly the same thing.
 
Chalder is moving onto Acceptance and commitment therapy ☹️

There's a huge amount of frustration among MH patients at the idiotic comments therapists say.

Quote from psychotherapist on Twitter.
"When it comes to psychotherapy treatments, absence of evidence is not necessarily evidence of absence. "
 
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obeat said:
Chalder is moving onto Acceptance and commitment therapy ☹️

There's a huge amount of frustration among MH patients at the idiotic comments therapists say.

Quote from psychotherapist on Twitter.
"When it comes to psychotherapy treatments, absence of evidence is not necessarily evidence of absence. "
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Yeah, because the objective is to treat not to improve the life of the patient.

Would that attitude be okay for a dentist or an optician? Yet they expect to be regarded with the same respect.

Worse still, we know there are good mental professionals out there who are tainted by association.
 
Although symptom exacerbation were attributed to negative emotions by some patients in our study, patients also indicated initial difficulties in accepting the connection. In a recent study on consultations between GPs and patients, symptoms could be attributed to emotions when patients introduced this link themselves. However, when the GP introduced this link it tended to be denied.30 This again underlines the stigma that still pertains on mental distress and its relation to physical health.
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How about this again sodding underlines the fact that many of us do not experience this connection and suffer symptom exacerbation just as frequently when in a positive mood.

If participants agree with us it shows us that we are right, if participants disagree with us it shows us that we are right but the participants are having difficulties in accepting it.
 
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Three remarks:

1) The authors tried to select fluctuating’ and ‘seemingly stable’ patients but in the end there were little differences between the two. "Although we anticipated
differences in experience between these patients, this was in fact not the case."

2) one patient was described as follows:
One patient linked her symptoms solely to negative emotions and viewed her symptoms as a representation of these emotions. She found the solution in getting a hold of her emotions—that she attributed to her personal situation at that time. By changing her personal situation with the help of her religion, she explained she got rid of these negative feelings. At the time of the interview, she was free of symptoms.
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So was this person suffering from persistent physical symptoms? Says something about their inclusion criteria.

3) it is notable how patients described something like pacing as it is known in the ME/CFS community. Some quotes:
Patients mentioned the importance of respecting their
physical limits in order to prevent their symptoms from
worsening and to experience fewer ups and downs.
They experienced that ignoring their symptoms and
not taking their physical limits into account resulted in
symptom exacerbations. The lack of recognition and
validation of symptoms in the absence of a diagnosis or
plausible explanation was mentioned as creating diffi
culties in respecting and resigning to personal physical
limits.

...

Although many patients mentioned the importance of
resigning to physical limits, they described this ongoing
process as challenging and often frustrating. By resigning,
we mean that patients expressed the need to take their
physical limits seriously and anticipate by limiting their
activities in order to prevent exacerbations of symptoms.
Resigning to limits was experienced as different from
accepting their limits, as many kept struggling with the
acceptance of their physical limits.

...

Most patients eventually adjusted their daily planning
and routines to their physical limits and capabilities.
They mentioned pacing activities and resting effectively
as important strategies in gaining control over symptoms
and experiencing fewer ups and downs
Click to expand...
 
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