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

Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, Jul 14, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://bmjopen.bmj.com/content/10/7/e035833.info

    eta:
     
  2. rvallee

    rvallee Senior Member (Voting Rights)

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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:
    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.
     
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  3. Hutan

    Hutan Moderator Staff Member

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    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,

    There is acknowledgement of symptom variability, and 'overstepping physical limits' is recognised as a cause of symptom worsening:

    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:
    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.

    With respect to strategies for coping, the authors highlight 'resigning to physical limits', 'adjusting daily planning', 'weighing personal needs and learning to say 'no''.

    One thing to watch for in other papers and policies is this differentiation between resignation and acceptance:
    So, it seems that acceptance is good, but resignation is bad.

    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.


    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.)
     
    Last edited: Jul 15, 2020
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    15 participants 9 authors- am I just a mega cynic but I’m going to say why on earth?
     
  5. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I'll put your name on my paper if you put my name on yours! ;)
     
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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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.

    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.
     
  7. Trish

    Trish Moderator Staff Member

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    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.
     
  8. strategist

    strategist Senior Member (Voting Rights)

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    The solutions they propose involve a therapist. If there is no need for a therapist, they make up a reason.
     
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    Perfectly right and proper. Someone has to worry about the unemployment figures at this time.
     
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  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    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.
     
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  11. obeat

    obeat Senior Member (Voting Rights)

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    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. "
     
    Last edited: Jul 15, 2020
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  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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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.
     
  13. wdb

    wdb Senior Member (Voting Rights)

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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.
     
    Last edited: Jul 15, 2020
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    Why don’t they just do the 1 to 1s or group session among themselves save the bother for patients? They’ve already got the draft findings before they do the work with patients. It’s 90% generic.
     
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  15. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think you might be meaning 'the life of brian'? The Monty Python movie.
     
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  16. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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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:
    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:
     
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  17. chrisb

    chrisb Senior Member (Voting Rights)

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    One needs to ask , though, whether they have gained control over symptoms or symptoms have gained control over them.

    EDIT you don't gain control over symptoms by surrendering to them, but the alternatives may be far worse.
     

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