The prevalence and impact of psychoneuroimmunological factors in ME/CFS: Effects and mechanisms of ACT (2019) Olsson et al.

[Sly Saint]

In her recent lecture Trudie Chalder said

So in terms of the mechanisms of change then, going back to the PACE trial, we were wanting to know well what was it that needed to change in order to bring about a change in the outcome.

And if you think back to our model which was the fear avoidance model we were specifically interested in whether those beliefs were bringing about a change in the outcome.

We’ve developed a scale which has now been published when we were measuring fear avoidance, catastrophising, damage beliefs, embarrassment avoidance, symptom focussing, all or nothing behaviour, self reported and avoidance behaviour............
I have to thank Kimberly Goldsmith for the analysis, she is the wizard in terms of the statistics behind this

following on from this what she says strongly suggests that they are planning to do ACT trials on chronic fatigue in the UK. Hopefully (the way things are going) this will not happen but something to watch out for.

 

[rvallee]

In their recently published article Acceptance & Commitment Therapy for ME/CFS (Chronic Fatigue Syndrome) – a feasibility study (thread here) the authors concluded that "Changes in psychological flexibility are related to improvements."

Psychological flexibility is defined as "the ability to act in line with important long-term goals or values in life, even in the presence of negative experiences".

The Psychological Inflexibility in Pain Scale (PIPS)

"the avoidance subscale measures the self-reported tendency to engage in certain behaviours that lead to avoidance of pain and related distress, while the fusion subscale assesses the patients’ experienced frequency of thoughts that, if they are acted on, are likely to lead to avoidance behaviours"

Here are the PIPS questions:

1. I cancel planned activities when I am in pain. (Avoidance)

2. I say things like "I don't have any energy", "I am not well enough", "I don't have time", "I don't dare", "I have too much pain", "I feel too bad", or "I dont't feel like it". (Avoidance)

3. I need to understand what is wrong in order to move on. (Fusion)

4. Because of my pain, I no longer plan for the future. (Avoidance)

5. I avoid doing things when there is a risk it will hurt or make things worse. (Avoidance)

6. It is important to understand what causes my pain. (Fusion)

7. I don't do things that are important to me to avoid pain. (Avoidance)

8. I postpone things because of my pain. (Avoidance)

9. I would do almost anything to get rid of my pain. (Fusion)

10. It's not me that controls my life, it's my pain. (Avoidance)

11. I avoid planning activities because of my pain. (Avoidance)

12. It is important that I learn to control my pain. (Fusion)

Source: The Psychological Inflexibility in Pain Scale (PIPS). Wicksell, Olsson et al (2012)
https://onlinelibrary.wiley.com/doi/abs/10.1016/j.ejpain.2009.11.015

That's a weird questionnaire. It mixes so many concepts and as usual does not distinguish between "can not" and "will not". Complete waste of time and effort.

 

[rvallee]

Is there a drug we can give these idiots to induce constant pain and let's document their avoidance/ fusion behaviour?????

500CC of H20 to the face, perhaps? Daily until unhelpful beliefs about illness cease (no self-reporting, sorry, that's not robust).

 

[roller*]

That's a weird questionnaire. It mixes so many concepts and as usual does not distinguish between "can not" and "will not". Complete waste of time and effort.

would it be possible, that this forum develops a questionaire ... ?

absolutely not to "prove" or disprove anything, but really to get as many data together as possible..

e.g. to better define PEM, pain, various symptoms
like starting out with the main complaints (e.g. known things like "fatigue", "pem" ...)

and then add detailed info on physical status, means like hearing, vision, vestibular, bone, muscle ...
including what is perceived, what has been tested
and perhaps for each physical status thing what meds/supplements etc help

perhaps also distinguish whether people ever were on benzos, antidepressants (incl the types of them) ...

sounds like something huge, but such a forum could be a place for adding to research ...
it may be also usuable (or extended) for other diseases, like MS, parkinson...

alone the data collection from people with certain complaints could help in research to get better ideas ?

 

[rvallee]

would it be possible, that this forum develops a questionaire ... ?

absolutely not to "prove" or disprove anything, but really to get as many data together as possible..

e.g. to better define PEM, pain, various symptoms
like starting out with the main complaints (e.g. known things like "fatigue", "pem" ...)

and then add detailed info on physical status, means like hearing, vision, vestibular, bone, muscle ...
including what is perceived, what has been tested
and perhaps for each physical status thing what meds/supplements etc help

perhaps also distinguish whether people ever were on benzos, antidepressants (incl the types of them) ...

sounds like something huge, but such a forum could be a place for adding to research ...
it may be also usuable (or extended) for other diseases, like MS, parkinson...

alone the data collection from people with certain complaints could help in research to get better ideas ?

Leonard Jason has been working on that for a while. I think his team will likely produce something useful.

But psychosocial studies and trials use those questionnaires precisely because they are misleading and blur the distinction, so nothing would change on their front. That their questionnaires do not distinguish "can not" and "will not" is a feature, not a bug, because that's what they believe they're seeing, that our "perceived can not" is actually a "repressed will not".