Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique -Antcliff, Keenan et al Nov 2019

Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique

https://onlinelibrary.wiley.com/doi/abs/10.1002/msc.1430

(not yet available on sci-hub)

 

@PhysiosforME

 

That's a completely pointless exercise. It takes the two most common symptoms in all of medicine, both with entire ranges of different meanings and circumstances, and tries to find a universal framework. This is way over simplistic and essentially pointless because of the confusion that has polluted the entire field of medicine around those two symptoms.

Of course normally this kind of thing would be modulated by an understanding that there are exceptions but this is precisely one area where this fails miserably and universally in practice because it's far too generic and open to interpretation and boy is there a lot of interpretation going on about chronic symptoms, especially those two.

You can stop paving the road to hell. It's seriously over-paved as it is. It has so many layers of paving in fact that it's getting inoperable. Good intentions without common sense all lead to the same place.

 

Thanks for highlighting this - we have been in email correspondence with the authors and were quite forceful back to them when they rejected our challenge about the need to highlight the difference for people with ME
Will definitely get on this one ASAP

 

Thank you

 

https://twitter.com/user/status/1198262120732864512
for the twitter feed of our response

https://www.facebook.com/PhysiosforME/ for the longer version

There is a lot more we could say but have tried to get over key messages that would appeal to our physio/OT colleagues who might pick this up

 

Communication is about listeners comprehending a message and gaining new insights from it. Information overload achieves none of that, and if anything alienates people to any further attempts. You got it right I think.

 

thank you

 

This is excellent. Thank you! Even if it doesn't lead to immediate change, it's important to have it out there, to add up to the evidence of how morally and intellectually bankrupt the entire BPS ME paradigm is. Opinions matter, but people should not be allowed their own facts.

 

Bit of a small sample. 10! And WTF is "purposive sampling"?

 

It's nominal group apparently.
A group in name but maybe no more.

 

It really is ridiculous that this 'study' is published in something you have to pay for access to.
In whose interest is it to put something on the internet in this form when one of the authors could have put it on a public website?
Who is this for? - I get the strong impression it is for the benefit of professionals, not patients.

 

You also cannot write to respond to articles published in this journal - we tried!

 

That's bloody disgusting. Speechless beyond wot i just sed.

 

https://methods.sagepub.com/reference/encyclopedia-of-survey-research-methods/n419.xml

"A purposive sample, also referred to as a judgmental or expert sample, is a type of nonprobability sample. The main objective of a purposive sample is to produce a sample that can be logically assumed to be representative of the population. This is often accomplished by applying expert knowledge of the population to select in a nonrandom manner a sample of elements that represents a cross-section of the population."

So there you go then - no chance of any kind of selection bias there then! "Expert knowledge", "logically assumed". What could possibly go wrong .

 

So that's it then. Western culture has turned into.... moosh

What hope is there?

Little hope that the Oxford Dictionary recognises 'nonprobability' as the neologism of the year.

Yet there is hope - there is S4ME.

 

Would you believe it, Wikipedia tells us:

Nonprobability sampling does not meet this criterion and, as any methodological decision, should adjust to the research question that one envisages to answer. Nonprobability sampling techniques are not intended to be used to infer from the sample to the general population in statistical terms. Instead, for example, grounded theory can be produced through iterative non-probability sampling until theoretical saturation is reached (Strauss and Corbin, 1990).