Illness perceptions in adolescents with CFS (2019) Cara Haines, Maria Loades, Cara Davis

It seems we throw a lot of money on this kind of stuff in the UK. We could have explored, for example, prevalence of OI in adolescents …..something objective that has a treatment option for symptoms.. ( oh look there's a flying pig...)

 

That's how it seems. Why is that? Seriously, not being sarcastic. Just trying to understand.

 

Take a large dose of cognitive dissonance, add a sprinkling of reputational reinforcement ( needed for career advancement) and stir with the spoon marked politically appropriate ( devised to both enhance a perceived cost benefit ratio in both healthcare and benefits, and facilitate the enduring legacy of psychological intervention for this illness)
It' s a pretty potent brew.

 

My commentary to this article was published today: “The illness perceptions of CFS patients are evidence based.”
https://journals.sagepub.com/doi/full/10.1177/1359104519846606

The authors' response can be found here:
https://journals.sagepub.com/doi/full/10.1177/1359104519846571

They seem to disagree with my claim that CBT does not lead to long-term improvements in adolescents with CFS. I would recommend reading the three follow-up studies they cite, so you can make your own conclusion.

EDIT: this post and the subsequent comments were originally posted in the wrong thread, namely Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort, 2019, Loades et al. I seem to have confused the paper I wrote a commentary on with another one by the same research team. I apologize for the confusion. Luckily the moderators were willing the repost the comments here in the relevant thread.

 

Their response is frustrating. Do they not understand what subjective improvements are and why they may be problematic alone?

 

me neither.

 

To someone who thinks they are dealing with a subjective illness, subjective improvement is not problematic.

The problem is having people who have no idea what they're talking about believing they do know what they are talking about. Dunning-Kruger taken all the way to 11.

Ironically it's their own subjective perception that creates those assumptions. But then they can't see that either.

 

The response is also on sci-hub (I couldn't access it at the journal): http://sci-hub.se/https://journals.sagepub.com/doi/abs/10.1177/1359104519846571?journalCode=ccpa

I can't tell if she deliberately avoided the central point of your letter or just did not understand it.

 

echos of "We prefer our description of recovery"

 

I think it's strange that they focused on long-term outcomes of CBT for adolescents. Because 2 out of the 3 studies they mentioned, did no longer find a significant difference between CBT and the control group. And of course the same is true for the largest CBT-trial for adults with CFS.

 

This is, yet again, extremely poor use of limited resources.

Take all the money that was spent on 3 decades of this garbage research and burn it all. It will provide more value to society for having been spared of so much nonsense.

The tolerance for mediocrity within medicine is far too high. Education is thoroughly wasted on fools.