Outcome Measures for Functional Neurological Disorder: A Review of the Theoretical Complexities, 2019, Edwards, Stone et al

Paywall, https://neuro.psychiatryonline.org/doi/10.1176/appi.neuropsych.19060128
Not available via Sci hub at time of posting.

 

They don't have the Stones to go through with a methodology that would give a convincing answer.

Convincing outcomes probably wouldn't be too difficult to come up with. One suspects the issue is aversion to investing appreciable time and effort into a study with a high probability of definitive null outcome.

Much better to churn out a bunch of quick studies with pseudoscientific methods. Any positive results manufactured can add to peoples' pretext to believe what they already believed, and do what they were already doing. Negative results won't threaten to torpedo the whole project and give valuable feedback on how to manufacture desired results going forward.

 

The core issue then in working toward supposed viable measuring tools for poorly defined illness (complex neuropsychiatric disorder/aka difficult people) is the adopting of the subjective POV as primary over any objective measures.

Very clever. Listen to patients tell BPS cabal that patients are not listened to (when told GET/CBT work to restore function) and as the BPS loose ground there (because they're wrong) propose reasons why adopting the subjective POV is the relevant way of assessing poorly defined illness (their FDN).

My limited brain probably isn't up to it but I think it would be good to have a discussion about all the reasons why subjective measures are inadequate because they are so malleable and easily manipulated.

It's important to listen to patients and their experience of illness but people are not always free of error in the language they use to describe a symptom (often the language is not available to be precise) or in memory recall. And yes sometimes initially they may focus on symptoms in an effort to understand what is happening to them when there seems to be no clear answer.

 

Real scientists usually begin by making sure they are able to measure the thing they are testing for, not as an afterthought a full century later.

Somehow that has never stopped people from claiming they are improving outcomes. Which they don't measure. Because who cares about evidence when you believe in something? The plural of anecdotes truly is data if you apply a MD transform on a maligned patient population.

Then again, it's hard to measure something when you define it wrong and pretend to understand it when you don't. No one ever developed an accurate way of measuring humours or phlogistons either.

One useful experiment would be to take diseases that would have been qualified as FND pre-breakthrough, like Parkinson's, MS, peptic ulcers, lupus, etc. and evaluate how it could have been possible to distinguish them and evaluate them on their own relevant criteria. But that's not an experiment that anyone in FND is about to undertake, failures of the past simply do not exist and have no bearing on the failings of the present and future. It's not as if this was important, or people's lives depended on it, or anything like that. Just keep speculating BS in your echo chamber, it's all fine, no matter how much harm it will be no foul, there never is (though maybe not this time, we'll see).

 

How would they know what is relevant when they've never bothered to ask patients?!

 

I can't seem to access this through the Berkeley online library access. Has anyone seen it?

 

This is the link to download the manuscript as a word document:
https://kclpure.kcl.ac.uk/portal/files/117052402/Nicholson_et_al..docx

I found it at this page:
https://kclpure.kcl.ac.uk/portal/en...es(11c777d0-61a1-48fe-8902-6a35d47dc031).html


I couldn't get it through sci-hub.