Study protocol for POSITIF, ... feasibility trial of a brief cognitive-behavioural intervention ... for post-stroke fatigue, 2020, Gillespie, Chalder

So... they're spinning a failed trial into a feasibility trial? Since it didn't produce the outcomes they expected, they're basically saying: "welp, we know we can do this thing, which has been done thousands of times before, don't mind the data we produced, not valid because, uh, reasons".

How much money was wasted on what is basically "can we get people to drink a glass of water, then report how thirsty they are after?", which has been set to waste even more because they didn't get the results they wanted?

And of course that retention rate. Now that's how you know something is a waste of time.

Do they think they have to find the magic words? The perfect explanation? The right tone? They keep doing these trials the same way over and over again. Without changing anything substantial. This is seriously an even worse scandal than the amyloid AD thing, because they aren't trying different solutions to fix an issue that isn't the real problem, they are trying the same solution every single time to solve an issue that isn't the real problem, or even A real problem.

Oh wow, didn't even notice it's Chalder. Who did a feasibility study on a formula she used dozens of times, the exact same formula. Who keeps funding these people?! No wonder everything is so broken.

 

Chest Heart & Stroke Scotland and NHMRC

"Funding
Chest Heart and Stroke Scotland (CHSS) provided funding for this study (Grant reference: Res16/A168). During the completion of this work, Maree Hackett was supported by a National Health and Medical Research Council Career Development Fellowship Level 2 (APP1141328)."

 

to be fair (even) to Trudie Chalder, they did call it a feasibility trial in the protocol. it's true the findings suggest this is a dead end so just because it might be "feasible" to do doesn't mean it makes any sense.

 

@Amw66 can you raise this with your Scottish colleagues,as it was part funded by a Scottish org?

 

Yes. I will . Thanks for flagging it up.

 

In what world does it make sense to make a trial out of this?! The "question" is basically: can we do a psychological trial. What is this trivial nonsense?! And concluding that it makes sense to go ahead despite the data making it clear it's not?

This is a complete waste of funding. It shows complete rot within medical research. We can't get funding for real research, and this, THIS, they fund?! Pathetic.

 

i agree with you! it makes no sense. All I was saying was that they always said it was a feasibility study.

 

Trial By Error: Professor Chalder Reports CBT Does Not Work for Post-Stroke Fatigue, Calls for More Research

https://www.virology.ws/2022/07/26/...-post-stroke-fatigue-calls-for-more-research/

 

I'm interested because the findings and drop-out data are stark. I think there needs to be a check (and if needed a campaign) whether 'implicit threats/nudges/warnings' exist and/or existed for those dumped into the various categories of ME, CFS, MUS, PPS and the like under a paradigm where 'nod and leave' was required by most in an attempt to keep themselves safe.

I don't know the situation for those who have had a stroke but I suspect this is lower. SO I compare these also in my mind as 'free will' data and outcomes vs the 'not in a situation where free will is ensured/at the same level', and I think someone should be doing some research into whether this is correct and how big the effect difference might be if so. Another significant 'differentiating factor' between this study and the others, other than the original condition.

It would be rather powerful to see if 'situational factors' like this effectively drive 'response range'. And for the extent of what these can include to be annotated as safety is a big Maslow's need which could drive a lot. There's also the complex stuff related to the stigma/attitude (and how deep that goes through other pathways patients might need to engage with and ergo 'play the game' to manage). Perhaps also there is a take it or leave it nature/choice of the departments being 'add-ons' for stroke patients in this research (e.g. is the question they were asked: do you want to do CBT as part of research with this new person in another department you'll never have to see again if you say no?), but 'in charge' of various things that can have impact for those who are 'put under their care' due to other diagnoses. Stroke patients might be seeing other HCPs giving them necessary objective assessment/treatments etc (given 'perception of improvement' even when or activity level is actually declining is what Knoop etc themselves have noted is the driver, hence no telling people acimeter readings etc)?

Such research - or even just a report picking through anything obvious between the two situations - could also highlight where guidelines for future research of this type and clinic set-ups (where self-assessment etc takes place) and oversight might be changed as this area feels like it can be removed/reduced with serious methodological changes/safeguards. ie if various issues/influence is present then a lot could be done about it and it could be written into protocols for studies where such patients are being recruited/post-hoc data being looked at?

 

The most gullible? And even in those, the intervention didn’t work. I don’t understand how these people keep getting funded for this sort of work.