Trial Report The presence of attentional and interpretation biases in patients with severe MS-related fatigue (also ME/CFS), 2024, Knoop, Moss-Morris et al

When there is a threat hypervigilance and an evaluation strategy that results in increased false positives are rational responses. This does not mean that hypervigilance or higher rates of false positives are the cause of the threat.

 

But there is also in eg marketing/business literature discussion of saliency and involvement. None of which are any insinuation on the 'emotional processes' of the individual, just state that the item in question as presented is more relevant to some than others. I doubt this goes near hypervigilance levels anyway. PLus they haven't proven that their measure: time to reply isn't just them taking advantage of the disabled group being slower in general and them basically having contrived to say 'if the disabled group are slower it means all that nonsense', which would be like using dyslexics vs those without dyslexia to make the same claim. Or have I missed the round where pwMS suddenly sped up when it was 'custard and custard' ?

I think we have to realise that reading through a pointless list of words is both pointless and boring and people stop bothering to take them in. Which is why there is an industry called copywriting and marketing, so that at least if a lot of blaah is written someone has made some attempt at understanding the target audience and what they are expecting to see written about on that page/ad and so on.

I'm slightly sure @rvallee could add a bit about how A/B testing is properly used by an industry that actually doesn't contrive results because er you know they actually want to use the real answer/get to the truth. I don't understand why people are allowed to pretend they can't read another literature when the topic-matter is identical and provides the exact info they need to make their method not nonsense.


And of course as you've recruited people under some pretext the only thing of interest by that point might be the puzzle of guessing what is really being tested. Unless for example you are a professional control who does these things a lot more than eg someone who has severe MS and it takes a lot out of them.

Plus

If they started listing words that all had to do with building and some of those who were reading them happened to work in the surveying industry or were in the middle of moving house (looking for, buying, having a survey) or having their own repairs done then they might bat more of an eyelid over the word 'plaster' or 'joist' than those who either have never thought about buying or have been settled in their own for many years and couldn't care less/find this stuff disinteresting.

Same thing if you had people who had an element of legal in their role and some of the words had such meanings/implications, but mean nothing more than custard does to others.

They've basically just deliberately picked a bunch of boring words that have little meaning or point to anyone, then if any word gets any sort of 'increase' are making outrageously unsubstantiated claims. WHen the obvious, explained in the literature and so should have been controlled for in their design, explanation is you've got a load of people waiting for something that makes their trip in for the 'experiment' not pointless. They are 'waiting for it to start'. Just like sitting through the ads at the cinema in the old days and some indicator that the film is nearly going to begin - like the bit where they advertise the company of the film - might get everyone in the movie theatre starting to prick up their ears. Sadly it sounds like for this one the 'film' never came. And as for the controls I suspect the lower difference is because they are less 'involved' with whether the whole thing is pointless because that isn't their motivation so they are 'dulled' to it all.

In this way the word 'tired' doesn't have to 'mean' anything along the lines of the authors' nonsense, just that if you got a load of people with a severe form of one illness in for an experiment and presented them with a list of nonsense they might be intrigued to finally see anything that might have any relevance to the BS they got given to drag them in there.

And controls of course wouldn't be 'up' with the list of symptoms because why would you.

 

When I think back about 20 or 30 years, people with MS were understood to be ill with a horrible disease that could or would paralyse them. Now, there is a group of people determined to minimise the disease and turn it into a mental illness, and generate some attention for their own sadistic theories. The only reasons I can think of for doing this are a) because the sufferers are majority female and many people assume that women are attention-seekers who aren't really ill and b) minimising their disease could save money by denying benefits.

 

Ironic choice of words:

I guess in our case it's not understandable. Which is kinda true, they don't understand it. But that's irrelevant, it's not possible to understand everything, and nothing they do will lead them to that. All they're doing is showing their extreme biases and how utterly useless this entire way of doing this is. Absolutely no one will give a damn about any of this once there is even a minor breakthrough, these quacks may as well drink beer all day for all that their jobs matter. They are even less economically active than us, their job is a net negative, it takes from the economy and produces nothing of value. It would be laughable if it wasn't so tragically harmful to millions.

 

It was slowed down a bit by the pandemic but the likes of Ross Morris were very close to the MS society and there were various mind/ body schemes promoting meditation, sunshine, and diet, that sort of thing, gaining a lot of popularity among patients.

There is a general belief in the population that exercise is good and that lifestyle choices prime the body to heal and having a disease like MS which is scary and unpredictable means these sort of ideas give a sense of control.

Oh and the almost miraculous lessening of fatigue in CSF, as shown in the PACE trial, was a persuasive argument as well!