Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

Again, what is this based on? I haven't seen any communications from Todd indicating that he's not writing to Nature. Do you know otherwise? I mean, I have no idea--that's why I'm asking.

 

This is exactly right. Any normal person would have an interpretation of "effort preference" to mean what it obviously means in standard English. If you're using it to mean something non-psychological and a trait of brain networks, don't fucking use psychological terms that lend themselves to the misinterpretation you claim you don't mean. It's a pretty simple principle.

 

@dave30th you couldn’t be more on the money my son.

 

This post, in particular, suggests he isn’t writing to the journal.

https://twitter.com/user/status/1763474108619391340

 

I actually think that not only are experts talking past the common interpreter but the authors are talking past each other. Central immune signals are not going to alter conscious decision making other than through generating unpleasant symptoms and involuntary inhibitions. They cannot be 'effort preference'. Nath's interpretation is quite different from Walitt's I suspect. But things are muddled by Nath suggesting that the two interpretations are compatible when they aren't.

 

I can see where one might decide to interpret it that way, but I don't think anything of the kind should be assumed from a tweet like that if there was no follow up or anything. He's making a comment on social media in the heat of a big public debate. He didn't say he wasn't going to write one. And people seem not to understand that often these kinds of letters are written in collaboration with others as people discuss and debate how to respond. Nothing happens on the second day unless there are, say, rapid response mechanisms. Again, I have no idea. But for people to take slaps at him if this is what it's based on doesn't seem very fair to me.

 

https://www.nih.gov/news-events/nih-research-matters/insight-into-mechanisms-mecfs

"These findings suggest that the fatigue of those with PI-ME/CFS might be caused by dysfunction in the way the brain decides how to exert effort."

“Rather than physical exhaustion or a lack of motivation,” says first author Dr. Brian Walitt, “fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform.”

It's not hard to guess which sound bites much of the press will hear, and which will endure.

 

Apologies, I should have linked to that tweet instead of just reporting my speculation! The post that livinglighter linked to is indeed the one I was referring to, and the impression about Todd's capacity at the moment was gleaned from scrolling through his posts about being too busy for certain kinds of work and responses. It absolutely wasn't intended to be a slap against him - I think we're more understanding than most that sometimes there just isn't enough energy for everything you want to do.

 

Interesting - Solve article mentions people with another disease which could be responsible for their symptoms.

• Rates of misdiagnosis?
• Strategies to avoid same - better diagnostic tests - did NIH launch a strategy to address this?

Seems to provide basis for specialist clinics i.e. to ensure better diagnosis?

 

this, this is the evidence that this was PROBABLY planned beforehand. I had detected the exact same similitude between that part of the paper and Walitt previous statements, they're identical. The results where PROBABLY written even before this study started. Something is very, very wrong with this study

There ¡s another quote by Walitt that seems to be consistent with what he wrote on the latest paper:
"The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome"
from this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/

 

agreed. along with:

I wonder if the audience they are really playing to is indicated by this, or are they oblivious to how these collections of this type of response are coming across as very Michael Winner 'calm down dear, it's only a commercial' (except that one is half tongue-in-cheek) Michael Winner Esure advert (youtube.com)

even if they are as correct as they think they are in 'the finding' and it 'being important the community understands it' ?

 

it is like using 'no offence' and expecting that means the person it is being said to must be over-sensitive if they find what is said next inappropriate.

Am I correct in thinking that the brain regions were taken when (B) - during the grip test?

and then they've linked the grip test with EEfRT by doing a graph to claim a correlation and called it 'effort preference' (A)

yep it definitely isn't 2. of B causes A which causes C. I'd go so far as to say they might be sewing the narrative A causes C (and everything else) , and that B is more about having something to point at and make A look more 'sciencey': 'look at this lighting up when I go near the vander-graph generator' type thing.

I've currently no idea what they were measuring during B as all they have is a difference in areas that do lots of different things whilst ME-CFS and HVs seem to be in quite different situations to each other.

 

hmm I think we need to be careful. I need to look at the grip test stuff but surely trying to suggest that not being able to grip as long is a preference of any kind should require a lot of evidence. Otherwise it is plain disability-bigotry, certainly if the word 'preference' is anywhere near it.

I do not care about their pretend excuses.

It would be like them saying men prefer not to give birth. I'm sure they can find the stats to show that is the case by using a similar methodological logic. And it might be true as well in layman's terms. But it isn't the reason we have a smaller % of men giving birth than women?

I'm cynical of any scientist who would prefer to sew misinterpretation rather than choose a measure that explains things appropriately and a term for said measure that does what it says on the tin, or at least doesn't contradict that

Doubling down and pretending not to hear the question, or 'y'all just being too sensitive about the term, the important bit is...' isn't filling me with confidence

 

We all have daily due to our conditions at various severities invidious choices. It is like a horribly real game of 'would you rather drink drain water or eat ten leaves?' living with ME - the most common of which is: 'do you end up potentially more disabled (and certainly ill for a long time) by doing 'the thing' the way the person is coercing you into, or will fighting said person leave you either more disabled or risk physical/financial/freedom and so on harm'?

Except what isn't a choice - which is the part where the preference is nonsense - is that we don't get to avoid consequences one way or another if we do 'the thing' or if whatever (the people above) is 'done to us'.

And the harm data from the PACE trial shows that, when you look at long-term follow-up, and there is yet to be long-term follow-up checks for those who completed these tasks/tests and all the travel and whatnot involved. If not done in due course then it would be shamefully to these scientists not acknowledging it/checking it wasn't the case.

All they've really got is how a number of people with a horrible illness ended up acting in the short-term when they were under pressure in a strange environment and mapping what they claim were choices without looking at the real 'measures' or follow-ups

I'm putting this aside - which would be the real thing given CDC acknowledged PEM in around 2018 etc - for now, simply because the other methodological stuff is so poor and makes little sense as to what they thought they were measuring in the mean time for some of these things. But other things might be useful. It's just a same there is so much having to filter the chaff to see if there is any wheat etc.

 

from the thread on reddit yesterday: energy conservation

 

exactly

nor do they.

 

And tinnitus?
or migraine?
or insomnia?

The real question is whether it is a Walitt disease or a Nath disease.
Walitt says there was nothing wrong so it is a Walitt disease.
Nath says there was loads wrong so it is a Nath disease. But Walitt is doing great.

Maybe they should have sorted out what they wanted to say other than, in reality, writing two conclusions one after the other that say the opposite

 

Indeed, "calm down dear, it's only a commercial" when someone just ran into your car. Note the choice of the word "anxiety" instead of "concern", it categorizes criticism as emotionality fuelled by irrational fear, and thereby as something that can be dismissed.

I think Nath and Koroshetz's replies are ridiculous.

I find this jawdropping: a paper is THE communication medium for presenting your finds and articulating your views and arguments around them. It's THE place where you connect with others about what you have done, and you must do so in a way that is clear and without a shred of ambiguity. That's like paper writing 101.

When you have to respond to criticism on your paper with "yeah, but what we really meant was...", then you've messed up.

Are we supposed to believe or accept that this study cost 8 million dollars, took 8 years, and has small village of authors (75), but none of that produced a paper that says what they mean?