NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

Trish said:
So disheartening. I immediately think this needs a response. Is there any point?
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Yes, but it’s taken them a long time to come up with a pretty feeble response.

They write: “We do not have space here to address every error but simply outline some of the most major areas of disagreement.”

There would have been space if they had submitted an article for peer review (as Barry et al did) but they have chosen to submit a Rapid Response, which is limited to 600 words and is not peer-reviewed.
 
Robert 1973 said:
Yes, but it’s taken them a long time to come up with a pretty feeble response.

They write: “We do not have space here to address every error but simply outline some of the most major areas of disagreement.”

There would have been space if they had submitted an article for peer review (as Barry et al did) but they have chosen to submit a Rapid Response, which is limited to 600 words and is not peer-reviewed.
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I think they just want the last word. Don't forget the Barry et al paper was a response to their original paper.
 
Peter Trewhitt said:
So is this also an indicator of who is holding up any action in relation to the Cochrane exercise review?
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For sure this is all related. They haven't published anything new for 2 decades and are just coasting on their original claim. They won't be producing anything new in the next decades either. All they have is working behind the scenes. It's done very well for them so far. They can only work to uphold the work they did, no matter how bad it is. It's not as if they can do anything more with this.

As usual, all they have is "nuh uh", and they do that because it works. This is a small cult of maybe 40-50 people and they completely control and ruin the lives of millions. We're about to close 5 years of Long Covid and it hasn't made a single dent in this. It's really absurd how dysfunctional medicine is.
 
ME/CFS Skeptic said:
Jon Stone and Alan Carson have also signed that statement. I know they are FND experts but as far as I'm aware they have never researched or published about ME/CFS.
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Ah we know why ;)

They know why ;)

But they can lie about it anyway. Because really the problem is not with them. They are clearly deranged but their misbehavior is enabled and defended at the highest levels. Broken systems unable to fulfil their basic functions.
 
Amw66 said:
https://twitter.com/user/status/1849466384834826743


not to generalizing to an entire field of course but I'm glad some of these psychiatrists found psychiatry because they would not be able to hack it as pe majors omg
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I don't think that such underestimations are helpful (and I am fairly certain many of them could have obtained a PE major if they had wished to do so). Being smart and a good scholar and being blinded by your own beliefs don't have to always contradict each other or as Feynman said "The first principle is that you must not fool yourself and you are the easiest person to fool".
 
The fact that the response as been done via Rapid Responses might be a decision from the journal, they might have denied the authors a more 'authoritative' prominence. Which in turn might suggest the journal is not interested in giving the debate any further prominence, at least in their journal, and/or that they are not impressed by the quality of the author's arguments.

If so, then I am not unhappy about that. :thumbsup:
 
JohnTheJack said:
'A “software” issue of the brain, not the hardware (as in stroke or MS)'

New dualism.
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It’s so sinister when you think about what they mean. Imagine an old gaming system where you put a cartridge or cd in and then it took a while to ‘load’ and then you could play super Mario bros or a racing game.

even with those many errors might be hardware , in fact the only errors that are software is the disc git scratched so doesn’t play or jumps so you can’t play certain levels or something warped the code

the solution is you just get a new disc ie re buy the same game

but do they even mean that these days - that disc itself isn’t even the ‘software’ it’s the vehicle in which it’s based.

so it is just I think then really thinking the body weirdly has no feedback loop two way systems but it is all brain-down (which I sssumed was them trying to blah themselves to the top of the medical hierarchy) and that ‘someone put in the wrong code’ - either entirely the wrong fake ie ‘we think our body is broken’ when if we’d played the version where we think it isn’t , that ‘storyline’ is removed, then our body wouldn’t be broken.

or maybe they might mean like when someone forgot a colon or slash so that bit won’t run - but I don’t think it’s even that

I’m convinced this is just a pseudo phrase for what they really think is human beings being able to be reprogrammed to play a different story and those pesky disabled just chose the game where they were unable to move, and if you forcibly switched that out…

that’s why we’ve got all this re education idea by software they really are saying there’s a gap in how you think what you ask yourself to do how you direct your body.

I think they actually mean reprogramming humans with a new ‘narrative’ or morals snd norms so that they believe humans don’t break from overwork or abuse


Edited to add:
and I think it’s not about them thinking these illnesses are caused by ‘anormal’ or errors but it some bonkers delusion some have that there is some theoretical possibility you can reprogrammed some humans so they should be able to live in worse conditions and work til they drop (except do they really think that drop part will disappear if what are they really programming in to ‘happen’ when these body parts wear out?) and not exhibit pesky sude-effects from it . Like brain retraining means the poor won’t get respiratory conditions and age faster or be less productive from living in mouldy accommodation- because you know ‘the mind can do that’

are they that mad or is it about putting enough doubts of these no-brainer physical phenomena out there that legal liability can be undermined? You know like it’s not arthritis hastened by that bad equipment and too many hours with no breaks if some dodgy scientists write a manifesto saying ‘maybe the body is protected from that by thinking happy thoughts’

when I hear eg Sharpe I often don’t think even he believes what he is saying just that he is selling that he thinks he can get these beliefs changed . I don’t hear much about him healing anyone just missions for example. Visions of a new world ‘where everyone is treated as if they have psych’

but I don’t know if these guys are in this pseudophil sophism camp or genuinely think they are discovering some what ifs due to their pseudo Phil approach to a science subject.
 
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ME/CFS Skeptic said:
Jon Stone and Alan Carson have also signed that statement. I know they are FND experts but as far as I'm aware they have never researched or published about ME/CFS.
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The FND literature is quite variable. Some include ME/CFS, fibromyalgia along with non epileptic seizures and unexplained movement disorders in one FND category. As in MUS. A big list of conditions that no one knows what is wrong.

FND can mean pretty much anything to all neurologists, in some quarters. It's as broad as the believer wishes it to be. And varies with the context.

I made a presentation to 70 pain psychologists recently. The creep to label pretty much all that is not understood as FND is causing a lot of concerns. It's confusing and upsetting patients needlessly and leading to misdiagnosis of rarer autoimmune and neuro-infectious diseases. Recent grand rounds at regional neurological hospital apparently highlighted this. Good to hear.
 
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