Criticisms of DecodeME in the media - and responses to the criticisms

Utsikt said:
Carson should take his own advice - he doesn’t have unique insight either.

So maybe we should at least trust the patients when they say that X doesn’t work for them. Their reasoning for why might be wrong, but their conclusion can still be right, because the reasoning is an after the fact attempt at explaining the perceived effect.
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Alan Carson.jpg

Pretty hard to challenge him on his views.
 
Carson seems to believe fatigue can be treated by modifying expectations.

When I read that, I feel misunderstood because the experience of the illness includes the strong experience of POWERLESSNESS of positive expectations, attitudes, thinking, and the difficulty predicting things precisely, and the POWERLESSNESS to overcome fatigue despite extreme effort and motivation. More effort will just lead to worse fatigue (over time). That's why I have learned to not struggle too much... not because I'm lacking the ability to be positive and motivated, but because I know it will not work. The positivity is POWERLESS and leads to futile struggles that end in crashes that make things worse.

Of course, Carson would interpret my words as evidence as consistent with the idea that expectations and beliefs are causing the symptoms, instead of a description of the illness dynamics.

He is probably confusing "getting patients to talk about fatigue differently in a medical setting or filling out questionnaires differently" with "successfully treating fatigue".

He is an academic in an ivory tower that is clueless about the real world. It's like listening to a person that is utterly convinced that patients have never tried positive expectations and seen what effect that has. That suggests he has no contact with ME/CFS patients to whom he could listen and learn from.
 
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Hoopoe said:
Carson seems to believe fatigue can be treated by modifying expectations.

When I read that, I feel misunderstood because the experience of the illness includes the strong experience of POWERLESSNESS of positive expectations, attitudes, thinking, and the difficulty predicting things precisely, and the POWERLESSNESS to overcome fatigue despite extreme effort and motivation. More effort will just lead to worse fatigue (over time). That's why I have learned to not struggle too much... not because I'm lacking the ability to be positive and motivated, but because I know it will not work. The positivity is POWERLESS and leads to futile struggles that end in crashes that make things worse.

It's bordering on insane to suggest that fatigue can be treated by modifying expectations. He is probably confusing "getting patients to talk about fatigue differently in a medical setting or filling out questionnaires differently" with "successfully treating fatigue".

He is an academic in an ivory tower that is clueless about the real world.
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It also flies in the face of what the neuroscience actually tells us, because fatigue isn’t based on a predictive system at all.
 
Mij said:
‘Bottom up’ incoming signals which be of our internal state ‘interoception’ our movement in the world ‘proprioceptio’ our our awareness if the external world ‘exteroception’. Our prior expection and attentional ‘spitlight’ has a significant preconscious modifying effect
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The dumbness goes very deep. As we have pointed out, this theory predicts the opposite of what Carson is claiming.
 
Eleanor said:
Really good letter @Robert 1973

Andrew Millar: "Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed."

Funny how appropriate scepticism of scantily evidenced claims didn't prevent numerous behaviouralists' research getting funded...
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There literally where frontpage headlines after PACE, as scantily evidenced as it gets, about how it means that exercise and happy thoughts are the cure for chronic fatigue. We were literally the only people criticizing what were blatantly fraudulent assertions not backed by any evidence, and while the claims have continued, the evidence has only gotten weaker since, much of it revealed to be fraudulent.

Anyone who accepted those claims, especially those who still do today, have no credibility at all in arguing against shoddy evidence. But they still do, which means the reasons for their poor judgment are still in effect. They are basically the people who bet the farm, OUR FARM, on magical beans. About the only retort to them should take the form of a simple: sit down and shut up.
 
V.R.T. said:
In a sane world it would be the other way around. You would rule out ME/CFS if you suspected depression.
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Plus there is the loud and awkward fact that they, or anyone, cannot do that. If anyone, whether psychologists, psychiatrists or any other group of medical professionals could do that reliably, they already would have. The fact that they have not done that is all the proof that's needed that they cannot, as a matter of fact, do such a thing.

As an argument it's the same thing as requiring that any criminal investigation be first determined by the use of a psychic who will certify whether the accused did it, by reading their mind or whatever. Any psychic can do that as truly as any mental health professional can "rule out" depression in anyone, it's simply not a thing, a fake skill that no one has ever reliably applied.

What an absurd thing to argue still. No serious person would ever make such an argument, completely debunked as it is. All this controversy, the whole time, has been completely fake. It was always a bunch of people who had decided that all the evidence we had was not relevant, because all along the problem was this mystical creature named Glonzo doing cartoon-level shenanigans. You gotta keep looking for Glonzo with the patented Glonzo-detecting machine, which totally works as long as no one ever reliably assesses whether it does.
 
EndME said:
Yes, the only way to get any meaningful data was probably doing something like what DecodeME did. So there's no point in coming off defensive.

But if they want to complain about that data being unreliable due to patients not seeing a clinican as part of the study I think there is now a pretty simple solution to that or as Carson/Wessely/Garner one said "Just do it better yourself": Set up a small well run GWAS study where people are invited from the DecodeME cohort to see a well trained board of clinicans (similar to what happened in the intramural study) and only look at the significant genes. You'd only need a couple of hundred patients and it shouldn't take long. Wouldn't that work? Practically, the problem will probably be: You won't find enough clinicans that aren't biased in some way or even want do this.
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Could you have designed decode such that it checked a small sample of the less sick respondents as an accuracy validation exercise?
 
Mij said:
There are several pwME trying but it's not getting through to him.

Do you mean like and anxiety and depression all of which have considerably stronger evidence of genetic and immunologic contributions

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They love to compare to depression and anxiety as a “gotcha”. Carson did the same in reponse to the Beentjees study, he said “Studies of depression show similar results.”. David Jameson does it constantly. It’s one of their favourite ways to try and minimise. The thing they don’t realise is that the point goes the other way. Yes, depression and anxiety are in many cases biomedical illnesses, and the dominant ways they are treated by society and psychiatrists is often minimising and patient blaming.

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Reposting my reaction to Carson’s critique of the Beentjees paper
It’s weird. Because why is that a relevant thing to say if they see mental illness as physical. (As they so often claim), why do a contrast between “physical and mental” illness. When they always claim “the mind is a part of the body”. Whenever it’s convinient to them they employ mind body dualism and all of a sudden when they have to defend their ideas they revert back to a non-dualistic stance.

Why say that physical abnormalities are found in depression [thus it is implied finding them in ME/CFS is meaningless]. It seems depression is used as a shorthand for “not a physical illness”, which rests on popular conception more than any scientific data.
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Yann04 said:
their favourite ways to try and minimise. The thing they don’t realise is that the point goes the other way. Yes, depression and anxiety are in many cases biomedical illnesses, and the dominant ways they are treated by society and psychiatrists is often minimising and patient blaming
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That's why I think the problem of how ME/CFS has been treated lies way deeper then not acknowledging the biomedical nature. It is more about the fact that anything subjective isn't taken serious, and that we are very far away from psychological conditions actually being seen.

Being depressed shouldn't be making anyone feel "dismissed", because it's a very serious problem.



I hope I am making sense, obviously me/cfs is very different from deppresion.
 
Mij said:
Alan Carson on X:

As far as i m aware no randomised trial has ever shown pacing to be superior to graded exercise

‘Bottom up’ incoming signals which be of our internal state ‘interoception’ our movement in the world ‘proprioceptio’ our our awareness if the external world ‘exteroception’. Our prior expection and attentional ‘spitlight’ has a significant preconscious modifying effect

So if a patients says i feel fatigue that will be a combination of those fsctors. The top down influences will be a combination of genetics and the totality of life experience and in some cases specific disease distortions- every experience will be unique between subjects 3/n

Of course people will be right on occasions sometimes because they’re correct and sometimes liked a stopoed clock by chance. BUT critically that gives ideas to test it is not the answer for the latter we need proper trials

But also temporally within a subject. So if a patient says i feel fatigue yes i believe them, if they say because i feel fatigue i know this is mitochondrial dysfunction and treatment a works and b doesn’t, i have this unique insight, i say impossible 4/n

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These are the type of people who 100 years ago, would tie your left hand up and force you to write with your right hand if you were left-handed.

These people are starting to talk themselves into a corner.
 
Whilst much is made of patients having post exertional malaise it should be remembered that this does not have a definition, and it is found across multiple disorders not just ME.
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This is why I guard against watering down the definition of PEM. Delayed response to exertion may be everywhere, but not the catastrophic response to even imperceptibly small changes in minimal exertion that we see in severe/moderate cases. People with no understanding/experience with it could take post-exercise fatigue in other conditions, call it PEM and then minimize, or even deny existence of, PEM. They are what I call PEM deniers.
 
It is arguable that the lack of genes known to be linked to depression and anxiety is evidence in favour of any depression and anxiety being secondary reactive consequences of primary physiopathology, combined with huge secondary losses caused by both the disease itself, and serious mistreatment/abuse by medicine and broader society.

It would be a rare human indeed who did not show any signs of those secondary features in such extreme circumstances.

Not exactly a flattering possibility for the role of the likes of Carson, et al, in all this, is it.
 
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