Criticisms of DecodeME - and responses to the criticisms

“More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate. The National Institute of Health in the US has suggested diagnostic error rates of around one third. 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. Finally, there were significant co-morbidities within the sample with disorders known to have a genetic contribution like depression, chronic pain and irritable bowel syndrome.
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Carson in SMC.

Funny how he highlights depression when there were no hits on genes related to depression!
 
Just scanning through the SMC reactions that MEA have linked to on their fb. https://www.sciencemediacentre.org/...EV1pUPHIhxomm9Ylfw_aem_YLBFgUW0lrQfRJimzqsZcQ

The following doesn't feel right to put it on this thread, given the MEAs one-liner seems apt "Science Media Centre gathers some expert and non expert opinion on the DecodeME results"

But surely quote of the day, for hypocrisy has to go to the following from Alan Carson:

More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate.
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As part of his 'if you throw enough random things at the wall to hope something might stick' approach
 
bobbler said:
Just scanning through the SMC reactions that MEA have linked to on their fb. https://www.sciencemediacentre.org/...EV1pUPHIhxomm9Ylfw_aem_YLBFgUW0lrQfRJimzqsZcQ

The following doesn't feel right to put it on this thread, given the MEAs one-liner seems apt "Science Media Centre gathers some expert and non expert opinion on the DecodeME results"

But surely quote of the day, for hypocrisy has to go to the following from Alan Carson:



As part of his 'if you throw enough random things at the wall to hope something might stick' approach
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Doesn’t look like he’s spent very much time reading the analysis plan..

And deeply ironic when all of the BPS research consists of questionnaires!
 
From Alena Pance’s reaction (in the science media center)

“As any genomic study, this work has limitations highlighted by the inability to detect the sex-bias, as is observed clinically that females are more highly affected.
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Does she know the chromosomes weren’t analysed yet?
That the sex bias could be due to other factors than genetic like hormonal or metabolic?
That it could partly be due to diagnostic bias as well?

It just strikes me as a bit of a dumb thing for her to say. But I’m just a layperson…
 
Diagnosis wasn’t done by questionnaire. Diagnosis by an HCP was a precondition of the questionnaire. The questionnaire checked whether the patients with the diagnosis met the criteria for diagnosis. So that objection need not detain anyone. Unless Prof. Carson would have preferred patients with plainly incorrect diagnoses to be included?

What about unblinded subjective outcome questionnaires? Where does Prof. Carson stand on those?
 
Yann04 said:
From Alena Pance’s reaction (in the science media center)



does she know the chromosomes weren’t analysed yet?
That the sex bias could be due to other factors than genetic like hormonal or metabolic?
That it coild partly be due to diagnostic bias as well?

It just strikes me as a bit of a dumb thing for her to say. But I’m just a layperson…
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And how do we even know that there is a substantial sex bias when the disease has been neglected for so long? They are grasping at straws to have something negative to say. Shame on them.
 
dratalanta said:
Diagnosis wasn’t done by questionnaire. Diagnosis by an HCP was a precondition of the questionnaire. The questionnaire checked whether the patients with the diagnosis met the criteria for diagnosis. So that objection need not detain anyone. Unless Prof. Carson would have preferred patients with plainly incorrect diagnoses to be included?
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There might still be flaws in the data wrt diagnoses, but it’s certainly not as bad or simple as they make it out to be.

I think this shows once and for all how scientifically illiterate they are, and/or how biased they are.
 
Jonathan Edwards said:
Sour grapes Carson does his very best to drain every last drop of that so-important "hope" out of this. Is there a human being more miserable than this?
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As someone (admittedly a non-expert) feeling pretty underwhelmed and only just avoiding deflation by virtue of expecting essentially nothing to come of just about anything... is he wrong, though? I certainly hope he turns out to be, but his comments here don't seem unreasonable to me.

Again, I would love to have someone explain to me why he is wrong and why this is really so different from every other paper that gets torn to shreds here for using the term "inflammation" or making too much of modest associations that cannot be replicated, but I worry we're in much the same place, however much "hope" might be needed.
 
I used to think scientific illiteracy was when otherwise intelligent people can’t understand science.

But it seems scientific illiteracy is actually when scientists can’t understand straightforward writing.

Perhaps scientific illiteracy syndrome is a side effect of being clever enough to believe six impossible things before breakfast. A very clever psychiatrist should do a study of it, alongside that study of catastrophising behaviour among elite psychiatric researchers which I proposed here once before.

But enough of these garlanded fools. They have stolen enough of our lives.

Thank you Chris, Andy and all the team. After forty five years of this hell, you’ve given me some hope.
 
DHagen said:
As someone (admittedly a non-expert) feeling pretty underwhelmed and only just avoiding deflation by virtue of expecting essentially nothing to come of just about anything... is he wrong, though? I certainly hope he turns out to be, but his comments here don't seem unreasonable to me.

Again, I would love to have someone explain to me why he is wrong and why this is really so different from every other paper that gets torn to shreds here for using the term "inflammation" or making too much of modest associations that cannot be replicated, but I worry we're in much the same place, however much "hope" might be needed.
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GWAS is a field that had its problems in the early days – but unlike this field, for instance it got its house in order. And its replication record now is excellent. These genetic signals should stand the test of time. As the paper makes clear, there is work to do to firm up on a specific genes involved.

I've been following biomedical research for more than two decades – this really is unlike anything I've seen before – as much as quality in rigour as for its findings

It won't be perfect, no study is, but it won't be torn apart either.

It is, after all, the world's biggest ME/CFS study. Chris Ponting is a meticulous scientist. He doesn't make big claims, and even said on channel 4 news that this is the end of the beginning and the start of the next phase.

Finally, we have solid foundations. That is never, ever happened before. It's largely been one hypothesis after another, and a hope that a few moderate quality studies are telling us something important (which they might be).

I am part of the study, but that also means I've had a close up view.

I'm sure you'll make up your own mind, but from what I've seen, this is utterly different from what we've seen before
 
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bobbler said:
Just scanning through the SMC reactions that MEA have linked to on their fb. https://www.sciencemediacentre.org/...EV1pUPHIhxomm9Ylfw_aem_YLBFgUW0lrQfRJimzqsZcQ

The following doesn't feel right to put it on this thread, given the MEAs one-liner seems apt "Science Media Centre gathers some expert and non expert opinion on the DecodeME results"

But surely quote of the day, for hypocrisy has to go to the following from Alan Carson:



As part of his 'if you throw enough random things at the wall to hope something might stick' approach
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This just in: questionnaires not reliable - Chalder yet to give comment!
 
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