Criticisms of DecodeME - and responses to the criticisms

Simon M said:
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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Thanks for your positive reflections. Really helpful.

Are there other teams with similar top notch credentials and commitment to quality work as Ponting's who would be in a position to replicate. Or is it perhaps more likely that a different team would perhaps focus on one or more parts? Could you or others shed light on what the possible next steps might be.

I really hope this work excites other quality scientists to take a look and progress is swift.
 
dratalanta said:
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.
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There's a common trope about how every disaster movie begins with people ignoring scientists.

It's lacking the other side of the coin: it's usually other scientists who ignore them, have different opinions or interpretations, sometimes even competing interests or biases.
 
Perrier said:
Just read a post on twitter where the chap says our genes have always been the same, yet 100 years ago there was 90% less chronic illness. He suggests that we are living in "mass poisoning' due to environmental factors, and these are causing illness. He suggests pin pointing genes will not lead far. So my question: is there any validity to his view.
In other words, is it a question of some fragility in some genetically susceptible folks, and add in modern environmental challenges, and bang--they get ME.
This is not a genetic disorder like cystic fibrosis of course. Just trying to get all this straight.
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I was reading only today somewhere on the forum, can't remember where now, an article about the long term chronic illness in patients following the 1918 Flu pandemic, a study in Africa, during the years following that pandemic. The article was comparing situation with Long Covid I think back in 2020. I think it may have been Nightsong that posted it but I could be completely wrong.
 
Yann04 said:
seems very dubious claim.

Just because something wasn’t measured doesn’t mean it didn’t exist.

And well, back then, people were often left to die…
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Indeed. We don't have the figures on chronic illness, and folks did not live as long. But in my parents' generation who all went through WW2, and amongst their very many friends, there was no talk ever about something like this. I specifically asked, if they could remember someone bed bound for years, as they knew about my daughter. One person told me that there was someone in their village who was "feeble" and couldn't work hard but nothing about being bed bound and non functional for decades. Just trying to sort out the chap's statement.
 
Perrier said:
Just read a post on twitter where the chap says our genes have always been the same, yet 100 years ago there was 90% less chronic illness. He suggests that we are living in "mass poisoning' due to environmental factors, and these are causing illness. He suggests pin pointing genes will not lead far. So my question: is there any validity to his view.
In other words, is it a question of some fragility in some genetically susceptible folks, and add in modern environmental challenges, and bang--they get ME.
This is not a genetic disorder like cystic fibrosis of course. Just trying to get all this straight.
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I’d want to see scientific stats to support his assertions…
Anyone can come up with a theory on twitter
 
Perrier said:
Indeed. We don't have the figures on chronic illness, and folks did not live as long. But in my parents' generation who all went through WW2, and amongst their very many friends, there was no talk ever about something like this. I specifically asked, if they could remember someone bed bound for years, as they knew about my daughter. One person told me that there was someone in their village who was "feeble" and couldn't work hard but nothing about being bed bound and non functional for decades. Just trying to sort out the chap's statement.
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History is full of examples of women who were bedbound for years, from St Julie Billiart to Florence Nightingale
 
Perrier said:
He's a scientist, who strongly believes we are all being poisoned by our environments, plastics, wall paint, dishes, furniture, etc. He's also an Me patient.
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Oh well he will surely have a list of stats on deaths in the last 100 years, a list of these chemicals causing the poisoning and the year they became introduced and where, and associated deaths, he wouldn’t just be positing it with no research. I’m sure he has a list of the poisonous elements beyond “furniture, dishes etc”.
I mean, look at the stats and info in this preprint that we are discussing.a scientific study.
 
Being covered on Sky news now. Only the Psychologist on the panel was asked to comment. She stated that what people are pointing out is that many of the participants in the study had 'self reported diagnosis'. Am I correct in recalling that only those with a medically confirmed diagnosis were invited to provide samples, or am I confused? I do remember that I had to wait to see if I would be called to provide a sample.
 
Maat said:
Being covered on Sky news now. Only the Psychologist on the panel was asked to comment. She stated that what people are pointing out is that many of the participants in the study had 'self reported diagnosis'. Am I correct in recalling that only those with a medically confirmed diagnosis were invited to provide samples, or am I confused? I do remember that I had to wait to see if I would be called to provide a sample.
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You are correct. Medically confirmed.
 
Maat said:
Being covered on Sky news now. Only the Psychologist on the panel was asked to comment. She stated that what people are pointing out is that many of the participants in the study had 'self reported diagnosis'. Am I correct in recalling that only those with a medically confirmed diagnosis were invited to provide samples, or am I confused? I do remember that I had to wait to see if I would be called to provide a sample.
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There were two parts to this. The study was of people who reported they had a diagnosis from a health professional. The study screening questionnaire also asked people about their symptoms. Only people who met the criteria for either IOM or Canadian consensus definitions were invited to provide DNA samples. I'm not sure, but I think about 85% of people who signed up saying they had a diagnosis from a health professional also met the criteria.

DecodeME included a question on postexertional malaise that went beyond asking about simple exertion intolerance stressing the need for an extending period of symptom flare. Though, as this is a media thread, I don't want to start an extended debate about that here.

But I want to clarify this isn't self diagnosis, it's not even simply self report of a medical diagnosis. It won't be perfect, but I think it will be pretty good.
 
Simon M said:
There were two parts to this. The study was of people who reported they had a diagnosis from a health professional. The study screening questionnaire also asked people about their symptoms. Only people who met the criteria for either IOM or Canadian consensus definitions were invited to provide DNA samples. I'm not sure, but I think about 85% of people who signed up saying they had a diagnosis from a health professional also met the criteria.

DecodeME included a question on postexertional malaise that went beyond asking about simple exertion intolerance stressing the need for an extending period of symptom flare. Though, as this is a media thread, I don't want to start an extended debate about that here.

But I want to clarify this isn't self diagnosis, it's not even simply self report of a medical diagnosis. It won't be perfect, but I think it will be pretty good.
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Thanks for clarifying that @Simon M. I went in search the possible source of her comments (she was a pscyhotherapist, not psychologist as I incorrectly stated. I think this is where she got her information from; Reuters.

https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/ heading and source explains it all.

Scientists who were not involved in the study said using volunteers who self-reported chronic fatigue syndrome rather than restricting participation to those with a diagnosis from a medical professional somewhat weakened its conclusions. They called for larger studies to replicate the results.
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Edited to change msn link to direct link.
 
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