DecodeME in the media

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!
 
I have no idea where to put this because new threads are starting but I'm so happy to be here with everyone and to be exhausted for a good reason for a change, didn't regret at any moment of being part of the study but feel this the best result I was reluctantly hoping for, looking forward to sorting through all the info/data/meanings, MASSIVE thanks to everyone involved and can't wait to see what time brings and where we go from here
 
Utsikt said:
Carson in SMC.

Funny how he highlights depression when there were no hits on genes related to depression!
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With another scientist quoted as saying the opposite. It's always good for trust in the credibility of science to see such contradictions side-by-side in an information sheet produced by an organization that claims to communicate about science.
 
InitialConditions said:
I'm afraid I find this framing of "this is real", "this is a thing" — which was very prevalent in the C4 piece — detrimental. Those were conversations for 30 years ago. We should not still be entertaining that framing because (i) it's not a good encapsulation of the debate and (ii) it may have the opposite effect because people continue to associate this illness with questions about its validity.

No one who should be taken seriously claims this illness is not "a thing". Depression and anxiety are things. Mass hysteria is a thing. Brain software dysfunction is a thing.

We should be talking about how this is further evidence that this is likely a condition at the nexus of the immune and nervous systems and that it's not patients' fault that they fall and remain ill.
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I think there is a way to make it impactful in the right way, in that this is still what medicine believes, and it's shameful and has to change. Because until they abandon those beliefs, nothing can change.

But only in its proper context: why has nothing been done about it, why has this illness been so discriminated against and no progress been made? Because of those beliefs. And the point is not that they have to believe in the illness, but that they have to let go of the invalid beliefs they have built up to excuse doing nothing to help us.
 
Binkie4 said:
This is from The Times

Interview with Chris Ponting

"Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.”

The DecodeME team called on researchers around the world to access its “rich” dataset and drive forward targeted studies into ME/CFS."

Essential points
1. Need for "breakneck speed" in targeting treatments and repurposing drugs
2 Chris' anger " I am actually quite angry that this ( genetic analysis) was not done 15 years ago, just like for any other major disease."
3. Call for researchers around the world to access Decode's rich dataset and carry out targeted studies.

Thank you Chris. You have it all.
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Not sure if the links have been posted to The Times article: https://www.thetimes.com/uk/healthc...fers-treatment-hope-for-me-patients-3q298ntgt

Without paywall: https://archive.ph/BSpnr

Apologies if this is a repetition.
 
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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.
 
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