DecodeME in the media

ElephantNerd said:
Even though the abstract of the preprint clearly states they found "no evidence" of common cause (forgive my scientific illiteracy) with anxiety and depression!!??

I choked up reading that, I really did.
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Don’t you know that CBT can cure anything if you just believe enough? /s

Ironically, the possibility of a hit on anxiety/depression genes has caused me some anxiety lately! Very relieved by the results.
 
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.”
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Ponting in the Times. Thank you for saying that out loud!
 
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.
 
Braganca said:
www.theguardian.com

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
www.theguardian.com www.theguardian.com
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This is very significant: a helpful, accurate ME/CFS article in the Guardian written by Ian Sample, who has links to the SMC and has been very unhelpful in his reporting of ME/CFS in the past. Notable that there are no quotes from Carson or any other BPS people – an no mention of BPS ideas. This really does appear to signify a turning of the tide.

It will be interesting to see if Richard Horton has anything to say about it in The Lancet.

[Edit: unhelpful]
 
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A lot of people, including HCPs, believe that ME/CFS is made up by the patients and researchers they’ve managed to rope in. It’s an unfortunate reality.

Luckily, the people that work with the specific genes that were found, will see past that and simply know that their expertise might be relevant. And that’s the most important aspect for driving things forward.
 
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.
 
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.
 
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.
 
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