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
 
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.
 
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
 
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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