Amatica Patient-centred chronic disease research

I'm not really sure what to think. I paid for both the RNA and protein analyses, and they're offering a second RNA test for free to the early participants, including me. So I'll be able to compare my results over a year and a half and see how my data has changed.

But let's be clear, I mainly did this out of desperation.

Jack and his team are trying something new, particularly by using AI. They're very popular on Twitter and there's a lot of enthusiasm around what they're doing. I simply tried to temper some of that excitement, especially comments like “Great, we're finally going to have a biomarker soon!” And somehow, I ended up being criticized just for expressing a few doubts.
 
Jonathan Edwards said:
I would be 95% sure that is the case. I am baffled by the extent to which biomedical research has been entirely taken over by this sort of mindless measuring that has never provided anything useful in any well characterised disease as far as I know. You might as well go bus spotting as a way of discovering whether the stock market is going to crash. Most of the measurements are of things that vary for reasons nothing to do with what you are interested in.
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Thank you, Professor!
Yes, it's extremely popular, especially the following idea:
Data collection → AI analysis → patient subgroups → targeted treatments.

And I can understand why. There's a growing frustration with ME/CFS research over the years. I'm talking about the high-profile researchers, like Klimas and others, who, despite millions of dollars in NIH funding, seem to have achieved very little for patients.

So people are starting to take matters into their own hands, and I don't think Amatica is necessarily wrong to try. Their approach may be scientifically questionable, but they're betting on data and AI.

In a way, I think the enthusiasm surrounding Amatica is more of a symptom than anything else. A symptom of desperation, of lost trust, and of a research community that has failed to give patients the answers they've been waiting for.
When people lose faith in established institutions, they naturally start looking for hope elsewhere. Whether that hope is scientifically justified is another question entirely.
 
It’s funny that decodeME didn’t get this hype when it’s far more subjects and controls; also used machine learning, if you want the AI angle. The data from it you can plug into an “AI” in the future when we have this super intelligence they are banking their tests on. When we say big data we have it. SequenceME will give us even bigger data that is controlled.

DecodeME just didn’t have a hype man peddling something so it’s not popular on twitter. Somewhere along the way we lost science to a popularity contest.
 
If I understood correctly, they've raised millions... or did I get that wrong? I'm pretty sure they have, though. Da Silva, Cox, Ponting, Fluge and Mella can only dream of that kind of funding.

It's cruel, but you have to know how to sell yourself. Science is becoming just another capitalist enterprise.
 
ChronicallyOverIt said:
DecodeME just didn’t have a hype man
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But DecodeME does not need hype. It will feed through to a solution when the science is done. Twitter posts are a pretty sure sign of pseudoscience. The feeding through may seem slow but that is simply because there aren't that many scientists out there who actually know what an important development looks like in this context. Fortunately, there are enough and WE&ME are providing them a way to appear out of the wordwork.

I can understand that people are desperate but if everyone is happy to go along with making money being the be all and end all then they are going to get phoney science instead of something that will actually help when they are sick. "Precision Medicine" has always been a scam. Pretty much all ME/CFS research up until very recently has been either a scam or the half-baked obsessions of third rate people. The reasons for that are complicated but I find it hard to understand why anyone takes an organisation like this seriously when there is so obviously no basis for what they are offering.
 
neophyte32 said:
Their approach may be scientifically questionable, but they're betting on data and AI.
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AI will tell you this is the wrong approach, so I would argue they are betting on money. If you ask one of the Frontier models what kind of research should be done on an illness where very little is known and studies have largely resulted in negative results, one of the first things that always shows up is doing a GWAS!
 
neophyte32 said:
It's cruel, but you have to know how to sell yourself. Science is becoming just another capitalist enterprise.
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No, good science will never sell. The spin off drugs will, but the science doesn't - because nobody much other than the very few who make progress understand it. I have been there. You just have to make sure you can pay the mortgage and do the work you want to do. As soon as you try to sell yourself you might as well give up. Chris Ponting has got what he wanted - a place in the history of a disease. The satisfaction of that far outweighs any monetary considerations, I can assure you.

The good news is that there are now a least a dozen good new minds who want that sort of reward in ME/CFS research. Several are members here. Another 15 million for SequenceME will get us further on quicker but I think we will get there anyway now.
 
Jonathan Edwards said:
No, good science will never sell. The spin off drugs will, but the science doesn't - because nobody much other than the very few who make progress understand it. I have been there. You just have to make sure you can pay the mortgage and do the work you want to do. As soon as you try to sell yourself you might as well give up. Chris Ponting has got what he wanted - a place in the history of a disease. The satisfaction of that far outweighs any monetary considerations, I can assure you.

The good news is that there are now a least a dozen good new minds who want that sort of reward in ME/CFS research. Several are members here. Another 15 million for SequenceME will get us further on quicker but I think we will get there anyway now.
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Fifteen million. So little, and yet so much at the same time.

If only the science being done here could receive the same level of support, and as quickly as the other kind. The more spectacular kind, the one that promises answers to our desperation in the near future.
There are so many moderate-to-severe and severe patients on Twitter. Desperate people, myself included.

We need answers, and we need hope. As quickly as possible, because living bedridden is a nightmare. We're not even asking for a cure anymore. Just a treatment that could bring us back to mild or moderate disease, something resembling a life again.
And that's exactly the kind of hope Amatica offers.

Meanwhile, Chris Ponting, a genuine scientist, told us a few months ago: perhaps in 10 to 15 years.
Quite a different approach, haha.

But deep down, I think we patients know which one is more likely to be right. Still, human nature is what it is. When you're desperate enough, even the faintest promise of hope becomes incredibly difficult to resist.
 
It is incredibly frustrating to see all this money going to biobabble when SequenceME needs funding and it makes me feel quite helpless. I really wish there was something we could do to get people to donate to the right place.
 
neophyte32 said:
Oh, are you sure? That's not how I understood it. My mistake, then! I don't always understand everything properly, haha.
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My memory is he was talking about drug development opputunities after SequenceME, and he said that making a drug completely from scratch takes 10-15 years, which it does, usually. As Jonathan has pointed out there can be exeptions, and things can be accelerated. And there may well be repurposing opportunities.
 
V.R.T. said:
It is incredibly frustrating to see all this money going to biobabble when SequenceME needs funding and it makes me feel quite helpless. I really wish there was something we could do to get people to donate to the right place.
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Amatica has a huge presence on social media, with a simple message and, above all, a lot of hope. Jake tweets almost every day, talking about the project, its progress, what they hope to discover, and so on.

On my side, I regularly promote SequencEM on Twitter, but I've noticed that people don't seem nearly as interested. Jake, on the other hand, has a very polished and effective message, backed by this rather appealing promise that AI might finally give us some answers. It's a bit like the business of selling hope.

SequencEM and Chris Ponting barely communicate on Twitter, for example. I think Chris is mainly on Bluesky, actually. We and ME, with Christopher Strock, are active on Twitter and do a pretty good job of communicating.

I'm not saying researchers should necessarily spend their time on Twitter or other social media platforms. But it's hard to deny that Amatica has managed to attract a lot of attention through its communication, and probably raise significant funding thanks to that enthusiasm.

And when you see just how desperate patients are, it's not hard to understand why this kind of message works so well.
 
Jonathan Edwards said:
Not in a million years. Isn't that clear?
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Of course, Professor, of course. But you know better than I do how human nature works. Don't go on Twitter, you'd have a heart attack! You'd spend your entire day arguing with people, haha.

And yet, people could be educated, even on Twitter. What's missing are authoritative voices, people with the scientific credibility to challenge misconceptions and explain things properly.

Amatica has simply filled a void.
 
neophyte32 said:
And yet, people could be educated, even on Twitter. What's missing are authoritative voices, people with the scientific credibility to challenge misconceptions and explain things properly.
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As the father of psychology, William James, said, No matter how authoritative you are, if people do not want to understand what you are saying you will never educate anyone. Why should anyone on Twitter listen when even the bulk of the medical science community don't want to understand? The authoritative voices have always been around but they get tired of talking to people who don't want to know. I learnt that from Andrew Huxley - the man who worked out how neurons fire.
 
neophyte32 said:
I'm not saying researchers should necessarily spend their time on Twitter or other social media platforms. But it's hard to deny that Amatica has managed to attract a lot of attention through its communication, and probably raise significant funding thanks to that enthusiasm.
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But Amatica is raising money from investors who hope to earn money. Those investors are most likely not interested in funding scientific studies which would yield a publication and no ROI.


I don't follow Amatica, just what I see here, and it seems like a typical start-up talk. An enthusiastically presented new technology/product/service which has elements of something that exists, so it makes it sound achievable but people working with the technology can tell you immediately why it won't deliver what it promises?
 
I don’t even understand what Amaticas realistic goal is here, let alone what the path to achieving it looks like.

Now they just seem to sell tests whilst claiming that, if they only have enough data and AI helps them, they’ll eventually be able to magically extract something useful from these tests.

Haven’t they set out anywhere WHAT their data actually supposed to be useful for? I mean, simply dividing people into categories or ‘subgroups’ just so they’re grouped together isn't enough, you would at least need a plan on how to check if your groups have any relevance for anything and how RNA-sequenzing is going to help with solving ME.
 
neophyte32 said:
So people are starting to take matters into their own hands, and I don't think Amatica is necessarily wrong to try. Their approach may be scientifically questionable, but they're betting on data and AI.
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If they’re not forthcoming about how scientifically questionable their approach is and what its limitations are, they are deceiving a bunch of desperate people who could’ve found a much better use for that money. It’s irresponsible at best. Very funny that they’re presenting this as an opportunity for the patients to exercise “individual agency”. The only ones who are getting empowered by this are Jack Hartfield and co. Shamelessly cashing in on the hype.

I’m half convinced that this subtypes thing is a ploy to persuade pwME to give all their money to tech startups. They’re trying to sell us on a fantasy that these individual approaches will cure us, with some of them going as far as to claim that they’re the only answer. I’m being hyperbolic of course I don’t think that they’re consciously swindling people, but in effect, it’s kind of what they’re doing
 
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