How does the research make you feel?

A friend of mine and I (both type 1) were going to go to a Diabetes Experience Day in Alicante, about a 6 hour drive from where we live in Seville, Spain. It is a two-day thing, and is having some nutritionists, psychologists, type 1 speakers speaking about carbs, exercise, general health, hypo prevention, anything you can think of really, and then there are some endos and internists as well thrown in. Some of the professionals are also t1.
So we were all excited to go but the connections and layovers and travel is just rubbish and she may be starting a new job by the time the thing rolls around in May, yadda yadda, yadda. But it seemed like sth I thought I would enjoy and would get sth out of.
So in the end we are not going and so she sent me a flyer for another thing happening that is just one day, in a city we can drive to more easily. However, it is all about the research that is being done. And I ´m like, uggh, who wants to hear about all these pipe dreams…She is going and very excited to hear all about the research, saying you have to keep hoping sth is going to work, but just thinking about it depresses me to no end. I just feel like, really? And if any of this did work, like the Spanish health system would not be paying for it unless you were at death´s door, having a million hypos a year, or heading for dialysis or sth. Just like in the USA, there would be a whole bunch of insurers who would not cover it. HOw do you guys feel about the research and that? I think about it and Alice in Wonderland springs to mind.

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I understand your divided sense of the hopes of research for diabetes. First of all, we have definite skin-in-the-game commitment. And we don’t want to let our hopes run wild as we need to protect ourselves from the many disappointments.

The promise of actual delivery of the benefits of any research ranges from likely to pie-in-the-sky never. We must look at these various projects coldly and only invest enthusiasm when justified.

In my lifetime with diabetes, there have been some remarkable research projects that have born significant fruit that benefit me today. Back in the 1990s, I read many papers that examined continuous glucose monitoring and the many benefits they could give people with diabetes.

It took about ten years and these research papers evolved into real projects and I inserted my first CGM sensor in September 2009. I have benefitted from that technology every day since.

Also back in the '90s, I read research that talked about an “artificial pancreas” system that could measure blood glucose and make insulin dosing decisions around the clock, even while I slept. That technical evolution took longer than the CGM but that makes since a dependable CGM was a prerequisite for an artificial pancreas.

I started on my artificial pancreas, also known as an automated insulin dosing system, in November 2016. It has been amazing for me and it immeasurably improved my quality of life.

Ninety-nine percent of what I read in the medical literature is interesting but I know it will not benefit me. Part of that is based on my age; I am in my late 60s. There is much research that I read that looks like a 20-30 year exploitation horizon to me and that’s likely beyond my longevity. But that’s Ok since the hope for successor generations makes me happy, too.

I agree with you, @pancreaswanted. I would much rather attend a conference that focussed on glucose management tactics than the overall diabetes research. I think we’re all weary of reading about another mouse getting cured! And we’re certainly tired of fielding all the questions from our wider relationship about the cure that they read about in some fanciful headline.

If I were you, I would keep your eyes open for more opportunities like the first one you described. I have been gratefully rewarded with knowledge and hope by attending diabetes conferences over the years. It is truly a rewarding experience that I miss since the onset of this cursed pandemic.

I have now signed up for my first live conference in late August this year. Fingers crossed that the pandemic will let me attend!

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Completely agree, Terry. The conference was just all research on finding a cure. I just can´t stomach it. Tech is sth different, sth that we see coming on in leaps and bounds all the time.
We will be able to watch the May conference as it will also be streamed. Enjoy your conference in May-must be good to go to a live one. Maybe next year for me!

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I’m all about the research! Yes, please. Give it all to me. I love to keep on top of what is happening and what’s in the product pipeline. But then again, I chose medical research as a career path, so maybe I’m unique in this.

This stuff is real. It’s our present and it’s our future. I was diagnosed in the 80s, when home blood glucose test kits and human recombinant insulin (old school R & NPH) were both brand spanking new, and uncommonly used… And now we’re implanting genetically modified stem cells that are programmed to evade our immune system, hopefully eliminating the need for immunosuppressants. This stuff isn’t a pipe dream, it’s happening now! These are really exciting times, and the technology is advancing quickly.

You’re misinformed to use the loaded word “cure” pertaining to research. The research being done isn’t necessarily about a cure. It’s about improving lives. There will probably be presentations on data platforms, apps, new medications (responsive insulin and extra hormone regulators for type 1’s who lack more than just insulin are in the works), complication treatments, new pumps/delivery devices and AID algorithm improvement, mental health issues, etc… Even the researchers who are doing the closest thing fathomable to a cure, restoring our ability to make our own insulin, choose not to use that word. Mostly because we don’t know how it plays out yet. Conceivably there will always be more that can be done, and ways to improve the outcomes… but each and every little piece of research gets us one step closer to living gluco-normal lives.

That’s me, though. If you’re not excited about the research, then by all means, sit it out. There’s no reason to torture yourself if you think it’s boring. These conferences exist for the people who are into this stuff. You can certainly just lookup the highlights online after the event, if you’d rather.

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I think I would be the one that would rather read the highlights. While I get excited about some of the research they are doing for tech…I know a lot doesn’t pan out or is so far in the future that there is a good likelihood it won’t necessarily benefit me. So I am pickier about being interested in some of the research. But you never know.

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I’m definitely interested in the research side of things with the caveat that they don’t call things a cure or effective treatment unless they are testing it on humans and it’s working/helping. I roll my eyes every time I see an article that touts a cure but they are still only in mouse models. I am hopeful that in my lifetime there will be a cure or a treatment that will make diabetes a part of the background instead of a 24/7 babysitting job.

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I am not the one who is using the loaded word “cure”. The very foundation that is hosting it, I do not think sitting through it would be BORING. I think it would be DEPRESSING.
I appreciate your point of view as someone working in the sector.