3 ms·

I definitely agree with you. Thank you for taking a look at this objectively. I really do appreciate it. A lot of this stuff is frustrating to me. I live with

I definitely agree with you. Thank you for taking a look at this objectively. I really do appreciate it. A lot of this stuff is frustrating to me. I live with 2 rare autoimmune neurological diseases, with one of them being very rare, which changes the rules of the game, almost completely. I really should not be alive and I constantly worry about making a bad move medically because my care is complex. Even turning 30 felt like a milestone for me. I almost constantly have to worry about access to care, too, which is why I became a European Union citizen, in addition to being American. But, it is not due to typical things that people worry about like having access to insurance or paying for it. It basically is for logistical reasons. My training is in electrical engineering. From my standpoint, I can tell the difference between a gimmicky medical device and something that is promising. With surgeries, I would definitely say to a lesser degree, but I am always skeptical about the consequences. I also do not know how things typically play out long-term, especially living with rare diseases. I am always skeptical in general, and for good reasons. I have always been careful about what moves I make medically. I am also extremely stubborn, and perhaps that is why I am still alive. Either way, medicine in the past 10 years or so has started to change profoundly. I do think promising things will occur, perhaps on a timeline even. However, access to things, such as in the US, will be of a different story. That is another reason why stories like this bother me, even though it is far from happening logistically, in this case.

Bartweiss 7y ago
Thank you, this makes a lot of sense and it's really interesting to hear. It's depressing how often 'disability' gets reduced to a single quality, as though changes have a standard effect on disabled people as a group. Our different experiences seem like a great demonstration of that. On one hand, complex care that makes "brilliant" new solutions unlikely to do anything, and a distraction from access and support to existing care. On the other, issues so straightfoward that access to care and social support are largely meaningless - but also leaves me with an eye on shiny new advances because existing treatments start and stop at pain relief. As an aside, I really appreciate the point about relevant training - I do worry that there's a "Gellman amnesia" issue here where I'm acutely aware that I should be skeptical of motorized medical devices or brain-training games, but don't have an adequate skepticism about drugs or surgery. I think medical devices really are singularly prone to ludicrous overpromising, but it's hard to know how much of my doubt should extend to other topics. I wish you well, and I hope the mundane business of living and getting care goes as well as possible. There's a lot of interesting change on the horizon, but people shouldn't let it overshadow improving lives however we can today.
- disabled 7y ago
  You definitely nailed it on the head. You are awesome! :) Thank you for being gracious, understanding and thoughtful about these issues. Also, thank you very much for the well wishes! I really appreciate it. As for more open-ended stuff, like procedures, I tend to look at the "best-case scenario" data in the literature, and use them as a reference. Then I compare them the data in general across the spectrum for that procedure (as best as possible). If I determine there is a lot of variance (often there is) it can be a red flag. Obviously this is not reliable, and it can absolutely fail. There are a lot of intricacies involved. But, it is a starting point. In terms of medical devices, I can read a patent and I can usually tell if the technology is legitimate or not, in terms of if "the technology is there versus it being a gamble whether it works or not" (which you would have to look at clinical results data and more to make more determinations). In terms of telling if an electronic device is gimmicky or not, versus promising technology (also applies to medical devices, but not completely, as it is interfaced with the human body, usually): I read patents too. But most importantly, I can tell usually just by the specifications alone of the hardware. If the combination of hardware is not adequate for the claims they are making (in order for the device to actually be reliable), there is no way that the device will be promising. It will meet the "gimmicky" criteria. Of course there are other ways that medical devices can be messed up (such as product design and/or software) but that is becoming less common (except for perhaps, the risk of cyberattacks) as there are huge investments on the product. In that respect, it is best to look at the overall reputation of the company and the previous iterations of often (very) similar devices. But, being the number 1 best seller (often means they excel at marketing) does not mean they are best. I would rather have my insurance cover something that is innovative design-wise that took ingenuity (and is reliable and solid) than incentivize a company that would rather do "software upgrades" (far less risky) as "innovations" that they market to be groundbreaking (when they are often not). Anyways, if you have a colleague or a friend who is an engineer, ask them what they think about X, Y, or Z devices, and have them get back to you. Engineers do not play to things like corporate politics and will usually give you a fair and relatively unbiased opinion. They are, after all, applied scientists. It can never hurt to have such input, and usually it is very good.

Bartweiss 7y ago

Thank you, this makes a lot of sense and it's really interesting to hear. It's depressing how often 'disability' gets reduced to a single quality, as though changes have a standard effect on disabled people as a group. Our different experiences seem like a great demonstration of that. On one hand, complex care that makes "brilliant" new solutions unlikely to do anything, and a distraction from access and support to existing care. On the other, issues so straightfoward that access to care and social support are largely meaningless - but also leaves me with an eye on shiny new advances because existing treatments start and stop at pain relief. As an aside, I really appreciate the point about relevant training - I do worry that there's a "Gellman amnesia" issue here where I'm acutely aware that I should be skeptical of motorized medical devices or brain-training games, but don't have an adequate skepticism about drugs or surgery. I think medical devices really are singularly prone to ludicrous overpromising, but it's hard to know how much of my doubt should extend to other topics. I wish you well, and I hope the mundane business of living and getting care goes as well as possible. There's a lot of interesting change on the horizon, but people shouldn't let it overshadow improving lives however we can today.

disabled 7y ago
You definitely nailed it on the head. You are awesome! :) Thank you for being gracious, understanding and thoughtful about these issues. Also, thank you very much for the well wishes! I really appreciate it. As for more open-ended stuff, like procedures, I tend to look at the "best-case scenario" data in the literature, and use them as a reference. Then I compare them the data in general across the spectrum for that procedure (as best as possible). If I determine there is a lot of variance (often there is) it can be a red flag. Obviously this is not reliable, and it can absolutely fail. There are a lot of intricacies involved. But, it is a starting point. In terms of medical devices, I can read a patent and I can usually tell if the technology is legitimate or not, in terms of if "the technology is there versus it being a gamble whether it works or not" (which you would have to look at clinical results data and more to make more determinations). In terms of telling if an electronic device is gimmicky or not, versus promising technology (also applies to medical devices, but not completely, as it is interfaced with the human body, usually): I read patents too. But most importantly, I can tell usually just by the specifications alone of the hardware. If the combination of hardware is not adequate for the claims they are making (in order for the device to actually be reliable), there is no way that the device will be promising. It will meet the "gimmicky" criteria. Of course there are other ways that medical devices can be messed up (such as product design and/or software) but that is becoming less common (except for perhaps, the risk of cyberattacks) as there are huge investments on the product. In that respect, it is best to look at the overall reputation of the company and the previous iterations of often (very) similar devices. But, being the number 1 best seller (often means they excel at marketing) does not mean they are best. I would rather have my insurance cover something that is innovative design-wise that took ingenuity (and is reliable and solid) than incentivize a company that would rather do "software upgrades" (far less risky) as "innovations" that they market to be groundbreaking (when they are often not). Anyways, if you have a colleague or a friend who is an engineer, ask them what they think about X, Y, or Z devices, and have them get back to you. Engineers do not play to things like corporate politics and will usually give you a fair and relatively unbiased opinion. They are, after all, applied scientists. It can never hurt to have such input, and usually it is very good.