A cautionary tale about the medical uses of artificial intelligence
AI is still in its infancy, so be careful when using it to do research
“Review scientific articles only and summarize the content to explain what treatments are available for a person with myasthenia gravis experiencing breathing difficulties due to diaphragm and intercostal weakness.”
This was the question I posed to Microsoft’s Copilot software, the company’s version of ChatGPT, both of which are artificial intelligence (AI) software easily accessible on the internet.
Why am I using AI to research this? Because frankly, I’ve been frustrated with the unbalanced improvements in my myasthenia gravis (MG). I’ve managed to increase my step count to 2,000 a day, I currently require fewer naps, and I’ve generally been feeling better and stronger — except for my breathing.
This summer, I’m still experiencing air hunger and an increased need for support from a BiPAP machine.
What really frustrated me and got me going down this rabbit hole was needing my BiPAP machine before a daytime event because the air was heavy. Heavy and humid air always seems to trigger air hunger and a need for BiPAP support.
Anyway, back to my search. My initial question was pretty specific, in my opinion. It worked well and provided the usual suspects for treatment: steroids and noninvasive ventilatory support. But it also included a new option called diaphragm pacing (DP), also known as diaphragmatic pacing or phrenic nerve stimulation. I was intrigued.
An important lesson
I’d never heard of DP, so I researched it a little more. It turns out that surgeons can implant a pacemaker in your diaphragm, much like they do with the heart. It stimulates the diaphragm to do its job in assisting with breathing. It eliminates the need for mechanical ventilation in those dependent on it. Cool!
So I did another search using the AI software: “Summarize scientific literature only and determine if diaphragmatic pacing is safe for a patient with myasthenia gravis and provide sources.”
The summary indicated that yes, this treatment is safe for someone like me. I got a little excited. But before I got my hopes up, I read the resources it provided.
And this, my friends, is where the cautionary tale begins. It turns out that DP is not approved for MG. The constant stimulation of the diaphragm that DP provides would not be a good alternative therapy in a disease that causes weakness the more a muscle is used.
Because AI is so readily available, there are some great uses for it, such as its ability to comb the “interwebs,” find and pull from specific content out of millions of pages online, and have it spit out a summary in seconds. The implications this resource has for the medical profession are profound.
But it should be used as a launching point and not taken as the answer. AI is still in its infancy and is still “learning.” Yes, AI learns from the people who use it. You can provide feedback by indicating whether the responses it provides were actually helpful. But I digress; this is an MG column, not a tech one.
It’s important to understand how AI software like Copilot and ChatGPT work so that those of us with MG and other chronic conditions don’t get our hopes up or try something that does more damage than good.
When using this new software, I urge you to do so with a chip on your shoulder and a grain of salt. Always add “include sources” in your query so that you can go to the source itself and double-check the findings. It’s important to be informed, but it’s even more important to make sure the information comes from credible sources.
A quick tech tip: Use CTRL + F to open a special search window for that specific page or article. It’s a keyboard shortcut for the “find” command. You can then type the term to be searched into that box, and it’ll highlight the word you’re looking for. Remember to use all iterations or options, like “myasthenia gravis,” “mg,” “neuromuscular disease,” etc.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Siobhan
I am always looking for something to learn new ways to make life easier, and perhaps join the world around me once more, being single with this is lonely as getting out only puts me back in as I then need to heal - we need others to learn as the treatments are to maintain not cure, the remissions learning how to live in the silence that aloud the remissions to happen. So isolated !
I learn not from my Doctor! But from others… my doctor learns from me… I tell him what I do, water breath work, and where and how I function to survive. . But leave with nothing! When I return he then repeats to me what I told him that was helping me as if I was hearing it for the 1st time!? So frustrated! I don’t need to be stroked!!!! I need answers and understanding not just pills ( and or not, as manny that were suggested “that I donor take” are now known to be in safe… but my doctor who has no idea has never told me to stop taking that he had once told me to take!!!!
Just hard to trust - we do need to do are own research! I had to tell him about magnesium???? Scary !
Again we need each other!
Side note!!! Check your prescription always and make sure they don’t change to a non-generic or generic from what you normally take, as they have done this to me and put me in crisis. I had to figure it out myself once I did there was no follow through, call back or answers. I had to go directly to an independent ID to get changed ! Doctor still has not responded to my calls - he has changed the prescription back at the pharmacist though by the doctor at the IDA pharmacy request!
PS I had to get all this done whilst in crisis it was a nightmare! I know I’m still waiting three months to try to find someone to do some dental work as I have an abscessed that put me into crisis through the medication for the infection, I need a specialized dentist and some extra care. It should be another year. I am assuming before anyone gets a role on this. Meanwhile, my precautions to keep that tooth at bay has been so hard and 10 pounds. I’ve gone for my body which is needed so terribly to be able to survive through these crises.
Sending so much love and understanding to all as it seam “ Hands tied up is a common denominator”