Segment 1: Finding credible MG information in a digital era

So, this first question is going to be for Vanetta and Bruce. When you were first diagnosed, what was the biggest challenge you faced in finding accurate information about myasthenia gravis (MG)? Also, what resources did you ultimately find trustworthy, and why? Vanetta, do you want to go first?

Vanetta: Yeah, sure. So, when I was diagnosed — I was diagnosed in 2003, and I was 16 years old at the time. Back then, with myasthenia gravis, there was not a lot of awareness about this disease. My doctor, he knew about it, but even then, it wasn’t an immediate diagnosis for him.

So, when I was finally diagnosed, the only source of information we had, besides my neurologist, was my neurologist pretty much telling my mom to go down to the library that they had in the hospital. That library had one thick medical journal with like one paragraph talking about myasthenia gravis. So, there wasn’t much information out there at the time about MG.

I was really getting all of my information from my neurologist. But now, in the world that we live in — being a part of support groups and being in the space of advocacy — I will say that my peers, they’re who I get my source of information from.

And yes, it can be a lot of chatter in different areas of social media. But when you’re a part of these support group networks, those are the people that become my reliable source that I kind of go to for advice.

Shawna: OK, awesome. Bruce, how about you?

Bruce: Mine is … my story is a little bit different only because when I was diagnosed in 2013, I’m sure there was plenty of information out there. But I was hit with the medication first, and it seemed to just wipe it away. So, it wiped it out of my mind.

I was continuing to work on my family. I was traveling, so everything seemed to be working fine for me. I never really gave myasthenia gravis a thought because it wasn’t bothering me. My swallowing got better. My speech got much better.

And then I would say probably around 2010 or 2011, right after I retired from the post office, is when the swallowing came back and started getting me. So, the medications — I started doing some research on medications, and my doctor was helping me out. I saw a neurologist the whole time between 2013 and 2020, I should say — not 2010.

When I got my medications under control, everything seemed to be working fine until about two or three years ago, before I had my neck injury. My swallowing started getting harder. My speech started getting thicker. So, I was talking with my neurologist at the time to find out what the best plan was.

Then, when I broke my neck, I was in the hospital. I couldn’t swallow anymore, so they had to put a PEG tube in. That took care of that problem, maintaining my medication. But I became ravenous for information about myasthenia gravis because now it really hit home.

And I think that’s the biggest problem. If it’s not really affecting me, then I wasn’t bothering with it, which was my big downfall.

Shawna: I think that’s a great point. So, that’s a great transition to our next question with this segment. What benefits or pitfalls have you experienced or foresee in using AI to do your health research or collect advice about MG care? If you’ve used it, what advice do you have for using it wisely? Vanetta.

Vanetta: So, I do — I like to use ChatGPT. But I will caution that ChatGPT does have the tendency to hallucinate a little bit. So, I would make sure that whatever information you’re getting from ChatGPT, or any AI tool, that you’re validating it with your provider.

But with that being said, I actually like using ChatGPT because I find that when I’m in a space like Facebook or YouTube or Instagram, it’s really possible to get infiltrated by information that can actually have the opposite effect. You start to get kind of hopeless because there can be a lot of negativity in some of those spaces.

Some of the information — for example, I could just be simply looking for a side effect of a medication and then end up finding that three medications down caused this side effect. And now I’m afraid I’m going to have it, right?

So, I kind of like platforms like ChatGPT where it’s gathering the information, but it’s very much tailored and very specific. I get what I ask for as opposed to accidentally falling down that rabbit hole of, oh my goodness, doom and gloom.

So, I think there is a space for it. I think it’s very helpful, especially when it comes to getting information and being on top of the most recent drugs or the most recent news that’s in the myasthenia gravis and autoimmune space.

But again, it’s something that has to be treaded upon very carefully because it can hallucinate. And you are getting information — it’s pulling from the web. So, there are different sources that are not necessarily validated that it’s giving to you.
So, always, always take the information and speak to your doctor about it. But I do think it can be very helpful.

Shawna: Great. Bruce, how about you?

Bruce: Well, I’m not a ChatGPT — whatever that is — guy, but I do research. I love researching. So, I’ll read papers, I’ll read articles, I’ll read stories. I’m not too trusting of too many outside people sources. And I don’t know if they’re trusting of me either.

But I like to read the journals. I like to read the papers. I like to talk to my doctor, my nurse. My wife is a nurse practitioner, but she’s an OBGYN, and I will throw things at her. She can do research too for me. So, that’s my educational source. I’m not really big on AI or any of that. I don’t trust it.

Shawna: Don’t blame you. So, for our viewers who may or may not know, when Vanett mentioned the hallucinations that ChatGPT is somewhat known for, that’s when the artificial intelligence program will create an answer because it sounds right.

It bases the answer off of maybe some information, and maybe it’s drawing conclusions based on how that program was written to pull the information. If you tell it to give you links, you can check your sources like Vanetta was recommending by clicking on the link. If the link doesn’t go anywhere, then it didn’t pull credible information.

ChatGPT is one of many AI platforms that folks are using. You’ve got Gemini, and my preferred AI is actually Perplexity because it’s more scientific. It pulls with less hallucinations compared with ChatGPT or Gemini or some of the others.
Dr. Howard, what are your thoughts on this one?

James Howard, MD: Yeah, it’s an interesting topic that I think will improve over time. But one, as both of you have said, be exceptionally cautious about the misinformation that we get with these machine learning models.

I find ChatGPT to be one of the poorer ones. Our university uses Copilot, which has been trained on a scientific background. And it too still makes mistakes.

In terms of information, I’m struck that no one has talked about our patient associations. The Myasthenia Gravis Foundation of America, the Myasthenia Gravis Association — both have excellent resources and teaching materials that are downloadable from their websites. They try to be current in terms of research news that is coming forth.

I would encourage everyone to seek those organizations out and have them in your quick link file so you can quickly go and pull information. That information is all vetted. If it’s medical information that’s being put forth, it has been vetted by a committee of clinicians skilled in myasthenia. So, it’s quite trustable.

There are other websites. WebMD tends to be reasonable. Certain institutions — Mayo Clinic, for instance, and others — have specific areas dedicated to a particular disease. Those too are quite reasonable. Of course, it’s broad. It’s general. It’s not specific to your particular symptoms. So, one can’t take it as gospel in terms of a management strategy for yourself. But it’ll give you sources of information from which you can explore.

Bruce, reading the journals — I have a whole stack you can read for me and summarize if you’d like. But you know, that’s where the latest stuff is coming, and even that is months old. It’s not up to date, so to speak. We just published a paper on stuff we were doing 18 months ago, and it’s just now finally getting into press. So, keep that in mind as well.

Shawna: Great. Thank you so much. So, the next question is when engaging with online communities — and Vanetta mentioned this earlier — in social media, how do you evaluate and navigate the conflicting advice or the emotional pull, especially when it comes to your established medical guidance?

Do you take the advice you get from these communities at face value, or do you take everything as gospel? And does it depend on which community you’re using? Is a Facebook support community going to be more trustworthy than, say, our own forums with news or the newsletter you might get from the MGFA? How do you decide what information to take and from who? Vanetta.

Vanetta: So, I will admit, in the earlier years of me being diagnosed, I wasn’t really a part of any type of social media. Well, there wasn’t an Instagram or Facebook when I was diagnosed. That wasn’t there.

But even as they became available, I never really subscribed to being in a space where I was part of Facebook community groups or following different people on Instagram with this disease.

But I will say that we are the experts of our bodies, right? And this disease, it does vary from person to person. So, when I do engage in those platforms, I constantly remind myself that this disease varies.

So, it may be true what they’re saying for them, but that doesn’t necessarily mean that it’s wrong. And it doesn’t necessarily mean that it’s right for me.
I always go into these spaces for educational purposes and for support. And again, sometimes you do have that doom and gloom or just people preaching stuff that’s not necessarily accurate or true.

I think it’s important to go into these spaces being comfortable with your condition beforehand. By the time I became engaged in social media platforms, I had had this disease for about 10 years. So, I already knew what it felt like to have certain symptoms.

I already knew what worked for my body, what didn’t work with my body. I already had a good relationship with my provider. So, I was able to ingest this information knowing, OK, this works for that person, but I’m going to stay away from this. Or, oh, this is valuable. Maybe I should speak to my provider about that.

So, I would always caution yourself before you even start to ingest that information. Make sure that you’re secure, that you feel OK with your relationship with your doctor, and where you are in your journey. Be very firm about what you’re looking for and try to control that.

Even now with my access to Instagram and Facebook, there are just certain pages that I like. Just because it’s hashtag myasthenia gravis doesn’t mean that’s something I want popping up on my feed all the time, right?

So, I try to control who I follow. I’m not afraid to block certain pages. Because it does come up in my algorithm, I’m not afraid to block them if I feel it’s something conflicting with my beliefs or making me feel worse — just giving me information versus giving me hope and making me feel more informed or better.

Shawna: Makes sense. Bruce, how about you?

Bruce: I would have to say I agree totally with that because I know me. I know how myasthenia affects me. I know when I’m getting tired. I know when my speech starts feeling thicker. So, I know those steps.

I understand completely that myasthenia affects you differently than it affects the next guy. So, I take anything I read just like that. Then I’ll say, oh, that’s something I haven’t heard before. Right away, I’ll go online and start researching that particular thing.

I very rarely believe or take what people say as gospel truth and then run with it. I feel I’m very comfortable in where I’m at. I don’t get depressed. I know when I’m down with a physical ailment, I know why it’s there.

I know either I did too much work outside in the yard. Maybe I wasn’t taking my meds on time. So, I’ll readjust that. But I’m not sitting there depressed that, oh my goodness, I have this.

Because I’ve had a lot of stuff in my life. This is just another step through my journey. I mean, I broke my back. I broke my neck. I’ve had surgeries. So, my life has been a lot of fun. And this is just another thing that I have now.

Shawna: Love that outlook. OK, so real quick, I want to reemphasize two key resources that Dr. Howard mentioned earlier: Myasthenia Gravis News — which is our event host and home to my column, The Whispered Roar — and the Myasthenia Gravis Foundation of America, which you can find at myasthenia.org.

The MGFA plays an important role in empowering the MG community and empowering patients and caregivers through education, advocacy, and connection — and contributing to global efforts that raise awareness and advance research.