Stress, rest, and AI: Patients share daily tips for better quality of life

Facing the daily challenges of myasthenia gravis (MG) requires more than medication:
It demands diligent self-management, including careful attention to stress and rest, and a cautious navigation of the digital world.

Those are the main takeaways from the webinar, “Pushing Back at MG: From Getting Informed to Taking Action,” which was presented Oct. 23 by Myasthenia Gravis News and its publisher, Bionews, with support from the biopharmaceutical company UCB.

The panel of experts and patients focused on the need to manage stress and get plenty of rest as key aspects of daily care while living with MG. The value of taking notes about daily experiences was also emphasized to help improve communication with healthcare professionals. Finally, in an age where information is abundant but not always reliable, attendees were advised to be cautious when using artificial intelligence (AI) platforms and instead rely on trustworthy sources, including the Myasthenia Gravis Foundation of America and Myasthenia Gravis Association.

Panel discusses MG management

The webinar was moderated by Shawna Barnes, who was diagnosed with MG in 2018 and now writes the column The Whispered Roar at Myasthenia Gravis News.

Joining Barnes were two people living with MG: Vanetta Drummer-Fenton, who was diagnosed in 2003, and Bruce Guercio, who was diagnosed in 2013. Rounding out the panel was James F. Howard Jr., MD, a neurologist at the University of North Carolina who directs the university’s Myasthenia Gravis Clinical Trials Program.

MG is an autoimmune disease caused by self-reactive antibodies that interfere with communication between nerve and muscle cells, resulting in symptoms such as muscle weakness and fatigue. Barnes described MG-related fatigue as feeling like “everything is heavy because you just can’t lift your muscles.”

The disease is typically marked by flare-ups (also known as relapses), which are periods where symptoms suddenly worsen. MG relapses don’t always have a clear cause, but Howard said they can often be triggered by physical or psychological stress.

“Stress is a prime instigator of worsening symptoms,” he said, noting that this can include “the stress of infection, the stress of a surgical procedure, [or] the stress of discord among the family unit.”

Even powerful positive emotions can sometimes trigger MG, Howard said, recounting the case of a teenage girl who experienced a myasthenic crisis — a life-threatening complication that can lead to respiratory failure — shortly after setting a state record in a high school sport competition.

“Happiness [or] sadness can modulate our immune system and [increase] dysfunction within the immune system that causes aggravation of myasthenia. … It’s very, very common,” he said.

Managing stress and resting

To manage stress and navigate life with the disease, the panelists all agreed that it’s critical for people with MG to get plenty of rest, building breaks into their daily routines so they have time to recover.

“Like, for today, I woke up, took my meds, [then] had to take a break,” Barnes said. “I went and had brunch … came back, had to take a break. Showered, had to take a break. Got dressed, another break. Did my makeup, another break. Had to come upstairs, another break.”

Guercio also described his routine as “get up, do my thing, rest, do something else, rest.”

Barnes said recognizing breaks as necessary to replenish energy is crucial for continuing her day. “That’s my biggest tool, I think, in the daily practice: is accepting that I need those things and not being upset about it,” she said.

The panelists also stressed that each person with MG is different, so it’s important for patients to be in tune with their own body and pay attention to what does or doesn’t work for them.

For example, Drummer-Fenton said she’s never been a morning person, and she’s found her MG gets worse if she tries to push herself out of bed early with alarms.

“So one of the daily practices that I have is that I don’t wake up to alarms anymore — mostly because I have a 7-year-old — but I give myself enough time to kind of ease into the morning, making sure that I give myself enough time to get ready” and have “a minute to pray, meditate, [or] read something uplifting or positive before I start my day.”

Overall, “there is no single way to do it,” Howard said, emphasizing also that what helps a person with MG get through their day is “not going to be consistent day to day … And one has to adapt to that.”

While lifestyle adjustments can make life with MG more manageable, most patients will require treatment to keep the disease in check, and the panelists discussed strategies for developing productive relationships with healthcare providers.

Happiness [or] sadness can modulate our immune system and [increase] dysfunction within the immune system that causes aggravation of myasthenia. … It’s very, very common.

Building a productive partnership with doctors

MG patients can often enter discussions with providers feeling frustrated and desperate for answers, but taking an accusatory attitude can make providers feel defensive, leading to unproductive conversations, Barnes noted.

Instead, the panelists said it’s important for patients to be open and communicative so they can form partnerships with their healthcare team where everyone is on the same page working toward shared goals.

“We want a partnership so that … you win because they become invested in you just as much as you’re invested in your own outcome,” Barnes said.

Drummer-Fenton said she tries to set positive intentions before appointments by saying “a little prayer … just like, please let my doctor have a great day today so we can have a great conversation.”

The panelists also emphasized that taking detailed notes between appointments about symptoms, flares, and potential triggers, rather than trying to rely on memory in the doctor’s office, will make discussions with providers more productive.

For some, new technologies like AI may make it easier to take such notes. Drummer-Fenton likes to use AI tools such as Copilot and ChatGPT to record when she doesn’t feel well.

She noted the tools can record her voice even when she doesn’t feel up to typing, and they can time-stamp the recordings for future reference. She has also found it helpful to record videos of herself to show during appointments.

Guercio has found it helpful to take notes about his symptoms between appointments, though he prefers a more old-school approach: the memo app on his iPhone, “because I’m ancient.”

It’s a good idea to have a friend or family member present during appointments to make sure nothing is missed, Howard noted.

“You’re not going to remember everything that’s discussed [and] you may not remember all you want to talk about,” he said, so it’s useful to have someone else present who can offer reminders during and after the appointment.

Barnes agreed, and said her husband usually accompanies her to appointments and that his presence “has been very helpful when it comes to my team and I coming up with a plan.”

Navigating information, including AI, about MG

The panelists also discussed how new technologies have dramatically shifted how people access information about MG.

When Drummer-Fenton was first diagnosed with MG as a teenager, there was little information available to her. Her only sources to learn about this rare disease were her neurologist and the hospital’s library, which had “one thick medical journal with, like, one paragraph talking about myasthenia gravis.”

Now in 2025, patients are often faced with the opposite problem. There is a wealth of information about MG online, but not all of it is reliable. The recent widespread use of AI has amplified this issue. While AI programs can quickly provide easy-to-understand information, they are also prone to “hallucinations” where they provide entirely false information.

Opinions were mixed among the panelists about whether AI is useful for answering questions about MG. Guercio said he doesn’t like to use these tools and prefers instead to read primary sources such as academic papers, whereas Drummer-Fenton said she has found AI useful as long as she takes care always to double-check the information it provides.

“I think [AI is] 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,” Drummer-Fenton said, though she stressed that these tools aren’t flawless. “I would make sure that whatever information that you’re getting from … any AI tool that you’re validating it with your provider.”

Howard agreed that AI can be useful, but patients should be “exceptionally cautious” about the potential for incorrect or misleading information.

For people with MG who want to learn more about their disease but aren’t sure where to start, the panelists recommended turning to patient advocacy organizations. The medical information put out by these groups has “been vetted by … a committee of clinicians skilled in myasthenia, so it’s quite trustable,” Howard said. “I would encourage everyone to seek those organizations out and have them in your quick link file so that you can quickly go and pull information.”