Adults with Charcot-Marie-Tooth disease (CMT) say physical symptoms, especially fatigue, along with challenges related to grocery shopping and limited lifestyle-focused guidance from healthcare professionals, can make healthy eating difficult.
That’s according to a recent study that also identified factors that helped patients maintain healthier eating habits. These included recognizing the mental and physical benefits of healthy eating, planning meals in advance, support from family and online communities, and access to tools or resources that help make food preparation easier despite physical limitations.
“Developing interventions that consider multifactorial determinants of healthy eating will offer greater potential to positively impact the [quality of life], long-term health and well-being of individuals living with CMT,” the researchers wrote.
The study, “A qualitative study of enablers and barriers to healthy eating in adults with Charcot Marie Tooth disease using the Theoretical Domains Framework and COM-B model,” was published in Journal of Health Psychology.
Study explores barriers and supports for healthy eating in CMT
CMT is a group of genetic conditions that damage peripheral nerves — the nerves that control movement and sensation to the arms and legs. Symptoms such as sensory loss, muscle weakness, pain, and fatigue can make everyday activities more difficult, including tasks related to preparing and maintaining healthy eating habits.
Researchers in the U.K. explored barriers and supports related to healthy eating among 22 adults with CMT, 17 women and five men, ages 25 to 73. Most participants had CMT type 1A (63.6%), and one had CMT type 2A. The remaining participants were unsure of their specific CMT type.
Participants were interviewed using open-ended questions about their experiences with healthy eating. The questions were based on the Theoretical Domains Framework (TDF), a research tool used to identify factors that influence behavior. The researchers then used another framework, called the COM-B model, to better understand what might help people develop healthier eating habits.
Overall, the researchers identified several key factors that could either help or hinder healthy eating. These included physical ability, psychological factors, access to supportive environments and resources, social support, and motivation.
Many participants said they understood the importance of healthy eating and its benefits for both physical health and well-being.
“Healthy eating is the best way to minimise the adverse consequences of unhealthy eating,” said Jim, one of the participants. “I don’t want to get diabetes. I don’t want to get fatty liver disease, and eating healthy will give me the best chance of living healthily and sustaining my well-being.”
Participants also said healthy eating helped support both physical appearance and mental health. “This might seem shallow, but when you look better physically, you feel better, your mental health is better,” said Tamsin, another participant.
Fatigue, weakness, and daily limitations make healthy eating harder
Physical symptoms of CMT were among the most commonly reported barriers to healthy eating. Fatigue, pain, reduced strength, and difficulty with fine motor tasks — such as gripping or handling objects — made it harder for participants to prepare meals or shop for groceries. Many said they had to carefully manage their energy levels to complete these activities.
Participants who were employed said balancing healthy eating with work demands was especially challenging. “Workdays are more challenging because I don’t work from home,” Rosie said. “On workdays, I can’t go into my kitchen and make something, like a salad, so I grab a sandwich normally, so I don’t have to prepare anything, which doesn’t have the vegetables in it that I would have in a salad.”
Some participants said assistive kitchen tools and home modifications made food preparation easier. Having access to a car was also important, as grocery delivery services were not always practical due to physical limitations.
I don’t want to get diabetes. I don’t want to get fatty liver disease, and eating healthy will give me the best chance of living healthily and sustaining my well-being.
“They deliver huge baskets, and you’ve got to bend down. But I can only carry a couple of items at a time because of my balance, so it takes twice as long to do that,” Emmeline said.
Participants also reported limited guidance from healthcare professionals about healthy eating. “It was just a case of ‘This is what you have, goodbye’. In my checkups with the neurologist now, no one has ever mentioned eating,” Emmeline added.
However, one participant said her healthcare provider offered practical advice on adapting food preparation routines to better manage CMT. “Vera’s experience demonstrated how the sharing of knowledge and ideas could have a positive impact on healthy eating,” the researchers wrote.
Support, adaptations, and resources help enable healthier eating
To help maintain healthy eating habits, many participants turned to self-directed learning through online resources, social media groups, and charities. Support from spouses and partners was also important, especially when it came to preparing meals.
Overall, the researchers said their findings point to several practical ways to support healthier eating in people with CMT. These include providing clear, accessible nutrition information through digital resources or materials shared during medical visits, strengthening support networks, and making grocery delivery more accessible — for example, by using elevated baskets that are easier to reach. They also emphasized the importance of a “whole-person” approach that considers each individual’s physical abilities, lifestyle, and daily challenges.
“These findings provide a foundation for developing evidence-based, context-sensitive dietary interventions tailored to the lived experiences of individuals with CMT,” the investigators concluded.
