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Challenges with Eating

Smell, Taste and Texture Sensitivities

Many with ME/CFS or Long-COVID experience multiple sensory sensitivities, such as to light, sound and vibration. Some experience sensitivities that affect eating (often intermittent, usually worse during a crash), such as to smell and food texture. You may need to experiment to know what you can tolerate.

“Sometimes, all I can eat is smoothies, toast and cheese, and some berries. But when I know that, I just get my mom to not even try to feed me other stuff. Because then I feel sick from the smell and can’t eat anything. We make it work.”

- 15 year old Long-COVID/ME/POTS patient in Surrey

Many people with Long-COVID experience changes in (including partial or complete loss of) their sense of smell or taste.  This can make it hard to maintain a healthy and varied diet. It’s important to identify foods that are both tolerable and nutritious, and to seek alternatives that provide similar nutritional benefits.

“Losing my sense of taste was really distressing - I'd always been a real foodie, and all of a sudden I was dreading meals because I'd have to try to force down something that tasted like cardboard, while trying not to offend my partner who had lovingly prepared it. With time, I found a handful of foods that I could tolerate (plain rice, honeydew melon, capsicum, cucumber, and scrambled eggs), and I ate them at every meal. This made meals more bearable, but it wasn't very nutritionally balanced, and I lost weight rapidly as I wasn't eating enough.”

- Long-COVID patient in Vancouver

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Difficulty Swallowing or Digesting

Most people with ME/CFS or Long-COVID have some type of gastrointestinal symptom, including IBS (Irritable Bowel Syndrome). This can cause bloating, diarrhea and/or constipation, nausea, stomach and gut pain, and other symptoms. 

 

See more on diets specifically for IBS here.

More severe cases of ME/CFS and Long-COVID sometimes come with mild to severe difficulties in swallowing and digesting food. In moderate cases, bland foods, soups, and smoothies may help. 

 

“I don’t even have very bad ME, but I often choke or cough more when I eat than I used to. I always say “I’m OK, I just swallowed my spit,” as I turn red and have to leave the room. I just felt like I was getting old and weird with my eating or something. But now that I know this can be a symptom of ME, it makes more sense. Now I am just super careful to eat slowly and mindfully.”

- Likely Long-COVID patient in Surrey

If swallowing becomes more of an issue, you may need to avoid liquid diets to avoid choking.

 

At worst, a few individuals have experienced such significant eating and swallowing difficulties that they (usually temporarily) require nutritional support through tube feeding.

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Caloric Intake

Due to the low levels of activity resulting from fatigue, pain, and post-exertional malaise (PEM), individuals with ME/CFS and Long-COVID may require fewer calories than healthy individuals of a similar size, sex, and age.

On the other hand, some people lose their appetite or have other gastrointestinal issues that make eating enough (or enough of a variety of healthy foods) difficult. At worst, poor eating can lead to weakened immune responses, reduced muscle strength, delayed wound healing, and exacerbated cognitive problems.

If you experience weight gain or weight loss (or worry about poor nutrition) you  may be able to manage it with careful meal planning, help from family if possible, and following some of the other tips and tricks in this module. However, note that some people experience sudden, unexplained weight changes that may not be manageable with diet. In this case, speak to your doctor.

Anecdotal evidence and some small studies have suggested that people with ME/CFS (and likely Long-COVID) may experience higher-than-usual sugar and carb cravings. The physiological mechanism is unknown, but, as one patient says “ I always liked sugar, but now I can’t seem to stop myself. It’s really bad.” Another patient says that when she craves carbs, “it is often a sign I am outside of my energy envelope.”

Emotional Eating

The emotional toll of living with a long-term and debilitating illness can lead to “emotional eating,” where individuals turn to food for comfort or from boredom, often choosing items high in fat, sugar, and calories. 

Recognizing these patterns and finding healthier coping mechanisms can help mitigate this issue.

“I always ate well and exercised, but when I got sick, I got some pretty strong anxiety as part of the illness. Then I started to freak out and then I started to eat chocolate. Then chips. Then baking. I gained so much weight so fast. I finally had to treat the anxiety and get some help from a dietitian. I wish I’d faced it sooner.” 

-ME (possibly Long-COVID) patient in Surrey

Try distractions such as easy activities (reading/books on tape, puzzles, short walks if you can, knitting, etc.) or social interactions (a quick zoom call with a friend or talk to your family about what they will be making for dinner).

 

While some people can get back to healthy eating patterns on their own, tackling emotional eating can be difficult and you may need help from a doctor, dietitian, family, counsellor, or even medication to treat other triggering symptoms (such as anxiety). If you need to, reach out for help early.

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