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Navigating Nutrition with ME/CFS and Long-COVID

For those of us living with ME/CFS or Long-COVID, managing nutrition can be a real challenge in multiple ways. There is a lot of confusing or contradictory advice out there, weak scientific evidence for most advice, and some advice that works for healthy individuals that may make our symptoms worse. 

To make it more difficult, nutrition can be a fraught and personal topic for many people. As one Long-COVID patient in Vancouver says: “There are lots of differing and strong opinions on diet. Low histamine, anti-inflammatory, keto, gluten and dairy free diets. Intermittent and multi day fasting. All so confusing and of course there's no data on any of it for [these illnesses].”

There are no clear, proven nutrition answers that work for everyone with ME/CFS or Long-COVID. However, there IS credible evidence for the harms or benefits of certain dietary choices to help with specific issues or symptoms. It is this experience- and evidence-based information we share on this page. If there is something that works for you (or doesn’t!) that we have not covered here, let us know at feedback@mefm.bc.ca.

Nutritional Deficiencies and Supplementation

There are no supplements that experts agree must be taken by everyone with ME/CFS or Long-COVID. Many experts suggest that most people with these illnesses (unless they have specific, identified deficiencies) should be able to get proper nutrition through diet.

 

See here for an overview discussion of evidence for vitamin use in ME by Dr. Charles Shepherd, ME Association, UK. 

“With the exception of folic acid, there is little in the way of reliable published evidence to show that people with ME/CFS are deficient in any specific vitamin – provided they are not on a restrictive diet. Much of the ‘evidence’ which supports the use of vitamin supplements in ME/CFS is based on anecdotal reports from vitamin-enthusiast doctors and alternative practitioners. It’s not hard scientific fact.”

- Dr. Charles Shepherd, ME Association, UK

Challenges with Eating

There are a few general challenges some people with ME/CFS or Long-COVID face that it might help to be aware of as you plan how to best stay nourished, eat in ways that help avoid symptoms and crashes, and continue to enjoy food and the preparation of food as often as possible.

See here for information and some personal experiences of: 

  • Smell, Taste and Texture Sensitivities

  • Difficulty Swallowing or Digesting

  • Caloric Intake

  • Emotional Eating

IMPORTANT: 

  • Individual responses to diet and supplements can vary greatly among those with ME/CFS or Long-COVID. Make changes slowly, add or eliminate one thing at a time to understand if there is an effect. Only you can be sure what works for you.

 

 

  • Consulting with healthcare professionals, such as a registered dietitian or a doctor, is crucial to tailor dietary plans and supplementation to individual needs, and to ensure they do not exacerbate other conditions or interfere with any existing treatments or medications.

Challenges with eating
Nutritional Deficiencies

Despite the lack of “hard scientific fact,” there is some evidence to support the value of certain dietary add-ons for certain deficiencies and symptoms, and taking a good daily multivitamin (with no more than the daily recommended intake for each element) is always an option. 

Following is a list of some of the vitamins and supplements that have some degree of evidence or strong anecdotal support suggesting they may help for ME/CFS or Long-COVID. You can also ask your doctor if they think you should take a blood test to identify any specific deficiencies.

REMEMBER: Nothing we present here is medical advice. Always discuss with your healthcare provider(s) before making any dietary decisions or changes.

Some of the most recommended and well-reviewed (anecdotal by patients, doctors and/or organizations) supplements for ME/CFS and Long-COVID include the following:

  • Vitamin D3

  • Folic Acid, B6 and B12 (sometimes B1)

  • Magnesium

  • Omega-3 fatty acids and zinc

  • Coenzyme Q10 (CoQ10)

  • D-Ribose

  • Carnitine

  • Iron

See here for descriptions, details, and references for this list of supplements.

Supplements List
Food Sensitivities
Food Sensitivities with ME/CFS and Long-COVID

In the previous section, we looked at some supplements that might help. In the section below, we will be looking at dietary considerations to help with a few common comorbidities of ME/CFS and Long-COVID (like Irritable Bowel Syndrome and orthostatic intolerance).

In this section, we present a quick overview look at some general and common food sensitivities some people with ME/CFS or Long-COVID may be experiencing.

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As always, you may have to experiment to understand how food affects your symptoms, and you should always work with your healthcare provider(s) when making dietary decisions. 

The section below includes both anecdotal and research-based information, and is meant only to help you and your doctor work through what will work best for you.

 

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A Few General Notes on Food Sensitivities

  • It is common not to know you have food sensitivities because they can produce such a wide array of symptoms – restlessness, anxiety and panic attacks, migraine, joint pain, fatigue, brain fog, insomnia, nightmares, rashes, and malaise – that they might not be recognized in a person with the usual broad spectrum of ME/CFS or Long-COVID symptoms.

  • You may decide to remove certain foods from your diet (often called an “exclusion diet”). But, overly restricting your diet may make you vulnerable to malnutrition and worsen your symptoms. 

    • The key is to find a balanced diet that maximizes nutrients while minimizing adverse food reactions. Get guidance from your healthcare worker(s) and listen to your own body if you think certain foods make your symptoms better or worse.

 

  • Food sensitivities are more likely to be intolerances rather than allergies, which means that they do not involve the immune system. You may be able to have small amounts of the food without triggering a reaction. (citation)

  • It is always important to stay hydrated and focus your diet, as much as possible, on whole (unrefined) foods.

One BC specialist noted to an ME patient in Langley that you should maintain variety in your diet for general nutrition but also because people with ME have a tendency to become sensitive to foods that they eat repetitively.  

Some Common Food Sensitivities

Some common food sensitivities with ME/CFS and Long-COVID

To see extra details, explanations and references for each item in the lists below, see here.

Some types of foods and ingredients that many ME/CFS and Long-COVID patients with sensitivities find particularly problematic include:  

  • Stimulants

    • coffee, tea, caffeinated sodas, cola, some herb teas, including mate, and ma huang

  • Alocohol

    • wine, beer, hard liquor

  • Sweeteners

    • sugar, corn syrup, sucrose, glucose, dextrose, brown sugar, fructose, aspartame, saccharin

  • Additives

    • artificial colors, artificial flavors, preservatives, MSG

Some food groups you might consider thinking about if you still feel you have a food sensitivity you have not identified among the ones at the left (always work with your doctor!):

  • Nightshade family

    • eggplant, pepper, tomato, potato

  • Milk products

  • Gas-producing food

    • onions, cabbage, brussel sprouts, broccoli

  • Spicy foods

    • black pepper, curry, garlic

  • Raw foods

  • Yeast-containing foods

    • brewer’s yeast, fermented products, mushrooms, aged cheese, some B vitamins

  • Acid foods

    • fruits, tomatoes, vinegar

  • Soy products

  • Animal fats 

Comorbidities and Diet

Comorbidities such as POTS (or other orthostatic intolerances), and Fibromyalgia (FM) are common among those with ME/CFS or Long-COVID.

 

Sometimes, special diets (or adding/limiting certain foods/supplements) can help to manage these conditions. If you decide you want to try out some changes to your current diet:

  • Work with your healthcare providers (and dietitians, if you like) to identify any comorbidities and develop a relevant personalized diet. 

  • Be aware of all your health issues. You may need to adjust your diet to address more than one requirement (ex: a diet to help with both type 2 diabetes and gastrointestinal sensitivities).

  • Supplements should only be taken under the guidance of a healthcare professional to ensure they are necessary, used safely and at the appropriate dosage, and do not interact negatively with other medications.

Previous sections of this module have discussed general challenges with eating, nutritional deficits and supplements, and food sensitivities with ME/CFS and Long-COVID.

 

Here we provide some information and ideas on nutrition and diet for some common comorbidities:

Comorbidities and Diet
Food Prep

Food Preparation

Shopping for groceries and preparing meals can be a challenge with ME/CFS and Long-COVID. If you have specific food sensitivities or dietary restrictions, it can be even harder.

See HERE...

...for some strategies that can help with shopping, meal prep, and working in and around your kitchen. 

For some fun food ideas from one of our friends in Langley with ME, as well as some excellent low-FODMAP recipes and links:

See HERE

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