Diet is one of the most obvious places to begin making the necessary accommodations to the demands of a chronic illness. However, it is not always the easiest. For many people with Chronic Fatigue Syndrome & Myalgic Encephalomyelitis (ME/CFS), devising a workable diet poses numerous difficulties. About two-thirds of ME/CFS patients have gastrointestinal symptoms such as heartburn, gas, nausea, diarrhea, constipation, and cramps. In many cases, these symptoms are caused by food sensitivities. Others may have concurrent conditions such as interstitial cystitis or migraine headaches that require certain dietary constraints.
Even those who do not suffer from GI problems still have the demands of a chronic illness to contend with. These patients need to maintain as wholesome a diet as possible, simply to help their ailing bodies to heal. Problems caused by disruptions in cell metabolism, malabsorption, and food sensitivities make it all the more important for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis patients to maintain an appropriate diet – that is, following a diet that will maximize the nutrients available to a healing body while minimizing any harmful effects that specific foods or food additives may produce.
“What should I eat?” is a question asked by most Chronic Fatigue Syndrome & Myalgic Encephalomyelitis patients, and although the question makes a great deal of practical sense, it is not easily answered. Diet is an important consideration for anyone who is ill; in the case of ME/CFS, however, what constitutes an appropriate diet?
This question has no simple answers. ME/CFS patients react to foods with the same frustrating inconsistency as they do to medications. Whereas one person can maintain a vegetarian diet, another needs to eat meat at every meal. Some feel significantly better after cutting back on carbohydrates and eliminating fruit. Because each person’s digestive system reflects one’s own unique case of ME/CFS – complicated by allergies, food sensitivities, bladder sensitivities, blood sugar problems – there is no single “best diet” for patients.
But finding a good diet, even in the most difficult circumstances, is not impossible. Most people proceed by trial and error, noting which foods make them feel better or worse. The following are some simple guidelines that may be helpful in devising your particular ME/CFS diet.
Listen to your body. This is the most important rule for people with ME/CFS. If a particular food item makes you feel worse, don’t eat it, even if it is supposed to be “good for you.” Even “good” foods, such as salad, broccoli, nuts, fruit, and spinach can do harm if you cannot digest them. Your body will, in most cases, give you clear signs when it can’t. Nausea, insomnia, headaches, anxiety, gas, diarrhea, and constipation are some of the side effects produced by the digestive system when it can’t digest the food you have eaten.
Eat sensibly. Patients with ME/CFS need to consume a healthy, balanced supply of nutrients to provide the basic raw materials required to make them well. For those whose choices are not already restricted by food sensitivities, maintaining a broad, varied diet will provide the best basis for improvement.
Eat simply. Try not to mix a lot of different ingredients in one dish. This will help with digestion and make it easier for you to identify food reactions. Use plain fresh vegetables, starches, and proteins.
Eat wholesome foods. Avoid all processed foods, as these contain artificial additives (even when advertised as “natural”). Buy organic foods, whenever possible, to eliminate the extra burden of pesticides, hormones, and antibiotics abundant in most commercial produce and meats.
Some foods should be avoided, because in most patients they will exacerbate symptoms. Chronic Fatigue Syndrome & Myalgic Encephalomyelitis physicians and clinicians advise avoiding the following five foods.
1) STIMULANTS (coffee, tea, caffeinated sodas, cola, some herb teas, including mate, and ma huang). For healthy people stimulants, such as coffee, tea, or energy drinks provide a temporary boost, enabling them to get through a hard day or a crisis. However, because stimulants cause the adrenal glands to work harder, stimulants will exacerbate ME/CFS fatigue. Caffeine also produces insomnia, which is a perennial problem for ME/CFS patients.
2) ALCOHOL (wine, beer, hard liquor). Alcohol intolerance is almost universal among ME/CFS patients. Most people with ME/CFS discover early in the illness that even a small glass of beer or wine makes them quite ill. The reasons for alcohol intolerance are multifold: (1) alcohol acts on the central nervous system, which in ME/CFS patients can be hyper-reactive, (2) alcohol is toxic to the liver, (3) alcohol interferes with the methylation cycle, (4) alcohol is a vasodilator, which will exacerbate vascular symptoms (e.g., NMH and POTS). Because many ME/CFS patients have suboptimal liver function, ingestion of alcohol should be rigorously avoided. Those who are especially sensitive should also avoid herbal tinctures and alcohol-based mouthwashes.
3) SWEETENERS (sugar, corn syrup, sucrose, glucose, dextrose, brown sugar, fructose, aspartame, saccharin). Many people with ME/CFS crave sweets, especially when blood sugar levels fall in the late afternoon. Researchers have proposed that sugar-craving is due to faulty carbohydrate metabolism and subsequent low levels of ATP and blood glucose. Eating foods loaded with simple carbohydrates (sugars), however, only exacerbates the problem.
Blood sugar levels rise after the consumption of carbohydrates, which leads to an increased production of serotonin. Serotonin inhibits the release of cortisol, the hormone responsible for reducing inflammation and releasing stored glycogen from the liver. When cortisol is inhibited, inflammation increases. The problem becomes even more complicated in ME/CFS patients because carbohydrate metabolism is disturbed and not enough glucose is formed from carbohydrates to maintain blood sugar levels. After the temporary elevation caused by the flood of sugar, blood sugar levels plummet. The result is a vicious cycle of physical and mental exhaustion.
Dried fruits, especially dates, and starchy vegetables should also be avoided, particularly in the evening, because they may worsen insomnia.
4) ANIMAL FATS. Liver and gallbladder function, which are vital for breaking down fats, can be impaired in ME/CFS patients, especially those with low blood volume. ME/CFS patients have also been shown to have deficiencies in the transport molecule acylcarnitine, which enables the body to use fats at the cellular level. Eat fats in moderation and avoid rich foods and sauces. If you eat meat, use very lean cuts and remove the skin from chicken and other fowl.
5) ADDITIVES (artificial colors, artificial flavors, preservatives, MSG).Sensitivities to petrochemicals and their by-products are common in ME/CFS patients. People may not realize that many food additives are derived from petrochemicals. Allergic reactions such as inflammation, itching, pain, insomnia, depression, hyperactivity, and headache caused by common food additives can be severe and can contribute to ME/CFS flares. Although all synthetic food additives should be avoided, the following are particularly problematic for patients with ME/CFS.
- Artificial colorings (lake colors, tartrazine, AZO dyes, FD&C, or “coal tar colors”). These are derived from petroleum, and although described as “food” colors, are primarily used to dye cloth.
- MSG and MSG-containing substances (monosodium glutamate, monopotassium glutamate, hydrolyzed vegetable protein [HVP], hydrolyzed plant protein, sodium caseinate, calcium caseinate, and Flavorings). Because glutamate acts as an excitatory neurotransmitter, a number of neurological and allergy-like symptoms can result from consuming MSG, including sneezing, itching, hives, rashes, headache, asthma attacks, acid stomach, excessive thirst, bloating, restlessness, balance problems, chest pain, joint pain, and severe depression.
Food sensitivities can produce such a wide array of symptoms – restlessness, anxiety and panic attacks, migraine, joint pain, insomnia, nightmares, rashes, and malaise – that they might not be recognized in a person with the usual broad spectrum of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis symptoms. For some patients, reactions may be so severe that food intake is drastically restricted.
Fortunately, eliminating a few offending foods from the diet can improve symptoms dramatically.
Dr. Robert H. Loblay and Dr. Anne R. Swain, two clinicians working on ME/CFS research in Australia, discovered that about one-third of their patients considered themselves “much better” after eliminating offending foods from their diets. These patients reported significant improvement in specific symptoms such as headache, muscle pain, malaise, depression, and irritability after adopting a modified diet. Treatment surveys conducted by a DePaul University research team and by Dr. Fred Friedberg also confirm that about one-third of patients who adopt anti-allergy diets experience moderate to major improvement in ME/CFS symptoms.
The task of identifying offending foods is made easier by the fact that most food sensitivities tend to fall into groups that are fairly predictable. The following list, compiled with the help of numerous individuals with ME/CFS, may help you to identify the most common symptom-producing foods.
NIGHTSHADE FAMILY (eggplant, pepper, tomato, potato). All members of the nightshade group contain atropine, an alkaloid that is an anticholinergic (inhibits acetylcholine) and produces inflammation.
MILK PRODUCTS. Many patients, especially children, have sensitivities to milk products. Lactose intolerance can produce bloating, gas, and discomfort. In addition, milk thickens mucus, which can worsen symptoms for patients with allergies.
FRUITS. Fruits contain large amounts of fructose. People with severe problems from defective carbohydrate metabolism experience less fatigue and general malaise with a fruit-free diet. Patients with fewer GI problems often find they can digest fruit better when eaten after a meal rather than on an empty stomach.
GAS-PRODUCING FOOD (onions, cabbage, Brussels sprouts, broccoli). People with gastrointestinal problems should avoid gas-producing foods.
SPICY FOODS (black pepper, curry, garlic). Many people with food sensitivities seem to do best with a bland diet, especially in the acute phase and during relapse. Avoid spicy foods if you have gastrointestinal problems.
RAW FOODS. Even though salads provide necessary fiber, many ME/CFS patients experience discomfort after eating raw vegetables. Eating well-cooked vegetables and grains usually reduces digestive problems.
YEAST-CONTAINING FOODS (brewer’s yeast, fermented products, mushrooms, aged cheese, some B vitamins). Molds, in general, can produce strong reactions in people with ME/CFS.
ACID FOODS (fruits, tomatoes, vinegar). Patients with interstitial cystitis or recurrent gastritis should avoid acidic foods, as these can exacerbate symptoms.
NUTS. Nuts should be avoided because they contain large amounts of arginine, the amino acid needed for herpesviruses to replicate.
SOY PRODUCTS. Soy products sometimes provoke reactions such as headache or gastrointestinal pain in sensitive individuals.
Anything you can do to lessen work in the kitchen will help you improve your diet because you will have more energy to plan and eat meals. If you are acutely ill or bedbound, make it a priority to get some help in the kitchen. People who feel too tired or sick to cook may not eat, which creates problems above and beyond those caused by Chronic Fatigue Syndrome & Myalgic Encephalomyelitis. If friends offer to help, ask them to prepare meals. If you are alone, try some of the following suggestions to cut down on your work load.
- Prepare meals in advance. Cook during periods of higher energy or ask someone to prepare food and freeze it in individual portions.
- Buy frozen food. Frozen organic and natural foods are available from health food stores as well as many supermarkets in urban areas. You can also purchase frozen organic meats and main dishes that do not contain artificial additives.
- Order food by phone. Many grocery stores will deliver for a small fee.
- Contact volunteer services. Many churches and local organizations have volunteers who will help you shop and cook meals.
A Final Word on Diet
Experiment with your diet to find one that works best for you, but remember to use common sense.
Many nutritionists, chiropractors, naturopaths, and countless authors of best-selling diet books have special regimens they claim will produce immediate health gains. Often the pressure to adopt one of these diets can be intense, especially if your friends or acquaintances have heard rumors of cases in which people with cancer, diabetes, heart disease, or other conditions have been cured simply by following a particular diet.
Make diet changes slowly, proceed with caution, and keep in mind that you are the best judge of what is good for you.
*Adapted from Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verrillo.
Books
Food Allergies and Food Intolerance: The Complete Guide to Their Identification and Treatment by Jonathan Brostoff and Linda Gamlin. Healing Arts Press; April 1, 2000.
The Ultimate Food Allergy Cookbook and Survival Guide: How to Cook with Ease for Food Allergies and Recover Good Health by Nicolette M. Dumke. Allergy Adapt, Inc.; November 1 2006
Organizations