Wednesday, July 15, 2009


Right off the bat, there are a number of items where the Patient Advocate can be very helpful to the patient. One of these items is diet. Surprisingly very few doctors talk about diet as a treatment modality for CFS/ME. Those that do are often driven by their own prejudices about food. Perhaps the reason that doctors do not talk about diet is that they are ignorant on the subject? Perhaps it is because patients are so non-compliant in the area of diet? A few doctors, like Dr. de Meirleir or Dr Rae, have dieticians connected with their practice.

The fact is that diet can make a difference in fighting this disease. The important point is that care has to be taken to restrict what goes into the mouth of the patient. It takes hard work to insure that the patient eats only beneficial and supportive food. It is up to the PA to help the patient recognize this.

Different people – patients, doctors, researchers – say different things about diet. It is a very confusing subject. The PA and the patient are going to have to individualize the dietary part of their recovery, drawing from various sources. Regardless of the way that it develops, the effort brings betterment. Some people think that a vegetarian diet is healthier for CFS patients. Others feel the opposite - that the patient should eat a moderate protein animal diet, high in vegetables with a low carbohydrate intake. This is known as the Paleo diet or the Stone Age diet. I have spoken elsewhere of the strict dietary recommendation given by the patient MATN on the Prohealth discussion board. Other references were made to Dr. Sarah Myhill and her dietary recommendations. Dr. Myhill goes so far as to say that a vegetarian cannot recover from the disease. And then there is woman who wrote the SCD book.

The patient can be tested for allergies to dairy and wheat and gluten and the diet adjusted accordingly. Food allergy testing can be done through Genovas laboratory. Foods can be avoided or antigen drops can be taken for particular allergies in order to build tolerance.

Most diets for CFS involve restraint and moderation. The name of the game is cutting back and cutting out. Often the dietary restrictions, as developed, can be quite extensive. At times it looks as if everything that is pleasing to eat should be avoided. Many people cannot embrace such restrictions, no matter how sick they are. The CFS patient should avoid alcohol, tobacco, caffeine, high carbohydrate foods, sugar, white flour, and perhaps dairy, gluten, grains, and wheat. This is a forbidding task and it is not surprising that there is not a whole lot of discussion of diet on message boards or in the presentations of doctors. A PA can listen to an entire three-hour lecture by Dr. Paul Cheney and hear not one word about diet.

Often the patient will have special dietary needs. These might be unfolding and changing over times. Often a patient will only eat organic foods or foods that are not processed. With this in mind, the PA will scour the shelves of the Whole Foods or Kowalski’s or The Wedge to find the most beneficial foods for a particular diet, or the PA might ask questions of the staff about the ingredients of various prepared special foods. At a store like WF, the PA will learn that certain especially prepared foods are not available except on Tuesdays. The PA must get to know well the shelves of various food stores. As a sidelight the PA will learn much about diet that is advantageous to himself (and his friends).

Water, too, needs to be given fair consideration. Tap water includes too many variables and impurities - and needs to be avoided. In its place can be substituted various mineral waters, distilled water or reverse osmosis water from health coops or Whole Foods. It is a good idea to rotate water and not drink from plastic bottles. Glass containers are preferred.

This PA has done some research on water filters, eventually talking to a fellow in Maryland, recommended by Dr. Jacob Teitelbaum. This fellow, Brent, “knew all about them” Consequently the PA spent $200 on a water filtration system for his patient. This water filter is installed on the kitchen sink and needs a new filter every year. All water fro cooking goes through this filter. This advanced water filter does not screen out fluoride. This is a big problem, and points to the idea that a better filter is necessary. Fluoride is seen as a problem for CFSers, depending to whom you talk.

Care also has to be given to cookware. If the patient has a problem with nickel, all stainless steel cookware needs to be discarded and a nickel free brand of cookware should be substituted. Nickel-free cookware is not cheap.

Each patient must try to determine the most optimum dietary rules for themselves. What goes into the body is important in terms of bringing the necessary nutrients to a depleted system. This endeavor needs continuous attention and it can be an expensive enterprise as bottled water, non-antibiotic meats, and organic vegetables can be expensive.

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