Nutritional supplements are an essential component of any ME/CFS treatment protocol. Research has shown that people with ME/CFS are routinely deficient in several important nutrients. These deficiencies can decrease the degree to which the body can absorb and make use of other nutrients.
Even in the absence of clinical nutritional deficiencies, the physiological demands of a chronic illness make it necessary to provide additional nutritional support – especially in light of the numerous GI problems prevalent in the ME/CFS population, which may lead to malabsorption. Most ME/CFS doctors recommend nutritional supplements as part of their protocols.
How to take supplements
As with pharmaceuticals, supplements should initially be taken in very small doses to test for sensitivity. Even if a supplement consists of something “natural” there is nothing natural about taking it in concentrated doses. For that reason, it is wise to take supplements with food, unless instructed otherwise.
“Take with food” means eat a little first, then take the supplement, then eat some more. By sandwiching the supplement within a meal, you lower the risk of reactions, as the supplement is processed along with food. Sandwiching supplements also reduces the risk of heartburn. When a supplement is taken with water it floats to the top of the stomach, where it can easily flow back into the esophagus, causing irritation.
New supplements should be taken one at a time. That is, don’t start several supplements at once, even if they are supposed to act synergistically. Take the new supplement for three or four days before introducing another. This allows you to evaluate it for possible negative reactions or sensitivities.
How much do supplements cost?
Supplements can be quite expensive and are not usually covered by health insurance. But purchasing the cheapest brand is not always the wisest course to take. There is a wide range in quality when it comes to nutritional supplements.
Some of the cheapest brands may not even contain the ingredients on the label. It is best to stick to well-known brands and to purchase from reputable suppliers. Purchasing online, rather than from retail outlets can cut the cost of expensive supplements in half.
Five commonly recommended supplements for ME/CFS patients
Each patient has a different nutritional profile, depending on the range of symptoms. However, a few are widely used and appear frequently in the literature on ME/CFS.
• Acetyl-L-Carnitine. Several studies have shown that ME/CFS patients have a deficiency in intracellular levels of acylcarnitine. Carnitine is crucial for the transport of long-chain fatty acids into the mitochondria of cells, providing energy to skeletal and heart muscle. Carnitine deficiency produces fatigue, muscle weakness, malaise, exercise intolerance, heartbeat abnormalities, and tissue acidosis. (Note: Carnitine should not be taken by patients with hypothyroidism or Hashimoto’s disease.)
• Antioxidants: Alpha Lipoic Acid, Vitamin E, Vitamin C, etc. Antioxidants are a group of vitamins, minerals, and enzymes that help protect cells from free radical damage. Because there is ample evidence that ME/CFS produces oxidative stress, many patients are advised to take antioxidants. Antioxidants not only reduce oxidative stress, they improve mitochondrial function. Dr. Martin Pall has a list of 17 different antioxidants he recommends for ME/CFS.
• CoQ10 / Ubiquinol: CoQ10 (ubiquinone) is a fat-soluble coenzyme found in the mitochondria of most mammal cells. It is one of the most frequently used supplements for the treatment of ME/CFS-related fatigue because of its importance in the production of adenosine triphosphate (ATP), the cellular source of energy. In addition to reducing fatigue, CoQ10 may alleviate muscle weakness and pain. It is also one of the few supplements that may reduce cognitive dysfunction. Its role as a free radical scavenger may lead to improvement in immune responses in patients with ME/CFS.
• Essential Fatty Acids: Omega-3, Omega-6, EPA, DHA, Fish Oil, Flaxseed Oil, Evening Primrose Oil, Borage Seed Oil. Essential fatty acids are vital for maintaining the structure and function of cell membranes, particularly in the nervous system. They can also act as immune system modulators, enhancing immune system activity where needed, and inhibiting it when there is an upregulated immune response. A number of studies have found that ME/CFS patients benefit from supplementation with EFAs.
• Vitamin B12: B12 shots were once routinely administered to ill patients, but that practice died out along with home visits. Dr. Charles Lapp and Dr. Paul Cheney observed that B12 injections have been beneficial to their ME/CFS patients, even in the absence of vitamin B12 deficiency or any sign of anemia. B12 is also used by Dr. Sarah Myhill, and is part of the methylation protocol. B12 is essential for patients with MTHFR mutation, a genetic mutation that impairs methylation.
The Dietary Supplements Labels Database – This is a very useful website that allows you to search for product labels by manufacturer and by product.
Natural Products Foundation – The NPF keeps an excellent database of supplements, as well as the medical conditions they are used for
Consumer Healthcare Products Association – The CHPA website provides a search for government warnings and decisions regarding most OTC medications and supplements.
Review of Nutritional Supplements Used for CFIDS/FM by Lucy Dechéne, Ph.D.
The Massachusetts CFIDS/ME & FM Association Winter 2003 UPDATE
Dr Lapp’s Recommendations on Supplements by Bruce Campbell, CFIDS and Fibromyalgia Self-Help