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Some With Multiple Sclerosis Put Their Hopes in a Diet

What you are about to read is not an endorsement of any particular diet as a therapy for multiple sclerosis. Nor is it a suggestion to forgo established medical treatments.

But so long as it is part of a medically approved treatment program, the diet described here is unlikely to hurt, except perhaps to make meal planning a challenge. And on the testimony of those who have followed it, the plan may be worth trying, despite the lack of scientific evidence to support it.

The diet has not been subjected to a placebo-controlled, randomized clinical trial, the gold standard for determining the value of any therapy. But Ann D. Sawyer and Judith E. Bachrach, co-authors of “The MS Recovery Diet,” say this should not dissuade people struggling with the debilitating symptoms of the degenerative disease.

The diet they outline extends one developed decades ago by Dr. Roy L. Swank, an emeritus professor of neurology at Oregon Health Science University.

It severely restricts saturated fat and increases essential fatty acids like fish and vegetable oils, measures endorsed by the National Multiple Sclerosis Society as part of a healthy diet.

In 2003, Dr. Swank reported that among 144 patients placed on his diet 34 years earlier, two-thirds of the 70 who carefully followed it survived, compared with one-fifth of the 74 who were “poor dieters.”

Dr. Allen C. Bowling, a neurologist and nutrition expert at the Rocky Mountain MS Center in Colorado, wrote that “no well-designed clinical trial has been conducted to determine whether decreasing dietary sources of saturated fat improves outcomes in MS.” “The whole area of diet has been a loose thread in MS studies — the evidence is tantalizing but not definitive,” he said. “Making reasonable changes in diet is not going to hurt, but at the same time it’s important for people with MS to take advantage of what conventional medicine has to offer and optimize their treatment options every single day.”

Besides saturated fat, Ms. Sawyer and Ms. Bachrach suggest that other potential dietary culprits include dairy, grains with gluten, legumes, eggs and yeast. “Beyond the five usual suspects, each person may have very individual food sensitivities to herbs, spices or food in any category,” they write. Each patient would have to determine personal sensitivities through trial and error. In an interview, Ms. Sawyer said: “This approach is simple, it doesn’t cost anything and nobody is making money from it. We’re not saying the diet is a cure; it’s a way to control the symptoms of MS. Walking around watching what you eat is a lot better than sitting in a wheelchair.”

Before she started the diet, Ms. Bachrach, a former dancer and movement instructor, could not even use a wheelchair because her upper body had become too weak to manipulate it. She was 35 when she learned she had MS; by 49, she was mostly bedridden. Then, in 2006, she met Ms. Sawyer and decided to try the diet she suggested. “After one week on this diet, I regained feeling in my toes,” she wrote. “After about six weeks, I also gained incrementally in terms of endurance and muscular rebound. I was even able to walk back down to the waterfall on my land, to carry firewood, to empty the ash bucket, to make a spaghetti sauce and to stay up to greet my husband on his late return from a trip, all in one day, and still felt just fine. “There is no doubt that on this diet, my good days are definitely better. I continue to gain new sensations, mobility, strength and endurance every month.”

Hers is one of nearly a dozen dietary “success stories” recounted in the book. Several other patients reported that they remained well as long as they stuck to the diet, then relapsed when they got careless about food, only to improve once more when they went back on the diet. Why, you may wonder, isn’t everyone with MS on this diet? The answer lies partly in the complex nature of the disease.

Multiple sclerosis is a highly variable autoimmune disorder in which the body’s own immune system attacks the myelin sheaths that protect axons, which transmit nerve signals in the brain. The most common form is called relapsing-remitting: patients are well for a time, then their symptoms return, only to subside again sometime later, with or without treatment. Thus, it is hard to know whether any improvement is due to diet.

Patricia O’Looney, vice president for biomedical research at the Multiple Sclerosis Society, said in an interview: “There’s a strong placebo effect in MS. With any change a person makes — in diet or whatever — they’re likely to feel better because they’re taking some action. Eating less saturated fat and more fish oil is good for all of us. But we’d never suggest changing one’s diet in place of taking a therapy approved by the Food and Drug Administration."

The theory behind the “recovery diet” is that in susceptible people, partly digested proteins stimulate an allergy-like immune response, resulting in antibodies that mistake myelin for the offending protein. These antibodies can then enter the brain and attack the myelin sheath, disrupting nerve conduction and eventually causing death of the axons. The goal the authors suggest is to identify and eliminate culprit foods from the diet to quiet the immune response.

There are several problems involved in trying to test this or any other dietary regimen scientifically. As Rosalind Kalb, an associate vice president of the MS society, explained, the cyclical nature of the disease means that studies must be long term. “Over an extended period people have to follow an exact diet,” she said in an interview, and the findings among them must be compared with people on ordinary diets.

Documenting adherence to a strict regimen like the recovery diet is challenging in itself. And since there may be individual sensitivities, there are too many variables, and it is hard to know what to exclude from the test diet. It is one thing to examine a single nutrient like omega-3 fatty acids or vitamin D, but much more difficult to test a diet in which many different nutrients are involved. “Thus far, no researcher has been interested in taking this on,” Dr. Kalb said. “The medications seemed to show more promise.”

Source: The New York Times Copyright 2008 The New York Times Company (11/03/08)

New research into multiple sclerosis

Multiple Sclerosis (MS) is a condition of the central nervous system which affects over 16,000 Australians. Today Alex is joined by regular 666 dietitian Caroline Salisbury, with Robbie Costmeyer, chief executive officer of MS Australia, and Professor Anne-Louise Ponsonby a researcher with the Ausimmune study.

"Sclerosis" refers to damage and inflammation of the protective sheet of fatty tissue or myelin which surrounds the nerve fibres of the central nervous system. MS involves temporary or permanent interruption to these nervous signals. Symptoms can include loss of co-ordination, fatigue, numbness and changes in vision. MS is more likely to be diagnosed in young adults between 20 and 40 years old, and it's twice as likely to affect women as men.

New Australian research is providing important information about environmental factors and the development of MS. It has been known for some time that there is a strong latitude related gradient in the occurrence of several auto immune diseases including MS. The Ausimmune study is tracking the occurrence of the first demyelinating episode or FDE, an inflammatory condition in which the myelin is disrupted. Professor Ponsonby and the Ausimmune team of researchers have released some preliminary results which confirm that MS becomes more common as you move further north or south from the equator. Even within Australia the occurrence of MS varies with around 11.9 cases per 100,000 people and 75 per 100,000 in Tasmania. The question is which environmental factors play a part ?, including the role of sunlight and Vitamin D in the development and progression of MS.

MS can impact on numerous aspects of life and one of these is diet. There is yet to be any direct evidence of the role of diet in the development of MS, including risk of MS in countries with high intakes of saturated fats, and lower intakes of polyunsaturated fats. Essential fatty acids including omega 6 and omega 3 are significant in the structure of the brain tissue and myelin sheath, with 1/3 of the myelin sheath is polyunsaturated. Like most chronic conditions, diet and nutritional supplements can be seen as a possible treatment, but the research is unfortunately inconclusive.

One major study on the role of diet in the progression of MS was undertaken by Dr Roy Swank who treated MS patients over a period of 34 years. These patients followed a diet including less than 20g of saturated fats per day, as well as a high intake of polyunsaturated fats. Swank reported lower death rates and lower progression for patients following the "swank diet". An Australian version of this diet has been developed by Dr George Jelinek.

Caroline comments that unfortunately it can be difficult to confirm Swank's research with large population based diet trials. She suggests that a Mediterranean type diet with high levels of antioxidants including monounsaturated and polyunsaturated fats, high fish consumption along with plant based omega 3s including walnuts and linseeds. She also suggests that high levels of vitamin and mineral supplements should be used with caution. They can be expensive, as well as unnecessary for many and can have unforseen impacts on the absorption of other nutrients and can interact with medications. Individuals with MS need to be cautious of restrictive diets which include entire food groups such as gluten or milk free diets. It's always best to check with a dietitian who has experience with diet and MS.

MS can also have nutritional consequences which can impact on the nutrition status of people with MS. Depending on the level of symptoms, energy intake may be affected leading to changes in weight, and one study found poor intake of a range of nutrients including zinc, iron, folate and vitamin D. MS can affect diet in numerous ways by impacting on people's ability to shop and prepare food. Fatigue can also mean a lower intake at meals, with a need for high energy snacks and drinks. MS can affect gut motility so people may suffer early satiety or fullness after a meal, and side effects such as reflux are common as is constipation due to reduced mobility and reduced volume of food.

Medication which are commonly used in MS may have side effects such as nausea, dry mouth and diarrhoea. Caroline suggests that it is important that people with MS or their carers should discuss side effects with pharmacist or GP. 

Source: ABC 666 Canberra  © 2007 ABC (04/06/07)