Well The New York Times has jumped onboard with a short series of articles written about multiple sclerosis by their very own "personal health columnist and science news reporter." Ms. Jane E. Brody writes weekly articles for NYT and is considered a leading authority on 'health & nutrition' and 'health & fitness' on the speaking circuit.
Last week I discussed Ms. Brody's first article discussing multiple sclerosis. This week, I'll discuss her latest article with bold emphasis mine. Excerpts from other websites are presented in italics.
"Some With MS Put Their Hopes in a Diet"
By JANE E. BRODY
Published: March 11, 2008
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.
not an endorsement...but definitely a plug for one particular book which was released in September 2007But 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.”
Nutrition and Diet - National Multiple Sclerosis Society
Maintenance of general good health is very important for persons with MS or any chronic disorder. A well-balanced and carefully planned diet will help to achieve this goal. MS specialists recommend that people with MS adhere to the same low-fat, high fiber diet that is recommended for the general population.
The Problem with Special DietsWhile many different diets have been proposed as a treatment, or even a cure, for the signs and symptoms of MS, evidence of effectiveness is very limited. There is some evidence that a diet low in saturated fats and supplemented by Omega 3 (from fatty fishes, cod-liver oil, or flaxseed oil) and Omega 6 (fatty acids from sunflower or safflower seed oil and possibly evening primrose oil) may have some benefit for people with MS.Most of the diets that have been touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results. Most of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment.
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.”
~33% patients carefully followed the diet and survived
~10% patients were 'poor dieters' and didn't survive?
~57% patients neither survived nor didn't survive?
“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.”
Same source and similar quotes to last week's article.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.”
But if there is a product (book) for sale, then somebody is be making money, but I have to disagree with Ann and Judi's "image of Multiple Sclerosis" which "is burned into all of our minds." Sounds like fear-mongering to me.
The image of Multiple Sclerosis is burned into all of our minds: a young adult in a wheelchair, facing an unrelenting loss of physical and mental functions. This does not have to happen!
Welcome to the MS world of Ann Sawyer and Judi Bachrach, where healing and optimism prevail and life can be lived to the fullest, unimpeded. Nine years ago, Ann was totally exhausted and her feet so numb that she could barely hobble about. Now, whether ramping up the treadmill or dancing at a wedding, she is full of energy and vitality. Luckily, she found a treatment approach that worked. Judi’s MS had progressed to the point where she had to spend most of her days in bed. A wheelchair was out of the question because her trunk muscles could not support her sitting up. Now, after 39 years of severe compromise, Judi is emerging into a full life once again, regaining her lost abilities and energy.
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.
To clarify, Patricia O'Looney, PhD, works for NMSS
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.
"These antibodies can then enter the brain...eventually causing death of the axons." This doesn't explain re-myelination.
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.
To clarify, Rosalind Kalb, PhD, works for NMSS
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.”
If any book should be recommended to someone with multiple sclerosis, it should be Rosalind Kalb's book. I have personally found it very useful and informative.
Multiple Sclerosis: The Questions You Have - The Answers You Need, 4th Edition (2008)
Rosalind C. Kalb, PhD
"The thoroughly revised and updated fourth edition of the classic Multiple Sclerosis: The Questions You Have, The Answers You Need continues to be the definitive guide for everyone concerned with this disease—those who have MS, those who share their lives with someone who has it, and all healthcare professionals involved with its management. It covers a wide range of topics in an accessible question and answer format that allows people to easily find the information they need.
Within each section, MS experts including neurologists, nurses, rehabilitation and mental health professionals, lawyers, and insurance and employment experts, answer the questions they have been asked most frequently over the course of their careers. Each chapter is designed to cover the full spectrum of the disease—from the time of diagnosis through the complex challenges that can arise if the disease progresses."