Diet
Numerous diets have been proposed to improve the outcome for people with MS, but unfortunately there is no conclusive evidence that any particular diet can do this. No one is able to say that if you follow a particular diet that in every case a certain outcome is guaranteed, whether that outcome might be prevention of MS developing in the first place, relief of symptoms, recovery from neurological damage, stabilisation of any further deterioration, or a cure.
This 2012 Cochrane review of the medical literature on dietary intervention in MS that met their standards for inclusion, notes that the only studies on dietary interventions for MS were for polyunsaturated fatty acids, and that there was no influence on outcomes (progression) and no firm conclusions could be drawn on their effect on relapse rate http://www.cochrane.org/CD004192/MS_dietary-interventions-as-complementary-therapies-for-multiple-sclerosis-ms
Anecdotes abound, but once again the confusing factor is that with relapsing remitting MS, the attacks are expected to get better to some extent anyway, and up to 20% of people with MS will have a benign course, with few or mainly minor exacerbations, and little evidence of disease activity within ten years of diagnosis. If someone follows a particular diet for MS and claims success, it is very difficult to unscramble what effect can be attributed to the dietary intervention and what can be attributed to the natural course of the disease.
A dietary intervention which claims to alter the course of MS implies that diet is somehow causal, but no one has been able thus far to prove any causal mechanism relating to diet, and no one claims a cure through diet. There is still no known cause or cure for MS.
Problems with claims that diet can help with MS
Establishing the promise: What precisely is the diet promising to do? Is it promising a cure, or something ill-defined like ‘recovery’ that could mean almost anything to anyone? Does it promise something that can be objectively measured? Does it offer something that can be independently verified, or is it based on anecdote and self-reporting? How can people objectively measure if the diet is ‘working’? Does it promise nothing very much at all?
Establishing a timeframe: How long does it take before benefits are supposed to accrue. Is it years? Why?
Replication and reliability: Can the diet produce the same results for everyone, or does it only ‘work’ for some?
Controlling for misdiagnosis, remission and benign MS: How do the proponents intend to test the efficacy of their diet and unscramble confusing factors like misdiagnoses, normal remissions, and benign MS? Are they following their dieters in any controlled, scientific way, if they are following them at all? Are their participants representative of the wider MS community or are they self-selecting in some way that may skew results? Is the sample size statistically large enough to draw meaningful conclusions?
Controlling for wishful thinking and denial: Many people with MS are understandably in a state of great fear and possibly denial. They want to believe that they are able to control their destiny, and some may have a fundamental objection to pharmaceutical intervention and a strong belief in natural or alternative therapies. Some may struggle to acknowledge increasing incapacity, or refuse to accept it at all. Some may enter an altered emotional state that may be influenced by the disease process itself, which one observer has described as ‘insouciance’. There is also a difference between participants and supporters. Any proponent for dietary interventions who is receiving feedback from participants needs to be aware of these factors and account for them.
Accounting for the effects of time: Most people with MS will develop a progressive form of the disease in due course, but many will have a benign course anyway, irrespective of any intervention. Any consideration of the efficacy of a dietary intervention needs to run for three decades at least, and account for the confusing effect of benign MS, since in the early days of MS, many people can remain relatively healthy, despite attacks. An optimistic or enthusiastic self-reporting of ‘results’ on a particular date, for a particular intervention in the early years of MS may be very different to the situation in ten years, or even six months later.
Are the proponents scientifically unbiased? To the extent that they are testing a hypothesis, are the proponents of a particular diet approaching the subject in a dispassionate, scientific way, or are they passionate about the subject, and looking for evidence in support of their claims?
Does it work for progressive MS? This is the acid test. Does it work for progressive MS, or does it only ‘work’ for the kind of MS that can get better by itself?
Conflicting advice: Another major problem with MS diets is that they often do not agree with each other, and sometimes they are diametrically opposed. If a proponent is selling a book based on their advice, then obviously it needs to differ substantially from other approaches. However, if one person is right about a particular diet, how can a substantially different diet also be right?
For example, George Jelinek emphasises a plant based diet that includes fish for animal protein and excludes other meat, but Terry Wahls (who was a vegetarian before she developed MS) includes the consumption of meat and emphasises this component to a certain extent.
This is not only confusing to people with MS, it is frightening. People want to do the best for themselves and their loved ones. With such conflicting advice competing for their attention, how do they choose a diet that will optimise their health options, particularly where another proponent claims that the very diet they have selected could be doing them harm?
The problem of scientifically testing diets: Other than the fact that there are likely to be all sorts of confounding factors that may not be controlled for (like medical interventions, smoking status, vitamin D status, medications, supplements, co-morbidities and so on), the main problems that seems to be acknowledged when it comes to testing the efficacy of a diet, is that it is difficult to randomise people to the good diet versus the control diet, it is hard to blind patients and researchers to which diet they are on, and it is really hard to keep enough people on the right diet for a long enough period of time and to ensure they really are complying with the requirements precisely. The first two aren’t such an issue. If diet really works, a person should be able to go on the diet and obtain the promised results. But this doesn’t seem to happen. The best that seems to be on offer is a long, difficult process with unreliable and ill-defined outcomes at the end.
The final two points are more problematic. It seems that people may have to adopt some pretty unusual and onerous dietary requirements to get any results, and they have to stick faithfully to these difficult requirements for the rest of their lives. Any therapy that is almost impossibly hard to adhere to in order to achieve some vaguely defined outcome some decades down the track, is almost not worth proposing, because it is just not practical for most people to adhere to it in the all or nothing way that some of these approaches demand. It is then all too easy to imply that people who do not respond to the diet have not been perfectly compliant with the arduous process, and much like physicians who cannot discern an underlying problem and then claim that symptoms are ‘all in the mind’, blame can be created and transferred to the patient, rather than to the difficulty of adhering to the ‘therapy’.
One of the most famous MS diets is the Roy Swank low fat diet. In the Swank study, the difference between ‘success’ and ‘failure’ was a relatively small amount of saturated fat consumption. If Swank’s study was correct (and he was not completely successful in stopping progression even with his most compliant participants), then even very small quantities of saturated fat in the diet can cause MS symptoms and drive progression in susceptible individuals. Instead of pursuing this relentlessly and insisting on finding the causative mechanism by which saturated fat is driving the MS disease process, people have focussed on the restrictive diet itself, whilst the rest of the world pursues drug therapies that have more to do with the autoimmune theory of MS than the consumption of saturated fat.
The most interesting point that arises from this is that the proponents of diet theory in MS don’t seem to be terribly interested in actually isolating the causative mechanism behind the diet, publicising their breakthrough results, addressing it directly with a more targeted and tolerable intervention, and saving the world from much misdirected time, money and research effort.
The author has viewed a summary of the Swank study which was reportedly originally published in the Lancet, involving 144 patients over 34 years. If up to 20% of people with MS are likely to have a benign course, then the expectation would be that 28.8 people from this group would have the lowest disability score at the end of the 34 years. The results showed that at the end of the study, exactly 29 people had the lowest disability score.
All of the people were on the diet but some were better at sticking to it than others, but the differences in saturated fat consumption (which must have been very hard to measure over 34 years) was apparently not great. A very small daily increase in saturated fat consumption appeared to be enough to tip people into poorer outcomes. There was no control group unfortunately, so there is no way of telling how 144 people with MS and 144 people without MS would have fared over the same time frame if they were not on the diet. The study was conducted by Swank himself, who understandably was a supporter of his own theory.
Dr John McDougall is something of an inheritor of Roy Swank’s work. His website can be found here https://www.drmcdougall.com/about/foundation/
This Forks Over Knives page http://www.forksoverknives.com/the-multiple-sclerosis-and-diet-saga/ features an article by Dr McDougall. He notes “People often ask me: Why are you spending $750,000 from the McDougall Research and Education Foundation to study the treatment of multiple sclerosis (MS) with your diet?”
“For me, stopping multiple sclerosis with the cost-free, side-effect-free McDougall Diet is equivalent to throwing the biggest rock I can find at the biggest picture window in town. The shatter will be heard around the world. If diet can effectively treat a disease as mysterious and deadly as MS, then diet has to be a medical miracle—and could easily be capable of bringing to an end diseases long accepted as due to diet, like type-2 diabetes, heart disease, and common cancers. A simple cure for MS would startle even the most unconscious medical doctors into awakening. Plus, I owe this study, and much more, to my mentor Roy Swank, MD for his friendship, guidance, and pioneering work.”
The study was published in 2014 and found that “the groups showed no significant changes in the number of active lesions… or other MR parameters, relapse rate, EDSS, T25W and FSS.”
http://www.neurology.org/content/82/10_Supplement/P6.152.short
The study was over a relatively short period of time and featured relatively small numbers of participants. The study’s authors noted these factors and indicated that further research may be warranted.
This article notes another 2014 study which showed “no relationship between eating a high-quality, healthy diet and a lower risk of getting MS.” http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/47667
In fact, the study showed that the only association of statistical significance was actually a reduced risk of MS for those who consumed a western diet (which is high in red meat, processed meats and low in unprocessed plant foods). However, the study’s author considered this a fluke as it only just reached statistical significance.
Data was taken from Nurses Health studies, with very large numbers of participants over a long period of time, so it is likely to provide reliable conclusions.
Another analysis of this study can be found here
http://www.multiplesclerosishub.com/conference-coverage/article/diet-is-not-linked-to-development-of-multiple-sclerosis/a0e96cc9c8db0d67107958b1a4ca9993.html
What MS groups say:
The author has not been able to locate any national MS societies who endorse any particular diet for MS, other than the same healthy, balanced diet that is recommended for the general population.
Every body is different:
One of the main problems with broad scale dietary advice is that every body is different. How can the person giving the advice in a book or on the web, know what the individual circumstances and dietary requirements of a particular person may be? They cannot.
They cannot know the age of the person, their dietary, genetic and nutritional history, the condition of their gastrointestinal tract, and any co-morbidities, medications, surgeries, deficiencies, addictions, previous illnesses or infections, or any number of other factors which may affect their nutritional status and dietary requirements.
In fact, some of the proponents of MS diets may show very little interest in this side of the equation. The assumption seems to be that everyone is pretty much the same, and that one size will fit all and it is just food that is the issue. This is surprising, because if one is to accept Swank’s theory that saturated fat is responsible for MS, one has to wonder why an entire population might be eating large quantities of fat, but only a tiny percentage of that same population will develop MS. The fascinating aspect is not that diet might help MS, but what physiological factors make it so in those individuals.
Logistical problems with dietary interventions:
Not only is every body different, everybody’s circumstances are different too. To participate in a particular diet plan, a person may need to overcome the habits of a lifetime, and to turn their domestic situation upside down. They will need to reorder their shopping list, pantry shelves, refrigerator, their recipes and their taste buds. In some cases, they will need to purchase specialised equipment. For people who are not used to thinking this way about food, they may need some assistance in making these changes and in learning how to read labels and to think carefully about every product that they purchase, making calculations and converting quantities to work out whether a particular foodstuff is permitted on a particular diet. Not every foodstuff is labelled, and people may have to do considerable independent research. Other barriers loom large.
Firstly, they must be able to find the time. Completely changing your dietary habits is a time consuming process. As noted above, refrigerator and pantry shelves must be cleared of offending foods. Recipes need to be researched for every meal of the day and snacks, with sufficient variety provided by the menus. Every label has to be checked, and unlabelled foods have to be evaluated. Lists of ‘safe’ foods have to be made. Menu plans have to be made up. Then the shopping has to be done and the food prepared and cooked. In cases where only one person in the family is on a restrictive diet, then two different types of food may have to be cooked at each mealtime.
Many able bodied people struggle to shop and prepare for healthy, varied meal plans. For someone with a debilitating neuromuscular disorder, this can be a significant barrier to following a particular diet.
Secondly, they must also be able to afford to follow the new diet. In many cases, eating in ways that are not consistent with the society around them, with an emphasis on particular types of meats, or fresh fruit and vegetables, perhaps with an organic emphasis and in larger quantities, or free of a particular ingredient, or low in sugar, salt and fat, or using an expensive substitute for a cheaper, forbidden food can all add up. Special equipment may also be needed to prepare some meals. All this may present an insurmountable barrier to someone who has a limited or non-existent capacity to work, or has competing priorities for limited funds, particularly someone who is burdened with unusual health and/or disability related expenses.
Barriers to following a restrictive diet – neurological incapacity:
People with MS can have balance issues, eye problems, pain, neuropathic pain, walking and standing problems, crushing fatigue, numbness and tingling in the hands and so on. Going on shopping trips and navigating a shopping centre whilst shopping for unusual food items can prove to be a herculean task. Preparing unique meals that do not involve convenience foods or convenience cooking methods can be dangerous due to the incapacity to feel properly and to carry heavy pots and pans, or hot pots and pans with contents that can spill, or sharp knives and other kitchen equipment. The sustained energy that is required to prepare and cook the food and to clean up afterwards, and the heat encountered in the kitchen may make this task impossible.
Another major barrier to shopping and meal preparation is paralysis. If a person is unable to move a limb, it is difficult to shop and to prepare food. The energy drain from these activities may be worse than any benefit obtained from the meal.
Some people are entirely dependent on others for shopping, meal preparation and service, and it may be extremely difficult for them to obtain the dedicated assistance they need to follow any unusual diet.
Choosing an ‘MS’ diet:
If these barriers can be overcome, the person with MS must select a diet. There are many. This site lists many online resources relating to MS diets and links to books that have been written on this topic
http://paleodiet.com/ms/
The weighing up of the different dietary arguments and theories is a task that is perhaps best done by independent experts. Many of these diets make reference to research, yet their findings and conclusions are often different. A poor outcome for anyone with MS would be to adopt a diet and then worry that it is the wrong one, or struggle with maintaining the diet and then either feel guilty about ‘cheating’ or that they are essentially driving their own exacerbations and progression because they ‘failed’ to follow the diet faithfully, or that they followed it carefully, but the diet still didn’t ‘work’ for them. This kind of pressure from following unproven diet theories is unhelpful.
Keeping a balanced outlook in using diet to optimise health outcomes:
From the author’s perspective, choosing a diet to follow with a view to optimising health outcomes should start with the individual.
Providing their existing diet is at least nutritionally adequate, the first consideration may be to check if their gastrointestinal tract is working properly. Are there any reasons why the food that they do eat is not being processed and absorbed properly? Once digested, are there any reasons why the nutrients are not being metabolised properly? Can any problems that are identified in this area be overcome?
Once it is established that everything is working properly, the diet can be optimised. The basic level should be a healthy, nutritious diet that provides sufficient of the necessary dietary elements to meet all nutrition requirements for the individual, without risking any illnesses that are known to be affected by diet. Dietary advice is bewildering, and seems to be changing all the time. A professional (where affordable and accessible) can help sort out the facts. The diet selected should be one that is within the person’s means, can be managed logistically and within any physical incapacities, and which the person can commit to as a lifelong practice. Perhaps a dietician or nutritionist is best placed to provide the latest research and optimise a diet that meets short, medium and long term goals for the person concerned. Advice can be given on correcting deficiencies, supplementation, enzymes, fibre, protein, fats, carbohydrates, salt and sugar content, essential elements that must be provided in the diet, quantities to be consumed and so on.
Once a basic healthy diet is established, people who wish to go further may establish whether they have any food related allergies, and cut out any foods to which they are found to be allergic. They may also look at the various ‘MS’ diets and choose to cut out any of those foodstuffs which a particular diet forbids. This may make things very difficult, but to cover all bases, taking an exclusionary approach (providing the diet is still nutritionally balanced) might make for the greatest peace of mind. Although, the dieter may be made uneasy in their mind by excluding something on the advice of one diet, when another says it is not an issue, or states that it absolutely must be consumed.
For example, some authorities implicate gluten in the development of MS, Others have implicated dairy. There are other foodstuffs that are warned against. There is no conclusive evidence yet for these recommendations, but that does not mean that it is not wise to exclude these and other food items that may provoke an allergic response. The disabling symptoms of MS are so horrendous that it is entirely understandable that a person would wish to take a precautionary approach.
Having optimised a diet that is individually tailored to their unique requirements, a person may have their plan monitored every so often by their dietary advisor, and further changes made as their individual circumstances require, or in response to new research.
If a particular diet is ever shown to conclusively have a role in modifying the disease course in MS, it will be front page news around the world, and people with MS will no doubt have the recommendations brought to their attention by their medical advisors.
Links:
Terry Wahls was suffering from progressive MS. She had been in a tilt recline wheelchair for some four years before she engineered a remarkable return of function. She discusses this process here, and notes how all the way through her illness she attempted to exercise, but continued to decline. It would seem that exercise is not productive in MS until the capacity to exercise is restored, and this appears to have a metabolic origin, not an entirely neurological one. It was not until she struck a particular dietary combination that her capacity to exercise returned. Her recovery also involved intensive exercise that initially began with functional electrical stimulation therapy http://180nutrition.com.au/2013/08/02/dr-terry-wahls/
Roger McDougall was wheelchair bound before he also engineered a remarkable return of function. He stated that it was four years before he could even fumble a button into its button hole. He used diet and supplements, but noted that his diet didn’t work for everyone. He theorised that this is because everyone is different, with different allergies and metabolic processes that need support in each case. He felt it was up to the individual to discover the allergies, deficiencies, or love of a particular food that is unhelpful to them. He too could not exercise until the capacity to exercise was restored, and in his case too, this appears to have had a metabolic origin, not an entirely neurological one. His story can be found here http://www.direct-ms.org/rogermcdougall.html
This fascinating 1966 paper looks at the possible biochemical basis for MS and has a partial critique of Swank's work. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1900742/pdf/procrsmed00185-0092.pdf
National Muliple Sclerosis Society comparison of diets proposed for MS http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Diet-and-Multiple-Sclerosis-Bhargava-06-26-15.pdf
Institute for Optimum Nutrition course on nutritional and biochemical support for MS (2015) http://www.ion.ac.uk/civicrm/event/info?reset=1&id=722
Comprehensive MS (Australia) page on diet and MS including a comparison of the most popular 'MS' diets http://www.ms.org.au/living-well-with-multiple-sclerosis/health-wellness/nutrition-eat-well-live-well.aspx
Stress management:
Numerous diets have been proposed to improve the outcome for people with MS, but unfortunately there is no conclusive evidence that any particular diet can do this. No one is able to say that if you follow a particular diet that in every case a certain outcome is guaranteed, whether that outcome might be prevention of MS developing in the first place, relief of symptoms, recovery from neurological damage, stabilisation of any further deterioration, or a cure.
This 2012 Cochrane review of the medical literature on dietary intervention in MS that met their standards for inclusion, notes that the only studies on dietary interventions for MS were for polyunsaturated fatty acids, and that there was no influence on outcomes (progression) and no firm conclusions could be drawn on their effect on relapse rate http://www.cochrane.org/CD004192/MS_dietary-interventions-as-complementary-therapies-for-multiple-sclerosis-ms
Anecdotes abound, but once again the confusing factor is that with relapsing remitting MS, the attacks are expected to get better to some extent anyway, and up to 20% of people with MS will have a benign course, with few or mainly minor exacerbations, and little evidence of disease activity within ten years of diagnosis. If someone follows a particular diet for MS and claims success, it is very difficult to unscramble what effect can be attributed to the dietary intervention and what can be attributed to the natural course of the disease.
A dietary intervention which claims to alter the course of MS implies that diet is somehow causal, but no one has been able thus far to prove any causal mechanism relating to diet, and no one claims a cure through diet. There is still no known cause or cure for MS.
Problems with claims that diet can help with MS
Establishing the promise: What precisely is the diet promising to do? Is it promising a cure, or something ill-defined like ‘recovery’ that could mean almost anything to anyone? Does it promise something that can be objectively measured? Does it offer something that can be independently verified, or is it based on anecdote and self-reporting? How can people objectively measure if the diet is ‘working’? Does it promise nothing very much at all?
Establishing a timeframe: How long does it take before benefits are supposed to accrue. Is it years? Why?
Replication and reliability: Can the diet produce the same results for everyone, or does it only ‘work’ for some?
Controlling for misdiagnosis, remission and benign MS: How do the proponents intend to test the efficacy of their diet and unscramble confusing factors like misdiagnoses, normal remissions, and benign MS? Are they following their dieters in any controlled, scientific way, if they are following them at all? Are their participants representative of the wider MS community or are they self-selecting in some way that may skew results? Is the sample size statistically large enough to draw meaningful conclusions?
Controlling for wishful thinking and denial: Many people with MS are understandably in a state of great fear and possibly denial. They want to believe that they are able to control their destiny, and some may have a fundamental objection to pharmaceutical intervention and a strong belief in natural or alternative therapies. Some may struggle to acknowledge increasing incapacity, or refuse to accept it at all. Some may enter an altered emotional state that may be influenced by the disease process itself, which one observer has described as ‘insouciance’. There is also a difference between participants and supporters. Any proponent for dietary interventions who is receiving feedback from participants needs to be aware of these factors and account for them.
Accounting for the effects of time: Most people with MS will develop a progressive form of the disease in due course, but many will have a benign course anyway, irrespective of any intervention. Any consideration of the efficacy of a dietary intervention needs to run for three decades at least, and account for the confusing effect of benign MS, since in the early days of MS, many people can remain relatively healthy, despite attacks. An optimistic or enthusiastic self-reporting of ‘results’ on a particular date, for a particular intervention in the early years of MS may be very different to the situation in ten years, or even six months later.
Are the proponents scientifically unbiased? To the extent that they are testing a hypothesis, are the proponents of a particular diet approaching the subject in a dispassionate, scientific way, or are they passionate about the subject, and looking for evidence in support of their claims?
Does it work for progressive MS? This is the acid test. Does it work for progressive MS, or does it only ‘work’ for the kind of MS that can get better by itself?
Conflicting advice: Another major problem with MS diets is that they often do not agree with each other, and sometimes they are diametrically opposed. If a proponent is selling a book based on their advice, then obviously it needs to differ substantially from other approaches. However, if one person is right about a particular diet, how can a substantially different diet also be right?
For example, George Jelinek emphasises a plant based diet that includes fish for animal protein and excludes other meat, but Terry Wahls (who was a vegetarian before she developed MS) includes the consumption of meat and emphasises this component to a certain extent.
This is not only confusing to people with MS, it is frightening. People want to do the best for themselves and their loved ones. With such conflicting advice competing for their attention, how do they choose a diet that will optimise their health options, particularly where another proponent claims that the very diet they have selected could be doing them harm?
The problem of scientifically testing diets: Other than the fact that there are likely to be all sorts of confounding factors that may not be controlled for (like medical interventions, smoking status, vitamin D status, medications, supplements, co-morbidities and so on), the main problems that seems to be acknowledged when it comes to testing the efficacy of a diet, is that it is difficult to randomise people to the good diet versus the control diet, it is hard to blind patients and researchers to which diet they are on, and it is really hard to keep enough people on the right diet for a long enough period of time and to ensure they really are complying with the requirements precisely. The first two aren’t such an issue. If diet really works, a person should be able to go on the diet and obtain the promised results. But this doesn’t seem to happen. The best that seems to be on offer is a long, difficult process with unreliable and ill-defined outcomes at the end.
The final two points are more problematic. It seems that people may have to adopt some pretty unusual and onerous dietary requirements to get any results, and they have to stick faithfully to these difficult requirements for the rest of their lives. Any therapy that is almost impossibly hard to adhere to in order to achieve some vaguely defined outcome some decades down the track, is almost not worth proposing, because it is just not practical for most people to adhere to it in the all or nothing way that some of these approaches demand. It is then all too easy to imply that people who do not respond to the diet have not been perfectly compliant with the arduous process, and much like physicians who cannot discern an underlying problem and then claim that symptoms are ‘all in the mind’, blame can be created and transferred to the patient, rather than to the difficulty of adhering to the ‘therapy’.
One of the most famous MS diets is the Roy Swank low fat diet. In the Swank study, the difference between ‘success’ and ‘failure’ was a relatively small amount of saturated fat consumption. If Swank’s study was correct (and he was not completely successful in stopping progression even with his most compliant participants), then even very small quantities of saturated fat in the diet can cause MS symptoms and drive progression in susceptible individuals. Instead of pursuing this relentlessly and insisting on finding the causative mechanism by which saturated fat is driving the MS disease process, people have focussed on the restrictive diet itself, whilst the rest of the world pursues drug therapies that have more to do with the autoimmune theory of MS than the consumption of saturated fat.
The most interesting point that arises from this is that the proponents of diet theory in MS don’t seem to be terribly interested in actually isolating the causative mechanism behind the diet, publicising their breakthrough results, addressing it directly with a more targeted and tolerable intervention, and saving the world from much misdirected time, money and research effort.
The author has viewed a summary of the Swank study which was reportedly originally published in the Lancet, involving 144 patients over 34 years. If up to 20% of people with MS are likely to have a benign course, then the expectation would be that 28.8 people from this group would have the lowest disability score at the end of the 34 years. The results showed that at the end of the study, exactly 29 people had the lowest disability score.
All of the people were on the diet but some were better at sticking to it than others, but the differences in saturated fat consumption (which must have been very hard to measure over 34 years) was apparently not great. A very small daily increase in saturated fat consumption appeared to be enough to tip people into poorer outcomes. There was no control group unfortunately, so there is no way of telling how 144 people with MS and 144 people without MS would have fared over the same time frame if they were not on the diet. The study was conducted by Swank himself, who understandably was a supporter of his own theory.
Dr John McDougall is something of an inheritor of Roy Swank’s work. His website can be found here https://www.drmcdougall.com/about/foundation/
This Forks Over Knives page http://www.forksoverknives.com/the-multiple-sclerosis-and-diet-saga/ features an article by Dr McDougall. He notes “People often ask me: Why are you spending $750,000 from the McDougall Research and Education Foundation to study the treatment of multiple sclerosis (MS) with your diet?”
“For me, stopping multiple sclerosis with the cost-free, side-effect-free McDougall Diet is equivalent to throwing the biggest rock I can find at the biggest picture window in town. The shatter will be heard around the world. If diet can effectively treat a disease as mysterious and deadly as MS, then diet has to be a medical miracle—and could easily be capable of bringing to an end diseases long accepted as due to diet, like type-2 diabetes, heart disease, and common cancers. A simple cure for MS would startle even the most unconscious medical doctors into awakening. Plus, I owe this study, and much more, to my mentor Roy Swank, MD for his friendship, guidance, and pioneering work.”
The study was published in 2014 and found that “the groups showed no significant changes in the number of active lesions… or other MR parameters, relapse rate, EDSS, T25W and FSS.”
http://www.neurology.org/content/82/10_Supplement/P6.152.short
The study was over a relatively short period of time and featured relatively small numbers of participants. The study’s authors noted these factors and indicated that further research may be warranted.
This article notes another 2014 study which showed “no relationship between eating a high-quality, healthy diet and a lower risk of getting MS.” http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/47667
In fact, the study showed that the only association of statistical significance was actually a reduced risk of MS for those who consumed a western diet (which is high in red meat, processed meats and low in unprocessed plant foods). However, the study’s author considered this a fluke as it only just reached statistical significance.
Data was taken from Nurses Health studies, with very large numbers of participants over a long period of time, so it is likely to provide reliable conclusions.
Another analysis of this study can be found here
http://www.multiplesclerosishub.com/conference-coverage/article/diet-is-not-linked-to-development-of-multiple-sclerosis/a0e96cc9c8db0d67107958b1a4ca9993.html
What MS groups say:
The author has not been able to locate any national MS societies who endorse any particular diet for MS, other than the same healthy, balanced diet that is recommended for the general population.
Every body is different:
One of the main problems with broad scale dietary advice is that every body is different. How can the person giving the advice in a book or on the web, know what the individual circumstances and dietary requirements of a particular person may be? They cannot.
They cannot know the age of the person, their dietary, genetic and nutritional history, the condition of their gastrointestinal tract, and any co-morbidities, medications, surgeries, deficiencies, addictions, previous illnesses or infections, or any number of other factors which may affect their nutritional status and dietary requirements.
In fact, some of the proponents of MS diets may show very little interest in this side of the equation. The assumption seems to be that everyone is pretty much the same, and that one size will fit all and it is just food that is the issue. This is surprising, because if one is to accept Swank’s theory that saturated fat is responsible for MS, one has to wonder why an entire population might be eating large quantities of fat, but only a tiny percentage of that same population will develop MS. The fascinating aspect is not that diet might help MS, but what physiological factors make it so in those individuals.
Logistical problems with dietary interventions:
Not only is every body different, everybody’s circumstances are different too. To participate in a particular diet plan, a person may need to overcome the habits of a lifetime, and to turn their domestic situation upside down. They will need to reorder their shopping list, pantry shelves, refrigerator, their recipes and their taste buds. In some cases, they will need to purchase specialised equipment. For people who are not used to thinking this way about food, they may need some assistance in making these changes and in learning how to read labels and to think carefully about every product that they purchase, making calculations and converting quantities to work out whether a particular foodstuff is permitted on a particular diet. Not every foodstuff is labelled, and people may have to do considerable independent research. Other barriers loom large.
Firstly, they must be able to find the time. Completely changing your dietary habits is a time consuming process. As noted above, refrigerator and pantry shelves must be cleared of offending foods. Recipes need to be researched for every meal of the day and snacks, with sufficient variety provided by the menus. Every label has to be checked, and unlabelled foods have to be evaluated. Lists of ‘safe’ foods have to be made. Menu plans have to be made up. Then the shopping has to be done and the food prepared and cooked. In cases where only one person in the family is on a restrictive diet, then two different types of food may have to be cooked at each mealtime.
Many able bodied people struggle to shop and prepare for healthy, varied meal plans. For someone with a debilitating neuromuscular disorder, this can be a significant barrier to following a particular diet.
Secondly, they must also be able to afford to follow the new diet. In many cases, eating in ways that are not consistent with the society around them, with an emphasis on particular types of meats, or fresh fruit and vegetables, perhaps with an organic emphasis and in larger quantities, or free of a particular ingredient, or low in sugar, salt and fat, or using an expensive substitute for a cheaper, forbidden food can all add up. Special equipment may also be needed to prepare some meals. All this may present an insurmountable barrier to someone who has a limited or non-existent capacity to work, or has competing priorities for limited funds, particularly someone who is burdened with unusual health and/or disability related expenses.
Barriers to following a restrictive diet – neurological incapacity:
People with MS can have balance issues, eye problems, pain, neuropathic pain, walking and standing problems, crushing fatigue, numbness and tingling in the hands and so on. Going on shopping trips and navigating a shopping centre whilst shopping for unusual food items can prove to be a herculean task. Preparing unique meals that do not involve convenience foods or convenience cooking methods can be dangerous due to the incapacity to feel properly and to carry heavy pots and pans, or hot pots and pans with contents that can spill, or sharp knives and other kitchen equipment. The sustained energy that is required to prepare and cook the food and to clean up afterwards, and the heat encountered in the kitchen may make this task impossible.
Another major barrier to shopping and meal preparation is paralysis. If a person is unable to move a limb, it is difficult to shop and to prepare food. The energy drain from these activities may be worse than any benefit obtained from the meal.
Some people are entirely dependent on others for shopping, meal preparation and service, and it may be extremely difficult for them to obtain the dedicated assistance they need to follow any unusual diet.
Choosing an ‘MS’ diet:
If these barriers can be overcome, the person with MS must select a diet. There are many. This site lists many online resources relating to MS diets and links to books that have been written on this topic
http://paleodiet.com/ms/
The weighing up of the different dietary arguments and theories is a task that is perhaps best done by independent experts. Many of these diets make reference to research, yet their findings and conclusions are often different. A poor outcome for anyone with MS would be to adopt a diet and then worry that it is the wrong one, or struggle with maintaining the diet and then either feel guilty about ‘cheating’ or that they are essentially driving their own exacerbations and progression because they ‘failed’ to follow the diet faithfully, or that they followed it carefully, but the diet still didn’t ‘work’ for them. This kind of pressure from following unproven diet theories is unhelpful.
Keeping a balanced outlook in using diet to optimise health outcomes:
From the author’s perspective, choosing a diet to follow with a view to optimising health outcomes should start with the individual.
Providing their existing diet is at least nutritionally adequate, the first consideration may be to check if their gastrointestinal tract is working properly. Are there any reasons why the food that they do eat is not being processed and absorbed properly? Once digested, are there any reasons why the nutrients are not being metabolised properly? Can any problems that are identified in this area be overcome?
Once it is established that everything is working properly, the diet can be optimised. The basic level should be a healthy, nutritious diet that provides sufficient of the necessary dietary elements to meet all nutrition requirements for the individual, without risking any illnesses that are known to be affected by diet. Dietary advice is bewildering, and seems to be changing all the time. A professional (where affordable and accessible) can help sort out the facts. The diet selected should be one that is within the person’s means, can be managed logistically and within any physical incapacities, and which the person can commit to as a lifelong practice. Perhaps a dietician or nutritionist is best placed to provide the latest research and optimise a diet that meets short, medium and long term goals for the person concerned. Advice can be given on correcting deficiencies, supplementation, enzymes, fibre, protein, fats, carbohydrates, salt and sugar content, essential elements that must be provided in the diet, quantities to be consumed and so on.
Once a basic healthy diet is established, people who wish to go further may establish whether they have any food related allergies, and cut out any foods to which they are found to be allergic. They may also look at the various ‘MS’ diets and choose to cut out any of those foodstuffs which a particular diet forbids. This may make things very difficult, but to cover all bases, taking an exclusionary approach (providing the diet is still nutritionally balanced) might make for the greatest peace of mind. Although, the dieter may be made uneasy in their mind by excluding something on the advice of one diet, when another says it is not an issue, or states that it absolutely must be consumed.
For example, some authorities implicate gluten in the development of MS, Others have implicated dairy. There are other foodstuffs that are warned against. There is no conclusive evidence yet for these recommendations, but that does not mean that it is not wise to exclude these and other food items that may provoke an allergic response. The disabling symptoms of MS are so horrendous that it is entirely understandable that a person would wish to take a precautionary approach.
Having optimised a diet that is individually tailored to their unique requirements, a person may have their plan monitored every so often by their dietary advisor, and further changes made as their individual circumstances require, or in response to new research.
If a particular diet is ever shown to conclusively have a role in modifying the disease course in MS, it will be front page news around the world, and people with MS will no doubt have the recommendations brought to their attention by their medical advisors.
Links:
Terry Wahls was suffering from progressive MS. She had been in a tilt recline wheelchair for some four years before she engineered a remarkable return of function. She discusses this process here, and notes how all the way through her illness she attempted to exercise, but continued to decline. It would seem that exercise is not productive in MS until the capacity to exercise is restored, and this appears to have a metabolic origin, not an entirely neurological one. It was not until she struck a particular dietary combination that her capacity to exercise returned. Her recovery also involved intensive exercise that initially began with functional electrical stimulation therapy http://180nutrition.com.au/2013/08/02/dr-terry-wahls/
Roger McDougall was wheelchair bound before he also engineered a remarkable return of function. He stated that it was four years before he could even fumble a button into its button hole. He used diet and supplements, but noted that his diet didn’t work for everyone. He theorised that this is because everyone is different, with different allergies and metabolic processes that need support in each case. He felt it was up to the individual to discover the allergies, deficiencies, or love of a particular food that is unhelpful to them. He too could not exercise until the capacity to exercise was restored, and in his case too, this appears to have had a metabolic origin, not an entirely neurological one. His story can be found here http://www.direct-ms.org/rogermcdougall.html
This fascinating 1966 paper looks at the possible biochemical basis for MS and has a partial critique of Swank's work. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1900742/pdf/procrsmed00185-0092.pdf
National Muliple Sclerosis Society comparison of diets proposed for MS http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Diet-and-Multiple-Sclerosis-Bhargava-06-26-15.pdf
Institute for Optimum Nutrition course on nutritional and biochemical support for MS (2015) http://www.ion.ac.uk/civicrm/event/info?reset=1&id=722
Comprehensive MS (Australia) page on diet and MS including a comparison of the most popular 'MS' diets http://www.ms.org.au/living-well-with-multiple-sclerosis/health-wellness/nutrition-eat-well-live-well.aspx
Stress management: