After recently reading the Diet and Nutrition booklet which was published by the UK MS Society in August 2016, I was unhappy with the some of the contents and as the MS Society invited “ideas or feedback about our information? We’d love to hear your thoughts “. I decided to give some feedback on the booklet.
What started out to be a few sentences ended up been much longer than I anticipated. I hope my comments do not offend anybody within the MS Society as I know there are a lot of very dedicated workers and volunteers working within the MS Society but as I feel the information is biased and potentially dangerous I felt had no option but to give my feedback.
My feedback comes in two parts, part one, the evidence that convinces me that a Swank Diet works and I speculate why this evidence is not contained in the booklet, the second part of the feedback is some quotations from the booklet and why I disagree with them.
While there are lots of good advice in the booklet, it’s my opinion that some of the advice is wrong and the booklet is biased against a Swank type diet.This bias I believe will needlessly sentence some people with MS to entirely avoidable disability, wheelchair use and early death.
The booklet claims to examine the evidence for several different diets for people with MS. I am not familiar with some of these diets so I will restrict my comments to what I would call a Swank type diet which is the most credible diet for MS, with the most studies and the longest track record of success for people with MS.
This publication is a missed opportunity to encourage people with MS to explore the evidence that a Swank type diet can help to stop or slow down the progression of MS, improve their general health and reduce fatigue. The Swank diet is a cost-free, negative side-effect free with a claimed success rate of 95% for those people who change their diet in the early stages of the disease. Why not encourage people with MS to switch to a low fat Swank type diet with safeguards in place, instead of the current situation where they begrudgingly give limited support to this type of diet and actively discourage people from making the change to a Swank type diet by exaggeration every possible negative issue, downplaying its positive results, even raising non-existent issues with the diet and publishing incorrect information about how the food you eat affects people with MS.
It appears to me that mainstream MS societies talk up the benefits of drugs and downplay the positive effects the Swank diet has on the health of people with MS.Dr Swank’s diet has been used successfully by thousands of people with MS for almost 70 years. During this time he published a number of papers. In 1990 he published a paper in the Lancet journal detailing disease progression for people with MS.
144 multiple sclerosis patients took a low-fat diet for 34 years. For each of three categories of neurological disability (minimum, moderate, severe) patients who adhered to the prescribed diet (≤20 g fat/day) showed significantly less deterioration and much lower death rates than did those who consumed more fat than prescribed (>20 g fat/day). The greatest benefit was seen in those with minimum disability at the start of the trial; in this group, when those who died from non-MS diseases were excluded from the analysis, 95% survived and remained physically active.
In the last few years, we are seeing more research saying how important diversity of bacteria in the gut is and how certain bacteria are associated with certain autoimmune diseases like MS.It appears that people who eat exclusively plant-based foods or mostly plant-based foods have the best type of bacteria in their gut.The gut contains approximately 70% of our immune system, it looks like Dr Swank had the right idea in 1949 when he proposed that people with MS should restrict the amount of saturated fat from animal sources.
There are several variations of the Swank diet currently being promoted and it has evolved as more research becomes available but the basics are the same eat as little saturated fat from animal sources as possible every day.
Below are some YouTube videos that give some background information on the Swank Diet.
See this video by Prof Jelinek on the Swank diet.
Here is a video of Dr Swank in 1990 with Dr McDougall outlining his research
Here is a video of Dr Roy Swank in 1989 on youtube.
Here is a comment on the video from a youtube user.
“This makes me very angry. I was diagnosed with MS in 2000 and this option of diet was not even mumbled in my presence. I went on copaxone in 2006 and went off of it in 2010. Trouble with affording the stuff. I had a whopper of an exacerbation this year. Lost my vision, my hearing and could hardly walk. It was terrifying to say the least. Since then I discovered Dr. Roy Swank and his work and have been a low fat vegan for the last six months. I began to see improvement almost immediately. I have my sight back as well and my hearing and walking is much much improved, almost normal. I haven’t felt this good in years. What makes me angry is all of this could have been avoided if the diet was held out to me in the beginning.”
Here is a presentation on nutrition that was given by Dr Conor Kerley at a conference organised by MS Ireland in 2016,.
I really like this presentation as is has a surprising twist to it towards the end of the video.
If you look at the what been happening over the last 70 years or so you have a group of people who have been successfully using and promoting a Swank type diet, a diet where you can buy all the foods for the diet in your local shop without any prescriptions or extra expense, these folk claim great results for the vast majority of users.Eating a Swank type diet does not stop you from taking MS drugs, but many people report great results from the diet alone.
On the other side, we have the Pharmaceutical industry who are only interested in profit and who as a group of industries have a very bad track record where truth, patient safety and honesty are concerned, see this Wiki Article on what the pharmaceutical companies get up to. Criminal Off-label promotion, failure to disclose safety data, paying kickbacks to physicians, making false and misleading statements concerning the safety of drugs.
Because natural healing methods like a Swank diet cannot be patented by them, the pharmaceutical industry has done its sinister best to confuse and distort and undermine any information reaching the public that might reduce drug sales and profits.
In partnership with the pharmaceutical sector, we have most of the established MS societies, governments, dietetic associations and the medical profession.The pharmaceutical industries have decided that it is in their shareholders best interests to give out lots of cash through various schemes to these partners, in return they can influence how the medical profession treats MS patients and influence what information the MS societies gives its members.Year after year billions is spent lobbying governments, media, doctors, consultants and any organizations that are willing to let themselves to be influenced to deliver the message and promote the agenda of the pharmaceutical companies.Researching and developing new drugs is very expensive yet pharmaceutical companies spend more on lobbying and advertising than they do on research.
The current drugs for MS are not very effective, on average they work for much less than 50% who take them, some drugs only work for as little as 5% of the people who take them. What this means in practice is that most people who take the MS drugs get no benefit from them, with many getting only harmful side effects.The side effects are so bad that some of the drugs have had to be removed from the marketplace because of the harm they were doing to the patients.
If you have any doubt about how effective the drugs are look up the manufacturer’s published data on NNT or number needed to treat for all the leading MS drugs, these numbers are so bad Pharmaceutical companies and most doctors and consultants don’t like to discuss them with the patients.
If you have not heard of NNT, it is a way of understanding how much modern medicine has to offer individual patients. It is a simple statistical concept called the “Number-Needed-to-Treat”, or for short the ‘NNT’. The NNT offers a measurement of the impact of a medicine or therapy by estimating the number of patients that need to be treated in order to have an impact on one person. The concept is statistical, but intuitive, for we know that not everyone is helped by a medicine or intervention — some benefit, some are harmed, and some are unaffected. The NNT is the average number of patients who need to be treated to prevent one additional bad outcome.
Some NNT’s for MS drugs the NNT may vary from study to study.
Avonex 7.7 , Betaseron 10.0, Copaxone 33.3, Rebif 9.1, Tysabri 8.4 ocrelizumab 20
It seems crazy that drugs that are ineffective for most of the people who take them could cost so much, but that is simply the truth. Most MS patients have not heard of NNT see this link for some information. http://www.thennt.com/thennt-explained/
The Cochrane Collaboration is an international not-for-profit organization that encourages informed decisions about healthcare and is designed to provide realistic expectations about what a drug might do for patients. According to their reviews, medications used for multiple sclerosis are mostly not very ineffective.
While MS patients may not know about NNT, they do know that when a person is diagnosed with MS that it is not good news, the reason it is not good news is that there are no effective drugs available for the treatment of MS.
Don’t think it is just MS drugs that are not very effective, see This Article in Nature “ Every day, millions of people are taking medications that will not help them. The top ten highest-grossing drugs in the United States help between 1 in 25 and 1 in 4 of the people who take them (see ‘Imprecision medicine’). For some drugs, such as statins — routinely used to lower cholesterol — as few as 1 in 50 may benefit.
If more people were aware of how useless some drugs that they take are then perhaps many people will stop taking them and perhaps switch to a lifestyle change like better food.
The pharmaceutical industry’s, doctors, surgeons, pharmacies, hospitals and the consultants, all would suffer financially if people followed Hippocrates advice “Let food be thy medicine and medicine be thy food”.There is a huge financial incentive to encourage people to eat and continue eating the wrong foods and continue to try and diagnose and fix the problems with scans, surgery and hi-tech drugs, drugs that ideally for them, you take for the rest of your life.
When a person with MS decides to follow a treatment they and their doctors must weigh the benefits of the treatment with the potentially harmful side effects. The Swank diet offers many benefits with little or no risk of harmful consequences.
Here is some information from a web site (Overcoming Multiple Sclerosis) that makes the case in favour of a Swank type diet better than I can. This site claims it is a completely independent and unbiased charitable organization ‒” we do not accept any financial or ‘in kind’ support from pharmaceutical or other 3rd party companies.”
“Several long-term studies show a close connection between saturated fats and the development and progression of MS. People with MS who avoid saturated fats (such as meat or dairy fat) but consume unsaturated fats (such as those from fish and flax) typically have reduced progression of the disease – and in many cases experience minimal effects from it.
The most important research on this topic is by Professor Roy Laver Swank, of the Swank Multiple Sclerosis Clinic in Portland, Oregon. He initially found that MS followed the consumption of saturated fat and was lower among people who ate fish (which is rich in omega-3 fats). This led to a compelling 34-year, 150-patient study that began in 1949. Published in The Lancet in 1990, it showed that people who adhered to a diet very low in saturated fats had dramatically better health outcomes than those who did not.”
Who Can you trust, look up any of the top MS drugs and you will find most if not all of them are made by companies that have a history of corporate fraud. And don’t think that the crimes that the pharmaceutical industry commits are always found out I suspect that they get away with much more fraud than they are actually caught for.
Here are some examples of Pharmaceutical companies who make top MS drugs and the fines they have paid for illegal activity.
The European Medicines Agency (EMA) has started an infringement procedure to against Roche for not properly reporting thousands of potential medication side effects; what EMA describes as “failure to comply with pharmacovigilance obligations” see Here
Federal Officials announced recently that Novartis Pharmaceuticals Corporation will have to pay a $422.5 million-dollar fine for advertising a medicine for epilepsy intended for inappropriate uses and for paying illegal fees to hospitals and private doctors to prescribe these medicines to their patients.Here
Novartis is fined $49 million for paying bribes as a result of bribing doctors from 2011 to 2016 Full story here
NEW YORK—The U.S. Justice Department fined Swiss drugmaker Novartis $390 million for granting kickbacks to pharmacies that recommended the company’s drugs, according to an agreement announced Friday. Full story here
Sanof Avonex (interferon beta-1a)
Slapped with €28M bribery fine for former German employees’ scheme
Teva fined $519 million by US government for foreign bribes
Copaxone (glatiramer acetate)Full story here
Lawsuit Filed by Shareholder Over Biogen Ignoring Safety Signals with
Tecifidera by Biogen Idec (who also manufactures Avonex and Tysabri)
Biogen’s Zinbryta multiple sclerosis drug has suffered a serious setback after European regulators restricted its use because of liver safety concerns.
I have yet to find a Pharmaceutical company that I can fully trust and typically you won’t find many details of the crooked behaviour of the Pharmaceutical companies on your favourite national registered charity website, nor will you find many negative comments about the price of drugs.These charities seem to have an over-optimistic view of the Pharma companies, lobbying the government to fast-track approval for the latest drugs , lobbying the government to approve drugs that don’t work very well, same thing happens with Cancer drugs money wasted on drugs that mostly don’t work while a simple change of diet can work better than drugs in many cases.
MS patients are encouraged to take MS drugs as early as possible.They are put on one drug for a number of months or years and monitored to see how they get on, if it appears to work, with side effects that can be tolerated they are left on the drug perhaps for life.If the patient is not happy on the drug or if the drug is recalled or gets some bad press they may be switched to a different drug, or perhaps the consultant or doctor has just been convinced by the Pharmaceutical company after coming back from some conference paid for by the drug company that the latest drug is so much better and it’s time for a change to the latest drug as perhaps the old drug is now generic and not as profitable as before.Patients can spend years been switched from one drug to another all the time not realising that the drugs for most people are not very effective and the Swank diet is rarely mentioned and often dismissed as a treatment.
So now that I have given you a flavour or the information that I think should have been included in the booklet about the Swank type diet I will give some examples of information in the booklet that I think needs to be changed.
Here are some quotes from this publication that I take issue with.
“Some people with MS say that following a specific diet has made a difference to how they feel. Perhaps they have less relapses or it improves their overall quality of life. But other people don’t feel this way, and there is little evidence that special diets are a good way to manage your MS”.
It is misleading to say that there is little evidence that special diets are a good way to manage your MS, not only do people manage MS with diet, a lot of people have totally stopped MS progressing with diet alone. Users of a Swank type diet would say that it has better results than the leading MS drugs.
“Aim for a healthy, balanced diet with a variety of different foods that contain the five major food groups: proteins, carbohydrates, fats, fibre, vitamins and minerals with enough fluids.”
“The NHS website has an ‘Eatwell plate’ – a diagram which shows the different portions recommended by the government to balance these food groups so that you get the nutrients you need. “
There are no studies that show that people with MS can safely eat all the same food as the general population eats, in fact, the general population in the UK and elsewhere who use the Eatwell plate are not doing great health-wise, with many people with common illnesses that are caused by the food they are eating, yet these same people are eating or feel they are eating by the guidelines outlined in the Eatwell plate.
The Eatwell plate and similar food pyramids are widely accepted as a compromise between the food industry interests and the public’s best interest. Referring people with MS to an Eatwell plate for guidance on what foods to eat may well be sending people with MS to avoidable disability, wheelchair use and early death.People with MS don’t need to be referred to compromised eating guidelines designed for the general public, these eating guidelines are not optimised for a tiny subset of people suffering from an autoimmune type disease.
Even the Eatwell plate website says “Anyone under medical supervision or with special dietary needs might want to check with their GP, or a registered dietitian, to be clear about whether or not the Eatwell Guide is suitable for them.” So to be referred to an Eatwell plate by an organisation that you trust for health advice may prove disastrous for you.
Healthy lifestyle choices and independent advice free from the influence of the food industry and the pharmaceutical companies are central to better health outcomes for everybody.
“What we know about diet in general shows that it’s important to get a balanced nutritional intake, instead of avoiding certain foods.”
This is simply not true, everybody is in favour of getting the correct nutritional intake, however, countless studies have been done that prove most of the world’s population are lactose intolerant so all those people should avoid dairy, as should people who suffer from MS as demonstrated by Dr Roy Swank. So avoiding dairy, gluten, processed meat or perhaps other food types can make life-saving changes to lots of people, so make sure you avoid certain foods particularly foods high in saturated fat if you have MS.
“When I heard diet could help with MS symptoms I assumed that this would be a ‘special’, unusual and probably expensive diet. But the reality was just to eat good nutritious food and include lots of vegetables. With this in mind, we get a weekly veg box delivered to make sure we have a supply of fresh produce to cook with. “
This excerpt is potentially very misleading, all of the diets that make credible claims for good outcomes for MS patients say that what you don’t eat is vital, it’s not as simple as getting a weekly veg box delivered and just continue to eat what you considered good nutritious food.The Swank diet and most other MS diets call for a super low-fat diet; Swank demonstrated that vast majority of MS patients who kept their saturated fat intake to 20 grammes or less a day no longer showed the expected disease progression.
According to Dr Swank’s research to give yourself the best chance of stopping MS the food you fuel your body with must be very low in saturated fat. This means eating lots of starches, vegetables, and fruits and most importantly avoiding all dairy products, meat, most processed foods and minimise the use of all cooking oils with perhaps the addition of some fish or flax seed.
“Eating is more than just something we need to do. It’s something to be enjoyed – it can be a fun social activity, a cultural experience and something to make you feel good. “
“Can you still enjoy your food? Food is about more than just making sure your body gets the nutrients it needs. Can you still eat your favourite foods while following the diet? If you enjoy eating meals with others – perhaps at home, in restaurants or at other people’s houses – will you still be able to do so?”
“Are you getting enough energy from the diet? If you have increased energy needs – for example, because of constant tremor or because you are underweight – then if you limit the kind of food you eat you may find you lose weight and become malnourished.”
MS is a disease with many debilitating side effects. Disease progression varies greatly from person to person and supporters of Swank type diets say for the majority of people with MS disease progression can be greatly slowed down or stopped if you change your diet.
So the suggestion that eating food should be something to be enjoyed, a fun social activity, a cultural experience, can you still eat your favourite food, can you enjoy eating with others in restaurants or in other people’s homes and food is much more than just making sure your body gets the nutrients it needs.This gives the impression that people who switch to a Swank or similar diet are most lightly to have a very negative experience with their diet, missing out on fun social activities, not able to enjoy eating meals with others and no longer able to eat their favourite food. This does not have to be the case and not changing your diet because you might miss your “favourite food” is very bad advice, as is focusing on the enjoyment of food that you eat. The most enjoyable and favourite foods people eat are usually processed foods that are carefully formulated with added fat, sugar, salt, oils, preservatives, colours, additives, etc. These foods are designed to be very tasty and addictive, often with misleading packaging or health claims so as the customer will keep buying the product, and it quickly becomes one of your favorite foods, so not been able to continue eating your favorite food on a diet that might just stop your MS progressing, should not be a reason to try a Swank type diet.
“Food is about more than just making sure your body gets the nutrients it needs”
If you have as serious illness such as MS and the balance of evidence suggest that if you avoid certain common foods (meat & dairy) and replace them with other common foods ( fruit, veg, starches, beans, fish) that you could stop or slow down the progression of MS as was demonstrated by Dr Swank, then it is a small price to pay to dramatically increase your odds of avoiding early death or disability and avoid other known illness associated the same foods. A lot of people have developed a culture of bad eating habits, let’s go and get some fast food after a night out, let’s barbeque some hotdogs and other processed food to celebrate the special occasion, so missing out on an unhealthy cultural experience or a fun social activity that could be promoting the progression of MS may actually be a good thing. Don’t use this as an excuse not to change your diet.
“Cutting down on meat and dairy products to reduce your saturated fat intake might mean you’re not getting enough protein, so you would need to find alternative sources such as fish, beans and pulses.”
Let’s not scare people from cutting down or eliminating meat or dairy as required on a Swank type diet by suggesting that they could be short of protein, Hospitals are full of sick people with a wide range of diseases, many of them related to poor dietary choices. I have yet to hear of anybody been in hospital suffering from a protein deficiency from eating a Swank diet or any other diet, however, some people are in hospital with anorexia which is a shortage of calories not a shortage of protein.
At our greatest rate of growth during our first four months of life, a baby doubles in size, the ideal food is breast milk, which has only 6% of its calories coming from protein. Contrast this level of protein with the protein in plants; rice has 8% of its calories from protein, potato 11%, porridge 11%, and beans 22%. When you eat enough calories from a whole food plant based diet, it is almost impossible to design a diet that would leave you deficient in protein and protein deficiency is not a problem with the general public.
“Ready meals can be a practical alternative. However, they can
be low in protein and high in salt so they may not be suitable
for every day. Choose ones labelled ‘low fat’ or ‘healthy eating’
unless you are underweight.”
Ready meals are the easy option in terms of convenience, but for your health and well-being, they are with very few exceptions not suitable for getting the correct nutrition your body needs.If an MS patient was to switch to ready made meals or continue regularly eating them on the advice of this publication because they were labelled “low fat “or “healthy eating” the consequences could be dire.Regularly eating ready meals, bought in your supermarket is almost certainly going to make things worse and the advice “Choose ones labelled ‘low fat’ or ‘healthy eating’ ” is just inviting trouble. For the UK MS Society to suggest to people with MS that ready made meals may be a practical alternative as long as they are labelled low fat or healthy eating is in my view irresponsible and demonstrates how little attention is placed on the correct nutrition required for MS patients by the UK MS Society. You really need to understand the labels on the food you are eating. The best advice is to ignore what is on the front of the packet and look carefully at the ingredients.
“Food allergy – we talk about food allergy when your immune system reacts to a certain types of foods such as shellfish or nuts and you start wheezing, itching and breaking out in a rash.”
Milk would rank above shellfish in food allergies, why not call out cow’s milk as a problem food as it one of the most problematic foods for people, milk ranks as the #1 self-reported food allergen and the majority of people in the world cannot fully digest milk due to lactose intolerance.
Most of the credible MS diets call for dairy to be eliminated from the diet.The big food lobby works hard to promote milk, it is marketed as a good source of calcium, however, the cultures throughout the world that don’t drink milk have much fewer bone diseases so drinking milk is not required for good bone health.
“This diet (Swank) can be low in energy, which may make you lose weight. If you have high energy needs or if you are already underweight then it may not be suitable for you
I would disagree with this statement there are many successful vegan athletes who have finished best in the world when eating a vegan diet, a diet that would also meet the Swank criteria for an MS patient and they certainly had high energy needs, to name a few. Martina Navratilova, Venus Williams, Serena Williams and Carl Lewis all who have met their energy needs on a diet that would comply with Swank’s key guidelines for a low saturated fat diet.
This bias against a Swank diet is not just restricted to one MS site I noticed another MS site ( mstrust.org.uk) asked the question “ Will the diet be worse than the symptoms that it might alleviate – for example, will it stop you eating all the foods you enjoy, or make going out for meals or eating with family or friends difficult?”
How could a Swank diet be worse than the symptoms of MS? Users of the Swank diet have demonstrated fantastic results with the reduction of symptoms of MS and they would be unlikely to welcome the return of the symptoms of MS for any reason,and to discourage people from trying a Swank diet by comparing the minor difficulties encountered when eating out with family or friends to the horrible difficulties from the side effects of MS makes no sense, there is no comparison between the two.
Ignorance Sickens and Kills People, if the UK’s largest MS Societies are not giving the best nutritional advice to its members, this misinformation may cause disastrous outcomes for some of it members, who perhaps would have changed their diet if they were made aware of the correct information. If multiple sclerosis symptoms can be often resolved by a Swank type diet then this information should be made clear to everybody and people should be encouraged and supported to change their diet.
People have choices in life and people make choices that suit them, smoking is bad for you yet people continue to smoke, but it took years before this was accepted by the medical profession mostly due to misinformation by the tobacco industry.I believe that the Swank type diet is the best diet for people with MS but due to misinformation, the medical profession does not fully endorse this protocol as a treatment with or without the use of drugs for people with MS.People with MS are free to eat whatever food they wish, but can the MS experts at least tell people with MS, that the balance of evidence says that claims of the Swank diet are most likely to be true and a properly thought out Swank diet is safe to eat and it will in most cases improve your health. So instead of discouraging people from making the change, can all the MS experts encourage people to at least consider trying the diet.
The Swank low-fat diet is not really a diet; it’s a lifestyle change and with the worldwide movement toward whole foods, plant-based eating, and a huge increase in people eating vegetarian and vegan, it’s now much easier to eat a Swank type diet at home or in restaurants.
I think the time has come for all MS societies to clearly communicate the proven benefits for MS patients of a Swank type diet to its members and to the staff who deal with the public, so as when members of the public ask about nutrition and MS they can get a balanced and accurate information rather than been told a Swank diet is a fad diet, which is what I was told some months back.
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