Tuesday, May 29, 2012

The critical part of the jigsaw of diet in MS is Professor Swank's work

By George Jelinek Friday, February 05, 2010

When people with multiple sclerosis ask their doctors about whether diet has a role in the management of MS, they are often told there is no evidence to support it. This is a remarkable statement. A comprehensive research effort from medical scientists for over half a century has produced good evidence supporting the role of diet in managing MS, from laboratory and animal research, human case reports, epidemiological, case-control, and uncontrolled intervention studies and finally randomized controlled trials. Interestingly there has been virtually no contradictory evidence published. There is insufficient room here to document all this research, but interested readers are directed to my book Overcoming Multiple Sclerosis, in which I outline all the major studies in the field.
The major contribution in my view is the seminal work of pioneer neurologist Dr Roy Swank. He initially made the observation that the incidence of MS seemed to follow the consumption of saturated fat, particularly dairy products, and was lower wherever fish consumption was high. Subsequently in 1949, he enrolled 150 MS patients in a meticulous 34 year study, managing these patients with a very low saturated fat diet. The study was supported by grants from the MS Society of Canada, the Montreal Neurological Instititute, the Department of Health and Welfare of Canada, the MS Society of Portland and other grants. 
The study was published in one of the world's premier medical journals, the Lancet in 1990. Of 144 patients, 72 stuck to the diet (good dieters), that is they consumed less than 20g/day of saturated fat. The results were dramatic. Regardless of level of disability at entry to the trial, good dieters did not deteriorate significantly. The results were best for those who started with minimum disability, with 95 per cent surviving and still physically active 34 years later, excluding those who died from non-MS diseases. The benefits occurred in all groups; even people with significant disability markedly slowed the progression of the disease if they stuck to the diet.
The picture for poor dieters was terrible, in line with results from other series of MS patients whose conditions have been monitored over time. Only 7 per cent of patients who did not stick to the diet remained active. The death rate amongst the poor dieters was extremely high. 58 of the 72 were dead by 34 years, 45 from MS-related causes. There was a dramatic fall in relapse rate after commencement of the diet, from around 1 relapse per year pre-diet to about 0.05 per year once stable on the diet.
So why do many doctors say there is no evidence for diet in MS in the face of the large body of literature, but particularly this remarkable piece of research? Many will say that Swank's study does not meet modern standards for what is considered evidence. But it is important to remember that in medicine there is actually no such thing as proof. We analyse data, trying to remove as many sources of bias as possible in the study design, then make inferences from the data. These days, for the highest form of medical evidence, we usually use a design where we randomly allocate patients to treatment groups, then apply a treatment with both patients and doctors being unaware of which group gets which particular treatment. Often one of the ‘treatments' is an inactive placebo. This study design is called a randomized controlled trial (RCT). But it is important to remember that there are many study designs apart from RCTs, and we often use other levels of evidence to make recommendations to patients.

2/ 6/10 4:12pm

Your review of Swank's work enhances Vicky's articles on shopping, cooking and eating healthy foods.  Thank you for your passionate reminder that there are other approaches besides medications to dealing with MS.   For many of us, though, the problems involved in shopping and cooking are sometimes insurmountable. Today, for example,  I have no appetite.  Even if I did, I don't seem to have the energy to even plan what to eat when I do get hungry.  If I need to read a book to eat better I probably won't do that now.  Vicky's articles are short enough to get through and comprehend.  I think it would be good if more clinics and support groups helped their members to eat and cook more sustainably for themselves and the planet.  

2/ 6/10 7:01pm

Thanks for your post. Yes it can be difficult to change the way we live; one of the great side effects of changing these habits though is that the energy gradually comes back, and the fatigue starts to dissipate, so the more you change (eating right, exercising), the easier it gets. It certainly would be good if more of the MS societies and clinics promoted this way of staying well, and some do (eg http://www.msakl.org.nz), but in the absence of that, I found that the only person who cared enough about my welfare to push these things hard was me!

Anonymous
linda roberts
2/ 7/10 12:21pm

Shortly after being Dx with M.S. in April 2008 my then G.P. gave me the option of Disease Modifying Drugs(DMD's), or do it myself and treat the symptoms as needed. I decided to take control myself and started to search the net for answers to my various symptoms.

                        This is how i came across The Swank Diet and gave it a go. After all I had nothing to loose. I had been retired from work as a Staff Nurse in a busy A&E dept as i could no longer cope mentally as well as physically and my parner had left when the symptoms became obvious to everyone  that there was something wrong with me.

                       I have now been on the Swank diet for 20 months. Slowly but surely my symptoms ( too numerous to list)! have all but subsided so much so that I do not walk like a drunk so don't need a stick and last Nov 2009 I completed a strenuos Trek  in the moutains in western India.

                        I have a very busy life.  I put it all down to the Swank Diet, looking after myself and staying positive. Sitting back and waiting for a cure is not an option for me. "Life is what is happening today whilst you are planning what to do tomorrow"

 

Linda Roberts   Bramhall   England

2/ 7/10 5:52pm

Good for you Linda. That is also the experience of the majority of the many, many hundreds of people who have come through the week-long live-in retreats I have run in Australia and New Zealand (http://www.takingcontrolofmultiplesclerosis.org/index.php?mode=retreats) for people with MS who want to take control of the illness. There is a strong science behind diet, vitamin D supplementation, omega 3 oils and exercise in MS, and it is good to finally see it being widely acknowledged (http://bit.ly/cpLqt).

2/ 2/11 7:30pm

Thank you Linda. I was diagnosed in 2007, and have been using a DMD, and my symptoms have not been external. Until the last year, i walk shorter distances, need a walking stick for balance and recently lost my balance at work. I work PT, have three boys (7,10,13). My husband still thinks I can "do it wall" like the way I was when he married me in 1991. But I have slowed down. My joints at by bottom hurt. I feel arthritic. My MRI on my brain showed no new lesions, but we are going to do a comparison MRI with my spinal cord. Everything about how I define myself is activity, standing tall and confident. But this is disease is scaring me. I loved reading about  MS A self Help Guide to its Management, by Judy Graham. She clearly supports the Swank diet. Especially, since he did a geographic research on diet consumption. That has to have a lot of truth to the MS population. Please provide me with any real cases. Thank you.

2/ 8/10 11:18am

Hi George:

Thank you for such a well-written article that explains the Swank research and results. I wasn't aware of all the results that you listed.

I have always been pretty healthy and active, and have paid more attention to diet since my diagnosis 7 years ago. I think my overall good health led to my relatively late diagnosis (at age 40), even though the MRIs showed numerous lesions and my dr believes I've had this for many more years.

A good diet hasn't "cured" my MS but I do believe it has contributed to my body's natural defenses to combat MS. I'm sure I'd be a lot worse off otherwise. And that would be the case with just about any other disease as well.

 

Lisa Emrich, Health Guide
2/ 8/10 2:50pm

Thank you for this post.  There is so much included that I have come back to read it a few times to digest my thoughts and questions.

 

I am unfamiliar with the entire history of Minot's study of the liver diet which led to B12 as a treatment for pernicious anemia.  Was it after postive results from the observational study that he sought to determine the "why" of how liver helped the patients?  Was it already known that liver is high in B12 and iron?

 

It seems logical to observe that something works and then search for the mechanism as to why and how it works, then to study whether it would work equally well for large populations.

 

I've also been reading up on the "Will Rogers' Phenomenon" as it applies to diagnostic criteria and categories of patients (whether in cancer trials or MS trials).  The diagnostic criteria was much different in 1950 than in 1983 or 2005. 

 

This hits home for me since my first unexplained symptoms (which I now believe were early MS symptoms) showed up in 1993 which is when I had the MRI to rule out brain tumor.  I experienced blinding optic neuritis in 2000 and had another MRI but no lesions were found, only inflammation of the optic nerve. 

 

I've wondered (looking back) if an MRI had been conducted on my spine at that time if I would have been diagnosed with possible MS then.  Knowing what I do now about the criteria then vs. now, I'd say no.  But if I had undergone more tests and used the current revised McDonald criteria, I'd say yes.  Especially since I still do not show brain lesions...only spinal lesions and several bouts of optic neuritis.  (although my cognitive skills have been affected as has too my mental health).

 

I started a detailed food journal 3 weeks ago, including fat, sat. fat, protein, carbs, fiber, sugar, etc.  I haven't really changed what I'm eating except I didn't indulge in as many brownies as I would have normally.  I'm surprised to discover that I'm really only averaging about 14g of saturated fat daily out of ~50g total fat daily (although it was hard to estimate the day I went to the Indian restaurant as those dishes are not included in my online database I'm using).

 

And yesterday, I ate sardines for the very first time in my life.  A bit "fishier" than I expected but not horrible.  :)

2/ 8/10 5:55pm

Hi Lisa

 

I read the Minot study in detail some years ago (easy to find in any medical library), and was interested to see just how things have changed. It would be completely dismissed today as quackery, almost certainly, yet won him the Nobel Prize for Medicine in 1934; and its dismissal would be wrong, based on whether it satisfies criteria for 'evidence', because he inadvertently found the cure for pernicious anaemia. I say inadvertently because he tried a chopped liver diet, thinking there would be something 'vital' for blood cells in liver. In fact he was right, the vital ingredient was B12 but that wasn't found out for quite a few years. Meantime, people with pernicious anaemia were all on chopped liver diets and stopped dying: it was now considered a treatable disease. If Swank had published his work say in the 1970s, everyone would have been on the diet, and arguably, people would have stopped deteriorating, and the research effort would have been to find out why it worked! The editorial in the Lancet that went with his paper actually stated that although the case wasn't definitely proven, it was likely that neurologists everywhere would put their patients on the diet, and the case then could never be proven, because everyone would be on the diet, and you wouldn't be able to find a control group. It was precisely that comment that stopped neurologists adopting it!

 

Now why it works is actually really interesting in the light of the CCSVI enthusiasm sweeping the world. I am discussing this issue currently with an Australian phlebologist who is setting up a clinic here to do the vascular dopplers and the surgery for CCSVI. He has a long term interest in the effect of saturated fat on venous vascular integrity; he pointed out to me the other day that if you look at the incidence of venous disease world wide it firstly parallels saturated fat consumption and secondly mirrors the distribution of incidence of MS. We know that unsaturated fats improve vascular integrity, as does vitamin D, so that may well be the mechanism behind MS, acting through keeping veins intact in the face of venous insufficiency and elevated venous pressure. Long way to go to definitively make that connection, but it wouldn't surprize to see Swank, an icon in academic neurology, ultimately vindicated. Like heart disease, there may ultimately be lifestyle and surgical approaches to the illness, with surgery a backstop if people can't change their diets, exercise habits, etc.

 

Good for you Lisa, in making some dietary changes, and in looking at this in detail personally. It's actually a lot harder than most people think spotting all the saturated fat in food: it's almost everywhere in the food chain now. A plant-based wholefood diet supplemented with fish is the simplest way to avoid it, although it still creeps in (most people would think of cakes or biscuits as 'vegan' for example, but in fact they contain loads of animal fat). Our experience through the retreats I run here is that if you adhere to this lifestyle, you have a very strong chance of recovery.

 

Be well

George 

Anonymous
J.A. Schmidt
2/18/10 3:55am

PPMS

 

George thanks this sounds like something I have been looking for.

 

After almost 1 year of testing, at the end of August 2005 I was given the Dx of Primary Progressive Multiple Sclerosis (PPMS). I was already into my 50's with a well establish career in corporate finance; a busy exercise routine starting at 6am 6 days a week with 1 hour of very strenuous Hydro-tone (water aerobics and strength training) followed by a ½ mile swim. I had maintained the same weight as I had when I graduated from high school. Unfortunately the MS causes my legs to give way and I fall. Not because I do not have the strength in my legs, but so the Drs have told me because the nerves do not always send continuous signals to my legs causing them to buckle under me. On a Sunday morning in August 2008 this happened when I stepped forward with my right foot landing in the bedroom closet on the floor. Because I have so little feeling in my feet, I walked around the house for3-4 hours before I told my husband I needed to go to the hospital.

 

The hospital sent me home and told me I must see an orthopedic surgeon the next day. I ask for a referral. They gave me the name and phone numbers for the chair of orthopedic surgery of the hospital. He was very angry with me because the ER doc told me I MUST see him on Monday and he does not do that type of surgery.

This is a very long frustrated rambling, most likely because PPMS is the ugly step-sister to Relapsing Remitting Multiple Sclerosis (RRMS). Because there was no drug-therapy or anything else anyone could suggest for helping with my MS, I immediately got into a double blind, phase III study testing one of the chemotherapy drugs. Like all the other studies this one also failed.

 

Since 2005 I have continued following any lead to something that would help with my MS. I would love to know if Dr. Swank had any PPMS patients in his study, and where I can find this information. I was a financial exec. who researched many things, but never in medical journals. So any help would be greatly appreciated.

 

2/18/10 4:28am

Hi

 

Thanks for getting in touch. Yes Swank did have people with progressive disease in his study, as did Catherine Kousmine, a Swiss doctor, who published her book in French entitled Multiple Sclerosis is Curable. Of the 55 people she treated with a regime very similar to Swank's, 20 had progressive forms of the disease, and did remarkably well. In our work at the Gawler Foundation, we have had several people with progressive disease who have stabilised the illness. I cover the detail of this a lot more in my book, Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery (http://www.readings.com.au/product/9781742371795/overcoming-multiple-sclerosis-an-evidence-based-guide-to-recovery). It is certainly possible to recover from progressive disease, and as you rightly point out, drugs aren't able to help.

 

Be well

George 

3/ 1/10 8:08am

Good Morning,

I was dx 2/12/10 with ms.  I have an appt with an ms specialist next week for a second oppinion and final dx.  My symptoms started the beginning of 2010 with vertigo, double vision, ringing in my ears, and fatigue.I had 5 days os solu-medrol iv infusion and I'm on my last week of the prednisone taper.  My symptoms went away, but I'm hearing the ringing again.  I've been researching ms since I was told they found "quite a few" lesions on my brain.  It looks as though I have had this for a long time.I've been trying to remember any instance I may have had symptoms, but not known it?Then I read the about Dr Swank and his research and it made sense to me.  Since the birth of my second son 11 years ago I've been  eating well and trying to stay away from a lot of fat.  I was also allergic to milk when I was young so I tend to use skim/1% milk in my coffee, but that's usually the extent of my dairy. I also try to exercise regularly. The last month or so in 2009 was stressful and my diet suffered.  I was drinking whole milk and eating anything from chips to frozen pizza etc.  The beginning of January was when the vertigo started...etc...  The more I read about the diet the more I think it will benefit me.I plan on discussing this with the ms specialist.I know there is a possiblilty that I will also be advised to take some sort of med like Rebif and that's ok.I'm assuming the diet won't effect the use of meds?I have 3 children 14,11, and 16 months old and I will do anything to suppress my ms for as long as I can.  My family thinks it's ironic that I'm the one who's been the most physically fit and I have MS.I'm going to do my best to remain symptom free.Dr Swank's research gives me hope.Thank you. 

3/ 1/10 8:32am

Hi Proby

Yes, the diet does offer a realistic chance of staying well. And it won't interfere with any medications you take. But you may find some resistance to the diet from your health professionals. I go into why this may happen more on my website http://www.takingcontrolofmultiplesclerosis.org and in my book Overcoming Multiple Sclerosis (http://overcomingmultiplesclerosis.org/book), and that might help you in making your decisions. There are many, many people following the dietary approach, in combination with keeping their vitamin D levels high and exercise, and for the most part, they report considerable benefits from this approach, and improved health.

Good luck with it all

Be well

George

 

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By George Jelinek— Last Modified: 10/26/11, First Published: 02/05/10