Wednesday, July 27, 2011

MS, Diet and Professor Jelinek

I have been meaning to write about MS diets for a while now, but have dillydallied thinking I need to do some research.  Then I had a flash of clarity... No need to overintellectualize.  I don't need to research because I am writing about my own experience – duh, am I writing a blog or what?  So please keep that in mind as you read on.

Even before I was officially diagnosed with MS, but after my GP had ever so quietly uttered the dreaded two letters - I had read a book about MS.  A good friend who had another friend with MS gave the book to me.  The friend with MS had read the book then unselfishly wanted to pass it on.  I didn't, instead deciding it was highly relevant and that I should keep it for future reference.

That book was "Taking Control of Multiple Sclerosis" by Professor George Jelinek MD.  It was published in 2000 - only a few years before I was diagnosed and it utterly and totally became my bible.

Sitting at the desk of my first neurologist, peering over at my notes as he turned his back, I saw it written I had read the book and had a good working knowledge of the disease.  I read the book because when I came home from my GP after he had mentioned MS, I scanned the internet for MS symptoms.  All the funny symptoms I had been experiencing, but didn’t know how to explain all had names.  I hoped and prayed I did not have MS, however deep down I knew MS was what I had.   Knowing about MS prior to being diagnosed helped me feel moderately in control of the big roller coaster ride of what was happening to me.

When I was diagnosed, I was all prepared and psyched-up to start medication - I braced for it.  I assumed I would be put on Interferons or Copolymer 1 (which is now known as Copaxone), both of which were relatively new and experimental.  There certainly was no research on their long-term effects on health.  That day wouldn't eventuate for another seven or so years.  My second neurologist wanted to see how my MS developed before putting me on these drugs... I trusted him, so I didn't insist I start medication.  I am glad I didn't as I had some of the most fruitful and fulfilling seven years of my life without having to inject myself daily and could sometimes forget that I had anything wrong with me at all.  I had no outwardly noticeable relapses or problems that could be linked to MS. 

While on the drug front I agreed to wait, Professor Jelinek made a very good case regarding saturated and unsaturated fats and the immune system.  He collected and collated data from bucket loads of research on the effects of fats in the diets of people with MS, including the research of Professor Swank.  As such I commenced my less than 5g of saturated fat a day diet/lifestyle, as per the diet followed by Professor Jelinek.

I remember eating my last juicy steak at a lovely restaurant.  It was raining outside, but the fire was warm and cosy and I was with my new-ish boyfriend (and future husband).  My steak was big, juicy and medium rare.  I grew up on a farm and ate home grown meat every day during my childhood.  I was concerned that I wouldn't be able to follow my new vegan plus fish diet, as it was so extreme. Surprisingly not eating meat was about the easiest thing I had to give up.  Warm creamy indulgent desserts were the hardest.  It was not an easy path to tread, however it again helped me feel in control of my life, which had been struck by this random, unforseen disease.

Here's a funny little titbit for you about canned tuna.  Professor Jelinek advocated eating oily fish for its omega 3 fat content.  It didn't matter whether the fish was fresh or canned, but for ease of use, especially at lunchtime, canned seemed the obvious choice.  However this posed just one small problem for me.  I abhorred canned fish of any kind.  It all seemed like stinky, mashed up cat food to me.  My husband trained me to eat it... I wasn’t happy about it, but no one I knew had died from ingesting it.  He put a little tuna in my sandwiches, which at first, would make me gag.  Eventually I could manage to scoff tuna patties, smoked salmon and tuna pizza with no issues, which was totally unfathomable pre-MS.  Now I love canned tuna - I can't imagine how I survived without it.

I kept up the strict less than 5g of saturated fat diet for approximately two years.  Sometimes it was a cinch; other times it was hell on earth for me and all those around me.  I had a notebook in which I added up the saturated fat of everything I ate after it had been carefully weighed or measured.  Eating out was incredibly difficult.  Most average restaurants only cater to vegetarians who eat dairy or have no problems eating deep fried food.  I can't even begin to recall how many squabbles my husband and I had over where to eat, the ingredients of dishes and whether it was worth discussing fat content with the server.  I lost a lot of weight, which for me was not a bad side effect!  However my mum thought I was starving myself silly and it didn’t seem to matter how often I explained it to her I could not change her mind. 

I started travelling after I was diagnosed with MS.  On my jaunts I discovered that being vegan plus fish was relatively easy in Canada.  Canadian restaurants seemed to cater to a diverse range of diets and there was an abundance of real vegetarian cafes, stores and restaurants.  There were whole sections in ordinary supermarkets devoted to vegetarian products.  I was also incredibly pleased to learn that hotdog stands in downtown Vancouver sold vegetarian hotdogs.  Clearly I was living in heaven on earth.  However I also discovered that travelling meant being exposed to a huge variety of new and exciting foods.  Sometimes it was very hard to pass up delicious looking foods that would have instantly voided my 5g of saturated fat per day in one mouthful.

My year in China was so much more difficult in so many ways - not least being that I didn't speak Mandarin!  Many Chinese are on the verge of being vegetarian, except for that little bit of meat tucked away under the cabbage.  Dishes like this were classed as vegetarian and our Chinese friends couldn't understand why I wouldn’t eat them, especially when they were so considerately chosen.  It may have been there in minuscule amounts – but it was still there in all its saturated fatty glory.  I also found the constant diet of "wet" food tough sometimes... but western food was hard to come by... so sometimes I just had to eat peanut butter on well-done toast to remember what crunchy was.  Don't get me wrong, authentic Chinese food is utterly amazing – it’s just impossible to record it’s fat content when you don’t really know what you are eating.

Slowly but surely over the years my less than 5g of saturated fat diet has fallen by the way side.  I have found it hard to stay focused on it when there is no in your face, hard evidence of it's ability to reduce relapses.  My neurologist advocates healthy eating, but not necessarily that of vegetarian persuasion.   I still do not eat red meat or chicken, but dairy crept in whilst I was pregnant with my son, mainly cheese, milk in my coffee and delectable desserts too!  My family eats what I do, otherwise I would be cooking at least two different meals every night.  I know it’s not peculiar to a vegetarian diet but my kids don't always love what I eat thus I make them something else.   My husband eats his red meat when he's away on business trips or for lunch at work.

Perhaps the final straw for me and the Professor Jelinek diet came about a year ago.  I was at my neurologist having a check up.  I had my list of questions, as per usual and at the end of those questions I alway ask after Professor Jelinek.  After all my neuro is a MS specialist and Professor Jelinek has MS and is in the medical profession and they both reside in the same city, so surely my neuro would know something about his wellbeing.  But this time my neuro seemed a little annoyed that I had asked after him - he asked me why I wanted to know.  I said something like... because if he is well then in my mind I can be well too.  Well let me tell you what I heard next rocked my world in all the wrong ways.  Professor George Jelinek did not satisfy all the clinical criteria to meet a diagnosis of MS.  Put simply, he does not have MS! 

Can you imagine how I felt?  Cheated, lied to, upset and really, really angry.  I believed in this man and what he was preaching.  I wondered how he could write a book about MS saying, oooooooo I am a doctor with MS - follow me.  How could he know what it was like if he didn't have to wake up every day with MS?

About a year has passed since I was given this news.  I am not angry any more and have ventured to the library to borrow Professor Jelinek’s new book.  I am reading it now.  It is called, "Overcoming Multiple Sclerosis" and was published in 2010.  Professor Jelinek fully owns up to not having any relapses in the ten years since writing his books, but he claims this is due to his diet and lifestyle choices.  He failed to mention not satisfying the clinical criteria of MS.  So maybe his lack of relapses is due to his diet or maybe it is due to a mild version of the disease or maybe it is due to him not actually having the disease.  I’ll leave this for your interpretation.

I do not feel like I am breaking any codes or am being overtly controversial because Professor Jelinek has written about being relapse free himself.  I am critically appraising Professor Jelinek’s assessment and am pointing out that the reason Professor Jelinek has been relapse free may be due to other reasons other than his diet.  Unfortunately some of us may read a book without being critical of it’s content - so I just want to highlight this point.  It's a tough diet/lifestyle and I think it's only fair that one evaluates why the author is relapse free before commencing it.

Although part of me wants to jump up and down and stamp my feet, I am again finding many good reasons to follow Professor Jelineks updated diet from his new book.  He has meta-analysed the fat research and come to the same conclusions as in his first book.  Saturated fat is bad for everyone, but especially for those of us with MS.  He still advocates a vegan plus fish diet for MS-ers.  I have already started to remove dairy from my diet again... it's hard because I love cheese but I keep in mind my responsibility to my family.  If a diet low in saturated fat can minimise the effects of MS… I would be stupid not to get on board because it is something that I can do without medical intervention, expense or side effects (other than weight loss!)

I have not yet finished Professor Jelinek’s new book.  Does it matter if he doesn't have MS?  I don’t know… my opinion and thoughts on the matter change regularly.  I don’t have anything to loose by reading his book, but hopefully I have a lot to gain by following his recommendations.  Fingers crossed.

To be continued...


  1. I live in Perth, and from a another post where you discuss your neuro, I am pretty sure we are seeing the same specialist. He told me the same, that he was Jelinek's neurologist, and never diagnosed him with MS. I have kept that in the back of my mind, but like you, I think the research he has reviewed and discussed has merit and weight behind it. If it means I have some control over what may happen in the future, I can't overlook it and I feel I owe it to myself and my family to make these changes.

  2. Hi Jane_Perth. Thanks for leaving a comment... sometimes I think I heard our neuro (Prof AK) wrongly, but since he told you the same thing I guess I heard correctly! The research Jelinek has put together leaves little doubt in my mind and I have to follow it, because it has NO side effects and big rewards for people with MS. Do you follow the Jelinek diet Jane?

  3. Yes Prof AK is my neurologist too :o) I have chosen to follow the diet, but a hybrid between Jelinek and Swank (I hate fish and physically find it difficult to keep down, so I eat skinless chicken breast twice a week for some variety). I have optic neuritis and am currently in the process of screening for clinical MS. I had to make a decision on whether I follow the diet now even though I may never be clinically diagnosed, or wait (up to 15 years) to see what happens. I chose to change my life now, as something caused this episode to happen, and I never want optic neuritis again. And as you said, there are no side effects (except for weight loss which I am enjoying) and I feel so much better. And I feel like I am doing something, and as I like to fix things this works for me. I just wish our neurologist was less cynical of the diet, but I respect him unbelievably, and as a researcher myself I agree to disagree with him.

  4. Interesting discussion..... A friend of mine once warned me that if I stayed well long enough, people would say I didn't have the disease. I would like to reassure you (if this is a reassuring thing!) that I was diagnosed with clinically definite MS in 1999 after my second MRI in November 1999 (eight months after the first attack and MRI) which showed a new MRI lesion, satisfying the McDonald Criteria for MS. I am disappointed that the neurologist would now be discussing my medical history with other patients, but at least this can be put to rest.

    1. Hi Professor. I wondered if you might weigh into this discussion at some point.... I hoped you would. I thank you for putting this point to rest for me. I am back referring to you as my guru (I'm not sure you would love this title), in the end I decided that it didn't matter to me whether you had MS or not, because what you did for me was put all the research in one convenient place and gave some personal control back to me.
      I am back following a low saturated fat, healthy diet and lifestyle... recently encouraged also by attending some lectures by Don and his son Tyler, Tollman.
      I am both excited and horrified that you have visited my blog and read what I have written about you... I am glad you have had a chance to defend yourself and I hope we will meet at an MS function or the like to discuss further.

    2. Prof. you were my one ray of hope in all the doom I read up on internet when i got diagnosed 3 years back. It helped me fight back to health. Now I have even forgotten about the health issue since I am doing so well.

      Lee-Anne, if you want a proof that the OMS diet works, count me in.


    3. Dharini, thanks for your comment. I have to say I was on board with the OMS diet over 10 years ago. It was the first book I read when I diagnosed. I lost my way a little during the years, but I am back on board, because you can not refute research. I now fully encompass a DEAL though - the diet, environment, attitude and lifestyle DEAL. Good luck Dharini.

  5. Hi Lee-Anne. I visited your blog here a couple of times after I posted and didn't see any response, so I was happy to see you got my comment in the end. More especially, I am happy that you are back doing the things that have been shown to help ( and have not lost hope in your future. Our results show that you have every reason to look forward to a healthy future. Tap me on the shoulder for a chat one day when we run into each other.....

    Be well


  6. can I ask how a dr. can reveal this information about Dr. Jelinek or any patient. Surely this is confidential information.

    1. I'm know right... maybe it is no longer considered confidential when it has been put out there in a book? I'm am quite sure Prof Jelinek knows my neuro and has probably mentioned what has happened. As you can see from the comments above Prof Jenlinek and I have had a small chat about this conversation and my post and I think we have sorted it out. When I get time, I will be updating on my journey on the Prof Jelinek diet. I cannot advocate it enough for people with MS.

  7. If Dr. AK was Prof J's neurologist, then he would be in serious breach of confidentiality laws. Glad it got cleared up, anyway. It's not just MS that benefits from vegan diet - if you look at the China study ( info below) you can see that it's ... probably just the way we should all be eating. I don't have MS ( I'm an MS Nurse) but I raise my family as much this way as I can, and we all enjoy our food! ( and good health.) All the best.
    The China Study (2005) is a book by T. Colin Campbell, Jacob Gould Schurman Professor Emeritus of Nutritional Biochemistry at Cornell University, and his son Thomas M. Campbell II, a physician. It examines the relationship between the consumption of animal products and a variety of chronic illnesses, such as coronary heart disease, diabetes, and cancers of the breast, prostate and bowel.[2] The book had sold 750,000 copies as of January 2013.[3] It is one of America's best-selling books about nutrition.[4]

    1. Hi Miranda

      Thanks for the comments. It was something that I felt really strongly about at the time, which is why I wrote about it. I didn't take publishing the info lightly and kept the it to myself for quite a long time. Anyways I am back on the Jelinek diet and I too believe we should all be eating vegan! The China Study has been on my reading list for a long long time. I have read excerpts here and there. I promise I will get to it soon. Thanks for reading.


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