No MS Diet Miracles for Me, Thank You

No MS Diet Miracles for Me, Thank You


I’ve spent a lot of time lately around people following special diets. They’re either voluntarily cutting carbs, counting calories, following a diet plan, or fasting, but not because they have a medical condition. Mostly they diet to feel better, lose some weight, or reset their metabolism. I wish them well, even as I wish they’d keep their diets to themselves.

MS is not cured by diet

One of the first things people assume when they discover I have MS is that my condition is somehow diet-related. Either food is the root cause of MS, or diet is its first-line treatment, or what one eats can cure MS. All this, despite the fact that MS is not a metabolic disorder. Even though it’s an immune system disorder, there’s little evidence supporting restrictive diets as a way to reverse its course. Eating healthy may relieve our symptoms, but let me be frank; this is not the same as a cure.

Poor diet doesn’t cause MS; healthy eating can’t prevent MS

At my initial post-diagnosis visit, I asked my neurologist whether I needed a special “MS diet.” She only recommended that I eat healthy foods and practice healthy habits (i.e., drinking lots of water and avoiding junk food). It’s common sense stuff, really, that I’ve done my whole life. I grew up on back-yard garden vegetables. I’m a gourmet home cook, and make most things from scratch, or as close to it as I can. I grow herbs right outside my kitchen window.

I had my food sensitivities tested. The nutritionist confirmed that, except for some cow’s milk items, I’m not allergic or sensitive to food. I was cleared to eat healthy whole foods. That included breads, lean meats, and other so-called “bad foods.”

Then I started Tecfidera, and I discovered what other Tec users found — that I needed to consume a high-fat, high-protein meal with each dose to tolerate it best.

Even now, if I just have a quick bowl of oats in the morning (rather than a couple of eggs,) I pay a price for it later with GI distress and something called “flushing,” which is when the capillaries beneath the skin flush with blood. Flushing gives me a bright red complexion that lasts up to 30 minutes, with tingling, itching sensations along the tops of my feet, around my eyes, and inside my ear canals. Needless to say, I don’t enjoy these adverse effects, so I make sure I eat a robust meal with each dose.

Food may be your enemy, but it’s not mine

Food has become the “enemy” for so many. For those who’ve confirmed (through lab analysis) certain allergies, celiac disease, diabetes, insulin resistance, and other metabolic problems, I offer my sympathies. But food is not my enemy. I will eat a banana, even though it has carbs, because it prevents muscle cramps. And the eggs I eat for breakfast aren’t the enemy; they help metabolize my medications so I literally don’t spend the day on the toilet.

My brain and I thank those carbs, eggs and other so-called “problem” foods (peanut butter and kefir have been saviors) for making it possible to live a normal life.

For some reason, everyone wants to put me on a diet — either some mythic MS “cure,” or the diet they’re on currently. If it makes them feel better, then certainly it also will make me feel better.

“Wait,” I want to tell them, “I’ve been in remission for years. I already do feel better.” 

No miracle diets for me, thanks

I recently lunched with friends. Our group was joined by a new acquaintance. When she learned I had MS, she immediately scorned my choices. “Coffee is giving you adrenal fatigue,” she said, “and everyone knows wheat belly saps your energy.”

What fatigues me is not the food I’m eating; it’s the effort and energy it takes to educate others. It’s one reason why I stopped being a teacher.

Politely, I asked her, “Do you have brain damage?”

She gave a disconcerted blink.

I explained. A healthy brain burns tons of glucose. MS causes brain damage. A damaged brain requires even more glucose to maintain function. When the glucose is spent, fatigue results.

“But your diet still makes you tired,” she defended.

“Do you see a nutritionist?” I asked.

She shook her head no.

“I suggest you take up your argument with mine, then,” I said. And I sipped my coffee, and buttered a roll to go with my vegetable chili. That’s all the glucose I was willing to spend.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

62 comments

  1. Alex says:

    it’s critical to remember that different things work for different people because everyone has a unique biochemical makeup. while you don’t believe diet works for you, it may work to help put other people’s MS in remission. the recent ACRIMS conference this past weekend dedicated considerable time to investigating the role of the microbiome on disease progression — gut bacteria seems to matter and it’s directly affected by the food we eat (among other things). while it might not matter for you, gut health matters for others. i don’t think everyone needs to prove each other right or wrong bc treatment is a deeply personal choice, not a one size fits all. thanks for your perspective.

    • Tamara Sellman says:

      I think if you read my commentary, you will see that I’m doing two things:

      1. I’m referring to people who DO NOT HAVE chronic illness, but who are promoting their own voluntary fad diet as a cure for my MS
      2. I’m basically saying that eating healthy makes everybody feel better (whether you have MS or not). But eating better to give yourself relief from some symptoms is not the same thing as a cure

      I would add that there is no scientific evidence that any particular diet for a person with MS will result in a cure; I would cast doubt on your assumption that special diets can even put MSers in remission.

      As a professional health educator, I am aware of both the ACTRIMS conference study and the advances being made in microbiome research, but until there are solid results over the long-term, we cannot put the cart before the horse. This research is young and needs time to prove itself out.

      Of course, it goes without saying that different things work for different people. I also don’t feel like anyone should have to defend their decision to diet (or not) because I agree that it is a tremendously personal decision. But that’s not how it happens in the real world. Having MS can make many of us the unwitting target of (well meaning?) healthy people.

      My commentary is in response to repeated efforts on people who are not doctors, nor do they suffer from chronic illness, forcing some regimen on others.

      These same people may, in fact, be doing damage to their health by following these diets blind. This is my nutritionist’s attitude about most low-carb diets, for instance.

      Sure, many people in our society eat way too many sugary foods (I am happy to report I have never been one of them). This does not mean that they will do better by casting aspersions on ALL carbs. Oatmeal, for instance, is an excellent whole grain food, providing fiber, vitamins, and minerals that contribute to overall health and wellness. People on low-carb diets, by eliminating an entire category from their diet, including oatmeal–and not just the obvious bad choices like cookies, soda, and doughnuts– may lose weight, but they may also miss out on the benefits of this very healthy food.

      My point is this: It’s, at the very least, bad manners for a casual acquaintance with zero health problems to make medical recommendations to someone who is chronically ill; at the very worst, this can be dangerous advice for those patients who do not have a full understanding of their disease course and cause.

      Many people with MS go on these restrictive diets because they are desperate and will opt for the magic bullet because they feel they have no other options. When it doesn’t work, they become more depressed and feel even more like a victim of their condition for having failed. That’s equally problematic, don’t you think?

        • Tamara Sellman says:

          Beth, first of all, THANK YOU for reading it! LOL, blogging is always a shot in the dark and we often don’t even know if people are reading what we write!

          I’m glad that, by speaking my mind, I am able to speak for yours, too. <3 That said, I don't mind critical comments and disagreements either because these are foundational to real human dialog, something to strive for constantly in the digital environs.

          Be well and keep up the fight against MS, however that looks like for you! Pax,

          Tamara

      • Elizabetta says:

        Hi Tamara. Well said! I just happened upon this; your attitude is refreshingly real. Yes, thank you eggs and butter and kefir and peanut butter-on-banana! Please keep writing.

    • Tamara Sellman says:

      Hi Kim
      Actually, I have. And my neurologist and nutritionist said there was no reason for me to go on either diet. I’ve been in remission for 4 years. Gofigger.
      Tamara

    • Eilis says:

      Jeez, Kim, did you really wish Tamara good luck, or was that schadenfreude?

      What made you think that Tamara had not heard of McDougall or Swank? Do we have to follow these diets once we have heard about them?

      I came off the Swank diet after a couple of years on it. It seems that to disagree with the Swank diet is to court trouble in the form of criticism. Have a look on Amazon at its cookbook review….people were not permitted to criticise it (by an intense minority). This minority had not purchased anything else on Amazon before, but felt it necessary to tell everyone who didn’t like the book how wrong they were.

      Interestingly, OMS meetings cost about £90-£100 to attend…the very first thing that was said to me at the meeting I attended was from an OMS rep., who told me how many people were running half/marathons to raise money for OMS.

      Is that really a good thing to do with MS? Where’s all the money going i.e. the meetings clearly pay for themselves?

      For any organisation that people follow or sponsor, the first thing they should do is look at the annual report; it makes for interesting reading.

      Take care (sincerely meant)

  2. Susan says:

    There is evidence supporting a restrictive diet for MS. The diet is the Swank MS Diet and was developed by Assoc. Professor in Harvard Neurology Dept. when he left to do clinical research for McGill Univ. in Montreal, CA. The results showed that the main thrust of the diet, reducing saturated fats to 15mg or less a day (and adding good fats in its place), could slow or halt the symptoms of MS. The study was stopped after five years because it was clear that it worked and did not need to be continued to prove it affects. Dr. Swank then worked in the clinical field of Neurology caring for MS patients for 30 years, following 3000 patients, and showed that patients following it can live a normal lifespan with mild or no disability. The diet does not reverse disability that occurred before the diet is begun.

    • Tamara Sellman says:

      Thanks for the info, though I’m not new to the idea of Swank (or any of the other diets). Besides having MS, I am a healthcare journalist, and have done my research.

      As for there being an official MS diet, I still can’t find anything truly endorsed by the NMSS. Despite what you’ve shared about Swank, let’s be fair: 5 years in one study that has not been replicated (except anecdotally, as far as I’m aware) is not enough to scientifically prove out a diet as effective in halting or slowing disease progression. As a healthcare journalist, I want to see the evidence, so until then, I’m going to remain skeptical. This is the only “position paper” I have on file that’s related to dietary recommendations from the NMSS:

      https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Momentum/momentum_fall08_msdiet.pdf

      Please remember that this post was not about MS diets as much as it was a post about healthy people burdening PWMS with their misinformed ideas about how to treat a disease they don’t even have.

      I actually discussed going on restrictive diets (including Swank, MacDougall, and Wahls) with both my neurologist and nutritionist (who are both part of my MS team). This was 4 years ago.

      Neither of them would recommended *anything* restrictive. In a Saturday brown-bag seminar for new patients, that position was echoed by them before the patients and their families after someone else raised the discussion.

      I suspect I was steered away from a restrictive diet because I’m already eating a diet low in saturated fat as well as the good fats (have done this my whole life). I’ve only needed to cut out a few choice cow’s milk products, but that’s because I have a slight milk allergy.

      It was their shared opinion that it was too restrictive a diet for someone with a milder case of RRMS (me). I do not have disability or issues with gait or ambulation; most of my problems are cognitive or otherwise “invisible.” From their perspective, they felt it would create more stress for the payoff than it would be worth. If I were “sicker” or progressing more quickly, maybe their advice would be different. Or maybe not.

      That is probably the bigger factor to weigh in all this: just how much will one gain from a restrictive diet? Will it be worth it?

      4 years later, I’m still in remission. (shrug)

  3. Eden says:

    Thank you Susan!!! Yes I definitely agree with you!! Swank diet is the best. Living a healthy for the most part normal life for ten years on swank diet. Also on colpaxion. I might have MS but it doesn’t own me. Please be as positive as much as you can. Thank goodness we live in 2017 where MS wasn’t what is was 30 years ago. Good luck everyone ?

    • Tamara Sellman says:

      I’m glad that it works for you, Eden.

      And thank goodness, indeed! MS has many better treatment options today than it did 30 years ago. It’s likely I had my first symptoms at age 10, which was in 1975. Back then, they didn’t even really have a name for it!

  4. Chris says:

    But why do healthy individuals, that have nothing better to do (or cook), insist that their tasteless meals would help with autoimmune?

    Do they promote their stuff to psoriasis or arthritics? To type 1 diabetic children?

    Why don’t they have the common sense to shut up?

    Why don’t they shame talk to very obese, sedentary, type 2 diabetic couch potatoes?

    PS: are these people the same that argue against insulin use, just because the “heard” it’s bad for hyperglycemic people?

    • Tamara Sellman says:

      Good question, Chris. The behavior’s not just directed toward people with autoimmune disorders, but to people living with all kinds of chronic illness, cancer, allergies. You name it. I know the same shame talk *DOES* happen to people who are obese or have type 2 diabetes. I think that for some people, it is their way of being helpful… it may make them feel better to believe they are helping. Others are just ignorant and were not taught good manners 🙂

  5. Julie says:

    Very helpful article. I too have MS and have been in remission for almost 7 years and am not on a special diet other than eating healthy. YES, regulating what you eat can help SOME people with their SYMPTOMS but it doesn’t cure MS and it doesn’t work (or need to work) for everyone. I find it amusing that people after reading this article take the time to explain to the writer that just b/c it doesn’t work for her doesn’t mean that it doesn’t work for others. YES, she knows that, this is what she is telling YOU! She doesn’t need your special MS diets and is asking you to respect her choices just like she respects yours. She knows her body best and it’s just plain rude to insert yourself into someones personal choices. Why is it so hard for people to give what they demand of others?

    • Tamara Sellman says:

      You’re a gem, Julie. Thanks for writing.

      I do think that, for some, eating healthy really has been such a lifesaver in terms of symptom relief that people can’t help but want to evangelize what has worked for them. I’m down with sharing that, but you’re question at the end is really spot on. I don’t think most people really enjoy getting unrequested advice or being told there is only one right way to do something, regardless the situation.

      Congrats on 7 years of remission! Here’s to at least 7 more!

      Tamara

    • Lorri Redmon says:

      Amen! We know our bodies and ability/willingness to stick to some of these very restrictive and difficult food regimes! Thank you Tamara for this article and saying what a lot of us are afraid to say “out there”.

      • Tamara Sellman says:

        Thanks for writing, Lorri. In general, I think many MS docs don’t subscribe to restrictive/difficult dietary regimens because they add a considerable layer of stress to one’s life… and stress is something people with MS are supposed to avoid, right?

        Best wishes,
        Tamara

  6. Gwen Hamer says:

    I was told by someone that the diet coke I was drinking probably cause my MS. Never mind that I didn’t taste diet coke until I was in my teens and MS is thought to be triggered by a virus or similar in childhood.

    • Tamara Sellman says:

      Hi Gwen
      I know, crazy, right? The urban legend/conspiracy theory part of diets and illness is an ongoing barrier, as so many people are still so gullible about what they read and hear. Diet Coke has been the cause of virtually every major health problem, if one were to believe the rumors. I was also told that it was not the DC in the US but the stuff manufactured in China! For these people (if they are strangers, anyway), I tend to politely thank them for their concern and let it drop. Some people aren’t interested in being educated and as a PWMS I only have so many spoons, as they say…
      Have a great day Gwen!
      Tamara

  7. Marianne Chumbris says:

    I feel the same way about the medication for MS. I opted not to take the medication. I’ve had MS for over 30 yrs…officially diagnosed in 1999! I eat healthy and feel healthier than I’ve ever felt! There are those people who claim that I’ve made the wrong choice.. I’ve had neurologists tell me I’m wasting their time because I chose not to take the drugs. If they ever come out with one that actually cures MS then I will consider it!

    • Tamara Sellman says:

      Thanks for your comment, Marianne.

      This is a really good point that supports the idea that what works for one might not work for another.

      One of my dearest friends is someone who was DXed with MS in the early 1980s (the days of “Diagnose, then Adios,” as the saying goes). She has gone on to become a wildcrafter and herbalist as well as a scratch cook. In addition, she’s a lightworker, clergy, and hospice/caregiver all rolled into one. She’s doing great, though I know she’s also experienced periods of fatigue. Whether that is due to her MS or to the challenges of her work, who can say?

      I would never tell her that she should take medications, and when I was diagnosed, she never once suggested I NOT take them (I use Tecfidera plus a cocktail of supplements that I worked out with my nutritionist).

      When she was DXed, they didn’t even really have anything to offer her, so of course, her path to wellness was one she worked very hard to carve out for herself.

      As for me, I’m a healthcare journalist and tend to cleave to science-based evidence because that is my nature. And that is working for me.

      We both have similar ideas about what constitutes healthy food, too, so we mostly follow a similar regime that’s consistent with whole foods, organic whenever possible, etc.

      I do also think that, because she’s an avid meditator, that has also served her supremely well.

      All this to say that each journey is unique and individual and that it would be more supportive for all of us with MS (or chronic illness in general) if we were to simply listen and choose without feeling pressure to do this or that or the other. There can be many different right approaches but they depend on us being intentional and open-minded.

      That’s unfortunate that you have neuros who would say that you are wasting their time. That’s hardly a best practice designated by the Hippocratic Oath… Although in their defense, they tend to want to pull out all the artillery because insurance demands proof of improved patient outcomes and using drugs is the easiest approach to achieve that. Doctors, these days, don’t really get a chance to practice medicine without insurance companies and Medicare second-guessing every decision they make. I worked in a healthcare setting for a couple of years recently and this was hugely evident.

      Anyway, good to hear you are doing well, Marianne, keep up the good work!

      Tamara

      • Diane says:

        Really enjoyed reading your article… Thank you! Would you mind sharing your “cocktail of supplements? “.
        Thank you!!

      • Tomikica says:

        Tamara I would love to speak with you. I’m switching to Tecfidera. I am also a healthcare professional. I just want to know what supplements you suggest.

        • Tamara Sellman says:

          thanks for writing, Tomikica
          Honestly, I am not able to really answer this question ethically as I’m not a physician. The supplements I take are ones I’ve done a lot of personal research on and they support more than just my MS, so I can’t really recommend something so personalized to someone else. I would advocate for using the book, Prescription for Nutritional Healing, as a foundational resource and following through from there. Also, visit a homeopath or naturopath; I have one on my team and they were very helpful for solutions that were customized to my concerns. Truthfully, what you will derive a benefit from is going to be totally different from what I derive a benefit from, and I may prefer a supplement that, while safe for me, has risk factors for you. Thanks for understanding. –Tamara

    • Mary Holmstrand says:

      Amen Marianne!! D.C. A year ago and I could not wrap my scientific clinician mind around these drugs that have no clearly defined mechanisms of action except to alter my defense system from doing their job!! I did try Copaxone for 1 month and it was the worst month since dx. So I stopped and continued my faith, healthy eating and fitness. I had sudden rt side paralysis from a tumerfactive MS lesion-large Like a tumor! But I had not been dx ever before and no symptoms. My gut instinct is to follow my plan. And I know it’s working because I get better every day and lesion smaller. Only time will tell but it’s a better quality of life than drugs and side effects. Every neurology doc practices fear mongering. They just don’t want to hear an alternative approach that can’t be cited in a research journal. Besides, they will discover in another 10 yrs this is pathogen triggered. I’m making my metabolic internal environment less pathogen inhabitable!!ll.

      • Tamara Sellman says:

        Hi Mary
        You wrote “Every neurology doc practices fear mongering. They just don’t want to hear an alternative approach that can’t be cited in a research journal.” Just wanted to say that this probably isn’t a fair statement, but more of a sweeping generalization. My MS specialist has a naturopath and a nutritionist on her team, and she has never said anything bad about diets, just that I probably didn’t need to go there. There probably not enough MS doctors out there who are comfortable in that in-between space, but they do exist.

        Tamara

  8. Nicci says:

    I and my mother have MS. I tried being on the Swank diet and got very depressed and lots of guilt feelings because I have had multiple relapses and it wasn’t working thought it must be me! However, my mother has had MS for 30 years, and her only treatment has been 5 lots of steroids. She eats lots of ‘all the wrong foods’ – if she had been on the OMS/Swank diets she would of said ‘see, the diet is stopping me from having bad relapses etc…’ however, she has just had a reasonably benign course to her disease anyway. Good luck to her! I have been on several medications, and I am more disabled in 2 years than she is in 30. I have been eating a very healthy diet, but I am no longer doing OMS as it upsets other problems. I also found it near impossible to be on with Tecfidera as far as symptoms go, I suffered a lot, unnecessarily. I mean if you want to and can do OMS and feel it helps, fine, but don’t make the rest of us feel guilty and like we ‘want’ to be really sick everyone is doing there best. The research is scant and poor about that diet, its not been rigorous academically. The pool of people from the lastest ‘research’ were all on the diet voluntarily. I think you would find that if you could ask every person who has MS if they had been on the diet and if it had helped them, you would find people with more active MS are no longer on it as they realise it doesn’t work, and people with more benign MS are on it because they think its the diet thats doing it for them. Who knows. We can only play poker with our own cards not everyone elses – and at the end of the day, nobody will ever know if their choices helped their MS or whether it was just how it was going to be.I thought this was a really well balanced article thanks.

    • Tamara Sellman says:

      Nicci
      I’m sorry your have two cases of MS in your family! At least you have a built-in support system with each other. And you understand, first hand, how each case is different. You make some great points here that underline the reality that there are so many factors that go into treatment for a snowflake disease like MS that it’s really useless to impose a one-size-fits-all approach. You are right, we can only play poker with our own cards. I appreciate your support and thanks for sharing your story. Good luck to you and your mother!

      Tamara

  9. Freya says:

    Thank you for this article, it expresses what I feel perfectly! I was diagnosed with RRMS and was instantly told by two neurologists that I didn’t need to follow any specific diet other than a healthy one. But the endless comments about diets that have helped others / I should follow from well meaning friends and strangers made me feel depressed and like I must have done something wrong up to now to trigger my MS. I too take Tecfidera and it is great to read your experience of having to eat decent meals with fats and proteins; precisely my experience! I’m happy that others have found diets that work for them but like you, I think the advice from non-MSers is unhelpful and maybe even damaging.

    • Tamara Sellman says:

      Freya,
      Thanks for your comment! We are not alone in this predicament, I see. Just… don’t be depressed about it. You can’t trigger MS by eating a certain food, regardless what people think. What we choose to eat can either make us feel worse (not the same as a flareup) or it can make us feel better (not the same as a cure). I find that when I eat Halloween candy I am pretty sorry about it the next day, so I don’t do that except at Halloween. And I find that when I eat lots of broccoli or oatmeal or nuts, I feel WAYYYY better… even more so if I drink all the water I’m supposed to. We all have foods that make us feel better or worse, and these are going to be different for every person. Like anything else, it’s about honoring what works for you, which would be simple if people didn’t try to disrupt that with their (usually) unrequested advice.

      I hope the Tec keeps treating you well! Best wishes,
      Tamara

  10. Stephen McChrystal says:

    This shows how we are all different. I have PPMS and do not appear to be affected by any sort of diet. I choose healthy low carb foods because it gives me control. But with my condition, I think I deserve to have whatever I feel like so bacon butties can sometimes enter the fold although the bread and brown sauce are both homemade. There is also the issue of weight gain. Being slimmer helps me feel better about myself. I think it’s important for everyone to talk or write about what makes them feel better. We need all the positives against this condition.

    • Tamara Sellman says:

      Thanks for writing Stephen.

      We need all the positives against this condition.

      EXACTLY. Which is hard to achieve when people seem to think one’s chronic illness is an invitation for them to give you their super special healthcare advice based entirely on nothing relevant to me. 😉

      Eating smart for overall good health is one of the best things we can do for ourselves, and as far as I know, that means using common sense, not extreme restrictions.

      Tonight, I am looking forward to a pot of navy beans and greens with pork knuckle and homemade cornbread. It’s much too cold this March for anything else, and I’ll go to bed feeling warm and cozy and cared for. I usually reserve this for when I’m sick (in the ordinary, colds-and-flu sense of the term). Yet I have survived this season thus far without any viruses, which is miraculous (knock on wood). So I’m going to do it for the sheer comfort and restoration.

      There are folks who would tell me this dinner menu is wrought with bad choices, all the same. I’ve got nothing for them except a bowl of goodness, as there are bound to be leftovers!

      Best,
      Tamara

  11. Kacie says:

    Amen to this: ‘The urban legend/conspiracy theory part of diets and illness is an ongoing barrier, as so many people are still so gullible about what they read and hear.’ I’m tired of defending myself against advise from people around me that are ‘trying to help’. Some of them seem to want to be ‘the one’ that finds a cure for me rather than really having the right intentions. One of the worst was a friend who kept badgering me to take ‘bee venom’ because she read it would cure M.S. No matter how many times I told her that I have a deadly allergy to bee venom, she persisted. I’ve also had people preach the McDougall diet and similar diets ad nauseum.

    • Tamara Sellman says:

      I wish there was more that could be done about it, Kacie. But I think it would require a huge systemic improvement in both media literacy and health literacy, and just where does one begin to do this, and how long will it take? It’s exhausting to think about how much work it would take to adequately educate so many, which is, I suppose, the reason why our jobs as PWMS really depend on us to educate those around us. Not that we don’t have enough to do already… but it does seem like people with chronic illness also have the additional burdens of practicing self advocacy to survive the system, as well as the task of enlightening others. But I hear you and hope I’ve empowered you in some way.

      Stay strong!
      Tamara

  12. BillD999 says:

    While I share your frustration with the smugness of some people who offer their unwelcome expertise on dietary matters, I have to say that your article is slightly tainted with what I call the smugness of those in remission. I am happy for you and hopefully your MS remains in remission, but if it doesn’t and you find yourself on Amazon looking at walkers (rollators?) your perspective may change on the issue of diet and you may find yourself more open minded.
    I know that you correctly pay lip service to the principle “what works for one might not work for another,” but you also seem dismissive of a dietary approach because it is not a “cure.” As you know that there is no cure for MS, all the available treatments are either disease modifying therapies or they treat symptoms. Should we be as dismissive of exercise, simply because it is not a “cure?”
    As a healthcare journalist, you should know the difficulty of designing and verifying clinical studies related to diet. This, in addition to the extreme variety of MS symptoms from one individual to another make it very difficult to determine scientifically one particular diet. And there may not be one. I think there is sufficient evidence that certain diets have helped some people to take it seriously. It may not work for everyone, just as medications do not work for everyone. But I would never advise someone not to take their med just because it didn’t work for me.
    Having said all that I should say that I have been impressed by Dr Wahls’ research and I have followed her diet fairly strictly for over a year and I believe it has helped slow the progression of my SPMS, although it is no cure and she does not present it as such. My neurologist supports me and is not at all dismissive of diet. His view is that more people might benefit from dietary and lifestyle change but most just don’t stick with them and find them too difficult.
    In this day and age we want a pill for everything that ails us, and food as medicine is slow, painstaking, with no guarantee of success.

    • Tamara Sellman says:

      Hi Bill

      Sorry you feel this way.

      Please keep in mind (and maybe reread the article to confirm) that my comments aren’t pointed at other people with MS, but at people without MS at all. That might help you better understand the point of the post. Sometimes you can read a headline and miscalculate the content. You seemed to have missed my main points.

      I’m sorry you have SPMS but please don’t level your anger at me for calling out others on this important subject. I’d invite you to hold your own POV in check. I’m fully aware that not everybody is in remission, and that some people have much more mild or more severe cases than I do. You seem to be pretty angry with me that I am in remission, and that isn’t exactly a healthy way to be part of a community where everyone’s case is so extremely different from the other. It’s not a competition to see who has it best or worst, after all. It’s not a competition at all, except for the race to remyelinate or otherwise halt this disease in its tracks.

      Also, please remember that I have RRMS. Because you and I have different kinds of MS, you may be comparing apples to oranges here. That’s like comparing a cyclist with a vanpool driver and saying they share the same road maintenance schedules. I’ve probably had MS for over 40 years, and I still have RRMS, so my prognosis is also going to be different from yours. It doesn’t make me a bad person. It just makes me different than you.

      If you read the article… my neuro and naturopath both agreed my diet at time of diagnosis was just fine. In fact, they are not “dismissive of diet” as you assume. I went to see a nutritionist who is part of my MS team. That is hardly being dismissive. They just felt that, in my particular case, it was not something to labor over because I was already doing my part.

      Finally, I have not advised anybody to NOT go on any diet in this piece. Did you read the article? I also do not advise for or against exercise, for or against DMDs. If you read my words as smug, I can’t help that, but I’ve hardly dismissed anybody or anything beyond the nonMS person foisting their dietary experiments unfairly my way.

      Yes, I am aware that there is very little research on diet and MS because it is absolutely impossible to get replicable results. This is why Wahls etc will never be more than an ongoing personal experiment for all who partake. Which is ironic, because many who choose to only use diet as treatment and eschew DMDs accuse those people of being guinea pigs. We’re all just guessing, truthfully. But science does have one benefit: it can show results over time. While diets leave us, really, with just anecdotes to support claims, medications at least have a track record in clinical research that’s objective and quantifiable. I wish we could do the same with nutrition supplements, frankly.

      Ultimately, my post comes down to this: When someone WITHOUT MS tries to shame me over a lunch choice at a social gathering, I’m going to call it out. And I’m going to write about it here because I am not alone in the dietary shaming of people with chronic illness.

      I remain firm that diets aren’t ever going to “cure” MS, nor is exercise. This presumes that MS is caused by some kind of lifestyle choice that we could have prevented. I know lifelong vegans who have MS, how can anybody explain that?

      Listen, we should all be ambassadors for the approaches that work for us, but that means also respecting a wide variety of approaches for easing symptoms. I advocate for doing what works for you, of course. But your mileage may vary. Diet (and exercise) will most certainly make some people feel much better, as well as medications. And as I’ve already said in my article, if that’s the case, then go for it! But don’t hold it over someone’s head if they aren’t urged in that direction. It might simply be due to the fact they are already eating right.

    • April Vazquez says:

      Thank you for your wonderful comment. Dr. Wahls, as you rightly point out, does not claim to be cured. But her diet is backed by solid science and has led to miraculous recovery for many people, including me. Swank followed his test subjects for DECADES and documented the vast reduction in their progression versus those following the standard American diet. The smugness and arrogance of this blogger–while arguing an untenable position, no less–are unbelievable, and reinforced by her nasty reply to your comment.

      • Michael says:

        I have been suffering from MS for 7 years and only recently found out that is what it was…I have been on the OMS diet for 1 year now and I only disagree with one part of your article. You seem to see diet results as only anecdotal in nature with no scientific backing in regard to its affect on MS. There are multiple studies as reported by responders to this article on humans and animals at Pubmed and the like. You do seem quite bias to diet changes as being anything other than common sense. Since you eat a healthy diet that may be the lions share of your success to your remission of this cursed disease. I do think that you fairly support the idea that what works for one may not for another. I also agree with you on bashing the non-sick guilt givers. When I started the OMS diet I could barely stand for more than a few minutes. I just came in from running uphill sprints a few minutes ago. I am not on nor have ever taken DMD’s But I will admit the OMS diet is a pain in the rear..but I love seafood so it’s not totally bad. I am now on the Coimbra Protocol + OMS and I would love to hear your comments about Coimbra.

        • Tamara Sellman says:

          Michael, I appreciate that you see I was taking issue with healthy people giving me advice about what to eat.

          Honestly, I don’t have opinions about these other protocols because, frankly, they aren’t on my radar. I write about a lot of research and ideas in health and they aren’t all limited to MS. If I seemed biased, well, that’s fine. Mine is a column, and columns are, by their very nature, subjective and editorial. MSNT grants me the write to publish opinion.

          I don’t follow a special diet because it’s obvious I don’t need one, but others might. I totally get it. New research on the gut biome suggests a connection, though we still need to learn a lot more before making huge changes to our eating. That’s not me talking, that’s scientific research talking. I’m thrilled they are getting closer to knowing more in this arena.

          To each their own! I may not speak for you, and that’s totally okay. MS is called a snowflake disease for a reason; it affects each of us very differently. That alone is reason enough for all of us to respect that we will make different choices. I’m happy you’ve found something that works for you, truly.

          Ah, running stairs! I used to hate them when I was a young woman on the track team, but I do them now and am grateful for it!

          Best of luck!

          Tamara

      • Tamara Sellman says:

        April, I am skeptical of what you call “solid science.” I work as a science writer and I have access to research that most people don’t. It helps to have health literacy, and most people who “buy in” to Wahls forget that real results require more than anecdotal “evidence.” What’s untenable are the Wahls research objectives; according to NMSS and other much larger resources, the Wahls Protocol is almost impossible to research in longitudinal studies, which means that it can’t be actually proven out without long-term data. I believe even Teri Wahls admits to this shortcoming. She is also in the business to sell books. She has a bias, too.

        But you need to reread the post: I was taking issue with healthy people giving me advice about what to eat. Did you not read the article? Not being smug or arrogant, just being REAL. You don’t have to agree with me, and I’m certainly not telling any other person with MS what to eat or do. PLEASE REREAD THE POST. I’m just stating my position (it is a *blog* column, after all, meant to be editorial).

        Tamara

  13. Christine says:

    Thank you Tamara for your post. I and many others that have MS have eaten a healthy diet and exercised all our lives. It makes me skeptical of these claims that unhealthy diets are the cause or perpetuate MS. If the general public listens to this they could easily conclude that all people with MS have poor diets and are couch potatoes and that we caused our MS by this unhealthy lifestyle. This is so so harmful to the MS community. People tend to blame themselves if the diet doesn’t work. Self blame can lead to serious depression.
    Please keep writing post with correct scientific facts.

  14. Rachael says:

    Thank you for this post, and the subsequent commentary. I am in turmoil. I was diagnosed last summer, my symptoms are still extremely mild, I have a balanced diet but tecfidera made me very ill. I have been contemplating not taking any meds and just modifying my diet to no dairy or red meat but my doc is not convinced and wants me to try another DMD. I have two young kids so I don’t want to be disabled in ten years but if diet amendment can save me from dmds… Can anyone advise?

    • Tamara Sellman says:

      Tecfidera is not for everybody. Though it works for me, I still have some of the side effects (though not in any extreme measure). Others I know have found it completely intolerable.

      Personally, my choice would be to stick to the meds (maybe not Tec, but another DMD), as they continue to show proof of halting or slowing progression/disability. Even if you aren’t feeling severe symptoms now, that doesn’t mean that a significant setback won’t happen. Not using the meds may open you up to flareups and brain damage that is irreversible.

      If you already have a balanced and healthy diet, I seriously doubt that cutting out red meat or dairy is going to prevent relapses… if that were the case, everybody would just cure their MS by doing this. But I know vegans and vegetarians who don’t use DMDs who relapse, sometimes severely.

      Only you can decide what is right for you, but with all the medications now available (such as Ocrevus, which wasn’t an option for me when I was dxed), it seems like you might benefit from trying a different medication. It can take 2, 3, 4 trials of different MS meds to find the one that suits you. It’s worth being patient and giving it a shot (my opinion) as you have 2 kids and really don’t want to develop disabilities if you can help it.

      Just one opinion.

  15. Hi Tamara,

    You make an excellent point about the etiquette of unsolicited and unqualified medical advice- no matter how well intended. It is especially rude when coming from acquaintances and strangers. Even worse when family and friends continue unabated- undeterred in repeatedly voicing their unsolicited and unqualified medical advice.

    Hmmm… sounds like me. Your article is a wake up call. For this, I thank you. I printed this article as a reminder to avoid the pitfalls of such uncivilized behavior.

    With that said, I am going to allow myself a hall-pass to comment on the diet portion of the discussion since you brought it up.

    Disclaimer: I do not have MS. A little over a year ago, I was 35 lbs overweight, pre-diabetic, and suffering from arthritis. I could not raise my left arm or run due to joint pain. I had recurrent UTIs and nail fungus. I also had digestive issues and frequent diarrhea. I do not have these issues at this date, and can show you medical records as well as before and after photos as verification.

    What we eat absolutely impacts our health. We do not need double-blinded, placebo controlled, peer-reviewed studies to know there is a diet connection to health. Nutrition is Health 101. I find it very irresponsible of you to claim there is no connection between managing MS and diet just because there have not been enough studies for you. I suspect that you love your bread, and will defend it to the death.

    There is enough scientific and anecdotal evidence to know that glucose intolerance can be mediated and possibly cured through diet. We also know that glucose intolerance leads to inflammation, and inflammation is very bad for the body. Hence, it would seem logical to reduce inflammation by encourage insulin sensitivity- not just in MS sufferers, but throughout the general population.

    Diet is critical to gut health. Gut health is important to nutrient absorption, waste elimination and immunity. You mentioned fiber, and I agree with on this. It is why I eat raw, whole vegetables to feed my flora.

    Let’s talk about flour. Flour is a highly processed food where the fiber is added back in. While it is calorie dense, it nutrient light. It also has a high glycemic load. While I believe it is the perfect food to store in preparation of zombie apocalypse, it is still calorie dense and nutrient light.

    Please keep in mind that gluten intolerance is not the only marker for wheat. Glycemic reactions and gut health are paramount. Loose stools (diarrhea) following consumption of flour products should raise eyebrows. Improved health following elimination of flour/grain products in individuals should be fodder for observational scientific studies. This seems fair given that the 7 County Study was based on fraud (omission).

    Let us please open up dialogue. It is an important conversation. Lets look as getting as much nutrition possible while avoiding anti-nutrients. What constituents and anti-nutrient varies from person-to-person, and again, with individual eating habits.

    I encourage you to encourage others with MS to figure out eating and lifestyle habits that are conducive for health. And recognize that EVERYTHING that you stick in your pie hole impacts your health.

    Common-sense 101.

  16. Erin says:

    Thank you for writing this, Tamara. Since my diagnosis last year, so many well-meaning people have offered advice and articles, dietary suggestions, quick fixes or basic information about MS and overall health. Answering them is exhausting. Most are coming from a place of concern, understandably wanting to help, but some people are aggressive and sanctimonious, thinking they have all the answers. I see some of that at work in responses posted here. Fortunately, I have just as many supporters who actually get it, and one of them sent a card before my last Ocrevus treatment that I think you’d appreciate. It said, “How about this: The next non-doctor who thinks they can cure you gets smothered with kale.” Yes, please.

    • Tamara Sellman says:

      Sorry to hear about your diagnosis, Erin. But so glad to hear you have a great support system. I love your friend’s kale card! Having a good sense of humor is everything, you go girl, hope the Ocrevus is serving you well!
      Tamara

    • L. jones says:

      Ooooo thank you so much for the laugh…I needed this so much today. The unsolicited dietary advice I got today….Oy vey….& why I felt the need to say anything about my choices that include DMD (Ocrevus)…. clearly I need pithy responses that I have at the ready!

      • Tamara Sellman says:

        Glad you got a chuckle, however unfortunate the situation 😉
        I’m not sure you need pithy responses… anymore, I find that just uses up too much energy and so I just try to ignore it, but the urge to push back is there, nonetheless. (Maybe that’s why I wrote this commentary in the first place… pent up angst over unsolicited advice from healthy people.) Good luck with your Ocrevus, I’ve heard good things!
        Tamara

  17. Kenny says:

    I think it’s important to note that as you said your symptoms are being caused by the medication you’re taking, for example you have to eat a high fat meal to be able to hold your meds down. There is substantial evidence that a whole food plant based diet cures MS, just need to do the reading. It’s a not some miracle diet, it eating real food, in its rawest state, it’s really nothing crazy. I have been doing it myself for about 5 months now and plan to come off my meds soon 🙂 I encourage everyone with this disease to do the research <3

    • Tamara Sellman says:

      Glad you are having that good luck with your diet, Kenny. You did not share what kind of MS you have, and for how long, and what your relapse rate is. So it’s really hard to say whether your diet has done anything else but make you feel better.

      Five months of a good diet is fantastic, I’ve lived on a whole foods plant-based diet for *53 years* and still have MS.

      I’ve been on Tec for 6 years and am relapse free. Eating eggs, or avocado, or nuts, or kefir/yogurt are part of the whole food plant based diet, no? (I do not eat large quantities of any kind of meat, never have.)

      A healthy diet is a boon for people who have eaten poorly and need to feel better, for sure. But I’ll continue to eat my high-fat nibbles with my meds because here’s the thing: I’ve been on Tec for 6 years and am relapse free.

      Diet is not a cure for MS. It is a means for symptom relief, and for some, that can be enough to live with the disease. For others, not so much.

      Yes, please do the research. Remember that what works for one person may not work for another. (That is the basis for this entire article… especially as it pertains to healthy people giving unsolicited advice to sick people.)

      And keep an open mind. It can be hard to do when you want so much for a cure to come in and wipe away this disease. As a medical writer/researcher myself, I have done plenty myself and there just isn’t adequate scientific evidence to support any of the dietary claims beyond symptom relief.

  18. Terry says:

    My husband was diagnosed with PPMS 10 years ago. He was an engineer, and tackled the diagnosis in a practical way, researching treatments and options that had worked for others. He never accepted that it is a disease without a cure. Despite going full-bore onto all the ‘miracle’ diets, and emptying our savings and going into debt for every latest ‘miracle’ cure, he is now in a power chair with severe physical challenges and cognitive changes. Every time someone mentions yet another plan that promises to cure ms, he wants to begin it: that’s what desperate people do. And the pushers of books, treatments and plans feed off (pun intended) that desperation. Thank you for your article.

    • Tamara Sellman says:

      Thank you for sharing your experiences and for your reading the article, Terry. So much of the need for relief drives this desperation, and the marketplace never fails to come up with new promises. You are a fantastic caregiver to advocate for him, please wish him well for all of us here at MSNT.
      Best,
      Tamara

  19. Kelan Galligan says:

    I can’t help but feel that this post is counterproductive to those who have MS. Although you haven’t directly encouraged other MSers to eat saturated fat-heavy foods, your attitude goes against research and studies, that HAVE shown a correlation between saturated fat consumption and disease progression. So glad Tecfidera has worked well for you but what about those who really don’t want to go down the DMD route. You have basically rubbished the only option they have left, and it’s an option that is consistently being proven to work for countless people. The reason there isn’t as much ‘evidence’ for things like the OMS program is that billions of dollars isn’t being pumped into the research, like it is being pumped into drug therapies. Pharmaceutical companies want people to take DMDs, but not out of any wish to make them better. The more ‘customers’ they have the better. Why tell someone that a whole food plant based diet can halt disease progression when you can charge thousands of dollars for a drug. It’s big business and a massively corrupt business at that. Check out the founder of INSYS Therapeutics. Wish you all the best for the future and long may you stay well.

    • Tamara Sellman says:

      I haven’t rubbished anything, I have shared a personal story in an editorial commentary about other nonmedical, healthy people presuming they have the right and the expertise to tell me how to treat my illness.

      I’m all for a whole foods diet, it’s what I eat. I do not eat a diet high in saturated fat, I eat a small serving of something that is high in fat and animal protein twice a day as part of taking Tec. That is a very different thing. What did you have for breakfast today? I had a bowl of oatmeal with blueberries, cinnamon and toasted Brazil nuts, with soymilk and a tall glass of kefir (high fat animal protein). For lunch, a veggie wrap. For a snack, an apple. For dinner I will have tacos made with lean pork (animal protein), onions, salsa, cilantro, and radishes. That is hardly a terrible diet.

      It is also my prerogative to treat my condition the way I see fit for myself, and after 6 years of using Tec, I’m still in remission and living a near-normal life without disability. Apparently, that works for me.

      If that doesn’t work for you, then you do your thing. I’m not trashing your choices, so I’d ask that you remember that every one of us is different and that, just because you disagree with my perspective, it doesn’t give you reason to trash my choices.

      I also don’t agree with your perspective about curative diets. For me, there isn’t enough science to support them, and this is due to the fact that there aren’t triple-blind, longitudinal studies because it’s been deemed unethical, almost impossible to keep subjects, and difficult and expensive to run. If you want to believe the conspiracy theories about Big Pharma keeping us sick, that’s your prerogative, but it’s not an idea I will ever support.

      A lot of diet acolytes will try to shame people who use DMDs and use these tactics, but I refuse to budge on the reality of scientific research, which even very recently called out the inconclusive nature of all the studies to date:
      https://www.acceleratedcure.org/sites/default/files/images/MS%20Diets%20-%20Is%20there%20enough%20evidence%20to%20recommend%20any%20of%20them_combined%20template%20v3.pdf

      From the link: “While many different dietary strategies are being promoted for people with MS, currently there is insufficient evidence to recommend any of them. Interestingly, despite their differences, these diets have several themes in common. Almost all advocate avoiding highly processed food, food that increases blood sugar levels and food that is high in saturated fat. Most diets also recommend reducing consumption of fatty red meat and increasing consumption of fruits and vegetables. It is important to consult with a doctor or nutritionist before making significant changes in the foods that you eat. One concern about adopting a specific diet is that it may be too restrictive, meaning a person may end up being deficient in important nutrients, causing more harm than good. More research surrounding dietary strategies in MS is needed to determine their benefit and risk. These studies are underway, an exciting development as diet is a factor that is easily controlled, giving people with MS some power over the disease.”–from the Accelerated Cure Project, FEBRUARY 2019, “MS Diets – Is there enough evidence to recommend any of them?”

      Tamara

Leave a Comment

Your email address will not be published. Required fields are marked *

Pin It on Pinterest

Share This