Can you change your lifestyle?

C

I don’t know much about diet and multiple sclerosis, so we got ProfB to blag his way into the Houses of Parliment for a multiple sclerosis meeting on lifestyle and diet

Chatting to the stars of the film can you guess who. It was the last time you will see that shirt

The building reeks of history and it was pleasure to attend says ProfB. It was rather funny watching the Extinction Rebellion movement polluting the planet with their motor boats going up and down the Thames followed closely by police boats. Surely they should have been rowing:-).

They were waving banners that essentially no-one was going to read. Without his glasses ProfB had no chance. I guess not many people in Parliment would be looking out of windows to read them either.. I guess the same is true for diet and life style, we all know it’s a good idea, like stopping climate change, but are we going to do it?

How do we get people to take notice? The extinction rebellion infiltrators in to the House of Commons, who stripped off and glued themselves to the House of Commons Gallery window got abit more attention. I guess it will haunt them for the rest of their lives.

However with that in mind, I won’t strip off and glue, but I will give my hosts a shout out.

ProfB actually met the the CEO of the Overcoming MS charity at ECTRIMS, hence the invite, Just like the passionate HSCTers, there are also people who are equally passionate about the benefits of a healthy lifestyle and diet. Notably the Jelenik Diet. Dr. Jelinek recommends cutting out all saturated fat, processed foods, eggs, dairy and meats. Professor Jelinek also advocates a healthy lifestyle including meditation and exercise, and omega-3 fatty acid supplements with 20-40mls of flaxseed oil or fish oil daily. Cocoa and wine are allowed. ProfG did the forward for the book and if you want to give it a read please contact the OMS team for a copy

The OSM guys had made a video (watch below) and can you spot which person ProfB was talking with in the picture above.

Their local member of Parliment hosted the events and it saw the launch of their video.

The OSM want to spread the word and hope that people engage as soon after diagnosis as possible. So I have been spreading.

I cannot say if it is worthwhile or not, because I do not have the knowledge or evidence. An also being dyslexic and trying to read for a living, reading books is a holiday treat. Maybe I will read it. If you have the time you may want to read it. You can get a free book.

Does it work?. I don’t know. I am sorry I don’t listen to blind faith on anything, even if the people I spoke to were convinced and were doing well. However, I am encouraged that the OSM people that I talked to were positive in trying to get that important trial evidence that will help convince me and others about its value. Would you be willing to do a trial?

As to the comment on the picture. I am not sure who was doing the catering. Was it the House of Commons Deliveroo as I think as I dont remember people eating with their tea and coffer. Alternatively was it something made especially for the occassion.

As profB was working up courage to talk to a well-known guest, he had a wrap thing. He’s not sure what it was, took a bite and it was filled with something fluffy and fluid and most of it ended up on his shirt. Therefore he rudely had to make a hasty retreat in the fear he was going to get tomato bits from a 10cm sploge over anyone we wanted to rub shoulders with. Shirt is ruined as the stain won’t come out….:-(

Can ProfB stick to a lifestyle change. ProfG has been practising what he preaches and has been seen modeling for a Lowry Picture….ProfMatchstick man

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MouseDoctor

33 comments

  • Very entertaining read! Even for me as a “passionate HSCT-er”! 😂

    We actually followed Jelinek’s diet for quite a while, and tried various other diets for MS, and while my husband did feel generally healthier on them, they didn’t do anything at all to halt his MS or even slow down progression – and we followed them meticulously for quite some time.

    Some people do swear it helps them, and maybe it does – but like anything else it isn’t going to work for everyone.

    Our first neurologist was adamant that diet did nothing to combat MS and advised my husband should just carry on as he always had done. However, he didn’t actually stop to find out what it was that his diet was. He could have been existing on a diet of burgers and fries. A healthy diet is important for everyone, and surely that’s the case even more so with someone with a chronic illness?

    Whether or not doctors choose to promote MS diets, they should be promoting good, balanced nutrition, I would have thought?

    We follow a low carb way of eating now, and combine it with intermittent fasting. Looking after yourself doesn’t stop at HSCT and we are very aware of that. Interestingly, our haematologist notes that those who really look after themselves after HSCT – good diet, disciplined exercise regime, seem to do better – he and my husband had an interesting conversation about that just last week.

    Our diet is a personal choice, but we feel good eating that way and get a lot of nutrients. Up to the individual at the end of the day.

  • At my last annual review Prof G recommended tbe Banting Diet to me. This is High Fat Low Carb. I must say it suits me very well! Having read this article I’m now a little confused that a very different, low fat, diet seems to be in favour!
    An explanation regarding the merits of each diet would be most welcome!

  • I’m all for the healthy lifestyle, but the OMS diet is not evidence based.

    One claim is that peptides in a protein in cow’s milk closely resemble a chain in Myelin Basic Protein. Kinda like glatiramer then??? Better not inject your milk! Honestly it’s there, if you’ve got the book look up the references.

    And that countries where cow’s milk consumed have high prevalence of MS. Like sub-saharan Africa???

    Apart from that, great book.

    Exercise ✔ tick
    Yoga ✔ tick
    Sleep ✔ tick
    Social capital ✔ tick
    Healthy diet ✔ tick
    Healthy weight ✔ tick

    Read it by all means, with a (very small) pinch of salt 🙂

  • I hate scare mongering about diet based on minimal evidence. I appreciate the book is free and they aren’t making money, but it is still cult-like. There is no convincing evidence that dairy is bad for us. In fact it’s definitely good for bone health. I think bone health is the main reason we are advised to take vit D, so campaigning to exclude dairy but take colossal amounts of vit D seems daft.

    There is a lot of chatter on here about social capital. Dairy is really good for social capital. Going for a pizza on a Friday night with my old school friends and having a chocolate biscuit and milky tea with my niece on this chilly Sunday morning, has made my week – much more so than getting lost in a snake oil programme.

  • As well as being on the Statin Clinical Trial, I am trying to follow the Terry Wahls diet. I am convinced that I am on the placebo in the clinical trial in addition to possibly not being on the diet for long enough, (6 weeks) because my condition has worsened over the last few weeks. My left leg is finding it very difficult to pick up, meaning that I now have to lift two legs as I descend from my mobility scooter! My right hand is also continuing to curl and lose a little more of its strength!
    However, my main concern is that I am under constant stress and anxiety due to the worry I face as my condition deteriorates and I believe that it is stress and anxiety that pushes my deterioration far more than any other factor.
    I was diagnosed with having had benign MS after 30 years of only two attacks of optic neuritis after a bad dose of glandular fever aged 17. Each of these attacks had occurred at very stressful times of my life and it is at times of stress that my MS seems to worsen.
    I am now in the secondary progressive stage and does it progress?! – No matter how hard I put up a fight. What frightens me, just as much, is that I am also ageing and at 66 feel that whatever comes on the market to help I will be bypassed because of my age. Quite sad and ever depressing however, I live in hope that you brilliant researchers will make it work eventually. For me and everyone else with this cruel disease.

  • I am totally committed to lifestyle options that I hope will benefit my general well being and my MS. I am persuaded of the likelihood of meaningful benefits.

    I am equally aware of A) not wanting to assume that what works for me will work for everyone else, especially as the weight of science isn’t there, or science isn’t in agreement about aspects of lifestyle such as diet B) not wanting to ignore the facts of MS and how it can advance and retreat over time for the majority of us with RRMS C) not wanting to see the application of lifestyle to PwMS to allow for apportioning of blame, either of oneself or from others.

    Unfortunately lifestyle isn’t a panacea – we are all susceptible to querying lifestyle when someone is diagnosed with cancer, Type2 or heart disease and yet can all identify someone we know who develops cancer despite being super healthy or who smokes and doesn’t die until theyre 93 years old. Or a family member in my case who is obese but hasn’t tested positive for Type2. Surely we can all agree, or accept we need to be aware, that it assists but isn’t a guarantee.

    • Ah thank you!
      Banting is suiting me very well. I find my energy levels are better and I’ve lost 11lbs in the 5 weeks I’ve been following the diet. I’d never heard of intermittent fasting until I commented to a few friends that I felt so satisfied on this diet I never felt like eating until lunchtime!
      Just as an aside – my food bills have not increased! But maybe that’s because I do like to cook!!

  • Crikey I’ve just watched the OMS video, kinda evangelical cult in the extreme! Eg:

    ‘I was bed bound with MS’ = I had a bad relapse
    ‘Then I read this book and started running’ = that’s called remission
    Lots of shots of parents with children = I’m young with RRMS
    ‘I don’t want to end up in a wheelchair’ = I’m young with RRMS (just for the record wheelchairs ain’t so bad y’know!)
    Loads more shots of same runner in OMS shirt. For info loads of pwMS still run, OMS shirt not required

    Look, I’m sure it’s fine if that’s what you want and you like having religious rules to follow (many people do)

    But I draw the line at OMS claiming charity status and asking for money to give away free books.

    In the UK give money to the MS Trust or MS Society, plenty of first class resources available, research and MS Nurses funded.

    Here’s the MS Trust info on various diets out there:

    https://www.mstrust.org.uk/life-ms/diet/types-diet#the-overcoming-ms-diet

    • I have never endorsed the OMS diet; there is no evidence that it works. In fact, there is no ‘MS Diet’. All we can talk about is the impact of diet on general health. My new motto is “Eat real food, eat local, eat seasonal, eat social and be mindful of the impact of your diet on others!”.

      • “…be mindful of the impact of your diet on others!”

        What about WHO and UN(among others) recommendation of plant based diet,as a mean to overcome not MS,but an ecological disaster,i.e.,impact our diet has on others(human,animal,plants,insects,forests,seas – life in all its manifestation)?

        We all should be plant based,not because of “vegan religion”,but because it is the only rational choice we can make. It is the proof that we are conscious beings,conscious of the destruction we brought to planet with our way of living.
        I know you all know this,but you are deep in habits,hedonism and weaknesses.

        Bon appetit,apocalypse apologists.

      • Sorry Prof G – you may be stating that you do not endorse the OMS diet, but that is not how OMS sees it. In the lead up to the publication of the 2016 2nd Edition of the OMS book by Jelinek the OMS organisation was broadcasting loudly in its publicity for the new edition of the OMS book that:
        “We are thrilled to have the support of one of the most influential MS researchers in the world for this new edition, Professor Gavin Giovannoni, MBBCh, PhD, FCP (S.A., Neurol.), FRCP, FRCPath, Chair of Neurology, Blizard Institute, Barts and The London School of Medicine and Dentistry. Professor Giovannoni writes: ‘I would have no hesitation in recommending Overcoming Multiple Sclerosis to my patients, but also to my friends and colleagues.’”

        In light of your known support for Prof Tim Noakes and the HF/HP/LC approach to diet, I queried this apparent endorsement of OMS right here on this blog on 19th April 2016 – asking whether you had made comments about OMS and the new book edition which were being “re-phrased” or taken out of context. Your response was “OMS is about wellness and a lifestyle and an approach to living with MS. My take on this is that he is offering a guide on how to live well, regardless of whether you have MS or not. I just wish I had his self-discipline. Please note he is not promoting his OMS programme in place of conventional MS treatments. Therefore we will continue to disagree on my approach to treating MS. The problem is that most readers assume his OMS is a treatment for MS when it is not. For OMS to be a treatment for MS he would need to do a randomised controlled trial and get it licensed via the regulators.”
        https://multiple-sclerosis-research.org/2016/04/unrelated-blogger-comments-april-2016/

        I hold you in the highest regard, and this blog has contributed so much to my knowledge about my own MS, but agreeing to write anything for OMS was a bad mistake on your part. Your full statement of “endorsement” is the very first one on the very first page of the book, and while OMS only quoted a small part of it (the “I have no hesitation…” bit) in its pre-publication promotions, that small bit led many people to believe that you were in full support of the OMS approach. Most people, in their despair at an MS diagnosis will not research deeply enough to see beyond the bait being dangled in front of them and they will see OMS as the answer to their prayers – I did at first, but then I looked a bit more deeply at its claims and woke up to myself – as I did with all of the other “MS diets”. Because of his conventional medical background and status as a Professor of emergency medicine Jelinek has always had to tread a very careful line between conventional medicine and the OMS approach and he never makes a bold claim that his protocol will “cure” MS, but the general populace will not see the fine shades of meaning between “cure” and “overcoming” – to them, for most practical purposes, the two are pretty much the same thing.

        • I can’t help but agree with you about the use of the word ‘overcoming’ being interchangeable with the word ‘cure’ in some people’s minds.
          If the books introduction were to spell out that following the dietary recommendations may benefit some people’s MS but not all and is in no way guaranteed to cure or even slow the progression then people would be able to engage with the diet from the most informed position.
          Like others I am made uncomfortable by the vid too. It smacks far too much of presenting this as a cure and thereby generating false expectation in PwMS and their families and friends.

        • My endorsement of OMS has always been on the condition that it is (1) complementary to DMTs and that (2) I don’t endorse the diet as being the ‘MS Diet’, there is no evidence to make that claim. I am prepared to acknowledge that some pwMS may find the OMS diet helpful in a similar way as do many people with MS find intermittent fasting and other diets helpful. OMS is also not an MS cure or possible MS cure, and there is nothing in the book that makes that claim.

          I am a big proponent of the philosophy of minimal gains as a treatment strategy for MS and the OMS addresses the lifestyle issues of this approach. In fact, OMS could be rebranded and interpreted as another ‘Brain Healthy Lifestyle’ book independent of MS.

  • Seems several things are being confused about oms. There is the cult like following and the book. The book clearly lays out the evidence for the reasons for the recommendations including where he thinks the evidence is weak. The principle behind the book is given there isn’t double blinded evidence available are there any other things you can do to increase you odds of slowing down the diease. Part of the calculation is the risk involved in that. If the risk is low or actually beneficial to you (like exercise) then it’s actually just additional insight to why to do something. Not long ago without evidence doctors where encouraging ms patients to not exercise (you still hear this today in the US in some places). Most of what is in the book is common sense. The questions to ask yourself if you have ms: are there things worth trying without double blinded evidence or is it better to just wait. Part of it comes down to the risks and sacrifices involved. Some have turned oms into an anti dmt book when clearly George is not. The book is now some what out dated being 3 years old in the dmt front. He doesn’t promise miracle cures. He is just saying it isn’t hopeless. You need to decide for yourself if there is enough credibility to warrant exploring parts of the program. I thought there was. There is evidence from other sources, fields and populations that count for something. Maybe not double blind quality so not something a doctor can recommend but if you don’t have time to wait, is it worth exploring? The book stands on its own without anything else to buy.

    • I like this comment. Yes, the OMS diet may not be evidence-based for MS in terms of having randomized controlled trials to back it. But it’s not some insane, unhealthy diet, although I could understand why a person would choose to do something different. OMS is not like some other bizarre regimens where you could actually be harming yourself by following it (that is, unless you forgo drugs thinking that you don’t need them thanks to OMS). I personally do OMS-lite in that I do eat chicken. I appreciate having a lifestyle program to follow because it gives me a sense of agency, and I think that is useful for me psychologically. Once there is some real evidence for something different, I will do that instead. But for now, OMS provides a satisfactory risk/potential reward ratio for me. (I would do fasting but I’m already underweight.)

      • Same here, I can’t do fasting as I’m underweight. The only thing I can do is eat during the hours 9am to 5pm and not eat outside these hours. Which some describe as a type of intermittent fasting.

  • How would a trial work with OMS, I think it would be difficult. Many pwMS already exercise, do yoga or meditate, have cut out eating certain foods, and take vitamin D.

    To have a true control group, surely the pwMS in the control group would need to have not meditated or done yoga before or not done it after diagnosis, not cut out certain foods before, and not do any exercise. Would these pwMS be hard to find?

    • If it was a long term trial it would be even more difficult to do, as the pwMS in the control group would not be able to take up exercise during the trial, not take vit D etc etc… and then who with MS would want or be prepared to be in the control group?

      I walk to work, so expect I couldn’t be in the control group, 35 minutes brisk walk each way to work, with no sunblock on my face.

    • And rule out holidays to sunny locations to both control and intervention groups during the trial, as this might give a vitamin D increase. Then location of participants would be important to know, do those in the south of England do better in the trial than those in the north or Scotland?

  • The shirt isn’t ruined, it is the beginning of a new and more interesting existence, much like each lesion offers me (I try to remain positive 🙂 ).
    Lay the front panels one on top of the other and pour bleach on the stain so that it goes through to the other panel. Open out the shirt, take a cup of bleach and a paint brush and create a fabulous new design. Or if you like that sort of thing you could applique all sorts onto the shirt or play with fabric pant/embroidery thread/beads/rhinestones. You could even add more stains in an artistic way, they no longer look like stains, but natural dyes. 🙂

  • Lifestyle advice for people with MS is important, yet it seems to me that little effort is devoted to it by the MS teams. We also have to bear in mind that a significant chunk of the population are eating what could reasonably be called the worst diet ever know to humankind. So what to do?

    It would be a giant leap forward if the average sugar consumption could fall from its current levels of about 150 spoons a week/person. I had a patient who consumed 600 spoons a week, mainly in the form of soft drinks – her health was being destroyed by it. We do not need to wait decades to realise that you cannot have a high sugar intake and health. The average is very high and higher in the poorer sections of our divided society.

    Personally, I found the OMS book really helpful, mainly because it represents an effort to look at what evidence is out there and put it together into some practical suggestions for living. Agree with the exactitudes of the diet or not, it contains much common sense and an acknowledgement that hard science will not give us answers on this any time soon, if ever.

    Moat of the diets have commonalities – any healthy diet will be low on sugar, high in vegetables and fruit. Low quality meat and dairy are problems and we should not avoid the pernicious effect of alcohol, masked by the health promoting social context in which it is consumed.

    Towards the end of my GP career, I felt like I was witnessing a mass poisoning event caused by appalling endocrine disrupting, artery clogging, brain fogging food. It really is an emergency going on out there!!

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