An MS diet: science; art or unwelcome distraction?

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Of the many aspects of my life that have changed since my MS diagnosis, my “new” MS diet seems to be the one that I’ve discussed the most.  Everyone can relate to the concept of a new diet and is interested by it – and it’s a good MS-related conversation piece that doesn’t necessitate delving  into the gory details of more personal symptoms and strife. And the diet is, essentially, no more than a “healthy” one that anyone could (or probably should) consider because of its long term health benefits.

The diet is predicated largely on the avoidance of all saturated fats. This doesn’t require the onerous reading of labels that I thought it might – it basically necessitates avoiding red meat, dairy and the large majority of all processed (aka junk!) foods. The diet isn’t necessarily vegetarian – white fish and skinned white meat are still ok – but there is the recommendation to avoid all dairy (even in low fat alternatives). A largely common sense approach seems to work pretty well – but occasionally I’m surprised at the ‘hidden’ fats in some foods (which I’ve now added to my list to avoid): avocados; olives; egg-yokes; walnuts; and some vegetarian meat-substitutes to name but a few.

The fact that it’s a ‘healthy’ diet (at least, compared to the average diet in 2016 UK) is not really in question – of more pertinence to me are: is it actually helping me keep my MS under control? and are the benefits, which do need to be carefully weighed up against some of the ‘downsides’, actually worth it?

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The concept of an MS diet really stems from the work of Professor Swank, whose long term study of MS patients over a ~30 year period showed remarkable health benefits associated with adopting a diet low (in fact, very low) in saturated fats. The evidence he presented seems almost incredible – at a time when there were few, if any, alternative approaches to tackling MS. Today, even though there are now numerous disease modifying drugs available to patients, his dietary recommendations are still very relevant as they do not suffer from the (potentially severe) side effects of the pharmaceutical equivalents; and are of low (arguably zero) financial cost.

The diet is, without doubt, healthy and, in MS-terms, its supporters are almost religious their faith in it. Message boards are alive with patients convinced that the diet has nullified (“cured”) their MS and they highlight numerous scientific papers which support links between MS progression and patient behaviour/diet. However, – and it’s a big however – the mainstream medical community (read, in the UK, “official NHS advice”) continues to shy away from a direct recommendation of the diet. The NHS’s, much more softly-worded, advice is to pursue a “mediterranean-style” diet where possible (plus Vitamin D when required). The powers-that-be appear unconvinced of the MS-healing properties of Swank’s diet. Given that the diet is low cost (in fact, financially and physically the ‘cost’ might actually be negative!) this might initially seem to be unduly reticent…. but having maintained the MS diet with strict discipline for ~18 months now, I do see one big downside, one which I feel is understated: the “strict discipline” that I mention.  I have found that the diet is onerous when eating out, eating with friends or going on holiday. And the diet’s instructions are clear: to get maximum benefit it has to be followed at all times: any ‘breaks’ set you back a disproportionate amount of time, so it needs an “all or nothing” approach. I can see why the NHS guidelines retreat from afflicting MS patients with additional pressures and stress – another list of things they obsessively have to do.

In fact, Swank’s original MS diet has since been refined and modified by contemporary ‘experts’ (George Jelinek probably being the highest profile, or, at least, the most visible on the internet). Focus has moved away from exacting measurements (‘science’) to easier-to-follow generic advice (‘art’) – but the core tenets remain the same: reduce ‘bad’ fats; increase ‘good’ fats; and supplement with Vitamin D. Avoiding dairy products is an additional, but probably a secondary, recommendation.  To date, I have been following the ‘art’ approach but, of late, I’ve been feeling the need for this to be bolstered by something more… palpable (statistical or concrete) – both in terms of the diet, and its impact.

I refer to an early scene from the TV series, “Breaking Bad”. If you’re not familiar with it, a chemistry teacher, Walter, ends up in cahoots with a small-time local drug dealer, Gretchen, to illicitly manufacture (or ‘cook’) the drug, crystal meths. Their early exchanges somehow paraphrase my thoughts above, regards the cold, calculating power of scientific accuracy:

Gretchen: This ain’t chemistry – this is art. Cooking is art. And the drug I cook is the bomb, so don’t be telling me.

Walter: The shit you cook is shit. I saw your set-up. Ridiculous. You and I will not make garbage. We will produce a chemically pure and stable product that performs as advertised

Walter: I don’t know. Just…doesn’t it seem like…something’s missing?

Gretchen: What about the soul?

Walter: The soul? There’s nothing but chemistry here.

Using exactly calculated chemical measurements Walter then goes on to create the purest (best) crystal meths that Gretchen has ever known.

It’s not “magic”; it is chemistry, with known reactions between specific quantities of known chemicals. Art might be the finessing of the output, but the real-deal is in numbers. I was increasingly aware that I had no hold on what my ‘numbers’ actually were.

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As I see it, there were two main stumbling blocks as I first considered adopting  this ‘new’ diet as recommended by a faceless expert:

Firstly, although our interactions and dependencies with what we eat and drink are well understood – right down to the molecular level – we are all unique individuals; and the mechanisms by which we break down our foods, and how they impact upon us, are different. They are moulded by our behaviours and our environments, as well as our physiologies and physiques. The most extreme examples of these are specific food allergies – but, even these are not black and white, there’s a sliding scale of mild intolerances and reactions to specific fats, enzymes or proteins etc. A ‘generic’ diet that stipulates exact measurements of certain food types has not, by definition, been individually tailored. In my individual case, the biggest issue I found was in recalibrating  recommendations to account for the large number of calories that my cycling miles necessitate. In the literature, and on the web, there is surprising little advice as to how doubling your daily calorie needs should impact advice upon the constituent parts of your diet – most pertinently in the case of the MS diet, the levels of saturated, versus ‘other’, fats that you consume. If there is a recommendation to limit your daily saturated fat intake to <30 grams, I assume that this figure becomes <60 if you calorie intake rises from 2,500 to 5,000? By contrast, do I correctly assume that the recommended Vitamin D supplementation is independent of calorie intake?

And secondly, the “consumer” – e.g. me! – has little visibility of what’s going on inside their own bodies. Chocolate tastes nice. And so do burgers. We can see no evidence that these are bad for us as we gobble them down – we can only take the word of scientific advice from people that know more than us. People that have done “analysis” and “science”; people that have looked at “statistics” and “data”; and who have used computers and micro-scopes. Our bodies are “black-boxes” – and because my primary reason for adopting an MS diet are not aesthetic (not an issue with losing weight; skin tone; or brightness of eyes etc) it’s hard to work out whether the MS diet is doing what it’s meant to, or is having any impact at all. The diet represents a lot to be giving up based on a faith in the advice of someone you’ve never met.

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In “The Martian” (the film, if you’re me; a book, if you’re more high-brow), scientist Mark Watney is stranded, alone, on the planet Mars. The situation looks bleak. But Mr Watney is a resourceful fella. The character, played by Matt Damon, takes a look at what scant resources he does have available – principally a few seeds and some bags of excrement (!) – stares at his camera and announces:

“In the face of overwhelming odds, I’m left with only one option… I’m gonna have to science the shit out of this.”

I’ve decided to take his approach. Just – again, as it’s me – a more low-brow alternative to cultivating a Martian potato farm.

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My assessment

For 2 days (and 2 days only!) I wrote down everything I ate and drank. Using ingredient listings, I added  up totals for my intake of unsaturated fats, saturated fats and calories.  I chose 2 days when I was not cycling – this is unusual for me as I ride my bike 5 or 6 days a week – but I thought it would be easier to first tackle my “base-line” days without the added complications of comparing the impact of various ride durations, intensities and speeds (and so on!)

I was surprised how low my calorie intakes were. Given the volume of food I ate, I ‘only’ consumed 2,600 and 2,800 calories on the 2 days (which is slightly above the recommended ‘average’). To my naive surprise, much of the bulky food I was eating had little or no calorific – vegetables, pasta, a very large salad and a stir-fry recorded negligible amounts.

Swank recommended less than 20 grams of saturated fat a day (note that Jelinek adjusts this to nearer 30 as Swank omitted the cumulative impact of saturated fats in ‘good’ foods (e.g. even a slice of wholewheat bread or glass of soya milk contains some saturated fats that add up over a day)). My average figures were 17g of saturated fat and 42g of unsaturated fat (for which Swank gives no recommended figure). Note though that my figures exclude the ~5 tablespoonfuls of linseed oil that I added, as recommended by both Swank and Jelinek – these (surprisingly to me) contained an additional 5.5g of saturated fat, and 41g of unsaturated: e.g. an additional ~33% and ~100% of my total daily amounts.

Given that I’m also taking daily Vitamin D supplements, and my daily diet included 8 portions of fresh fruit or veg, I’m now confident that I’m doing what is required. Or, at least, I’m meeting the requirements that I’ve set for myself.

But, what of the impact? The impact upon my MS is nigh on impossible to measure.

Last year, my MS was deteriorating like a runaway train. New symptoms were emerging every few weeks; and I was accelerated onto a dose of chemotherapy as a result. This year, although I’ve struggled with some long periods of poor health and still have my ‘residual symptoms’, my MS has felt much more in check. This, I’m sure, will not have been due to a change in diet – more likely, the treatment I received (or just the passage of time…?).

Luckily though, for the purposes of my experiment, over the last few years I have had more blood tests than your average Lance Armstrong. This was largely because of the 5-6 years of MS symptoms that I suffered pre-diagnosis, as doctor after doctor puzzled over my symptoms and ordered blood test after blood test in order to try and work out what was wrong with me. The result is that I’ve got a steady record over half a decade of my cholesterol scores (HDL being ‘good’; LDL being ‘bad’) – and, most tellingly, I had my bloods done just before I was diagnosed, and, again, last week, 18mths of dieting later.

Pre-diet, both my HDL and LDL can be seen as being pretty steady. The recommendation is for your (good) HDL to be above 1 – my average reading was 0.85, with only one reading above 1 (e.g. it was a bit low).  The advice on (bad) LDL is to be less than 3 – my average reading was 3.3, however, this was skewed by a one-off reading of 3.5. All my other readings were under 3 (e.g. pretty reasonable).

In summary, my cholesterol readings were certainly not too unhealthy, but there was scope for ‘improvement’.

Last week, a year and a half of dieting on very low saturated fats, my HDL was 1.2 (the highest reading I’ve ever had); and my LDL was 3.  Jumping to a conclusion, my ‘new’ diet would seem to have bolstered my HDL (good), but to have had little impact on my (bad) LDL (which is now actually the 2nd highest its ever been).

So what?

Apologies to any reader who has persevered this far: his blog has been pretty statistical, and therefore a bit boring (no doubt) for others to read.

However, for me, it has been interesting to research, and then to record.

Last year my MS felt out of control, and I was desperately keen to do anything (everything) I could to put the brakes on.

Now, it feels more in control – but I consciously remind myself that the long-term risks are still there – and the potential downsides to the condition so terribly severe.

My diet, which had been onerous, does appear to have boosted my ‘good’ cholesterol scores, but has required some serious discipline to maintain and seems to have little, or no, impact on my ‘bad’ cholesterol readings (which is something of a disappointing surprise).

On balance, I am going to keep on at it, certainly beyond my next dose of chemotherapy later this year.

Longer term, I very much hope that I’ll have a growing confidence to ease up on my efforts – not so much when I’m at home in my own kitchen – but principally when I’m out and about, in restaurants or at friend’s houses – the times when I feel as though I’ve been giving up the most.

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As a final thought, I remember advice offered my neurological consultant last year:

“The best thing you can do to counter your MS is to be happy. Happiness, you’ll find, is the best medicine of them all.”

I just need to find a chemist that most reliably prescribes it. That one is definitely an art not a science.

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Note this useful link, which sums up several of the “MS-related” diets that I’ve heard mentioned:

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Diet-and-Multiple-Sclerosis-Bhargava-06-26-15.pdf

 

Footnote:

April 2017: I have now been on my MS diet for 2 years.

My latest blood readings report that my HDL (good cholesterol) is 1.3. This is the highest it has ever been (recommended level is above 1, my historical average is just below 1).

My LDL (bad cholesterol) is 2.1 – which is significantly lower than it has ever been before (the recommended figure is below 3. Historically I’ve tended to be just over this amount).

 

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4 thoughts on “An MS diet: science; art or unwelcome distraction?

  1. Thanks for the record of your diet. I too TRY to live this restrictive diet and do think it helps.
    As a London based cyclist of 30 years and diagnosed with MS in 2001, I adopted a very strict diet and was relapse and symptom free until 2011 (cycling 20 miles a day to work – I became complacent).
    I have since had a series of relapses, stopped working, started taking DMTs and am no longer able to cycle.
    Now back on the strict dietary regime, while not scientifically proven, I believe that the environment, diet, exercise and mental health are crucial.. Marie

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  2. Interesting.. and appreciate the time taken to add a comment. I’ve read of several stories similar to yours. The most immediate gain I’ve taken from adopting this diet is some sense of empowerment… which has gone hand-in-hand with optimism – whatever the science behind saturated fats et al, maybe this improved psychology is enough in itself to make a difference. Everyone will have their own experiences – but I hope what sounds like a tough time for you soon improves.

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  3. This post was no unwelcome distraction to me. I’ve just joined a clinical trial contrasting two MS diets: the Wahl’s Protocol and the Swank Diet. And while I have very little interest in the naval-gazing aspect of dieting, being forced (for a week) to stop to measure and record every gram of food and drink has already educated me about what I could be doing better. (I don’t drink or sleep nearly as much as I should.) I won’t go so far as to say an unexamined life is not worth living, but an unexamined life might have dire consequences, especially for those of us with MS.

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