An MS diet: science, art or unwelcome distraction?

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 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.

My “MS” diet is predicated largely on the avoidance of all saturated fats. This doesn’t require the onerous reading of labels that I feared – essentially I just need to avoid red meat, dairy and the majority of processed (aka junk!) foods. And this common sense approach seems to work well – although I’m occasionally surprised at the ‘hidden’ saturated fats in some foods: 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 saturated fats (<20grams a day). The evidence he presented seemed 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 – and, given that the benefits of the diet (according to Swank) should be measured over years (and decades) no study has been able to achieve clinical ‘proof’ either way.

Given that the diet is low cost (in fact, financially and physically the ‘cost’ might actually be negative) the NHS-advice initially might appear unduly reticent…. but having maintained my own MS diet for ~18 months now, I’m in no doubt that the “strict discipline” it entails should not be underestimated.  I have found that the diet is onerous when eating out, eating with friends or going on holiday. And the diet’s instructions (at least, as per Prof. Swank) 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 – when there is no clear scientific/clinic evidence that the diet has any bearing on MS progression at all.

Swank’s original MS diet has 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 a further, although secondary, recommendation.

As I mention above, I have largely been following an ‘art’ approach but, of late, I’ve been feeling the need for this to be bolstered by something more… palpable (statistical or concrete) – if I’m going to continue to subject myself to such self-restraint.

I recall 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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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 a few days 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 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. 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) (which is something of a disappointing surprise).

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.

On balance, I am going to keep on at it – certainly for the ‘now’. 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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As a footnote, see 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

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Update:

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).

As many of the low fat foods I ate were also low protein, one of the (unexpected) issues of this diet became one of protein-shortfall. I have written a separate blog on this if you are interested: https://cyclingwithms.wordpress.com/2017/08/03/whey/