Possible Alzheimer’s treatment? Try patient power

Ever been on a high-fat/low carb Atkins-type diet? Upside of rapid weight loss; downside of constipation and bad breath. How about if you could get the benefits without having to endure the rigours of the diet? That’s the promise of some fascinating research that I’ve written about in the Daily Mail today.

 Professor Kieran Clarke,an expert in metabolism at Oxford, has found a way to make ketones in the lab. These are the small energy molecules that your body releases when you’re on one of these diets. They are an alternative source of energy that come from burning up your fat stores because your carbohydrate supplies have been cut right back. For more details check out the article.

 However there are some aspects of the story that didn’t really emerge in the newspaper version that are very relevant to “Body of Evidence”. Even I was amazed to discover the extent to which clinicians had internalized the slogan “low fat good, high fat bad”, whatever the evidence.

For years there have been reports that a high fat diet and the ketones that it generates can help people with epilepsy but it wasn’t until 2008 that Professor Helen Cross, a neurologist and expert in childhood epilepsy at Great Ormond Street Hospital in London, ran a proper controlled trial showing it was effective. Recently a review by the respected Cochrane Collaboration found the same thing,

 Young children denied treatment

Yet thousands of children with epilepsy, who could benefit from the diet and may be suffering dozens of fits a day,aren’t given the option to try it simply because their clinicians don’t believe or don’t know about the evidence that a high fat diet can benefit them.

Around 30 per cent epileptic children don’t respond to the drugs and yet only a fraction of them are offered the evidence based diet option. According to Cross, there are about 3000 children in the UK who could benefit from the diet.  However just 200 at any one time actually get it. A statistic she described to me as “appalling”.

Her explanation for this failure is that it is essentially down to ignorance. “Doctors learn in medical school about the very real dangers of raised ketones when you have uncontrolled diabetes and then apply it totally inappropriately to the treatment of epilepsy with a ketogenic diet,” she says. “Of course there are side effects, such a constipation, strain on the kidneys, and mineral and vitamin shortages, but they can relatively easily handled if you know what you are doing.”

 Few funds for non drug treatments

The new synthesised ketones could eventually make the dietary approach more comfortable for neurologists and patients but it could take a while because what’s happening to epileptic children is essentially similar to what’s been happening to Dr Clarke herself.

She first produced ketones in the lab about a decade ago and it was obvious from the start that they had a huge range of possible applications (as set out in the article). Apart from epilepsy, they could help with diabetes and several degenerative brain disorders such as Alzheimer’s.

Imagine the funds that have been pouring into ketone research and follow up trials if they were a drug As it is Clarke still hasn’t even got the funding needed to scale up production so that large trials can be run. At the moment the synthesised ketones cost £80 per drink and they are only available for research.

Of course drug companies aren’t charities  but there is obviously something amiss when governments wring their hands over the human and financial cost of obesity, diabetes and Alzheimer’s and almost exclusively funnel money into drug-based approaches and then issue anodyne recommendations about healthy low carb eating and a bit of light walking.

Synthetic ketones are just the kind of development that might have a real effect. Is it really either rational or ethical to leave them to sink or swim according to the non-commercial funding lottery?

Patient driven research

What’s needed is an exercise of Patient Power. A drive for Drug Democracy. Instead of passively waiting for a new treatment to be handed down, to  create the demand using web-based customer feedback. The article describes how some people are reporting great results with giving high doses of coconut oil to Alzheimer’s. Obviously wacky right?

But supposed everyone giving the oil started reporting their results in one place. Some, maybe most, would be negative but what if 20 or 30 per cent found benefit? The article describes two cases where the oil had remarkable benefits. They are of course dismissed as  anecdotes, they don’t mean anything. But 10 similar anecdotes are something more and 100 might build pressure for proper research.

Because there is sensible reason why the oil might work that links it to the new ketone research. Coconut oil contains a type of fat that the body turns into ketones and they are an alternative source of fuel for the brain. Now if – sure there are a lot of “ifs” here, but these are desperate times – one of the problems with Alzheimer’s is a problem with glucose in the brain, then providing an alternative source of brain fuel – ketones – might just have an effect.