Ketones are a type of chemical that your liver produces when it breaks down fats. Your body uses ketones for energy typically during fasting, long periods of exercise, or when you don't have as many carbohydrates. A lot of pro cyclists are taking ketones (it is not on the doping list .... yet) to help their recovery and sleep. This is a relatively new trend and there is no strong scientific evidence yet that it helps but all the major cycling teams are paying a lot for ketones for their riders (it is quite expensive). I was wondering if anyone have tried it to see if it would alleviate ME/CFS symptoms. The reasoning would be: if there is something wrong in ME/CFS with taking up energy from glucose, then ketones might help as an extra source of energy? I suppose the reasoning would is similar to a keto-diet but perhaps a more effective way to test the theory behind it?
I've thought about this in the past as well when I first saw this trend in cycling. I know that some users on Twitter have tried it out and even used the same brands commonly used or at least advertised in cycling. Whilst the research is certainly still extremely early and only one study has really shown a significant signal, this really is at the extreme end of sports where marginal gains are decisive and the rich teams are willing to take a small gamble on something that could show some marginal improvements. However, I don't think any of that translates to ME/CFS patients at all. The reason why cyclist go for exogenous ketones instead of a keto-diet is of course because their training and exercise regime requires excessive carbohydrates. So currently for us patients, it still seems far simpler, possibly more effective and definitely cheaper, to just try that out directly and many have without any success. A different approach from cycling, with a very different pathway, for ME/CFS patients would be EPO. Even that hasn't shown much success, but as everything else it is of course understudied. There is an interesting EPO and Ketones connection and this is one of the reasons why cyclists actually take Ketones, in the hope of naturally raising their EPO as shown in some small exploratory work www.twitter.com/Gonzalez_JT/status/1598255404739284992? & https://journals.physiology.org/doi/full/10.1152/ajpendo.00264.2022 . So taking Ketones could be a natural way to do some EPO doping. The big caveat to all of this is that this research is all in it infancy steps, exploratory and not everything initially hailed as marginal gains in cycling actually turned out to be true or even applicable to other circumstances.
I'm not convinced that ME actually does affect ATP production, or if it does, it might just be an effect far downstream of the core dysfunction, and affecting only some PWME. I don't seem to be suffering from any ATP deficit. I'm convinced that my "fatigue-like symptom" is neurological. Boosting ketones sounds simple and safe, so I expect some PWME will try it. I don't recall reading any huge improvements from ketogenic diets, just minor ones that could be attributed to other effects of changing diet.
