Good God where to start with this subject. I think of all the things I have tried, and all the ‘treatment’ options available, diet and nutrition remain the areas I have probably read the most about, spent the most on, and tried the most of, in terms of diet types and supplements. I suppose it is one area I can truly control, but like all of the other treatments, any improvement in symptoms is very slow and it’s very hard to accurately attribute a response, good or bad, to a particular food or supplement.
There are many many books and blogs out there on ME/CFS, many offering hope of recovery (or at least improvement) if you follow a certain regime of supplements and diet types. Naturally, all of them differ from each other, whilst seeming to put forward very valid arguments for why they will help. So once again, I was trapped in an exhausting round of mental back and forth, trying to figure out which of these regimes to try (on reflection I am reminded of reading All The Books on infant sleep when my firstborn declared himself incapable of sleeping for more than 3 hours at a time and I was convinced that the secret to this lay in one of the zillion professed solutions, all completely conflicting with each other. That drove me mad too).
The first protocol I decided to try involved about 12 different supplements, taken in a staggered manner over the course of a few weeks to check for any negative reactions. The supplements included D-Ribose, magnesium, coenzyme Q10, milk thistle, St John’s Wort, Vitamin B12 and B6 plus a few others. I took those for a few months and my symptoms slowly got slightly better but I couldn’t really attribute and major improvements to the regime. I was also eating a diet free from refined sugar, mostly focused on whole foods which were predominantly plant based but with some fish thrown in. I stuck to this for a few months but slowly started to deviate from it as the supplements ran out and I got lazier with my food choices. I ate whatever I wanted for a while (ALOT of cheese. I bloody love cheese. There isn’t much that can’t be improved with the addition of cheese).
After a while I realised I’d pretty much plateaued with my recovery, and also was getting pretty chubby. Turns out the addition of cheese to every meal isn’t great for the waistline, especially when you are incapable of exercise.
Around this time the childminder looking after my youngest found out about my illness, and messaged me to tell me that she had previously been almost housebound with ME/CFS but after trying a particular regime dubbed ‘mitochondrial therapy’ she had seen an almost complete recovery, so I figured I would give it a go. I booked an appointment with a different person to the one she saw, and my experience, if I’m honest, was nothing short of bizarre.
Having looked into ‘mitochondrial therapy’, it was actually just a regime of supplements, which came with a list of caveats about the fact these supplements do not treat or prevent any medical conditions. So far, so dodgy. The appointment itself was held in a strange little building, down a rather dilapidated back alley and by the time I was in the room with the ‘Dr’ who didn’t talk directly to me or make eye contact, and his two overly smiley assistants, I was fairly convinced I was about to be part of my very own horror film. I hadn’t quite decided whether it was going to be a Hostel type torture situation or if things would just get weirder and weirder until I had to make a run for it, potentially finding out at that point the other ‘clients’ in the waiting room were all in on it and would try to stop me (I’ve seen way too many movies). Well as it turned out, it wasnt a horror film. The Dr claimed to do something called a Heart Rate Variability test (I can find no scientific evidence that this is a useful thing to have done, nor can it really tell you anything about how your mitochondria is working) and showed me some graph that indicated I definitely needed the full range of supplements he was selling. Of course, by this point I was aware the whole thing was a snake oil sham. But being desperate for improvement, and being so unbelievably British I would rather part with an embarrassingly large amount of money than risk an awkward conversation, I bought the fucking supplements.