For two-and-a-half years I had sought an answer for what was going on in my body. Anxiety, depression, IBS, I had been through many – and finally I found myself with an official diagnosis for ME/CFS. To say I was over-the-moon would be inaccurate; I was scared, bewildered, frightened, panicked and hungry for further answers. However, the overwhelming emotion was relief – mainly because medical professionals had up until now made me feel like I was going insane. It wasn’t an imagined condition, it wasn’t a mental illness – it was a very real, very physical impairment.
Although ME/CFS is known as Chronic Fatigue Syndrome, it is not just fatigue.There are many conditions where fatigue is a dominant symptom but they do not get labelled as a Chronic Fatigue Syndrome. In fact, the term ‘syndrome’ denotes an umbrella description for a condition of unknown origin. So when the specialist told me ”yes, you do have ME/CFS” – what she was actually saying was: “There is something seriously wrong with you that is causing this set of symptoms, but we don’t know what it is, and we don’t know how to cure it.” She did go on to warn me in fact that while its unlikely my symptoms will get worse, there is a chance I will never recover.
Now anyone who knows me personally know I am not someone who accepts defeat lightly. To be told something like this doesn’t cause me to fall into a heap on the floor it makes me determined to find an answer. I always felt that no matter what was wrong with me, I would one day beat it, and that is what drove me not to accept the medics opinions when they differed from my gut instinct.
I questioned the specialist further. She told me some patients get relief from a diet free from dairy but its very hit and miss. She said the recommended treatment was a course of CBT counselling and graded exercise. She was aware this was controversial but said she was unable to comment about that due to her position. She did say that there were tests being trialled at the moment which can prove it is a physical condition and they would likely be available in the next few years – which would help move public opinion away from it being a psychological condition (and thus official treatments would be altered).
I came away from that meeting not really any the wiser but happier that I could now have a starting point for recovery. It might be a long way off, but at least knowing what is wrong will give me some keywords to feed to Google.
For the next few weeks I researched ME/CFS tirelessly. I had a completely dogmatic approach to getting to the bottom of what was going on. It didn’t really seem to get me anywhere though, and I kept coming upon dead-end after dead-end.
One day I came across a private doctor online who specialises in the condition. Dr MyHill had apparently left the NHS because she felt unable to treat ME/CFS patients within the remit of NICE (the medical team who determine what treatment is available). She opened up a private practice in Wales and had a waiting list of 6 months. I looked on her web site and she talked a lot about an holistic approach to treating the condition. She said no one thing will work but you need to really look at your diet and lifestyle and change them accordingly. She recommended the Caveman diet (or Paelo diet) because it omits most chemicals and artificial ingredients. I tried this diet and it didn’t do a lot of good. However, I liked her approach – she talked with confidence and power and seemed to know what she was talking about.
She offers tests which can give you a definitive result proving that you do have a fatigue problem (testing the mitochondria among other things) but I was broke and couldn’t afford these. I found an e-book she had written about fixing ones health and I wasn’t very far into when I came across a chapter on supplements.
Up until this point I hadn’t really paid much attention to supplementation. It was a bit new-agey for me. However, by this point I was desperate and anything was worth a try. She recommended Co-Enzyme Q10. I started taking this and I did notice a slight improvement quite quickly but it tailed off, and the effect wasn’t dramatic enough for me to consider paying the heavy price for them.
I read on.
The next thing she suggested was a cocktail of B12 and Magnesium. I started taking these and within days felt much better. My anxiety was reduced, my food intolerance and fatigue completely disappeared. I was on cloud 9! For two weeks I had my life back! And then the symptoms returned and I was deflated like a hot air balloon whose fire had gone out.
I kind of gave up on Dr Myhill after that but something I read in her e-book stayed in my mind: that some people with ME/CFS are actually suffering from a permeable gut.
I spent a few weeks in a fit of depression, eating anything and everything and getting worse by the day. I could no longer avoid the fact that whatever was going on my diet was a major contributing factor to my symptoms. But I am not a dietitian, or a nutritionist, nor any kind of scientist. I had absolutely no idea what the problem could be.
I re-focused my research towards nutrition. I read everything I could on the subject of food allergy and intolerance. I realised it was intolerance rather than allergy because tests I had done before had come back negative. So I went down the avenue of researching permeable guts otherwise known as “a leaky gut”.
A leaky gut is a term that doctors do not recognise. This is because there has been no clinical trials to prove its existence. So going to the doctor and putting my self-diagnosis, even with a ream of printouts to show my symptoms completely tallied with this condition got me absolutely nowhere.
I was however convinced I had a leaky gut and did my own research on how to cure it. It said you have to go gluten, sugar and dairy free and have a cocktail of supplements including but not limited to very strong pro-biotics. The problem was every time I tried them (and I tried every brand in the shop) I had a strong reaction to them.
I decided to focus on the diet side of things, because that is something I could control. Initially I went gluten-free, sugar-free and dairy-free separately and there were slight improvements but nothing worth writing a blog post about. Then I went vegetarian and ate a very nutritious and healthy diet but I got worse. One day, completely fed up of being in bed for a week, I just decided to cut it all out. I stopped eating anything with gluten, dairy or sugar in it. That included natural sugars, such as in fruit and vegetables too (it took a lot of self-education about nutrition to understand what I was embarking on).
Within two days I was jogging for 30 minutes around the park – and I did not get any effects afterwards. I felt great, better than I had in years. It was clear to me at that moment that I was right – I do have a leaky gut and I am just going to have to avoid these foods.
This, however, was a big ask. All of my life I have had a compulsive eating disorder. I ended up almost 20 stones in weight because I was unable to handle a traumatic event in my life. I then struggled for a good few years to get my diet under control and lose most of my extra weight. At this point my diet was probably the most controlled and healthy it had ever been – but could I give up eating anything remotely tasty for an indefinite amount of time, possibly forever? Unlikely.
So what I had to do next was work out exactly what was causing my problems – what food was I “allergic” to? I continued with my self-made elimination diet and began to keep a food and symptom diary. The results were life-changing.
Here is what I found out:
Whenever I ate a symptom inducing food, the effects did not show up immediately – instead they always occurred the next morning after I’d woken up from a long sleep.
I found that sugar – and it did not matter which kind (fructose, sucrose, artificial, natural etc) caused extreme muscle fatigue, headaches and confusion. The effects would last for 24 hours once they set in the next day.
I found that dairy caused bloating, constipation, wind and sinus problems. Not to mention flu symptoms.
I found that gluten was the most evil of them all. It would cause EXTREME cardiovascular fatigue, orthostaic intolerance, headaches, confusion, depression, flu and sore throats. Not only all of that but the effects would last 48 hours, not 24.
I also found that soya and yeast were causing problems, and there was nothing processed that I could legitimately eat and be well with.
I was left with a diet of eggs, oil/fat, nuts, seeds, fresh fish and meat, brown rice, rice cakes, goats cheese, mushrooms and a tiny portion of frozen mixed veg. That was all I could eat if I wanted to be well. If I stuck to this, it was as if I never had ME. But to this day I have not managed to stick to it wholeheartedly for more than a few days.
So these self-trialled results were mind-blowing but still continued to frustrate me. I couldn’t take supplements or medication due to the lactose and other sugars in them so I was worried about having such a restrictive diet. Do I eat this diet and feel better now or do I eat a more widely nutritious food-plan for longer health? There was and is no right answer, the decision has to come down to personal preference.
I decided that for the most part I needed to try and stick to this diet. And when I did I was well. Any time I fell off the wagon I paid the price the next day and as soon as I jumped back on it I got well again. I was so glad to have some relief from my previous symptoms. I’d gone from crawling to the toilet to jogging regularly. And I was starting to get my life back again. I started driving lessons, dating again and eventually embarked on some part-time volunteering in a charity office (which I am still doing now).
Where the doctors had failed me; I had succeeded.
Obviously though I could not be happy with a life of eating so strictly and continued to continue my research. I wanted to know WHY I had a permeable gut – because if I could work out why then surely I could fix the problem?
There is this belief that the gut with all its neurons acts as a second brain. This means that the gut is actually acting out when something is wrong in the body – in much the same way that things go wrong when the brain senses something isn’t right. So if I have a permeable gut, it is because something in my body is causing it. I’d read that anxiety could do this but I wasn’t ready to accept that. I had spent years trying to convince everyone and their dog that ME/CFS was not a mental disorder and if anxiety was to blame then its as good as throwing all my (and everyone else’s) campaigning out of the window.
I also didn’t buy this because I had tried many anti-depressants and they all made me worse not better. However, I now realised it was the other ingredients in the medications causing these issues, not the drugs themselves. I stuck with the idea of a permeable gut being a physical problem and hoped that a few more months of restrictive eating would offer me the relief I was looking for.
Then I was chatting to a friend one day and she told me that Amitriptlyne (the anti-depressant try-cyclic drug) offers her relief for IBS. And apparently this is because anxiety and stress can aggravate IBS.
IBS, along with anxiety and depression, were the first things the doctors thought of when I started exhibiting symptoms. So this information had me intrigued. I thought back to the time when I got ill and what was going on in my life. I’d had a relationship break down, my best friend of thirty years died, I’d lost almost 100lbs in weight, was over-exercising – and not only that but less than a year before I’d overcome a pretty serious panic disorder that left me agoraphobic. Or, I thought I’d overcome it (the truth was I just managed it).
Suddenly everything became startlingly clear. I had Generalised Anxiety Disorder that was left untreated; this caused IBS to develop which also left untreated and ignored caused ME/CFS.
Bingo. I have the answers to a four-year battle to wanting to know what the heck is going on with my body!
I went and put this theory to my GP and for once in my life he actually concurred. We agreed that if I found a way to manage the anxiety then the ME/CFS symptoms including food intolerance should disappear. However, given I am so allergic to everything I cannot take medication, so this is proving more difficult than it sounds.
I am hopeful though. Because if you track my health from the moment I realised there was a problem until now I am much better. I am doing a lot more. Due to prolonged restrictive dieting my symptoms when they do show up are no where near as severe as they were. While once eating sugar and dairy would have me bedbound, now it just tires me out. Gluten is still as big a problem as it ever was but I have made a lot of progress.
I KNOW its only time until I recover from this thing. I am not letting it have control any longer. I hope that if you have read this whilst having ME/CFS you will take my claims about diet seriously. You might have 101 excuses why you cant follow this diet (I know I resisted it in the beginning) but I think if you do what I did you might be pleasantly surprised. I have assisted a number of people with ME/CFS in doing this and they have all – that’s 100% of them – seem similar results to me. I am not claiming it will cure you and it might not even benefit you but if you want your old life back then its got worth a go, no?
Tell me your story in comments. Have you tried a similar diet and seen results? I’d be very interested to hear your thoughts.