Guest post: Why food & supplements aren’t everything when healing ME/CFS

Learning diet & supplements weren’t everything

Don’t get me wrong, the food we eat is a vital factor in our health. But it is not as simple as I once thought. There are other factors which are just as important (if not more) than the veggies and the herbs.  

When I became very unwell with ME/CFS & POTS (postural orthostatic tachycardia syndrome), Western medicine offered me very little, and only looked to put a plaster over symptoms. 

Functional medicine broke down every aspect of my body that wasn’t working optimally and gave me a million supplements and restrictive diets to follow. This left me feeling even more broken, overwhelmed, and even more afraid to be in my body. 

I was so sick, and so desperate to start feeling better that I would’ve done anything, and this whole situation really exacerbated my perfectionistic, over-achieving patterns (which most people who develop CFS have).  

I was taking up to 50 supplements a day at one point (a situation I’m sure is familiar to a lot of people reading this).

I felt like every meal I ate had to be the most nutritious it could possibly be, or I was failing and would never feel better. Every time I saw a new diet, supplement or treatment protocol, it felt like something I had to do. 

When you’re bedbound and can hardly even string a sentence together, this is a lot of pressure.

And this pressure was still completely subconscious to me.

I was already so afraid of symptoms and of being in my body. When I then learned about how almost everything around me could be in some way harmful to me, it only made things worse for me. Combined with perfectionism, this was a recipe for a huge amount of internal chronic stress, and therefore more nervous system dysregulation and chronic symptoms.

I became so afraid of so many foods and household products that I wasn’t even reacting to to begin with and started to head down a path towards orthorexia.  

Unfortunately, many health professionals don’t take the “nocebo” effect into account when working with people.  

The nocebo effect is, essentially, the opposite of the placebo effect. Instead of healing occurring from a sham treatment a patient believes in, there is a deterioration after a neutral or effective treatment is administered because the patient believes it to be harmful.

For example, I was told by functional doctors that “gluten is inflammatory, period.” I internalised this belief, and if I ever ate anything that had some gluten in it, it was all I could focus on, which switched on my stress responses, and I couldn’t help but imagine the inflammation levels rising in my body. Hence, the nocebo effect. 

Human beings have been consuming gluten for tens of thousands of years. And a lot of gluten free alternatives are filled with weird ingredients that have their own controversy. But also yes, white sliced bread from the supermarket is not the same as proper high quality sourdough with only 3 ingredients: flour, water and salt. My point is that it’s not black and white. 

What you believe about food has a direct effect on your health.

For example, the famous mind over milkshake study: where one group believed the milkshake they consumed was “indulgent”, the other group believed it was “sensible”. There was a dramatic difference in hormone response between the two groups in response to the exact same drink. 

The takeaway for me is, use the placebo effect to my advantage where I can — or at least, don’t let the nocebo effect impair me. 

I eventually stopped taking almost all of my supplements on the advice of my acupuncturist and slowly started relaxing my diet, and I actually felt a bit better. Probably partly due to the relief on my liver from all the supplements, and partly because I felt I had started to give myself permission to not do it all perfectly, and I would still be okay in the end. 

The state and intention that you approach any healing modality from is the most important thing. 

Even approaching mind-body tools from a state of urgency and perfectionism will only further dysregulate your nervous system. Your healing practices, generally, should feel good to you! If they are making you feel more stressed, it’s time to reevaluate. 

There are lots of examples of people attributing most of their healing to diet changes, but what I’ve noticed is it’s usually a change they decided to make themselves, a change that empowered them. Not something someone told them to do, or felt scared not to do. 

Feeling empowered creates healing far beyond the direct effects of food.

So back to me, diet wasn’t a huge factor in my healing, because I already had a good understanding of nutrition, and grew up cooking balanced, nourishing meals at home. The diets I was prescribed by doctors only made me miserable, as I felt so restricted, zapped of joy, and scared.

At one point, all I could eat was plain vegetables and meat. I felt like every stray from eating ‘perfectly’ would set me back. 

This simply isn’t true. It’s the things we do consistently over a lifetime that really count, not trying to be perfect every day, at every meal. No fad diets, but eating mostly whole foods, getting your macro and micro nutrients, shopping mainly around the outer aisles of grocery shops, and buying as high quality as possible, most of the time. And usually, a food first approach before supplementing. 

Establishing a proper relationship with my body has also meant that I can eat intuitively. I know how to properly nourish myself, so that I hardly ever crave sweet treats, but if I do I will indulge because pleasure is also a part of health! And being scared of these things isn’t helpful either. 

Ultimately, there was never going to be a perfect diet, supplement or external thing that would heal me. I had to turn inward. 

Yes I was eating my greens everyday, but I had no joy, no creativity, and didn’t feel good enough for the life I really wanted. No diet will heal these things. 

Rewiring these perfectionist, overachieving, people-pleasing, and pressure patterns in my subconscious mind has provided the greatest healing.

Now I am at a place where I can approach nutrition, herbs and supplements from a place of self-love, self-care, fun and nourishment for myself and my body. Not from a place of fear, desperation and rigidity.  

And I know I am okay either way. This has made all the difference to me.  

You can follow Mia’s journey on her Instagram here. Nothing shared is medical advice nor meant to contradict what you yourself have discovered to be true.