Living with invisible illness

The first changes to my diet for M.E.

It’s almost as traditional as Christmas to start the New Year with a diet.  So now feels like the perfect time to share some of the central dietary changes I have made (or tried to make!) over the past year to help my body recover from M.E.  It also helps me review how much things may have slipped over the festive period!  Oh dear …… Changing my diet hasn’t all been about denial but truth is, a fair bit has.

Everything I’ve read on M.E. recovery advocates a multi-factor approach.  This has always made sense to me since it’s a multi-factor condition. Whilst I’ve always accepted (but perhaps not abided by) the fact that so much of health depends on diet and nutrition, for M.E. it is central to recovery.  So when I am wondering what’s the point in all this or struggling to resist a tempting treat I console myself in the knowledge that these changes and habits set me up for a healthy life post recovery.  It’s intrinsic to my future health.

There are 5 eliminations and 3ish additions.  I know it seems like a bigger loss but I like to think of the eliminations as an addition to my health, so what’s lost in one place is a gain somewhere else.  It helps me get my head round it when faced with temptation!

Here are the eliminations (and yes I know some of them are not ground breaking but sometimes I need the focus that a list provides):


Coffee pot and cup of coffee

Even small amounts infrequently can stimulate the nervous system making this a complete no no for my sleep issues.  If you are a complete caffeine junkie you might find this one a bit more difficult than me.  Everyone I know that has removed caffeine has told me they feel better for it.  I am not sure if I will stick with this one completely post recovery but it’s such a rare occurrence that I can worry about the benefits vs risks later.

 Replacement = decaffeinated



(i.e.wheat, barley,rye). This is another one that is really difficult for the gut to digest.  The good news is the world has adjusted to the needs of us gluten free people and there are now lots of options (ahem …expensive though they may be).  It takes three months of completely gluten free eating to find out if gluten is causing you a problem.  I plan to come back to the issue of gluten in a later post as it can be more complicated than it at first appears.

 Replacement = gluten free flour/goods (but see my comments below about sugar etc); almond flour, coconut flour, chickpea flour, buckwheat flour



This is difficult for the gut to digest and it is likely to be full of hormones and antibiotics unless it is organic.  You only have to remove dairy for one month before reintroducing it to check for any intolerance/reaction.  I  haven’t had dairy in a year.  Still waiting for my gut to heal before I try reintroducing this one.  I do miss cheese sometimes though….

 Replacement  = Almond/Nut milk, rice milk, coconut milk (but beware sometimes there are lots of hidden additives and sugars in these)


cupcakeSugar/Processed foods

This includes all forms of sugar white, brown, molasses, maple syrup, honey etc.  Hmm this one can be a bit tougher.   Back in the day sugar was also used to preserve food.  Therefore I have also included here any processed foods.  Anything that comes in a packet is processed and most likely has some form of sugar or worse, some manufactured preservative.  If it’s in a packet, sugar or not, it’s processed and therefore not natural so it’s out.  I’ll come back to this issue in a later blog as it also relates to carbohydrates but for now the first step is removing refined sugar and processed foods.  Honey is acceptable at low levels for medicinal purposes (and I mean that seriously as it is antibacterial)

 Replacement = Stevia (but only up to a point…)


If you feel like you need a drink after all that forget it.  It’s definitely on the forbidden list for obvious reasons but also due to the pesticides and chemicals it contains (unless it’s organic).  Most M.E. patients , like me, will laugh at this one.  Alcohol intolerance is almost a given when you have M.E. 

 Replacement = there is none!


Here’s what I had to add in to my diet:

Organic produce

Soil Association Organic Logo

This ties in with the need to remove processed foods.  Organic produce not only avoid all the pesticides and toxins but they also contain more of the good bacteria that our gut requires.  One of the commonly used pesticides is a substance called glyphosate.  This substance when ingested by humans disrupts a process called EPSP synthase resulting in the inhibition of beneficial gut bacteria.  The bad bacteria in our gut is unaffected and thrives.  Learning this was a bit of a turning point for me.  Organic food is so much more expensive because it is so much more costly to produce. I never really understood before the detrimental impact that non-organic food had on my health.

 Benefit = removes toxic load and supports beneficial gut bacteria


glass of water

I suppose calling this an addition to my diet is stretching it since its not really edible.  Drinking a minimum 1-2 litres of water per day with added electrolytes to help hydrate my body made me feel better the first time I took it.  Dehydration causes dizziness, nausea, rapid heart rate and exacerbates many of the common symptoms of M.E.

 Benefit = essential for all bodily functions and helps with dizziness



Animal protein choices


This was a big change for me as post cancer, I was, perhaps, a little obsessed with getting my minimum 7 a day (yes, that’s 7 not 5 a day) at the expense of sufficient protein.  This change supported my body’s deficiency in glutathione, a substance essential in preventing free radical damage.  Fish (non mercury loaded) and lean organic meat are high in the amino acids cystiene, glycine and glutamate that are the precursors to glutathione.  Meat cooked on the bone and bone broth provides collagen essential for gut repair.  Small amounts of good quality organic protein is the key here for me.

 Benefit = supports the liver, detoxification and prevents free radical damage


How did I make the changes?

Slowly!  And I still am not 100% there, even now a year later.  Here’s how I tackled it.

Looking for quick wins.

I looked for something that wouldn’t feel like a big change.  For me there were two – alcohol and caffeine.  I am not a big coffee drinker so going decaff on the odd occasion I drink coffee was easy.  A lot of ME patients are alcohol intolerant and for me this is definitely true so this was another easy change.

Looking for synergies between the eliminations and the additions

Dairy was the obvious candidate for me here.  I used cheese a lot in my cooking for flavour and texture but adding protein in the form of meat, fish etc meant I could offset this.  The other challenge with dairy was my tea drinking habit.  There was a point where I wanted to continue with my morning cuppa until I realised about 20 ml of milk was preventing me from going dairy free.  It seemed absurd not to ditch it.  I haven’t yet found a dairy free alternative that works with tea.  If you have found one then please let me know.  There are plenty alternatives that work well for most other uses e.g. soya milk for a latte  or almond milk for porridge.  I pretty much went cold turkey on this one but 2 litres of water a day took its place.

Identifying my problem

The hardest two eliminations for me are gluten and sugar/processed foods.  There are times when I am too tired to cook or clean.  Toast and jam, toast and marmalade, toast and beans, toast and cheese or just bread and butter are easy and quick to make but are a cocktail of gluten, sugar and preservatives. I realised the problem was about ease and tried a few things to solve this.  Initially I used gluten free alternatives but I haven’t managed to find any that compare with the real thing so have slowly removed these from my diet.  Plus a lot of the gluten free alternatives are full of other ‘nasties’ such as sugar and preservatives. The best alternative I have found is homemade soup.  I make a big pot and freeze it so when I am tired I can easily defrost and heat it.  

Planning ahead

I know that the changes I need to make mean cooking from scratch most of the time.  This doesn’t fit very well with my fatigue so I try to cook dishes that I can also freeze.  Some things don’t freeze that well but if 50% of my cooking goes in the freezer that means I have a fall back for the days that are just too hard.

Being realistic

Finally and most importantly I cut myself some slack. I still find it impossible to stick to this 100% so I relax the rules if I am out or if I am just too tired to cook.  I just make sure it is never any more than 20% of the time.  The hardest one for me has been to go 100% free of sugar and processed food.  This is my next challenge I am now tackling.  Its interaction with some of the infections I have make it a must for me. The harmful effects of sugar on the body are quite profound and well documented.  If I had to pick one of these changes as the most important then this would probably be the one, the calories not only provide no nutritional value but they actually harm the body.  

These changes have been the beginning of changes to my diet to support healing and recovery.  I have made more changes in response to test results.  I will explain more about this in my next blog posts.


What dietary changes have you made to help your recovery?  Which ones were the hardest?  What tips have you got for making the changes?







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