Post updated

I am a ME sufferer and it seems to me that the common denominator in most people’s ‘cures’ for ME/CFS is to do with the gut.

My thoughts are that practitioners with cures all seem to be addressing a symptom and not the cause. So if one is being told that the gut is unhealthy one has to ask: Why?

Some give B12 supplements or injections and B12 is made in the gut and one may be anaemic and B12 will help one absorb iron but why is the gut not making B12?

I had a hair analysis test which so alarmed the Nutritionist that I was seeing that she was more ‘frightened’ for my health than me. It showed every system in my body to be malfunctioning. I did try all the supplements that she suggested for 3 months at �100 per month. There were 7 different tablets to be taken 3 times a day and I had to take 3 of each tablet. I felt so ill. After 3 months and no improvements I stopped taking the supplements and felt so much better and decided to sort myself out my way.

Sleep was what I craved. Have you ever been so shattered that you are wide awake? So I slept whenever my body wanted to. During the day – whenever, even if it meant I didn’t sleep at night. I found that when I slept during the day, I slept better at night. Then after about 3 months my body had developed a pattern and I would sleep during the day and the night for about 3 – 5 days out of a week and then would be wide awake at night which was the signal not to sleep during the following day. I then began to pace myself. I had raised myself from total exhaustion to another status. Pacing myself has been a great key and only you can pace to what you want and what you can do. Weekends are always a difficult time to pace myself because my husband is home and I want to cook for him etc, so I tend to be shattered now for two or three days following a weekend. He works away from home so during the week I can switch off and prepare my own ‘funny’ food that is quick and fairly nutritious.

I then felt I needed the Omega Oils simply because I know they are so beneficial to everyone. Vit C is helpful but I don’t always remember to take it. For some reason I remembered to take my omega oils and I began to feel better!! I could think clearer and not so much foggy thinking. I then made myself walk upstairs properly instead of crawling. I used my legs and then would lie down on the bed once upstairs exhausted and in pain and panting. I would stay there for as long as I needed. It worked though because months of doing that I am able to walk normally anywhere.

I count it a blessing that I am on my own with this disease except at the weekends because it forces me to look after myself. Being a mother of 4 and bringing them up virtually single-handed when my first husband left me has also helped my resiliance. And my own Mother’s pride. At 80 and dying from a brain tumour and wheelchair bound – she determinedly stripped washed herself every single day. It was painful to watch her do it, but do it she did.

There have been times when I haven’t been able to get to the bathroom that day and going to the loo can be exhausting. The feelings of exhaustion are frightening, as my heart palpitations and low breathing make me think I am about to expire.

It was the Omega Oils that seem to make me feel like I had turned a corner, not only with more energy but better thinking and less sweating. And then I read that there was a Doctor conducting a study on the effect of omega oils and energy and so I shared my experiences with her.

Evenso with all these ‘getting better’ experiences I seemed to reach a plateau and although felt better never got to the ‘really feeling normal’ days. Would I ever? And there was something else happening. I was getting more tearful and more frustrated when the bad days arrived. I would also feel terrible if I forgot to take the omega oils for more than two days. It made me realise that these were important.

Now with better thinking I looked at my gut. I am a health practitioner and my specialism is massage and exercise. I couldn’t do any exercises as it made me so ill and a friend gave me a massage which was great at the time but again I felt very ill afterwards. But I knew about leaky guts. I have had one for years and have been unable to eat wheat or lactose a protein of milk. I haven’t eaten sugar for years or yeast products but still I wondered about systemic candida. So I put myself on a programme to kill the candida and proliferate the gut with good bacteria. Again this is a nightmare to organise because there are so many probiotics out there, all claiming to cure your gut. There are so many theories that a leaky gut and systemic candida have similar symptoms to CFS and ME that it is very difficult to ignore.

I did feel some improvement as I wasn’t so bloated but again I have reached a plateau with no more improvements.

More recently I have been reading about Lyme’s Disease (from Deer ticks) and similar symptoms to CFS/ME and in this case you need a supplement to kill the little parasites/bacteria in the gut.

Then I looked at my aches and pains and although I have been conducting some stretches when my muscles have gone into spasm or when after 5 minutes of standing in the kitchen cooking or washing up and the muscles were screaming at me, I had never put myself through a complete stretch routine. Now that I can think more clearly, I have put together a stretch routine for myself, for ME sufferers. The results were interesting. I can stand for longer in the kitchen, my aches and pains are less and my neck feels more comfortable. But why are my muscles so uncomfortable when I used to be so flexible? This careful stretching programme does help but I am still looking for the cause.

But I believe a pattern is emerging. The pattern is beginning with the gut. Something has upset it. Something has weakened or challenged the immune system. Because of this nutrients required by every single cell in the body are not getting through and secondary symptoms are setting up.

Muscles need calcium, magnesium and vitamins (the arthritic association say that Vit K from brocoli and cauliflower is missing for those suffering from a form of arthritis where tight tendons are involved). So my question is: is it the lack of nutrition causing tight muscles and therefore aches and pains.

My aches and pains feel inflammed and very hot when I have eaten something I shouldn’t especially a yeast type product like Marmite (I love marmite) or cheese with mould in. I shouldn’t eat cheese anyway.

I remembered my Mother dosing me up with something when I was a child when I felt ‘funny’. She said I was ‘Lousy’ meaning I had some parasites. My mother had been a nurse during the war and she was always dosing us up with some nasty medicine to rid us of parasites. It seems to be an old fashioned remedy these days and one rarely hears of one suffering from parasites but I am beginning to wonder if this isn’t the root cause of ME/CFS problems. Anyone who works with animals not only worms the animals but themselves as well. We all worm our pets but not ourselves. Why? Pets can get worms from their flea bites. So why don’t we worm ourselves?

It is virtually impossible to obtain a benefical bacteria product that actually gets through the stomach wall, that actually has live bacteria in it (they are thought to be dead by the time you get the product), and get a product that doesn’t contain mould and dead yeasts as some do.

An enzyme in garlic, not found in garlic oil, is excellent at killing parasites and bad bacteria and bad yeast such as candida. This I have been taking and have been feeling better. The bacteria also seems to help. It is a stomach acid resistant bacteria called lactobaccillis sporogenes.

Tea tree, neem oil and olive oil are all products which help against parasites and I use these in the oils I use to shower in and in the hair products and handwash products I make for myself. Without realising it I have been using products for years that kill parasites, I just haven’t been using them enough or using products in my gut.

First posted March 8th 2005