Update 11th March 2008

See: ‘The body if it is left long enough in a resting position will slowly get weaker and weaker. ’ – this needed clarification please scroll down for more information.

I feel I should apologise to the whole CFS/ME community for using the word: Brainwashing.

I apologise to Phil Parker for saying that I still think that his Lightning Process suggests that CFS/ME is all in the mind.

I have just received two interesting comments and one email which has prompted me to ‘clear the air’.

I had hoped that the ethos of any of my articles is my own opinion and advice; not to ‘do as I do’ but try whatever the therapy is you like for yourself.

Which is why in any articles where I may be suggesting that I don’t like the therapy, I have gone to the trouble of sourcing the websites and putting in the links so that the reader can find out information for themselves and come to their own decisions. The therapies themselves are getting free advertising from me and I have received little thanks for that.

I find that I am now being criticised for giving my opinion and for bothering to mention what works for me. I like helping people and I am so excited to find a series of aspects that help me, I want to share them.

I think the main word that seems to be getting people’s backs up is the word brainwashing.

The NHS could only offer Graded Exercise Therapy and Cognitive Behaviour Therapy for CFS/ME sufferers some years before to detrimental effects for most, especially those severely afflicted.

But what is coming across strongely to me is that those very programmes (GET and CBT) given a different name and used gently and prescriptively treating each patient as an individual seem to be key to their getting better.

CBT seems to be replaced by NLP. GET by stretches and cranial osteopathy.

I do not doubt the usefulness of NLP. It is an amazing programme and when I was first ill my husband brought home a book about it and we read aspects together.

I think that Ashok Gupta sounds like a darling person and if I felt I needed that type of help I would definitely go to him.

Why did I use the word Brainwashing in the first place?
As a cradle Catholic and then at the age of 13 I wondered what the difference was between being a Catholic or a Moonie (a religious cult at the time).
I then married a controlling person.
Finally I left the Catholic faith because the whole system let me down and couldn’t help me when my marriage failed.
I could not not believe in God, He has/had been my rock but I didn’t know where to go with my beliefs. I joined some ‘born-again’ Christians, although I dislike the label Born-again.
What I have found to be so incredible with my faith is that it is my faith. I do not agree with all my Christian friends and that is not a problem to anyone.

I began to see that life, living in this world with human beings has a brainwashing aspect. Human beings are like sheep, following each other and waiting to be told what to do which is why religions can get such a grip on people.

My Christian faith encourages me to think for myself and make a decision based on what feels right for me.

CFS/ME has no scientific treatment to provide a diagnoses or a cure. Which is scary and so people lurch from one opinion to another wondering which is best. ‘Will someone tell me what to do?’ Seems to be the cry.

The body if it is left long enough in a resting position will slowly get weaker and weaker. It is not good to leave even a weak person in a room with no light or sound – it will make them worse. Look at those in imprisonment that have a sickly pallor. Look at those captured and put into solitary confinement – when they are released they are weak, not just from lack of nourishment but form lack of light, stimulus and adequate movement.

Fear stops the body and the mind from getting up and doing – which is probably part of the reason why the Lightning Process and the Gupta Amygdala training works for some.

I do think our own fears stop us from taking a risk and going one step tiny step further. And hard as this will seem to some, I do wonder if a Mother’s protective instinct encourages her child to remain ill.

(As I write this Britain is being battered by storms. I didn’t want my adult daughter to go to Uni or work incase she couldn’t drive home. I did the classic thing mothers do (well this mother does), I wanted to protect my daughter and keep her safe and I effectively told her to stay at home. Thankfully she made her own decision and went to Uni and then on to work. The weather in our part of the country has had its severe weather warnings lifted although the rain is pretty bad!)

I went on a Outdoor Pursuits weekend pre-CFS/ME and one thing stuck in my brain, we were being encouraged to walk across a tree trunk suspended 12 feet high across two trees, we had on a safety harness and helmets and if we slipped we would be safe in the harness. The instructor told us: Mother’s are the first to instil fear into the child from a very early age. And it is fear stopping you from walking across the trunk. You can hear your Mother’s voice saying Be careful! Don’t go too near to the edge!

This is not to suggest the Mother is wrong in protecting her children but to suggest where fear first starts and continues when we first fall over and hurt ourselves.

Needless to say I couldn’t attempt walking across the trunk. I did do the walking backwards down a 40 foot tower of which I am proud!

When I was first diagnosed with CFS/ME I went into shock. I didn’t do ill. I was Mrs Healthy with Get Up and Go.

I went to bed and cried. It was nice being in bed or on the settee in my nest watching day time TV. It was so good to be able to STOP.

I went to a Nutritionist but after 3 months of a large regime of supplements felt even worse – so I stopped the supplements and stopped seeing her.

I went to a Psychiatrist but I lost respect for his advice when I was told I would be well in 3 months and I needed among other things more serotonin. When I spoke to the Nurse about his advice she had never heard of serotonin supplements and had to go and seek advice and came back with the same – No there is nothing we can do for that.

I tried to do the yoga that had helped some but felt even worse.

CFS/ME people are overloaded. ‘Something’ is the straw that breaks the camel’s back and they get ill because the body caves in.

They just want the world to stop turning while they switch off. I couldn’t sleep at night so I slept during the day when my body allowed me and I hoped that one day I would catch up and sleep during the night, and rest during the day.

I began taking Omega 3 fish oils because I knew from all my training that they were one supplement we needed anyway and it was one supplement I could take without feeling worse.

I was so surprised when my foggy thinking got a little better.

I began taking Calcium as a bio-feedback measure when I remembered that a hair analysis test had shown alarming levels of calcium in my tissues. It occured to me to wonder where that was coming from because I didn’t drink milk, yoghurt or eat cheese. I wondered if it came from my bones and if so why? Were the parathyroid glands on overtime? Would supplementing calcium feed back a message to the parathyroids to stop taking calcium from my bones? It is all supposition on my part because when I asked for a blood test for calcium levels my GP said I had to stop taking the calcium. By then the effect of the calcium had stopped my heart palpitations, cramps and muscle spasms – there was no way I was going back to that. My sleep was greatly improved with the two supplements Omega 3 and Calcium.

I then forced myself to use my legs properly one day. Instead of crawling up the stairs as I had learnt to do because my legs didn’t ache when I got to the top or my heart pound, I walked properly upstairs and was amazed to find I didn’t suffer as badly as I thought I would.

But it wasn’t every day that I felt well and somedays I could do nothing for myself.

By degrees I have found a status quo that works for me. I know counselling or a type of NLP is extremely useful because I do think that CFS/ME people have lost the plot a little bit and we need teaching on how to cope again. We need people to tell us that it is OK to think that or do that. We need reprogramming a little because our state of inertness has made us into zombies.

But I didn’t want any old reprogramming, I didn’t want to go back to Catholic ways or someone else’s idea of a good way to live.

I am sure that Ashok Gupta and Phil Parker basically give the individual permission to do what they want. I feel I have God to give me that permission.

I am sure that Ashok Gupta and Phil Parker would privately want to suggest that God has brainwashed me and they empower the individual to think for themselves.

I feel sure that I can reprogramme myself using my Counsellor friends and God.

I do really feel that this illness has several strands and they all need sorting.

I have taken on board a better diet.
I have introduced some essential supplements.
I take part in regular counselling.
I do some exercise walking the dog.
I do my own stretch routine.
I have changed my lifestyle and do not feel I have to fill every minute. (I can’t anyway and find I enjoy the relaxation)
I use natural products that aid lymphatic drainage.

Now I just want one more thing – the physical therapy – the cranial osteopathy, that Phil Parker uses in his Process apparently, that is one of the pivotal aspects in the Perrin Technique. I now understand more fully the sacrocranial fluid that needs draining and this technique fits with my own training in Remedial Massage so I can’t help but favour it.

I can’t help but wonder if the magic bullet pill – the Lightning Process works for those who only need the, dare I say it, psychological angle?

That angle for me as I have said time and time again has been sorted – I need a physical approach for the hoped for final post.

My husband was ill with flu-like cold at the weekend. He really wasn’t well. I helpfully said: Welcome to my world. His symptoms reflected mine that I have all the time some days worse than others.

No one would suggest that my husband needed NLP or Hypnotherapy to get better. No-one would suggest that he needed to listen to a DVD to help him realise something or other about himself and the way he thinks or views life and therefore he would be well.

I really do think that although the separate strands required by this illness help most to get better that there are two very strong poles that CFS/ME individuals favour.

The illness is either psychologically based or physically based which is why one therapy works for one and not for another. All CFS/ME people need all the strands in varying degrees depending on which pole their particular CFS/ME illness favours.

Therefore psychological aspects have taken route causing physical imbalances or physical imbalances have taken route possibly causing psychological imbalances.