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Monday 1 August 2011

ME/CFS research harassment

Working with Chronic Fatigue Syndrome certainly is very satisfying work. Like every job it has its challenges but seeing people reclaim their lives is so inspirational for me.

One of the aspect of my job is discussing CFS and the theories behind the Lightning Process and also who is it best suited for.

In these discussions I do sometimes hit, not literally :-), people with differing beliefs around CFS, its diagnosis and its prognosis. It certainly is an emotive topic for some. But a recent article in the British Medical Journal highlighted just how 'passionate' some people are, highlighting the harassment extends to people researching ME/CFS and is impacting the research process. It appears that any work looking to study anything but the physicality of the condition is a focus of this small group of individuals.

Lightning Process practitioners are sometimes included in this focus as we look at how the brain and the body interact. It is wrongly assumed by some that because we look at the role of beliefs, language, expectation and other brain related aspects that we must believe that ME/CFS is 'all in the mind' or a psychiatric condition. We do not at all. We see it as a real physical condition AND that we can use our understanding of how the brain and body work to retrain ourselves out of it.

We limit our effectiveness when we discard the role the brain plays in our health.

New understanding of this brain and body interaction are creating entirely new fields of health. 'PNI' (PsychoNeuroImmunology) is a great example of this. Check out a brief overview on Wikipedia here.

We need to break free from the old way of thinking that suggests if we can use our brain as part of the solution to fix it, it must not have been real or physical.

This radio pieces from the UK highlights the current situation:

BBC RADIO - (warning: some strong langauge)

2 comments:

  1. I have a partner with CFS/ME for the past 20 years. She has given up trying now but seems to get sicker with every passing year.

    I'm interested in your approach in particular the PER response. I recently read a book called The Pain Cure by Dharma Singh Khalsa which emphasises the role of the brain and neural pathways in particular in creating or increasing pain.

    I wonder if you have read it and whether you see it relating to the PER response?

    The role of the brain would certainly explain why, despite a lot of research in recent years, a çure'has not been found.

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  2. Hi Scoffy,

    Sorry to hear about your partner.

    Many people I see have been unwell for a long time and get sick of trying new things and give up. But the thing I often tell people is just because you have tried so many different things doesn't mean that there isn't an answer or that the answer is difficult. It just might mean a radically new approach is necessary.

    If others can make a full recovery then there must be a way. So it's about each person finding their answer.

    The Lightning Process is a training so the driving force to put the skills into practice must come from the person taking the training. So it does require people to renew their enthusiasm and belief in a full success and get to work.

    Hopefully the concepts behind the Lightning Process, like the PER and the role the brain plays, make sufficient sense for people to recommit to full health one last time.

    As an aside, studies show that after unsuccessful drug approaches to pain, a person's pessimism will reduce the effectiveness of the next attempt.

    Happy to talk you through the LP approach with ME/CFS and Pain. Just email me to arrange a time to talk.

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