    |
CHRONIC FATIGUE |
HOW DO WE KNOW?
Adventures in human stuckness from biological and philosophical perspectives
When is tiredness chronic fatigue?
PREFACE
In 1977, I was asked to join the Pain management unit at Flinders Medical Centre at Bedford Park in South Australia, principally to help achieve accurate and comprehensive diagnoses in patients who came to the unit with "difficult to manage" chronic pain.
This would surely require relief and healing in the sufferer's life.
I was impressed that this area of medical practice was neither popular with health professionals, nor was it achieving adequate relief for the sufferers.
None the less those professionals are to be admired for doing what they could within the prevailing medical and psychosocial models that were valued at that time.
In time I came to ponder what would need to happen for people who feel "stuck" to some how break free of that which constrains them.
I slowly began to realize that it was not just the patients who were held back.
I remembered the words of Gregory Bateson, "In the world of the living, events take their course or courses because they are restrained from taking other courses."
All of us fall into ways of living, thinking and acting as if we can accept and live with certain patterns and beliefs even when they are not successful.
These ways can constitute traps so that we can become prisoners of our own linguistic conditioning, and inadvertently we tend to be guardians of our old ways of thinking and of explaining things to others and ourselves.
The discovery that in South Australia we have some 8,000 sufferers with Chronic Fatigue Syndromes (in a population of about 1.2 million people in the year 2000) was one factor which influenced me to explore this and allied fields, look at the literature and revisit the basic sciences to understand the disorder as well as the huge morbidity which I saw in the sufferers.The information which follows includes material, which was originally intended for a lay audience, but was then expanded rather stochastically, as I came across material that intrigued me.
This part became more technical, often with implications for therapy.
At the time of writing the results of treatment are far from satisfactory, but I believe that we are turning important corners.
Things are indeed changing!
Recovery in my patients is no longer a surprise!
We now realize that there are probably at least 5, perhaps 6, different sub categories of the fatigue syndromes, such that therapists will need to specify the abnormalities to get the
therapy correct.Both health professionals and CFS sufferers find it difficult to evaluate the many claims made by people offering remedies for the condition.
I want to reach people, and I hope that they want to reach out to each other.
I strongly hope to be thoroughly honest about what published literature reveals.
Many explanations are offered, yet very often ideas stem from small pieces of work by only one author with conclusions not yet evaluated in a scientific way.
The decision to explore these fields of learning and human exploration has been incredibly rewarding.I feel I have been refreshed in my thinking and philosophies, and have a renewed commitment to the ever-continuing learning that is embodied in the scientific method.
I would like to convey this enthusiasm to readers.
You are entitled in your humanness, to open your mind to the two kinds of truth.
The truth of science is the reliability of that which stands up to test after test. We call this "objective", in that its validity is used to make it possible for your house appliances, motor vehicles or computer to work time after time.
The second kind of truth is to do with an integrity which does not hide behind dogma, but with courage faces the field of the intersubjective domain with compassion and recognition.
In this domain, it is critical to consider that what is in any human life, is the conservation of information that somehow endured in that person's belief system.
I have been inspired by the people who have suffered not only through their illnesses, but also through the unwillingness of health professionals and other people to believe and support them.
Often, all we need do is be fully present to them. It also helps to be present to our own experience and genuine in our feelings. Living our own truth helps create the space for the other person to live theirs.
"The first duty of love is to listen."
-- Paul Tillich
"With the gift of listening comes the gift of healing."
-- Catherine de Hueck Doherty
One purpose of the material presented here is to invite skeptics to re-evaluate the rich information that is now available.
The document also presents some material that is basic textbook type information, so that those who have a small acquaintance with science and biology have a chance to have this information without having to find such a textbook.
Why will I present the reader with so many mechanisms?
Principally because the group of symptoms that we now call " chronic fatigue syndromes," will have many mechanisms, some of which are particular to specific participating and causative factors.
Indeed there will necessarily be common mechanisms applicable to all fields of medicine.
This is indeed an exploration," to leave no stone unturned!"
Rather ambitiously I will include chapters on our human ways of knowing.
This also embodies a philosophy of approach that addresses epistemology appropriate to the full range of human endeavours.
For those who want much more detail, the expanded information is being continually revisited and revised.
They will themselves seek information in all the ways they wish.
The reader is invited to respond in whichever ways seem most appropriate.
Somehow human beings have been on journeys of discovery and invention aroused by an intense curiosity about all unsolved matters that they encounter.
Unfortunately world gross expenditure on weapons and the systems that support them has gravely decreased the wealth available to solve health problems.
I find myself as a member of a peace seeking and curious band, and invite you, the reader, to be as active as you prefer in these learning adventures.
This is an invitation to increase your self-awareness.
Entering into conversation with other seekers has always been a means for our intelligence to emerge as wisdom.
Creativity matters and we all can have it.
By all means be thoughtful, and even sceptical, but beware of the scepticism which prevents advances being available.
In modern usage, "sceptical" seems to mean "doubting" or "needing lots of proof", but I am reminded that the word sceptical comes from a Greek word "skeptikos" which means "thoughtful," whereas the Latin word "scepticus" may be closer to "inquiring, and reflective".
Let us encompass all of these meanings, as we explore any mysterious problems.
"Come, let us think and reflect together!"
There is an urgent need for consistent, coordinated and financially supported research here in Australia, but for those who are already doing this work, I offer my gratitude and support.
John Graham July 2005
top ^