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CONVERSATIONS IN THE FACE OF DIFFICULTIES |
Chapter 2
Supposing one of us is exhausted, in pain or other kinds of distress, what is the other to do?
Chronic fatigue syndromes (CFS) have presented a very difficult dilemma for both sufferers and health professionals.
This is changing!
Straus made an overview in 1994, but many advances have occurred since then.
Straus initially thought glandular fever type illnesses explained the disorder, but later seemed persuaded by psychiatric literature and felt it was a psychoneurotic condition.
Perhaps there is still a majority of psychiatrists who hold the view that these syndromes are some kind of psychological disorder.
Anthony L Komaroff MD, Associate Professor of Medicine at Harvard Medical School, and a clinician, has been a consistent reviewer of the literature and a major contributor to understanding of CFS.
Paul Cheney PhD, MD is another clinician with great commitment to the understanding and management of these disorders. He is convinced that there are measurable physical and chemical changes that prove the physical bases for these disorders.
Recently exciting findings are coming from Drs Kenny de Meirleir and Jo Nijs in Brussels, Belgium with their research leading to a book on the biological basis of CFS.
Dr Trevor Marshall in California has recently culminated years of work with a renewed look at the variety of micro-organisms that by evolution, in concert with all life, have emerged in strange and varied forms. (See" Marshall protocol")
There is amazing variation in microbial size as well.
To study these strange and elusive forms of bacteria, which we can call L forms, is difficult and requires microbiologists to understand structure and function as they try different magnifications up to 10,000x along with many different stains as well as techniques such as immunofluorescent methods.
Thus a fresh search at diseases of" unknown cause" is revealing hidden causes, and more participating mechanisms.
Rather than giving you, the reader, an endless list of doctors who have given such sterling support to their patients, I mention the book "Osler's Web" by Hillary Johnson, which is a detailed and historical account of one journalist's depth probe into the work of those seeking to understand CFS.
But this book (1994) ends with solutions glimpsed but not fully explored!
More of this history is being unfolded as I write, and I look forward to discovering how it can be used with thoughtfulness and balance.
I will write extensively about nourishment and support of our bodies, and I will intersperse these pages with molecular and biochemical descriptions, for those who want a little more detail.
And we will take much more detailed exploration of micro-organisms.
Other readers may want to skip such sections.
If we skip too much there is a risk of not grasping concepts adequately!
In an era of considerable scientific sophistication it has taken a long time for health professionals and scientists to explore this disorder beyond what we could call "standard history, examination and laboratory investigation".
History informs us of many, many disorders where finding a pathogenic agent or altered immunity or molecular chemistry has been elusive.
I believe that we need to face the unknown with intelligence, openness and preparedness to explore the totality of what constitutes human life, health and illness.
Particularly important is the notion of not blaming the victim.
When measurements don't reveal reasons, we should be very wary of assuming psychological explanations.
In fact we can take responsibility for our own lives as we invite others to converse about things that matter.
INVITATIONS TO RESPECTFUL LISTENING AND THINKING.
Socrates revisited.
What we have been facing in this descriptive territory of this writing is the human possibility of examining how we think in order to embark upon problem solving.
Socrates was so impressed with the fruits of examining our thinking, as to dare to talk directly with the citizens of Athens about beliefs and "realities".
He placed great importance on the "examined life".
As we live each moment in our "personal reality", how much access do we have to other peoples' realities?
If we created conversational space for gaining such access, might we be able to lessen the horrific conflicts that are seen in the current clashes of ideologies and fundamentalisms that are so clearly giving rise to human and ecological destruction as I write.
In the Australian Broadcasting Commission radio program," Encounter" on 14th November 2004, a class of 8-10 year old children from an inner Brisbane school are heard discussing "what is real?"
What an eye-opening and inspiring experience it brought forth to any fortunate listener!
These children from various ethnic and social backgrounds are able to honour each other, listen to the ideas of others and venture their own ideas, with a loving, respectful and thoughtful teacher.
What a contrast with the repetitious and often useless haranguing of the Australian Parliament in session!
With opportunities to revegetate a run down and neglected adjacent creek, these children are introduced to and travel along a diverse journey of botanical, biological and philosophical adventuring.
Supposing that the children's classroom opportunities were to be introduced to courses like the MBA!
Is it fanciful to hope that the oppressions of economic rationalisms could be diluted and even replaced by enlightened ways of living and working together in a newfound world of treating each other well?
I invite you to say, "Let it begin with me!"
Could this lead to re-evaluation of claims about any area of knowledge?
There have been so many claims that we need to get used to the idea that many explanations will emerge as inadequate or incomplete, and yet still may contain something useful within them.
The challenge may well require people with diverse perspectives and depth information coming together for comprehensive and open conversations leading to collaboration and the best book ever to be written in this field.
Who could be included in this imagined and visionary document?
Medical and biological experts would be drawn from the fields of genetics, biochemistry, physiology, molecular biology, microbiology and immunology.
Specifically experts in neurology, imaging, neuro-endocrinology, toxicology, environmental medicine, and ecology would converse with others versed in biophysics, nanotechnology, cybernetics, communication and epistemology.
Overviews would come from clinicians who are comfortable with the idea of revisiting basic sciences as well as the cutting edge of medicine.
How good would it be to discover a willingness to attend to thoughts from patients with all varieties of the condition, and to enact forums that promote and create inclusiveness in discussions?
The future also involves versions of the work for documents, e-mails, tapes, CDs and DVDs.
THE APPROPRIATE PARADIGM
I have long searched for big enough frameworks to encompass all the ways that we bring forth as we live our lives.
The hope is that when we examine our own ways of thinking or performing life, we will be aware of our experiencing, languaging, explaining and particularly how we actually do what we do.
Ken Wilber's extraordinary thinkingKen Wilber is an American philosopher who has looked in such depth and care at the history of human emergence as to make the most coherent and potentially integrative framework for utter fullness of our lives.
I, like Ken Wilber, can see more broadly how our modern conflictual dilemmas fit in the evolution that never ceases.
There is an emerging paradigm, which is appropriate for many diseases that have been eluding our attempts to understand mechanisms.
Science is committed to the study of mechanism. (See later, Wilber's right upper quadrant)We have probably witnessed a failure of biologists to communicate basic biology to people. (Or more broadly, adequate information about what exactly is categorized as science.)
More seriously, many of my patients convey to me that they never really learned any biology at school.
In essence, as many as 45% of Americans through their adoption of "fundamentalist" Christian beliefs, deny the existence of evolution.
At once I write that in a way this is inevitable. Its representatives repeat the themes of various cultures. (Trust a tradition and accept a patriarchal system for its teachings on how to live)
What would have to happen for people to be able to evaluate their own positions?
How can people assess evolution for themselves?
How do Christians critique the Bible?
How do Moslems critique the Q'oran?
Since evolution is a property of life, some people seem not to know that they are living in contradiction.
Not only is the evidence for evolution overwhelmingly strong, but also there is no evidence for absence of evolution.
Biological data is repeatedly verifying every level of evolution, and the reader will read much of this in the pages ahead.
Later in this writing I will refer to ways where such people can consider ways to honour their ethical and faith traditions as compatible with the ongoing learnings of science.
I would like each of us to consider just how basic and grounding is our commitment to life and the domains of it's existence. (The biosphere,)