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.
Dr Andrew Wright,
speaking at a Chicago conference in March 2005 expressed that CFS patients
have been subject to unfair judgements by psychiatrists who failed to
watch the research developments of biological scientists, and instead
accused the poor sufferers of having “learned helplessness”
and of having variants of depression.
He says that this
lack of medical knowledge, the associated “psychobabble”,
coupled with ignorance of the rules of semantics, and reluctance of
doctors to go against peer pressure has had terrible consequences for
CFS sufferers.
Until more recently,
the world has lacked adequate diagnostic tools, and this creates a ready
climate for imposition of a psychiatric diagnosis upon any disorder
which cannot be readily explained.
It has been convenient
to make the patient the problem!
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 thinking
Ken 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,)
