With international
classification, a requirement for diagnosis is duration of (medically)
unexplained persistent or relapsing fatigue of at least six months.
In practice the syndrome can be identified in cases of much shorter
duration.
Features include
FATIGUE which is unusual by its persistence, with:
Poor alleviation
by rest, and post-exertion malaise lasting more than 24 hours.
Impairment
of life activities;
Associated
muscle pain and/or joint pain without arthritis;
Recurrent sore
throats;
Tender cervical
or axillary lymph nodes;
Unrefreshing
sleep;
Associated
new or different headaches;
Cognitive impairments.
These may include short-term memory and concentration difficulties
and difficulty in new learning.
A large spectrum
of other dysfunctions, seemingly covering almost any bodily system.
Most classifiers
have stipulated four or more of the above symptoms are required for
the so-called “diagnosis”.
There seem to be
sub groups where the pain level is extremely severe, or there are significant
gastrointestinal symptoms (overlapping some forms of irritable bowel
syndromes) In some the cognitive problems are overwhelmingly oppressive
to the sufferers.
Some spend unusually
long hours asleep.
Some feel disproportionately
short of breath, and one group tend to have dizziness (the doctor may
find low blood pressure some with postural drop in BP, and some with
ready tachycardia.)
Yet another group
express distress and feeling much worse with changing weather or humidity,
and some experience intolerance of alcoholic drinks, certain foods,
medications and environmental chemicals.
It is clearly of
major importance for doctors to exclude other underlying pathologies.
Guidelines are in
a sense temporary.
The reason that
the CFS guidelines may be unhelpful is related to the inevitability
in medicine of descriptions preceding adequate explanations.
Our explanations
and the subsequent hypotheses, are steps in the processes of testing
for mechanism and verifiable data.
As such, the history
of medicine reveals that scientists are unhappy with a collection of
symptoms being termed a syndrome, and strive to discover causes.
When we do discover
causes or contributory factors, we may “remove” the person
from the guideline definition, but surely that is what we need to do!
We have rather painfully
had to bear psychiatric non-science as its spokespeople have speculated
that CFS may be a psychologically based disorder.
Most CFS patients
hate this!
Of course this in
no way invalidates the need to comprehensively evaluate all aspects
of human lives, but this is no different in all illnesses.
We need to hear
many explanations along the road to adequate medical and health related
therapies.
Be bold enough to
compassionately challenge your doctor as you talk together.
THE EXPERIENTIAL
DIMENSION (life from the inside)
The features described
above are largely subjective.
I am impressed with
patients who are very polysymptomatic and very ill despite the fact
that they are often psychologically robust, highly intelligent and in
general reasonably adjusted people.
Chronic fatigue
occurs in all ages and social groups.
Well what about
the felt experiences of individuals?
The world of
symptoms.
In our lives situated
in our personal experiences we feel many bodily sensations.
There is not one
of us who can avoid times of pain, discomfort, itching, nausea, fullness
in locations such as abdomen, breathlessness, ringing sounds, blurring
of vision, pulsing, throbbing, hot and cold sensations, tingling or
pins and needles, dizziness, unsteadiness and other senses of being
off balance.
When is this not
due to a physical disease?
The medical person
can only experience her or his own sensations, and relies on descriptions
to try to appreciate the sensations of others.
We are trained to
look for physical signs to give us a clue about these sensations
Neurologists attempt
to measure any changes in the neurological examination and back that
up with electrophysiological testing and imaging.
Sometimes none of
us can find the reasons for the symptoms and we often seek reassurance
by seeking a second opinion.
Psychiatrists who
have been concerned to understand why some people seem to bear so many
unexplained symptoms have advanced the concept of somatization.
A detailed description
can be found in the fourth edition of the Diagnostic and Statistical
Manual of Mental Disorders (DSM-IV)
In somatization
disorder, the multiplicity of the symptoms strains credulity that any
disease could have so many strange features, without there being a measurable
finding.
In such situations
one would expect to discover psychological vulnerabilities and adverse
experiences that shape the person’s symptoms and fears.
The health professional
can look more closely at the family background and belief systems, developmental
history, and personality traits.
It is unusual to
not find important factors in these life areas.
Of course anxiety
and depression may manifest in these forms.
A person may report
that she or he has been sick or unwell for most of her or his life.
A person so afflicted
may come with a family person or friend who verifies the illness.
Psycho-social factors
which predispose people to these features, could include parental teaching,
parental example, being rewarded for having symptoms and neglected when
not, avoidance issues, ethnic emphases and explanations that favour
presenting symptoms rather than expressing feelings.
There may well be
genetic or acquired reasons for cerebral mechanisms to evoke symptoms.
Advanced forms of
neuroimaging may well allow a sub group to be identified
Not surprisingly,
it can be difficult to strike the right balance, of knowing how much
testing to undertake and when to reassure the patient (or attempt to
do so).
In particular, the
person may shop around to find a more “understanding doctor”.
Psychiatrists also
identify conditions that are described as “conversion disorder”,
“ somatoform pain disorder” and “hypochondriasis”
Each of these conditions
has characteristics to help understand it.
I pay attention
to reasons why people bear symptoms and as well reasons for misinterpretation
or explanational practices.
As well as seeking
to have open minds about peoples’ ideas, and creating a place to
listen carefully, health practitioners need to be aware that there are
many ways to explain ourselves to ourselves and to others.
We need to be careful
not to get into judgemental positions, as we converse with people and
move towards helpful outcomes.
People seeking drugs
for their own use may be described as “substance abusers”
when such seeking is inappropriate .
Patients who seek
pain relieving or addictive medications frequently find that doctors
are uncomfortable with this prescribing, and this is reinforced by disapproval
at medical organizational and medico-legal levels.
I invite health
professionals and patients alike to have compassion for each other in
this dance towards understanding.
Research does not
support that it is a psychological or psychiatric disorder in the majority
of cases. I will write more on Somatoform disorders in different documents.
as I strive to provide depth and breadth in this material for readers
to consider.
DANGERS IN ASSUMPTIONS
WITHOUT APPROPRIATE EVIDENCE.
The concept of somatization
is interesting and it makes sense that a person may be unaware of some
of the traumatic emotional events that have occurred in the person's
earlier life.
This is an invitation
to myself, and you, the reader, to be willing to seriously explore these
aspects of our emotional lives.
It is said that
one needs to be conscious of a problem in order to solve it.
It also does imply
some willingness to face emotional issues if they are discovered.
As embodied beings,
we must necessarily experience symptoms in our bodies.
In people who suffer
CFS, we can help a great deal by not making assumptions that symptoms
we cannot explain have psychological origins.
At the same time
we are psychological beings and can grow our own insights.
One could ask whether
it would be possible not to be upset, distressed, frustrated or depressed
if one suffered such a fatiguing illness.
We need to say something
about the nature of experience.
We all live in experience,
which is necessarily subjective. (Wilber's upper left quadrant)
Gregory Bateson
wrote, "There is no objective experience".
Groups of people
that we might call "knowledge communities" have consensus
views about matters that are important to them. (Wilber's lower left
quadrant)
The health professional
operates out of her or his personal experience, and is in a good position
to understand that we can easily feel our own symptoms but have no way
of feeling other persons pain or fatigue.
There is a golden
rule, which is as important as "do unto others as you would have
them do unto you".
It is "UNDERSTAND
THAT EACH PERSON'S EXPERIENCE IS AUTHENTIC ".
Another way to put
it is, "HONOUR PEOPLE AND THEIR HISTORIES"
Some health professionals
have contributed considerable distress to CFS sufferers by either not
believing them or acting as if they know better than the sufferer.
Maturana would say
that whatever is present in a person's life is "conserved in her
or his living system, including her or his manner of living, thinking,
feeling, talking and explaining."
Another way of expressing
this is that the living system (the person's life) is already up and
running and continues in it's usual way.
I once heard the
words” If you always do what you usually do, you will probably
get what you usually get! ”.
Wilber directly
describes the necessity for us to go through stages which we can recognise
as being used as a ” present pattern “ by ourselves or others.
Ken Wilber has taken
his inspiring work on understanding the Great Chain of Being
(The Great Nest
of Being) and places the stages and levels of human development in the
Great Spiral as conceived by Don Beck and Chris Cowan.
He states this well
in his book "A Theory of Everything".
There are parallels
between individual stages of development and the stages of the unfolding
of higher levels of consciousness.
HUMAN RESPONSES
and AWARENESS.
Since we have lived
in all of the life stages to the present moment, our repertoire of responses
to life include any response that we have learned (this can be conscious
or unconscious.)
Thus we may revert
to any earlier pattern when this is evoked by life's circumstances.
It requires self-awareness
for us to be less judgemental about things that make us uncomfortable.
For example if someone
cuts in front of us on the road, we can recognise this as a common pattern
and one, which does not need a provocative response by any of us.
Road rage really
represents an immature and egocentric response, perhaps heightened with
the rush and hurry lifestyle that is so prevalent today.
Each of us can ask,
“What would have to be true in a person's life in order for a problem
to emerge in this way or form?”
It is always incumbent
upon doctors and health professionals to be vigilant about processes
which might give sufferers the above features.
This includes a
willingness to re-evaluate the whole picture of each individual’s
health from time to time.
DIFFERENTIAL
DIAGNOSES.
Health professionals
need to carefully consider diseases such as infections, inflammatory
states, collagen and immune disorders and occult neoplasms, nutritional
deficiencies, as well as sleep apnoea, hyper and hypo thyroidism, hyperinsulinism,
Addison's disease, neurological and muscle disease and even multiple
sclerosis. Occasionally metabolic disorders, chemical or other toxicities
and importantly, drug-induced disorders and side effects may be particularly
important.
Special attention
to sleep disorders.
There are many patterns
of disturbed sleep and repeated evidence suggests a role in many chronic
fatigue, and fibromyalgic states. As well there are important metabolic
consequences.
CFS investigations
My approach involves
a look for
(a) Pathogens
(1) Coagulase
positive and negative staphylococci in the nose, (Direct swab and
culture)
(2) Altered gut
flora, (Newcastle NSW)
(3) Intracellular
pathogens, especially the herpes family of viruses, mycoplasmas and
rickettsiae.
Here the difficulty
is that serology is indirect, and PCR and culture are most useful if
we have samples of tissue harbouring the organisms.
(4) Organisms
that produce toxins. Mostly we do not measure toxins directly
(b) Markers
of inflammation.
ESR, CRP, fibrinogen.
(c) Immune abnormalities
T cell subsets,
autoantibodies, cytokine measurements
(d) Tests of
organ function eg LFTs, ECU, Glucose and postprandial insulin levels,
calcium and magnesium levels,
(e) ECG
(f) Endocrine
testing
(g) Special
tests as needed after clinical histories lead me to think of them.
(h) If the person
has an inadequate diet, low exposure to sunlight or hint of malabsorption,
Vitamin D3 levels should be measured in all patients with auto-immune
disorders.
I think that some
doctors have overlooked the many varieties of responses to pathogens.
This choice is shaped
by accurate knowledge of the pathogens, vectors and host, which are
geographically located in the vicinity of the patients living places.
This may need to
be considered by doctors in the light of the difficulty isolating some
organisms from sick people, as occurred in Connecticut in the 1970s.
Children were diagnosed
as having “juvenile rheumatoid arthritis” when they actually
had Lyme disease, caused by infection with Borrelia burgdorferi.
Screening tests
for each of the above are part of physician's responsibility in assessments
of sufferers.
Your doctor may
suggest that some diseases are not diagnosed in your part of the world,
not knowing that data is being gathered.
Ask the doctor to
provide you with the appropriate recent references, or you may ask the
doctor to look at references, which you have obtained, or you may ask
about different paradigms of disease, which reveal multiple determinants
of disease states.
Heaven help us if
we become arrogant and stop looking!
You can ask for
the doctor to provide data such as the number of tests undertaken in
your location, with a breakdown of the results for you to see.
We are also in an
era when there has been a focus upon depression, personality traits,
hypochondriasis and somatization as so called "mental or psychological
disorders".
In every situation
psychosocial issues and personal belief systems are worth exploring.
(Meanings and contexts.)
This is part of
what we can call a "holistic approach". I now take holistic
to mean all quadrants/all levels.
The professional
will do well to have an open mind throughout the whole management of
chronic fatigue syndromes. This means not assuming that any of us adequately
understands the history of a human being.
We can honour people
better when we co-evolve our understandings with them in ongoing conversations.
You can invite your
doctor to honour you and to be willing to be creative in exploration
of the territories of your health problems.
Conversations are
the essence of communication.
One meaning is to
turn together, "con versare".
Listening to each
other is an essential art.
It is one way we
can use to be fully present with our patients and clients.
What we do together
is a co-creation and a co-evolution.
Reflecting upon
what we have heard and asking for clarification is part of medical case
history taking as well as in the ways we talk with each other in everyday
life.
All of this is potentially
available and it is up to you to be inspired enough to make it come
true in your own life!
I experience a sense
of excitement knowing that as I live each day I bring forth my world.
Autopoiesis is the
making of self!
As my friend Lloyd
Fell wrote in his song,
I am an autonomous unity
I am an autonomous
unity
My structure is
very profound
While everything
else is a line to me
To me I am perfectly
round
My history mystery
I will unveil
Believing I know
as I do
This world I bring
forth is my own and I love
Your autopoietical
you
Not hypothetical,
just parenthetical,
Autopoietical
you
