International Classification of CFS

Chapter 5

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.

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,

INTERNATIONAL CLASSIFICATION of CHRONIC FATIGUE SYNDROMES

Chapter 5