Conference '91

This was the first two day ME/CFS conference organised in a rural town by the Lismore and District ME/CFS Support Group

Professor Campbell Murdoch -ME/CFS and General Practice
Beverley Veasey Secretary ME/CFS Society of QLD.- Carer's View
Dr Joachim Flurer - Environmental Medicine

Workshops - Identified Issues and Associated Problems with ME/CFS. by sufferers, carers, and health professionals

Dr Ian Buttfield presented Dr Tapin Mukherjee's work on Red Blood Cell Magnesium Sulphate Treatment

Workshops - Strategies to Address the Issues in Order to Best Respond to the Future Needs of Services and Service Users, by sufferers, carers and health professionals

Survey Conducted by the Lismore & District ME/CFS Support Group July/ August 1991

I've been given the title M.E/C.F.S. Behavior and the Brain. I'm not absolutely sure what it means but it certainly affords reasonable latitude because brain behavior relationships are still fairly primitively understood. My involvement in M.E. or Chronic Fatigue Syndrome began, interestingly enough, with Merle Fullerton whom I saw some years ago and I didn't understand. I was then asked by the Director of Clinical Services, Dr Owen Spencer, to become involved in a departmental response in this area with respect to M.E. and he said "I would like you to come in because I think you're one of the psychiatrists who won't simply say 'it's hysterical'"

I started to look at the literature, saw an expanding number of patients and I'm fairly certain that Dr Spencer was right in his choice.

I would like to show you, having mentioned the first patient with M.E. whom we saw, some tests results. (slide)

This lady is the first patient I've seen so far and with her permission without identifying, of course, I just want to show you some of our computerised tests which I think are pretty typical of our experience with this condition. What they mean, I would have to say to you, is a matter of debate. I think I know what they mean, but I'm quite certain that not everyone would agree and there are very genuine arguments on either side.

THE AUSTIN MAZE TEST

This is a response output from a computer. (slide) It is known as the Austin Maze Test. It is a test that was computerised by two colleagues of mine, Richard Gates and Dr Morrison whom I don't know so well. Richard still visits the unit. We have used this test extensively having about 500 to 600 results now and we have a fairly shrewd idea what happens within our population. The test requires that a person finds their way through a maze. A maze that is presented to them as a series of squares on the computer screen.

It's a 10 x 10 matrix so that there are 10 squares one way and 10 squares the other and the task is to move a cursor from side, the lower left hand side to the top right hand side. The maze path is not visible so that at the beginning, since the person doing the test has no knowledge at all of what the maze looks like, they make a number of errors. That means they move off the path, naturally enough. They don't know where they're going anyway: as you can see with learning, with repeated attempts to track the maze, there is improvement. But as you will see here, there is in this case incomplete learning. A person with full mental efficiency will complete in our experience, and in terms of the norms by about the tenth trial.

Now this isn't a severe impairment of mental efficiency but it is a definite one in our experience.

What does that mean? Well, let's go a little further.

We have computerised tests of attention, concentration and memory and I'd like to show you some more. (slide) This is a battery that was developed in Professor's Lychon's unit in the Maudsley Hospital in London. It is known as the Bexley-Maudsley battery and once again it has been a very standard workhorse in our hands. So that almost any person who comes through the unit who's had panic disorder, any history suggestive of even minor head trauma including acceleration/deceleration injuries, popularly known as whiplash, or anybody with M.E. does this battery.

Where we're dealing with children, we don't use this battery. We can use the maze but we can't use this, but with adolescents we can. So with children with cognitive disorder or attention deficit, or hyperactivity problems, also do the maze. So we have a broad experience. If we were in an academic setting we would, of course, get 500 volunteers to match clinical samples. We're not in an academic setting and we'll leave that chore to those who have research grants and research assistance. Nevertheless, we have a fairly shrewd idea of what happens.

THE "LITTLE MEN TEST"

The first test is called the "Little Men Test", and it was developed to measure among other things mental efficiency in pilots in conditions of oxygen starvation. It simply requires - it's not simple, actually I can't do it properly it simply requires you to orientate a little mannequin which is presented facing you, turned away from you and head up, head down, and the way you determine what you're looking at is the position of the bag or parcel in the mannequin's hand. This is a test of non verbal ability. Not only does it measure correctness of the decision, it also measure the reaction time or the time to make the decision.

There is mild impairment in the head down position. Again that is another reflection of reduced efficiency.

There again is reduced efficiency in the second test in which you have to match a number to a battery of 10 symbols which are presented on the machine. That's a fair impairment actually but it reflects slowness as well. Now we come to a test of sorting out shapes, visual perception analysis, and on this test which is not usually sensitive to minor degrees of impairment you can see that the scores are superior. 111 and 111. There is a fairly definite impairment of verbal memory; spatial memory much less so. Once again on a complex test of ability to determine rule changing there is reduced efficiency.

Now it's not necessary for me to burden you with any more complex results. That which I've presented to you is fairly typical of most of the people who come to see us with a history of having developed a Chronic Fatigue Syndrome usually as a result of some temperature or infection and complaining among other things of reduced efficiency. This if you like, is an examination of brain behaviour.

Not all studies in the literature have found impaired cognitive ability in people complaining of impaired attention/concentration and memory. It may be that they're using different subjects. It may be that the tests are relatively insensitive.

But when you look at the clinical literature it is quite clear that in nearly every episode of epidemic Chronic Fatigue Syndrome there have been many people complaining of impaired concentration and memory.

I would like to read a short passage from review conducted by Acheson in 1959. He reviewed all epidemics that at that time had been reported, and what he said was this: "Emotional upsets reported are difficult to interpret. They vary in degree from relatively slight displays of irritability and impatience to violent manifestations of dislike for people and things formerly liked. A common type of upset consists of crying spells resulting from no known provocation. The emotional upsets of a few individuals are undoubtedly hysterical [remember it's 1959] in nature but it would be manifestly erroneous to consider as hysteria the emotional instability associated with this illness in all cases in which it is present."

THE BRAIN

I attended International Brain Impairment conference 2 or 3 months ago at Surfers Paradise and there were some very, very intriguing papers on brain imaging, looking at the brain in action. We have brain imaging in this town. We have Cat Scanning, but Cat Scanning is quite silent with respects to the kind of impairments I'm talking about. EEGs are fairly weak in their current form, yet there are papers describing high frequency of non-specific EEG abnormalities in patients with Chronic Fatigue Syndrome.

However the paper that caught my fancy most was a paper from Adelaide by Gellen and they are doing work with footballers. They have a very powerful method of examining the brain activity.

When the brain is working, and the brain is always working, but most of our tests don't look at it as a working brain, we look at it as a fairly static thing, but when the brain is working there is electrical activity going on in the brain. If you have an animal and you can measure electrical activity directly on the cortex of the brain and flash a light or make a sound, the brain activates. This is called evoked or event-related potentials. Now there are ways without taking the tops off peoples skulls. There are ways of evoked potentials in man, and with new computerised technology, it's not very hard to do. We are very close to being able to do this in the Behavioural Medicine Unit.

There have been reports of abnormalities in the brain stem potentials in patients with C.F.S. What the Adelaide group are doing, however, is even more ambitious. They're constructing elaborate and very colourful maps Of brain activity, and they can see how it reacts to different stimuli, like seeing what it's doing when a person is doing a complex psychological test like the one I showed you at the beginning.

Now they have demonstrated that footballers who are involved in only a very minor form of concussion who continue to play after a few minutes, one week later have very definite abnormalities in the mapped evoked potentials of the brain. This is a sensitivity that we've never had before. There are also other investigations, of course, things like Pet Scans (Position Emission Tomography) and Radioactive Cerebral Blood Flow and things of this nature, which are probably too expensive to be ever seriously used in vast numbers as diagnostic aids or even as research tools to discover what this impairment of concentration, memory and attention really means. But I see the evoked potential mapping which is now quite cheap technology as adding a very different and new dimension to our understanding and our ability to study patients who complain of Chronic Fatigue and Chronic reduced mental efficiency. Whether or not they have depression or they have Panic Disorder.

I think that's nearly everything I can say at the moment. Well, there's one more thing, a very interesting new symptom questionnaire that has been developed in Iowa by Varney and his group, that they published about a year ago. It seems to be extremely sensitive to mild cognitive, whether you call it damage or malfunction, is another moot point.

Once again, I think this particular questionnaire has a lot of promise in the study of this kind, well recognised because it's been described since Baird, but elusive cognitive impairment or brain behaviour problem.

That's really all I think I want to say, but to sum it all up, I'll quote Baird: "Nervous exhaustion is compatible with the appearance of perfect health. Physical signs are conspicuous by their absence."

However Baird explains such absence by developing the idea of a functional disorder as opposed to abnormality of gross structure. It was never doubted by Baird or his followers that Neurasthenia was an organic disease and that the absence of microscopic features simply reflected the limitations of the contemporary investigative techniques. "It is caused by changes in the nervous system so minute that our present methods of investigations fail to detect them."

Some refinements are necessary. More than a hundred years later we are still in a similar position but I think that now perhaps the refinement in techniques are present both to quantify the reduced mental efficiency and at least to say whether there is a functional abnormality in the way the brain is behaving.

DEALING WITH M.E by Dr Ian Buttfield (extract)

It is the intention in this discussion to try to determine the issues from the M.E. sufferer's perspective and to indicate why and where there may be problems. In addition it is proposed to review why people with M.E. and other chronic diseases need a better interface with the existing medical system.

From the outset it will be emphasised that the medical component of the medical management of M.E. is usually best delivered by the primary care giver, that is the general practitioner but that the real experts in the management of the disorder are you, - the sufferers.

ACUTE VS CHRONIC

From a sociological point of view, disease or illness can be divided into:-

ACUTE, or short term disorders, usually self limiting; eg broken leg, pneumonia, bleeding peptic ulcers etc.

CHRONIC, or long term diseases which are often felt for life; eg diabetes, high blood pressure, and of course M.E.

DISEASE VS ILLNESS

Disorders which make somebody sick can be labeled Diseases or Illnesses.

The term Disease is now used by sociologists to describe the disturbed body chemistry or physiology for example the disease of diabetes is due to a disturbed pancreas which causes a raised blood sugar which in turn induces certain symptoms.

Illness is what you, the client/patient/sufferer perceive, and in the case of diabetes indicates such problems as loss of jobs, or the social inconvenience of having to give yourself insulin injections when you go out to dinner which may be embarrassing so you do not go out.

What is now clear is that if your health professionals is very clever clinically, that is he/she understands the disease that may not be enough for you. If you do not feel your health professional advisor understands your illness experience, that is what the disorder means to you, then you will not feel understood and you may reject his or her advice. In M.E. that seems to me to have been a common problem, does it not?

INCIDENCE OF M.E.

M.E. is felt to occur in about one in every 2,000 individuals and hence is a common disorder, but this figure may be an underestimate and therefore the incidence may be higher. It thus represents a problem of epidemic proportions and new techniques are needed to deal with it. Research is now beginning to show some results but much more needs to be done before we discover a satisfactory response.

SICK ROLE MODEL

As part of an approach to this problem from the clients point of view, it is proposed to discuss the sociological concept of the SICK ROLE MODEL. This is a description (by sociologists) of how the community responds to illness. An understanding of this concept is vital if we are to correctly interpret current attitudes to M.E. and then hopefully alter them.

This (The sick Role) model states that:-

"If a sick person is not responsible for his/her condition,

If the sick person should try to get well, If the sick person should seek technically competent help and cooperate with that help, (and that usually means their Doctor)

Then that sick person is exempt from their normal social obligations."

So what this means, is that if you get the flu you can go to bed and family or friends are expected to look after you, that is you are exempted from your normal responsibilities and others are expected to take on new obligations.

The first question that then needs to be asked is:-

Why are people with a "hangover" not granted the right to have a day off work or go to bed?

Such a disorder is of course seen as "their own fault, - they did it to themselves". People with a hangover on the work force can be more dangerous than those with the flu, so it can be seen that the community views towards illness or sickness can be illogical and even potentially dangerous. One may ask another Question:-

How does this sick role model relate to chronic illness?

Sufferers of chronic illnesses meet all the criteria of the sick role model set out above, yet are not given the same acceptance by society as the person with acute or short term illness. One gains the impressions that society has not yet developed as effective attitudes to chronic illness as it has for acute and this may be because the modem epidemic of chronic disease' has developed only very recently. This problem is well exemplified by M.E. where sufferers are not easily accepted as ill partly perhaps because people with M.E. do not look sick and partly due to ill developed attitudes of society for all long term illnesses.

The epidemic of chronic illness has crept up on us very quickly over the last 22 years because public health, antibiotics, and other new treatments have actually reduced short term illnesses to problems fairly easy to live with, even if you have to have a few days in bed or off work. But as the population ages, as poverty increases, and acute illnesses are reduced, chronic illnesses are increasing as a proportion of the whole.

Sufferers of M.E. are caught in this trap of increasing chronic illness at the same time that acute disease is decreasing. It is unlikely that M.E. is a new disease but is an illness which is becoming more visible.

CHARACTERISTICS OF CHRONIC ILLNESS

Some of the characteristics of chronic illness, are now to be discussed. Chronic diseases differ from acute in a number of ways and some of these are listed below:-

· CHRONIC DISEASES ARE LONG TERM

By definition M.E. is a chronic disease i.e. long term as we don't know how long the process will last- maybe a year or usually for an indefinite period and sometimes maybe for life.

· CHRONIC DISEASE REQUIRE LARGE EFFORTS OF PALLIATION.

In M.E. there is a search for the "magic bullet" which will cure the disorder. Unfortunately, we know of no such "bullet" so we expend much energy in relieving symptoms and trying to make the person as comfortable as possible (palliation).

· · CHRONIC DISEASES ARE MULTIPLE

Many diseases such as diabetes occur in such a way that multiple organs begin to break down. This is not necessarily so in M.E. (although symptoms from multiple organs are usual) but in older people with the problem, other diseases are also common.

· CHRONIC DISEASES, ESPECIALLY M.E. ARE VERY INTRUSIVE.

M.E. can wreck your family, your working life, your finances and take away your dreams and aspirations. Many other disorders will do the same - e.g. diabetes, arthritis.

· CHRONIC ILLNESSES REQUIRE A VARIED RANGE OF ANCILLARY SERVICES.

This is a key issue. Unfortunately in this country those treatment facilities are often found in hospitals only. Ancillary services include services provided by a variety of health professionals including nurses and physiotherapists. Most M.E. sufferers hate going to hospital because the system is often not sensitive to their needs and there are a whole range of chemicals in the environment which can cause allergic reactions.

· CHRONIC DISEASES IMPLY CONFLICTS OF AUTHORITY

The question of who is responsible for managing M.E. the sufferer of the health professionals, is one increasingly frequently being asked. It is clear that the person with M.E. should take responsibility where possible. Health professionals can help with advice but you, the sufferer, live with the problem and must manage it.

CHRONIC DISEASES ARE EXPENSIVE.

This is certainly true for both the individual and the community. Many costs are hidden. There is the cost of not working and having to rely upon a pension. There is the cost of medical care and the cost of trying all sorts of remedies - both orthodox and alternative. Finally, there is the non-financial cost to the individual and family of all the problems and suffering that M.E. brings to the sufferer and their families.

· CHRONIC DISEASES INCLUDING M.E. REQUIRES PRIMARY CARE.

That means ,M.E. sufferers require care to be delivered at the community level. In this country primary care has been diminished somewhat because medical care has been transferred from the community to big hospitals which are now unable to meet the needs of people, e.g. staff can't come out and visit, and the staffing levels are being reduced as the economy slows.

MODELS OF MEDICAL CARE

The final concept I would like to raise with you is about the way health care is being delivered at the present time. There are basically two approaches - the Bio-medical and the Bio--psychosocial models