Trigger Factors

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Psychoneuroimmunology is really a very old concept but with advancing ability to analyse the immune response, it has relied upon new techniques to look at immunological responses in various situations.  I am sure it will not come as any surprise to you to hear that people who have been under emotional stresses,  are run down or mildly depressed, may be unfit. It is suggested that they are also more prone to colds or viruses and that when people are ‘run down’ they get everything that is ‘going around’.  Other people when they feel that they are emotionally strong and physically fit will say ‘touch wood I haven’t had a virus infection for years’.  Going back a great number of years there was a very interesting study done on a group of workers in America that, if I remember rightly, worked for a large car making company.  All of the workers were studied psychologically and the Psychologist and the Psychiatrist doing the work predicted that if there was an outbreak of a virus, some of the workers would be ill longer than others. The ones that they predicted would be ill longer would be those that had high symptom reporting on other illnesses like back strain or infections and also those that may have had a previous depressive type illness or depressive type situation.  There was then, fortuitously it seems, an outbreak of flu in the area and, following the prediction, some workers with these predisposing traits were ill longer than others that didn’t. Thus the psychology of the patient determines how long they are going to be ill and indeed how ill they were during that outbreak.  For instance some patients who have had these types of traits have also been studied when they have had hepatitis and not only are they ill longer but the actual level of liver enzymes, (in other words the amount of damage to the liver), was found to be higher and remained so for longer. Therefore our personality definitely contributes to the amount and the degree of illness that we suffer. 

Coming back to C.F.S.,  I have seen quite clearly that the vast majority, probably 99% of everybody that I have seen up to now has had a significant history of negative stresses and pressures prior to their illness process and, furthermore, that these negative stressor factors are often multiple.  They are never positive, they are always destructive and last for quite long periods of time. I haven’t seen anybody who has been under negative stress for just a week or a month getting C.F.S.; the pressure is usually six months, one year or sometimes lifelong. It is especially likely that the pressures will have been lifelong in those that have had C.F.S. on at least one occasion before and who have made a greater or lesser recovery from the previous episode.  I am also totally convinced that when you get C.F.S. occurring in more than one member of the family, then there is a significant family dysfunction.

 It is most important to identify the negative stresses and establish whether these still exist. If they do, then they need to be removed if at all possible because if they continue to exist they will inhibit the recovery process of the patient.  

 What sort of stressor factors are we talking about? 

 In children the stressor factors are multiple, they nearly always include a combination of:

1.                 As you will see elsewhere (and this is agreed by all informed observers) the illness occurs more in women, and there is no doubt that in the patients I see who are thirteen, fourteen and fifteen the pressures of being a young girl seem to be much greater than those of being a young boy.  There are, of course, the enormous pressures within the body of adolescents - rapid growth, rapid change, surging hormones.  Girls in my observation are very stressed within their peer groups; there is constant bickering, friends come and go and girls seem to backstab each other a lot more than boys.  There is of course within this situation some degree of bullying, certainly hassle and aggro, which I would imagine would be normal for all adolescents.  If, on top of that you have other stressor factors, then of course the pressures become very great. The sorts of situations that I have seen are those where the sufferers are perfectionists; they want to do their homework properly, they want to study hard at school, they want to get it right and they want to get it 100%.  Such things as essays tend to be longer than I think would be necessary and some children just cannot seem to get themselves to cross a word out if they have spelt it wrongly and so they do the page again (this is where a computer with spell check might have come in more handy). 

Academic pressure can come from all sorts of directions. There is the very academic school where high expectations are not covert but openly advertised.  Thou shalt do well!  Thou shalt get A*s, not necessarily for you but certainly for the school. I remember one boy who had got C.F.S. and I reduced his curriculum down to six subjects. He was at a local grammar school and he got six As which I thought was absolutely excellent. However, he was publicly told off by one of the masters because they considered him to be an A* student and he should have got A*s. 

I have seen children who have pressurised themselves, and children who have been pressurised openly by their parents, to do well at the 11+ or Common Entrance and to work extremely hard in order to get through the exams. Then, of course, if they are not naturally bright enough to get these exams comfortably and have to work so hard to achieve passes, they are going to struggle at the grammar or other secondary school.  I have seen children who were intellectually not very bright and they were struggling in a secondary school without having their problem detected. 

Then of course there are other severe stressor factors when children are bullied at school or at home, or are physically, mentally or sexually abused. All of these stressor factors make kids ill. 

Adults of course have many of the same sorts of problems as children but in addition there are problems at work. People are made redundant, bullying at work is very common or the patient is in a long term job that he really doesn’t like at all.  There are also of course  the stressor factors within unhappy relationships. 

There are as many stressor factors as there are patients suffering from C.F.S. 

In many cases with that powerful tool the retrospectoscope you can see C.F.S. coming. Patients will often tell you that prior to the actual acute viral precipitating illness process they were feeling run down, physically they got more tired than usual, they were not sleeping as well as they used to and that they had started to feel unrefreshed by sleep.  They, of course, appreciate that they are returning every day to the same negative pressures and it is like banging your head against a wall; you are bound to get a headache. However, what people do not realise is that by continuing to expose yourself to these horrible pressures, not only do you suffer the symptoms of long term exposure such as headache, sleep disturbance and not feeling well, but one day you are going to make yourself seriously unwell with C.F.S.

 It is very common for me to find with patients that there is a well-established pre-morbid pattern of increasing ill health, and then one day they go down with this virus, which is the trigger.  Of course there may not be a viral precipitation and that is the situation that you find in the slow onset M.E. and in Fibrositis Fibromyalgia Syndrome. Here there is also a long standing history of the same sort of pressures where they are outstandingly present for much longer periods of time, and during the majority of which the patient copes with them.  In such cases personality traits seem to be very distinctive. People with these types of illness are often worriers as well and they have a lifetime of anxiety often inherited from one or other or both parents.  They also tend to be more obsessional, they like their work done precisely, they are very pernickety and very precise but can manage it. They control the situation, trying to hang on to the problems that develop as a result, and I am sure then the increasing stress starts to produce the same abnormal immunological processes as are seen in the acute variety of C.F.S.. However, the stress tends if anything to cause more in the way of muscle pain and I believe that this is the result of chronic increased muscular tension (especially in the back of the neck), pressures in the back of the head with headaches and joint pains. Irritable Bowel Syndrome also is common and is, of course, a stress-related condition in its own right.

 There are other things that are known to cause C.F.S. Again, I think that in the vast majority of cases these trigger factors are also associated with people under pressure and negative stress.  I am going to list Predisposing Factors from the C.F.S./M.E. Working Groups Report of January 2002 . In my experience I have not seen some of the trigger factors that they mention, but I will comment on those that I have seen a lot of and put them into my context.

 Under their section 3.3.1 – Predisposing Factors:

 1.            Gender

I agree that the incidence in females exceeds that in males of any age group.  In my experience it is much more common in women than in men with a ratio of 3:1, and that would be counting all of the patients that I have seen over the last fifteen years. 

 2.            Familial 

I have already said that if there are two people within the same family with this illness then there is a family dysfunction of one kind or another.  I understand that twin studies have suggested a hereditary component but I do not agree with that; I think their family environmental factors are the illness precipitators.

 3.            Personality

I don’t think I have got anything to add other than to say what my own personal feelings are.  The Working Group says that there is evidence both for and against the possibility of certain personality traits pre-disposing to this illness, and I am sure that, generally speaking, the people that suffer from this illness process are people who like to be precise, high achieving and are worriers and  self pressurising.  (I have commented further with my own views on personality traits in ME/CFS further on in this article.)

 4.         Other Disorders

I agree with the Working Group’s feelings that past and current history of other disorders are particularly common factors as I have mentioned above, particularly that of a long standing history of irritable bowel syndrome prior to the onset of their acute onset of C.F.S. or the slow onset or of Fibromyalgia Syndrome.  To this I would add that patients, prior to them becoming ill, find themselves quite frequently subject to much more in the way of viral type infections, colds, being generally run down and sleep disturbance.

 5.            Previous Mood Disorder

Again I would agree that most, if not all studies, have found a history of mood disorder prior to the onset of this illness. Anxiety, worry, low mood are particularly common especially in those with a history of depression in the past, again reflecting almost certainly long standing negative stressor factors in depression as well. 

In Section 3.3.2 I agree with everything except references to environmental toxins. I am not suggesting for a moment that environmental toxins do not precipitate this illness as a trigger, but it is just the fact that in twenty years I am not sure that I have seen more than one case, so from my point of view it is extremely rare.  The commonest trigger in C.F.S. is that of a history of some kind of process that suggests a virus type infection.  The commonest from my point of view would be that of a non-specific flu-like illness where the virus itself is never tracked down, but as you will see I argue elsewhere that there is in fact no virus at the onset. In many cases it is abnormal initial immunological response, but it is quite clear that a glandular fever type illness is quite often the trigger factor and that Epstein-Barr Virology, specific and non-specific, can be seen to be present at the onset. But again as you will see elsewhere I argue that this is reactivation, and if there is an Epstein-Barr virus and initiator and trigger, that this again is stress related. So, other than non-specific flu-like illnesses and glandular fever, I have come across a great number of different suggested viral triggers including viral meningitis, encephalitis, hepatitis, herpes, enteroviruses, chicken pox and shingles.  At the bottom of the infections trigger paragraph they are suggesting now that “available evidence suggests that abnormal persistence of infectious agents does not occur in C.F.S./M.E.”. Whilst in 1985 through to 1990 I would have said that infections are persistent and are a persistent cause, as you will see I have changed my view and entirely agree that there is no evidence that a persistent virus infection is present, and if it is, then it is not pathogenic.

 Immunisations

 I have found a few people who have been made ill by immunisations. It is not a huge number, and I would never go as far as to tell people that they shouldn’t have immunisations, just in case. However I suppose it may be sensible in the future to consider whether those doctors and nurses who are giving immunisations ought to raise the question as to whether there are any significant stressor factors going on within this persons life before they give vaccinations. I just don’t know quite how practical that would be. 

I have however seen a few, (probably about twenty in ten years), whose illness of C.F.S. was getting better until they have some kind of  vaccination during their illness process.  They may have had an influenza vaccine to prevent them from getting another attack of flu, they may have had a tetanus or a typhoid vaccine and in one or two cases a B.C.G.  In this situation I have seen people really seriously set back, and in a few  cases so severely that I have not been able to get them better.  I can think of half a dozen such cases.  I have, in the last six months, gone so far as to advise patients not to have any kind of immunisation when they are ill with C.F.S. unless it is absolutely essential.  With the exception of a tetanus vaccine I don’t know that any immunisation is absolutely essential. However, if somebody really becomes a tetanus risk then they could have a passive vaccination of the tetanus antibody and this does not upset them.  As I am sure you know the commonest vaccination for tetanus is to give a tetanus toxoid which is an injection that stimulates your own immune system to make an antibody. This is called an active immunisation whereas the tetanus antibody is a passive one. It works very quickly and would be perfectly reasonable when a patient is a very serious tetanus risk.

 Life Events 

Here I entirely agree, and as I have mentioned already, major life events (especially those that are negative) are predisposing factors particularly if those life events are sustained.  I haven’t come across anybody who has been made ill simply by the obvious devastating death of a relative, even a close relative. However I have seen several people, especially children, who become extremely anxious and distressed when several members of their family suddenly depart, or indeed where they have a major life crisis such as the diagnosis of cancer or a heart attack, which then is life threatening. Of course the members of the family become very worried and anxious and they would be the ones that become ill with a C.F.S., not necessarily the person who has had the heart attack.  Again, however, you will find that the people who get anxious and worry about their family member’s illness will be those who worry most in general.  Those people who suffer extensively from these major life event situations will often have a long standing history of anxiety of being a worrier, concerned about other people more than their own health.

Physical Injuries 

I personally probably haven’t seen more than one or two people who have been made ill by a specific physical injury but I have seen quite a number of people who were made ill after an operation of some kind. Again, the predisposing negative pressures apply and the anaesthetic and/or the trauma of the operation itself, or of any major post-operative infection, will be the trigger.

Generalised Infection

 Whilst there is no “Specific Trigger” paragraph in the Working Group’s report, I would have included a specific paragraph.  I have seen a great number of people who have been made ill by specific bacterial infections such as amoebic dysentery, gastroenteritis with salmonella, and those with acute chest infections. But again, there is usually a previous history of a minor cold going on to become bronchitis and pneumonia.

 Environmental Toxins

 As I have already indicated the Working Group have included a section specifically for this, although they suggest it is ‘not a common or widespread trigger’. I would say that I have only ever seen one case (out of around three thousand patients) with this condition. I would say that qualifies it as “rare”.

Others

The Working Group has not included a section on specific end organ infections.  By this I mean a specific diagnosis of a virus infection causing something that is not just simply a flu-like general infection, but a specific infection of an organ, (what is generally termed an ‘…itis’).  These sorts of infections are not very common in triggering C.F.S. because on the whole they are not stress related. They would include something like a virus attacking the thyroid gland, which would be called a thyroiditis.  A virus attacking other organs such as hepatitis, viral meningitis, viral encephalitis and pancreatitis are much less common triggering factors, although I accept that they certainly occur.  Some of these would not be associated with negative pre-morbid stress.

You will now also note that I have not included any of the well-publicised epidemic forms of this illness process.  There are of course many medical reports of a worldwide nature where viral epidemics of various types of viruses have infected hundreds, thousands and indeed even tens of thousands of people within a specific area and population leaving a certain number with an M.E. type syndrome.  This most historically is seen in a booklet termed ‘The Saga of The Royal Free Disease’ by Dr Melvin Ramsey.  I really don’t wish to comment on this illness process as I have not seen it or observed it and would take counsel from the various authors and historians of this illness. But let me say that if this illness process is looked at it has got nothing to do with the epidemiology of the sporadic case which is what I am talking about. 

This then covers all of the pre-disposing factors and triggers. The Working Group go on then to discuss the maintaining factors, and I agree with all of those, but I will go into that elsewhere.

What I would like to return to now is the dynamics of stressor factors on our immune response.

As a philosophy we are, of course, people that come from and are created by our brains.  Our consciousness, intellect, human features and personality lie, we believe, mainly within our cortex.  The deeper and the older parts of the brain are shared in common with most other mammals (and a lot of other living creatures who have central nervous systems) and they work in remarkably similar functioning ways. 

Our bodies are effectively designed to feed our brain with food and oxygen, look after it, protect it, propel it around and reproduce it.  Our bodies are not part of our personality. Whilst it is, of course, upsetting if somebody chops your leg off, it is not likely to alter you as a person, unless of course it affects your ability to cope.  The same cannot, however, be said to be true of the endocrine and the immune systems.  Endocrine glands secrete hormones and chemicals directly into the blood stream mainly under the control of nerve outputs and inputs from the brain, and this is particularly so in the case of your immune system.  In this situation I am really concentrating on your lymphocyte response.  Your lymphocytes, as I am sure you will know, reside mainly in the lymph glands (of which there are hundreds), and they lie in all sorts of parts of the body.  Your lymph glands are connected to your autonomic nervous system by nerves, and the relationship between your central nervous system, your endocrine system and your immune system is extremely complicated.  We know a great deal about the way in which the immune response is altered by varying external stressor factors upon the brain. Many years ago the immune system was thought to be autonomous, but now we can see that the immune response involves the development of chemicals that enable the various white cells to communicate with each other. The way in which these chemicals respond and talk to the brain, and the way in which they feed back shows that the immune system, whilst having a degree of autonomy, is mainly controlled and facilitated by the central nervous system.  This control from brain, endocrine and immune response is thus seen to be bidirectional. 

Stressor factors on the brain can be extremely varied;  they can be very negative, they can be very positive or they can be neutral. Their effect depends upon the patients ability to cope with them and, therefore, upon their personality type, their moral and mental strengths or their weaknesses. Thus, there is a direct link genetically to the parental type and to the environment in which you were born, bred and nurtured.  What worries you doesn’t necessarily worry me, and some people become extremely anxious and worry about silly little things, at least as far as others might view them.  We cope with major life events in different ways.  The death of a loved one can send some people into freefall for years never able to manage again.  Others ignore it; they bury it somewhere deep in their psyche where it can remain festering for an equal length of time.  There are those responses that are considered to be ‘healthy’ where we do the right amount of grieving and crying and talking.  Most of us are able to work through these things in a period of time which medicine would consider to be ‘acceptably normal’.  Other major life events; marriage, divorce, house burning down, redundancy and retirement are all dealt with in similar fashions, but these events tend to be fairly acute.  The event itself is probably short-lived but the response and the reaction to it can  vary considerably.

Longer stressor events produce differing responses as well.  Being abused physically, mentally, emotionally, sexually over a great number of years can produce major psychological changes in people.  These psychological changes can be permanent and very difficult to treat.

Very severe trauma can also produce long lasting effects - post-traumatic stress disorder is an example.

Less obvious long term stressors are seen in people who are extremely fastidious, obsessional, pernickety, perfectionists, want everything done right all of the time, want it to be done exactly and properly, with an ethic that is inherited very frequently from the parents.  When children want to do very well at school, have to be top of the class, look for extra homework and extra-curricular activities, it can be something that is purely self-inflicted, but is often seen as the result of parental expectation and influence.  People who are worriers usually come from worrying families and I find it especially so in young women who inherit the problem from their mothers and grandmothers.

As you can see most of these stressors have a negative impact, they are not good for you in the long run and all of these types of negative stressor factors are seen in the development of chronic fatigue syndrome.

The "Stress in Animals" comparison

The study of the reaction that stress has upon animals seems to me as being almost unjustifiable, and then to translate the results to human beings is unreliable anyway.  I, personally, must admit to the fact that I hate animal experiments but they have been done and it is difficult to ignore the results.  I am reminded   of the Home Office’s reaction to terrorist information being obtained under torture.  It doesn’t come as much surprise to anybody, I would imagine, that the information obtained by torture is unreliable information and that tortured prisoners will say anything.  There are those who don’t want to interpret the information and include it in justification of  war, and there are those   who feel that it should be ignored. Such information, therefore, should always be covered by a caveat.  I am also reminded   of some highly reputable scientific researchers who say that a stag standing at bay just about to be ripped to death by a pack of hounds is not stressed. I wonder what is going on in the stag’s immune system at that moment.  I presume even more macabre experiments could be designed on those in America on death row. I wonder if their immune systems have been studied close up to the point of the lethal injection. 

There is no doubt that the information available in the early days of study of stressor effects upon immune response shows some quite conflicting results.  Many years ago a study of monkeys in avoidance stress, (i.e. a stressed response by trying to avoid some horrible stimulus like an electric shock or trying to avoid another unpleasant physical punishment), showed   that more of the unstressed monkeys died    after being inoculated with polio virus than those that were stressed.  Stress response here, apparently, enhances the anti-viral reaction and the immune responses are tighter.  The reverse is also true of those that were given relaxing medications. They   showed that their immune responses were less good than monkeys that received no medication. 

In the early eighties there were a whole series of studies to try and link the anatomical connection of the central nervous system and the immune system and also physiological connections between the two termed neuroimmunomodulation and immunoregulation and the response of immunoregulation.  In other words, the immune response varies enormously with the types of stress that could be applied.  As I have already said, I think that it is totally cruel that animals should be subjected to what are, effectively, forms of torture for experimentation purposes.  Sleep deprivation, food deprivation, total isolation, overcrowding and the overcrowding phenomena are still being studied.  

 I remember seeing a television programme about a year ago where some rats were placed either end of a room divided by a glass screen, low enough for them to be able to jump over.  If they jumped over they could breed. When the population was sufficiently increased the screen was removed and the demand for space became more intense and the rats became more aggressive   Then the food was removed so that they were then not only fighting and killing each other for space but, also, for food and water.  During this overall process their immune responses were being monitored and found to be tighter and tighter and, therefore, more responsive – particularly when fighting for space.     The time taken to respond to an inoculation or a viral infection was reduced. In other words their immune systems became more and more efficient but then, when the population density became so high that the killing rate between them was extensive, the immune system then collapsed very quickly. So there seems to be a relationship between peak performance and then getting to a point whereby nobody can survive.  It can also be seen in these situations that psychological influences become apparent. The rats were being very stressed, getting stress related symptoms, palpitation, rapid heart rate, increased sweating and then afterwards they were becoming depressed.  They were just sitting in the corner waiting for the inevitable which then transpired with increased infections, pneumonia, death, murder and mayhem.  Again rather macabre thoughts go through my head that maybe we should be looking at the immune response of the Americans in Fallujah and the insurgent Iraqis. I wonder what that would tell us. 

As you can see, all of these immune responses, maybe with the exception of the rat population studies, are observed on acute stressor factors over a   relatively short period of time.  You will see, elsewhere, that my suggestion is quite clear; that the stressful factors that lead to chronic fatigue syndrome, as the most significant pre-morbid factors in the development of this disease, depend upon patients being exposed to negative stressor factors over much longer periods of time.  This will usually be a minimum of a year and maybe sometimes a lifetime.  It is also true that the stressor factors that cause chronic fatigue syndrome are seen to be those that are more unavoidable, from the patients point of view, i.e.    they will say that they “Can’t do anything about it”, “But this is the way it is”, “My life has always been like this”.  Their personality also plays an enormous part, so the study of sleep deprivation, food shortage, starvation or cold exposure in animals over a short period of time doesn’t seem to me to be relevant to chronic fatigue syndrome.  

 To show the differences between acute stressor factors and longer ones and to the degree of stress we must return to the rats.  It has been seen that rats exposed to high levels of electric shock produce lower immune responses than those exposed to lower shock levels and that the shock response on the immune system depends upon where the shock is applied to the body of the poor unfortunate rat.  It is also clear that immune responses are much more suppressed when the animal is in a situation from which he cannot escape. In avoidance stress the animal is stressed by applying an electric shock and making it jump away but if you strap it down and keep shocking it you get a different immune response.  However it is also clear that you get a diminishing immunological response right across the board when you expose an animal to very long periods of stress; months as opposed to hours and days.  In some cases, depending upon the animal and the shock applied, one can find that chronic stress restrained stimulation for a couple of weeks, can actually find an ability of the immune system to be more efficient and killer cell activity can be improved. However, these responses also have been found to be non-reproducible depending upon the different strain of animal and the different type of animal used. 

I think I am trying to suggest that there are quite obvious changes to the immune response when animals are exposed to stress. These responses tend, if anything, to be less efficient on the whole and therefore, generally speaking, animals under stress, especially over longer periods of time, tend to be less efficient at repelling virus or bacterial infection and or inoculations.  Also,  the immune system doesn’t make as good a response to the inoculation as it would otherwise. In fact, the responses are variable and sometimes contradictory, which I think now leads me nicely onto my reasoning to implicate chronic stress as the cause of chronic fatigue syndrome.

Once again may I apologise for the inclusion of this animal data – not nice.

Personality Traits in CFS/ME 

I have not done any formal studying of the personalities and personality profiles of those patients that I have seen but I have been looking at CFS for over twenty five years and, 99.9% of the time, CFS is precipitated by a significant long-standing, overwhelming set of negative stressor factors.  There is very rarely just one significant event but usually a sequence of events, over a significant period of time, and the personality of the patients that I see contributes significantly to the development of their illness process.  Firstly I do not consider that there is any particular personality type that develops this illness and, certainly, they are not particularly Type A or Type B, but both.  There is no doubt that there is a significant relationship between the development of CFS and a previous history of a neurotic illness process such as previous anxiety states, periods and episodes of depression, or a tendency for patients to be neurotic in the medical sense.  The great majority of patients that I see are worriers and they often tell me that they are worriers about anything and everything.  They tend, also, to be slightly obsessional in their approach to life; they like things done precisely, they are pernickety and they give 110% commitment;  things have to be finished, neat and tidy. 

The association of anxiety is probably best seen in children. They are nearly always worriers, they worry about what other people think about them and their work, they worry about the health of their family especially if one member of the family, a parent or grandma and granddad, has been significantly ill with a life threatening illness.  Internalised anxieties are very common in adolescents by the stresses of growing hormones, peer pressures at school, bullying, having to be in packs and groups. Exclusion from those is normal but can and do cause enormous anxiety.  Children also are found to be worriers about their academic capabilities. Sometimes the external pressures are put upon them by parents’ expectations, either spoken or unsaid, or by going to a pressurising academic school. Pressures put upon students who are expected to do well at school are also commonly seen.  Then of course  young children may put enormous pressures on themselves by wanting to do well, studying harder than their peers, doing more homework than is necessary, and wanting to be top of the class. Indeed if they do get to the top of the class and become a ‘boff’ there are then enormous pressures to stay there as the only way is down. Also, in today’s young culture it is not considered “cool” to be a “boff” or a “swat”, which brings separate pressures. 

In adults it is well established that CFS/ME is more often seen in women.  My ratio is 66% women and 34% men.  Women also are born worriers. This tends to be on the whole a lifelong thing and they get it from their mothers who, in turn,   get it from their mothers.  I am sure it is not only genetic but acquired. After all we are born of our parents and then we live in our parents’ house and our personalities are pretty much fixed by the time we are eight years old, and you can’t change after that.  You can be made more aware of the way things are, but I feel that as one gets older one becomes less capable of coping with stressor factors.   I think that the age group of peak incidence of CFS is thirty to forty years old.  I believe the reasons for this are that these are the times of the greatest pressures; financial, - mortgages, - relationships, - adolescent children,  - peak performance at work, - top of the ladder, - top of the tree, - top dog being bitten from below! 

There are certain occupations where stress is normally higher than   others. Financial jobs in the City seem to be very common as stressful occupations in men, but increasingly so in women also   Nursing professionals and teachers also seem to feature highly, and the commonest one after that is Mrs housewife and superstar who may also have a career of her own.  I think that because men go to work and can get themselves out of the house they escape the everyday mundane problems, but mum stays at home coping with these adolescent kids. Sadly, it is not uncommon, these days, for this to be as a single parent. Financial stresses can, also, become considerable. As previously stated, a significant history of being a worrier since childhood and, also possible difficult relationships within the family, can compound the anxiety.  I also note quite often that there is a long-standing history of disturbed sleep pattern. Patients often tell me that they have had difficulty in getting off to sleep at night for a great many years and that this is worse when they have CFS/ME. It is observed, almost invariably, that sleep is not refreshing or rewarding in CFS, but I do note also that patients in the lead up to the development of their disorder process, have had occasional patches of un-refreshing sleep.

Then of course there are the significant histories of ‘events’.  On top of the stresses and strains of everyday life they come along rather like buses (not just one or two but three at a time).  Typically these are the major life events such as death, divorce, redundancy, leaving home, going into a disastrous marriage, break-up of partnerships, significant long-term illness of siblings and relations. 

To a certain extent you can see that most of   the above occurs with all of us, living in our part of the world where these sorts of stresses and strains are normal So I think there is also a great deal of truth in,  ‘There but for the grace of God go I’, and that CFS/ME is something that we all probably get quite close to quite frequently.

As we get older and the children leave home and go away, relationships usually become   more stabilised.  The pressures at work start to diminish  and as one goes over the hill,  past middle-age, the onset of CFS is less frequent, and by the time that we all getting to our dotage CFS/ME is rare.

Personality and Immunological Response

Everybody knows the Type A personality and Type B personality; the former, on the whole  being ‘Get up, let’s go, haven’t got time to be ill, stoical, somewhat aggressive maybe, independent, self-assured, self-opinionated and capable’.  Type B personality is introspective, soft, gentle, tending not to push themselves forward, and probably more caring.  Along with this one also finds other personality traits that are associated with the two different groups. In the Type A personality one would see more people with anxiety, with worry, things have to be done right, perfectionism, obsessional traits.  In the Type B again one might find worry, but about others, about what people think of them, quiet, withdrawn, high symptom reporters, maybe a little tendency to neuroticism of a depressive type rather than anxiety.  These of course are generalised statements and everybody is different, individual, but I do see that increased pressures and neuroticism are associated with fatigue syndromes – always. 

Type A personality, whilst being very good for ‘I haven’t got time to be ill’, is not a terribly good at ‘coping’ behaviour, certainly for recovery from virus infections.  The severity of symptoms is greater in Type A personality and so is the tendency to seek medical advice and reassurance.  They seek medical advice much earlier. There is, of course, an increased incidence of high blood pressure and heart disease. A number of patients may be underweight rather than overweight, but certainly there is an increase in alcohol consumption and a lot of neurotic symptoms as a scenario.  

Type B personalities, with a less stressed background and being less anxious,  probably have a better coping strategy.  Children at school with a less worrying approach to their exams and less obsessiveness tend to find an increase in the rate at which their blood has a positive response to vaccination.  BCG vaccinations work better in a Type B personality.  Response to all vaccines tends to be quicker in people who are a little bit more laid back.  However, paradoxically, a study done many years ago in General Motors predicting the outcome to an infection saw a particular Psychologist interviewing the entire workforce and he suggested those that had a Type B personality would not respond to a virus infection so well and be off work longer.  That in fact was the case, when there was an outbreak of flu, and those of a Type A personality tended to get back to work earlier. They had less symptom reporting, but reported their illness earlier and it was interesting to see that, with the complication of a virus infection in the liver, patients that had a pre-morbid history of depression tended to have abnormal liver enzymes for longer. There is, therefore, no doubt that ones personality has an actual effect upon the ability to recover.  

There are some indications that patients who are stoical and have a Type A personality recover from surgery more quickly; their pain is less and also of shorter duration but they tend to take more tablets.  Stoicism is very good for those who have various types of cancer. The types of people, including those in denial, who are able to turn round and ignore the fact that they have had a serious cancer threat, tend to live longer. Those who adopt the attitude that they are simply not going to die have better quality outcome and do in fact live longer.  There was a very big study done on breast cancer outcome with these stoical approaches and there is no doubt it works in all studies.  Equally, and in contrast, those that have a more resigned approach, an acceptance of the problem, an anxious pre-disposition and depression lived less long.  These psychological approaches to illness are much better predictors of long term outcome than is the size of the tumour or its aggressiveness at the early stages or time of surgery. There have also been studies to show that it is not only the patient’s personality that has an important effect on their recovery rate; it is also influenced, quite remarkably, by the support of their immediate family. In fact, really good family support helps aid recovery with almost every illness process.

Specifics of Human Immunological Responses in the Development of CFS/ME 

As I have already indicated, at some length, in various parts of this website almost without exception, the reason why we get CFS/ME is because of a substantive set of long standing negative stressor factors.   I now strongly believe that viruses are just one of the triggers to developing CFS/ME and not the actual cause.  

Up until the late eighties I was working with others demonstrating the persistence of enterovirus infection in a large subset of CFS and, in another substantive subset, the relationship of this illness process with glandular fever virus (EBV).  Looking back now, it is clear in my mind that persistent enterovirus infection in a great number of people, especially   young children, is a normal event and in these situations they are asymptomatic.  This is best seen in studying the serology and stool culture for virus in patients vaccinated against polio virus, but looking back it was clear that we were demonstrating persistent enterovirus in patients with CFS/ME.  You could recover the virus from the gut, we could demonstrate enterovirus particles in the blood and in the muscle, but we could also demonstrate the fact that these patients  made a normal and proper serological conversion to a long term neutralising antibody IGG.  There was not the demonstration of non-conversion or  a persistent short-term antibody (IGM) so, whilst the virus could be found to be persistent over a period of time, (indeed several years) the blood had shown that the patient had recovered from this infection.  However, in these situations the patient did have a chronic enterovirus infection and had also demonstrated that they had CFS/ME.  We tied these two things together, as cause and effect, but the problem was further complicated by the fact that, whilst there was the demonstration of a neutralising antibody IGG, the patients still had a switched on immune system and, apparently, were continuing to fight a virus. So we added all of these things together and identified CFS/ME; caused and perpetuated by a persistent enterovirus infection – WRONG. 

We will now turn back to the immunological studies done all over the world in patients with CFS/ME. Whilst they may be called different things in different parts of the world I am sure that these illness processes are all the same, if not extremely similar, and that we are not looking at a different disease in England as opposed to Japan or America.  There have been at least one hundred studies done on the immune responses, of which responses there are hundreds of thousands capable of being studied.  All these studies agree that the immune system in adult human beings appears to be turned on in a non-specific way and that the non-specific response appears to be directed towards the immune system fighting a virus, whether there is a detectable virus or not.  Also looking over the literature, it is clear that a great number of different viruses have been implicated in causing CFS/ME. As I have already said some of these are the enteroviruses and EBV. Others include the herpes viruses shingles and chicken pox, other herpes viruses and viruses that are still not known to be associated with particular disease processes, like the humane herpes virus six (which is a virus still looking for a disease).  There are those that believe that CFS/ME is caused by a yet undetected virus, i.e. a specific virus that causes ME so it must be the ME virus and, I am certain that these approaches  are wrong. 

I have mentioned elsewhere that, when you are attacked by a virus, what actually makes you actually ill with the headache, aches and pains, fever, malaise and the general symptoms of ‘flu’ is not the virus itself, but your immunological response to it.  In other words, it is your initial antiviral non-specific response of compliment fixation and the production of interferon which then circulates through the body producing a non-specific antiviral defence.  At the same time, however, it makes you ill! 

In order to recover from this virus infection,   to turn your compliment fixation off and to then restore and normalise immunological equilibrium (i.e. that is not turned on and fighting a virus) you have to have had a virus.  A virus has to be identified as having penetrated a cell by leaving a mark on the cell where it penetrated. Then your immune system needs to take that antiviral marker and   respond by producing an antibody to that so that the antibody can turn your immune system off and let it all go back to normal. Then you recover over a period of a few days, maybe a week or a fortnight.  If you don’t have an antiviral antibody your immune system can stay turned on.  In what situation this can occur is a matter of conjecture, however, but after careful thought, my model is as follows:-  

I place you under a long standing negative stress for which it appears, there is no obvious remedy that you can think of. You are a woman married to a man who abuses you, you have got no money and no means of obvious escape other than to quit and run away to a refuge. Even this may not  seem to be a good option.  If you are under this intolerable pressure for a number of months, or longer, your immune system starts to fight a virus that is not there. Your cortex, i.e. your personality, stimulates your lymphocytes in your lymph glands and they start to produce a reactive change.  Your natural killer cells go up, your CD48 helper cells go down, your suppressor cells alter, creating a non-specific antiviral response.  This response will vary from day to day, week to week. The response becomes stronger the more stress you are under and recedes if the stress is either momentarily, or for a longer period of time, diminished.   It may be that, at this point, the abuse at home is so strong, and thereby, the immune response is so activated that your immune system then starts to fight a virus in a full blown fashion. There is no virus, there is no specific trigger - just the stress, and you go down with an immune response that gives you flu; an interferon response.  You get glands swelling in the neck, a very sore throat, headache, malaise, temperature, aches and pains, fatigue, intellectual concentration difficulties and you take to your bed with what, you assume, and what everybody else would also assume, is a virus type flu. However, if there is no virus then you can’t turn that off.  Your stress may or may not be temporarily relieved and your symptoms then might get a little bit better.  Maybe the abuse is less because you spend two or three weeks in bed and you can’t respond to your spouses unreasonable demands. So you get a little better, you go back into the abusive situation and the stress increases. Your immune system responds by stressing itself further and you experience another ‘flu’-like reaction one, two, three weeks or several months later. In the meantime you continue to complain of CFS/ME type symptoms and you don’t get better. Now your immune system is sensitised and turns on with a much less negative stress input.  Now let us say that your spouse leaves you because you are ill. You are left with a couple of kids to support on your own.  The immediate stressor factor of an abusive partner disappears but now, of course, the stress is ‘How do you survive?’- you are ill. You bumble along with or without family support, with the symptoms and an illness process called CFS/ME.  In this scenario there was no virus, so you can’t turn your immune system off without some further advice and help.   

We   know   that if you do too much, either mentally or physically or get too much stress, your immune system then turns back on again, you get the acute and chronic symptoms sore throat, glandular discomfort, aches and pains and general flu-like symptoms. When they go away after your stress has lessened or when you don’t further provoke your symptoms by the ‘doing too much on a good day’, scenario, your symptoms continue to flair up or diminish, depending upon how you manage your life.  Hence, the development of my modified activity programme, for both mental and physical activity, which is discussed elsewhere, but from which  you can see that, in order to recover you have got to do several things.

It is a little known fact that all antidepressants are immunoregulatory, i.e. they have an effect of normalising immunological responses.  They turn off non-specific antiviral responses and, hence, their use in CFS/ME is axiomatic (you can’t get better without using them in my opinion).  The best of the antidepressants for this purpose is Amitriptyline and its effect can be achieved by the use of small doses. I am talking in terms of 10mg, 25mg or 50mg.  These are levels of antidepressants that are not of any use as an antidepressant effect. They are sub therapeutic levels, as far as depression is concerned, but they are certainly far from being sub-therapeutic when you are trying to regulate the delicate nuances of immunoregulation.  All antidepressants have this effect but it is especially marked in the older type of tricyclics and, indeed, the SSRI, Fluoxetine Hydrochloride. 

If you look at the cases of patients and their stress history very closely, as I have done over a great number of years, you will find that it is often the person’s personality that leads to their stress. They are the fastidious, pernickety, obsessional, high pressure, Type A personalities, as I have mentioned above.  You will find that if they are going to develop CFS/ME, they tend to have a history of being more prone, than most, to getting virus infections. In fact, they tend to get ‘everything that is going about’, they are always getting colds in the winter and recovering when the flu has gone away. In these situations they seem to think they are getting all of these viruses which,   indeed, they may be, but then, in between times when they would normally have recovered, they tend to find that the recovery takes longer. Instead of being one   or two weeks after a sore throat or flu in the winter it is one or two months, and they find that their sleep pattern becomes disturbed. With mild insomnia, difficulty getting off to sleep and waking unrefreshed, they are more tired in the day - maybe a little low and irritable. This tends to go on for months before they become more unwell. They just don’t see CFS/ME coming down the track to hit them right between the eyes.  At this point they are missing work, the boss is on their back the housework is not getting done, the children aren’t being taken to school, social life disappears, the sick school-age child  is missing school work so the pressure, if anything, increases in a secondary direction.  We now have a self-fulfilling prophecy. The pressure increases; your immune system  does not need another virus, but manages to turn itself on all by itself and you go down with this ‘flu’ that isn’t caused by a virus and which leaves you with varying degrees of morbidity which is this chronic, horrible illness.  With the scenario I have given above, leading to a CFS/ME outcome, there is no doubt that there is a cure.  It can and does get better and whilst I can get most people better using modified activity programmes and antidepressants, the one situation   I can’t get them better from is:

They are always going to be vulnerable to stress.  If we get them better and they go back to being the way they used to be, once more allowing external pressures to return, then people have the capability of going down with their illness process again. Their immune system is always vulnerable to stress and is likely to turn itself on and react by producing another episode of CFS/ME. 

If, on the other hand, you can make sure that this illness teaches the person the lessons that it has to teach them, and that the patient learns the lessons that they have to learn i.e. that by avoiding these stressor factors to a greater or lesser extent for ever-more, then of course, patients can make an almost full recovery. However, they are never quite the same because of their experience of the illness.