The ME/CFS Society of NSW Inc.

-by Ros Vallings

Scepticism has been a problem for people with ME for a very long time. In this article, Dr Rosamund Vallings takes a look at scepticism and disbelief in ME from a medical practitioner’s point of view.

One of the hardest things for those with CFS/ME has been the issue of “no-one seems to believe I am ill”. Fortunately I am hearing this less and less these days because I think this illness is becoming better understood and validated by current research. One of the problems of course has been the historical issue of some psychiatrists who claimed that Royal Free Disease was “all in the mind”. Royal Free Disease was a result of a recognized epidemic of a flu-like illness affecting many medical and nursing staff at the Royal Free Hospital in London. Many remained chronically ill for a very long time, with what we now call CFS/ME. I was at medical school soon after this in London, and clearly remember seeing patients from that hospital epidemic who were very ill, hospitalized and being investigated for clues. However there was no question that these people were genuinely physically very sick. The illness was described in the textbooks clearly. When the psychiatric reports came out some time later, I am sure many people did ask that question – “Was this in fact a psychological illness or mass hysteria?” So of course thinking did change, as we entered the era of mind-body medicine. Previously psychology was an almost “hidden” branch of medicine, with the psychologists and psychiatrists relegated to the basement in the bowels of the hospital or attached to mental institutions still known as “lunatic asylums”. I think this is not the only illness that has been questioned in this way – there was a long phase when Multiple Sclerosis was thought to be of psychological origin.
Thankfully with the emergence and development of sciences such as immunology, genetics and biochemistry, illnesses such as CFS/ME are becoming validated and acknowledged by the wider medical and research community. Any chronic illness has psychological effects and we no longer separate mind and body (the psychologists no longer reside in the basement). So issues of depression and anxiety inevitably become part of the illness and need to be diagnosed and treated as part of the whole. This will enhance chances of making a recovery. But this certainly does not mean we are labelling this as a purely psychological illness. It is just like any other illness with physical and mental aspects.
So why do patients still have problems with convincing doctors and others in their lives that they have a “real” illness and are seriously afflicted? Firstly there is very little space in the medical curriculum to teach detail about any illness, so medical students only get a very brief introduction. It is usually after medical school that detail is achieved, as the newly qualified doctor moves into the real world and moves in directions of particular interest, some acquiring post graduate qualifications on the way. Secondly, CFS/ME does not exactly as yet fit into a particular speciality – it extends between immunology, neurology, rheumatology, psychiatry, cardiology and more recently genetics. So it may be an illness in which many medical specialists may only ‘dabble’ unless they develop a particular interest in it. Some of the older doctors too may have been at medical school during the CFS/ME “psychiatric” era and have been taught that it did indeed fit the psychiatric mode. Thankfully medical education is now encompassing the illness more accurately and there are many research papers now available on line and being regularly published in the recognized, peer-reviewed medical journals from prestigious institutions.
As yet there is no specific test to make a firm diagnosis and doctors do rely on their experience and expertise in making this diagnosis from careful history taking and examination. Again this is not unique to CFS, as many diseases have no specific diagnostic test. There is a set of criteria (recently updated) by which a doctor will make the CFS/ME diagnosis, but this is not usually something the regular GP would have at his fingertips – there are just too many diseases!! This is becoming easier however, with access to the internet.
There are other difficulties for the doctor too and these may stem unknowingly from the patient. For a start these patients usually do look well. This is partly because they are not usually seen when they are really ill – they tend to come to the doctor on a “good” day. Or those who are very ill, may rarely see a doctor anyway – they are just too sick to get out. Human nature is such that we always try to put on a good front anyway, so people will often smile and say they are fine, when in fact they are not well at all. Many people have said to me that no-one ever sees them when they are at their worst. There is also that deep-seated fear of being labelled as a psychiatric case – so there is a great effort to appear “normal” and deny any references to anything with a vaguely psychological tone. For example, I often ask a patient if he has any stress issues – to be then faced with an angry looking person gripping the chair and declaring, often shouting “I am never stressed” – that is abnormal as we all face stress every day!
Many patients I see have often been the rounds of many doctors with no firm diagnosis, so feel they have been ignored or maltreated, so are often very angry at the medical profession as a whole. This can certainly make it hard for the doctor when faced with an aggressive person in combative mode. Patients are angry too because so often they are told that all their tests are normal. How can the tests be normal, when one is so ill? They cannot understand why the doctor wants to do more and more tests if everything is so normal. Of course the doctor is trying hard to look at as many potential causes as he can, and hope to reassure the patient that certain possibilities have been eliminated.
Sometimes too, the story the patient gives is quite bizarre, and the doctor, in his mind, maybe questioning the patient’s sanity, particularly if this is tempered by anger, mood swings and wandering thoughts during the consultation. Patients do also find it very hard to describe their fatigue and other symptoms accurately. This is understandable, for although they are very expert at their own symptomatology, they are not experts in medical terminology and description. The short time allowable for consultations is a barrier too, and it is often only when a doctor gets to know the patient well, that the true story and genuineness emerges. Doctor shopping and flitting from doctor to doctor does not allow for development of rapport.
Many doctors may give advice, and feel frustrated when the patient does not stick to the suggestions – the advice may of course have been inappropriate. But some people do not stick to treatment because of ill effects, which if they had persevered may have settled down. Patients often arrive with their own diagnosis and sheaves of information off the internet and this can put the doctor off a bit – particularly if the information is non-scientific, and it is hard for lay people to work out what may or not be valid research. Some so-called pseudoscience may seem very convincing. Sometimes too patients have had the diagnosis made by an alternative practitioner, which maybe fine, but can sometimes be nonsensical, as there are many charlatans around who prey on the vulnerable. And it is then hard for the doctor to convince the patient that this may not be correct.
Unfortunately patients are often told they do not seem to want to help themselves, or maybe just bone lazy – this may come from health professionals, teachers, family, friends etc. Again it may be hard to verbalise the very real ill effects of say, going to the gym. A person with CFS may seem to look good and do well at the gym, and feel good because of endorphin release, but no-one sees them the next day when they are lying in bed in pain trying to recover from doing too much. Thankfully recent research is showing that one exercise test is not useful in this illness – the telling time is the second exercise test 24 hours or more later when the ill effects show up. The opposite can of course occur with the striving person just pushing themselves too hard all the time, despite everyone telling them to slow down.
Social welfare agencies and insurance companies get caught up with this illness too. Patients are often poorly treated by lay staff who have no medical knowledge at all, let alone knowledge of this illness. But usually these people are keen to learn, and there is really no question that the term CFS/ME should be acceptable, and if the doctor uses this term on medical certificates, no further questions should need to be asked, any more than they would be for diabetes or cancer.
Children at school are often the butt of much scepticism. Teachers may think of the child with CFS/ME as lazy or playing up. Parents may have been told the child has a school phobia, or may even feel threatened if the child is not regularly attending school. The cognitive difficulties may mean the child is not achieving to his ability, and may end up being put down a class or left behind by his peers. Other children cannot be expected to understand and maybe cruel towards one who is sick but with no obvious disability to “see”. In our sports-orientated society, just not participating in sport is viewed with scorn. Thankfully most schools and teachers are delighted to receive accurate information about this illness and put their new found knowledge into practice.
Forming and maintaining relationships is hard for anyone who is sick. Relationships can be hard work and energy is limited. Again many just do not understand the illness, although those close to a person with CFS/ME usually have good understanding of how this person has changed and they do see the side which outsiders rarely see. Some people cannot cope with illness and back off, while others become the true and caring friends. An illness such as this can make or break a relationship and many marriages have foundered, while others have become stronger and long lasting.
Many of my patients just wish this illness had a better name. They are so often told by non-sufferers “Oh I feel tired too”, but of course this is a normal tiredness as opposed to the very abnormal and far reaching fatigue in CFS/ME. Changing the name repeatedly leads to more scepticism. It is as if we do not really know what we are talking about. Internationally the term CFS/ME now seems acceptable to the medical profession, and any future changes should only occur when we more fully understand the complexities of the illness. So we need to accept it – adding the ME component certainly seems more scientific and helps us move away from “chronic fatigue” which is very different from the syndrome CFS/ME as chronic fatigue will occur in almost every chronic illness, and is probably the symptom most often seen in any medical practice. In the past it has been confused with CFS and some of the older research has even confused the 2 conditions – one a disease (CFS) and one a symptom (chronic fatigue). I can only say that from the point of view of a doctor seeing many people with this illness, things have improved enormously over the past 30 years. The key has I am sure been the exciting research developments, coupled with good education for everyone involved in this illness, be they health professionals, employers, social welfare agencies, friends and family. We are fortunate in New Zealand that our government acknowledges this illness and is supportive towards those who have it. With our small population, dissemination of information to health professionals and others is possible and ongoing, and ANZMES has been instrumental in this endeavour.