by Susanna Agardy
I addressed the text below to Dr Monica Greco, Senior Lecturer in the Department of Sociology at Goldsmiths, University of London and sent a copy to Dr Simon Cohn, Medical Anthropologist and Senior University Lecturer at Cambridge University. They both took part in the BBC4 Program Thinking Allowed about MUS.
In the BBC4 program Thinking Allowed on 1 July, you seem to be saying that doctors pay too much attention to physical aspects of symptoms they cannot make sense of and that instead of offering further tests they should just offer more sympathy. The assumption seems to be that these symptoms are not worth taking more notice of. While the sympathetic approach you suggest would be welcome, I believe that doctors do not pay enough attention to the physical symptoms and the diagnosis of MUS is too readily applied.
As a person now diagnosed with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS), an illness often referred to as MUS, I have some experience of diagnostic procedures or lack thereof. I hope take my comments into consideration.
MUS really stands for Failure to Diagnose (FD) for whatever reason, which often progresses to Denial of Failure to Diagnose (DFD). In practice, MUS has come to serve as a diagnosis of non-illness, although the patient continues to be ill. Even if the label was designed to exclude suggestions of psychological conditions MUS in fact suggests that the patient is 'suspect' or a fraud. No doubt, if each case under this miscellaneous label was to be properly investigated a diversity of physical and psychological conditions would be found. I've known of a case where the term 'neurotic' was bandied about due to a lack of obvious explanation of the patient's symptoms, until she was finally diagnosed with lead-poisoning by a doctor competent to make the diagnosis.
The problem is surely created by the limits of medical knowledge, of individual doctors and of diagnostic tests, and the failure in practice to acknowledge these limitations. If a few preliminary tests show 'everything is normal' it is concluded that there is nothing physically wrong with the patient and they are frequently assigned a MUS diagnosis or a psychological problem.
The history of knowledge is replete with people acting as if there was nothing further to be known about a subject that is not known already, eg. 'cholera is caused by miasma', 'stomach ulcers cannot be caused by bacteria'. The assumptions underlying the MUS label are already shaping up to be present day equivalents of such beliefs. The symptoms in MUS are not medically unexplainable, it is just that the means of explanations are not used or not easil y found. Complex multi-system conditions are also not well handled by a compartmentalised medical system. Even just the administration of medical tests faces a number of obstacles and limitations:
- diagnostic tests for some conditions do not yet exist;
- tests are not sensitive enough;
- some tests are expensive or are not easily accessible;
- health authorities place restrictions on the use of tests;
- doctors do not know about the existence of tests or think they are not warranted;
- test results are abnormal but doctors dismiss them or misinterpret their significance.
The above list of shortcomings in diagnostic procedure already disallows the exclusion of disease. How can you say there is no disease when you have not looked? While so little is known about biochemistry, the actions of genes, pathogens, allergies and the effects of chemicals, especially in combination, there should at least be an open diagnosis stating 'we don't know enough' rather than positively stating that there is no medical explanation and condemning a patient into suspect category.
In the case of ME/CFS doctors are not educated about the condition. There is a considerable body of clinical and research-based knowledge which is ignored by the medical establishment. For example, The Canadian Clinical Case Definition and Guidelines for Medical Practitioners provides an effective tool which is ignored. http://www.sacfs.asn.au/download/consensus_overview_me_cfs.pdf Doctors are also actively discouraged from using tests which show up as abnormal in cases of ME/CFS. ME/CFS is then categorised as a MUS.
Dr Byron Hyde, a specialist in ME and CFS, has found that ME is a measurable neurological disease and that CFS always has one or more serious undiagnosed diseases underlying it. He claims that he can diagnose these diseases 70-80% of the time. Dr Hyde holds himself responsible when he cannot diagnose the underlying condition, not the patient. Just because his intensive investigations do not easily fit into the current medical system is not a reason for labelling ME and CFS medically unexplained. (Chapter 3, the Complexities of Diagnosis, Handbook of Chronic Fatigue Syndrome, LA Jason, PA Fennell, RR Taylor. Wiley, 2003)
While certain psychiatrists promote the growth of the MUS industry, rigorous diagnostic testing is being displaced by the MUS and 'biopsychosocial' diagnoses in which the 'bio' is usually ignored. In a rigid dismissal of the possibility of disease, these psychiatrists, backed by sections of the medical profession, insist that certain physical symptoms must be psychologically based and seek to enforce risky behavioural treatments in the expectation that these will fix the problem. (I refer here to Cognitive Behaviour Therapy and Graded Exercise Therapy for ME/CFS, at least the latter of which is contraindicated and can be dangerous.)
Their insistence on their confined terms of reference is breathtaking. They tend to go round and round finding confirmation of their beliefs without ever examining whether their whole paradigm might be out of touch with physical reality. Apparently living in a separate bubble of their own making, exploiting gaps in medical knowledge, they ignore all evidence which might contradict their position. Cognitive dissonance is surely at work here. After all, if they accepted such evidence their whole career might be at risk. There is great scope for social, psychological, and economic analysis of the behaviour of these professionals. At present it is the patients who are searched for behavioural aberrations and are forced to bear the consequences of whatever label professionals choose to stick on them. As a result, they are often abused, neglected or patronised. The burden is on them, or a few dedicated researchers, to prove they are not frauds.
Doctors need better diagnostic techniques so that they can discover the basis of illness and research funds are needed for this. In the case of ME/CFS at least, instead of the funding of appropriate research, money is spent on researching 'biopsychosocial' explanations which, to make things worse, are facile, simplistic and mostly make the wrong assumptions about patients and their histories.
Two examples of the appalling consequences of the DFD approach is the treatment meted out to two young people. Casey Fero, a 23 year old man in the US, given the CFS label and neglected accordingly, died in his sleep one night. Autopsy showed that his heart was full of old and new viral infections. http://www.wicfs-me.org/casey_fero_blood_blank.htm. Sophia Mirza, a 32 year old woman in the UK was bedridden and sensitive to almost everything. She was sectioned in a mental hospital and treated harshly not long before she died. Her autopsy showed a severe infection of the spinal cord. http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm Tragically, the proper diagnosis, or at least the respect that goes with a belief that they might actually be ill, instead of the MUS dismissal for these young people came only posthumously.
Before I was diagnosed with 'CFS' I was feeling terrible and was dragging myself to work for about five years. During this period 'all tests were normal' although there were slight, repeated departures from normal ranges which were ignored. These turn out to be relevant to ME/CFS. Neither I nor the doctors I saw had any idea what was wrong with me. I was reassured that I was healthy and had no name for my condition. You seem to suggest that if patients are not given the comfort of a diagnosis and continuing tests, they are less likely to adopt and perpetuate an illness state. Well, I had none of that comfort. Unfortunately, medical ignorance did not make my body forget to be ill and I continued to get worse. Since a bout of pneumonia 10 years ago I have not been able to work. It was only at the stage when I could no longer work that I was diagnosed. I have a number of significantly abnormal test results.
I am not sure what evidence exists to show that getting a diagnosis and further tests perpetuates a disease state. However, we never hear that argument in relation to cancer or multiple sclerosis. What is clear is that lack of diagnosis and appropriate treatment perpetuates disease states.
The framework of thinking about difficult sets of symptoms needs to change. American neurologist Chris Gallen, active at the time of the Incline Village outbreak of ME/CFS in the 1980's said: "There is a tendency in medicine to dismiss data because it doesn't fit with your understanding of a problem. As a neurologist, I've had docs explain that they wanted me to see a patient who they thought was probably a crock because the patient had this or that odd set of symptoms. But by the time I finished listening to their history of what I'm going to see the patient about, I knew what the disease was because those symptoms that seemed like odd, quirky symptoms to the doc added up to a classic neurologic syndrome that they just happened to not know about.
When you see that happen enoughA 6 it begins to make you realise - if you're open-minded about it and if you can live with the fact that you don't know everything - it makes you realize that most of the time when patients are giving you a history, they're giving you the right history. It's really a question of Can I figure out what this history means? Rather than What can I throw out from this history to make it fit into my existing slot?" (pp 133-134, Osler's Web, Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Hillary Johnson, Crown Publishers Inc. New York, 1996.) Not all conditions fall into to place in the same way but the habit of thought suggested would provide much relief to patients and advance the state of knowledge.
You might already be familiar with the work of Dr Martin Pall as expressed in his book:
Explaining "Unexplained Illnesses" Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, Gulf War Syndrome, and Others: (Martin L Pall; Haworth Press, 2007). In this book Dr Pall puts forward a theory which purports to explain complex physical factors involved in some so-called unexplained illnesses. These sorts of factors should be considered in any discussion about these illnesses.
Failure to be diagnosed is just that. Instead of becoming objects of speculation for social science such undiagnosed patients should become objects of productive scientific enquiry in medical science.