The Rome Committee for the categorisation of functional gastrointestinal disorders, including The Irritable Bowel Syndrome, was founded in 1990 to develop appropriate criteria for the diagnosis of all the different manifestations of any those gastrointestinal illnesses that could not be explained by obvious pathological change. I was invited to join the original committee and accepted with a feeling of pleasure. How lovely I thought, to visit Rome and discuss medical philosophy with a group of respected colleagues. I was, however, dismayed by the Delphic process and left after 3 months, It just didn’t seem right to me that a group of doctors, albeit specialists and opinion leaders in their own fields, could sit down over a day or two and decide what The Irritable Bowel Syndrome and scores of other conditions were to be without any substantial evidence to back it up. No patient was included in the group, neither was any opinion from patients sought.
At the last meeting I attended, I announced that I thought this process would hold up research in this area for the next 25 years. I don’t know whether I have been proved right. How can we know whether progress in IBS has been held up unless we can tell how far it would have gone if the Rome committees had never existed? But undoubtedly Rome has fixed clinical understanding of what IBS is and what it is not among doctors throughout the world for all of that time. Its proponents would argue that the Rome process has provided a shared structure so that clinical scientists from any country within the orbit of Rome would know they were studying the same condition and, perhaps more relevant, pharmaceutical companies would know they were developing treatments for an illness they could define. After adoption of the Rome criteria, clinical scientists could not conduct research on IBS or get it published unless the patients they were studying conformed to the Rome criteria.
Such has been the course of human thought throughout history. First decide what something is going to be and then gather all the evidence you can to support it, though of course that evidence depends on the implicit assumption that that entity exists as defined. It is, of course, a circular argument -.’it is because it is because it is because it is!’.
‘In the beginning was the word’ (or is this case the diagnosis). There is more than a passing resemblance to religion in all of this. To what extent are the codes by which our lives are governed put there by those who would govern us? Do diagnoses such as IBS help the doctors more than they help the patients?
Over the last 25 years, the Rome Foundation has published three major classifications of Functional Gastrointestinal Disorders, three weighty tomes, each one larger than the one that preceded it. It has spawned a whole host of copy-cat guidelines and algorithms. In the UK, these include the NICE guidelines for the diagnosis of IBS in adults, The British Society of Gastroenterology guidelines for the diagnosis of IBS and The British Dietietic Association Guidelines for Dietietic Management of IBS. You would think that alone would establish its credentials, but the same could be said of The Roman Catholic Church or the Government of The United States of America. It is politics, not science nor fact. The only valid thing we can ask of it is, is it helpful?
The mission of the Rome Foundation is to improve the lives of people with Functional Gastrointestinal Disorders. I am sure the governors of another Rome had much the same intentions until riven by civil war.
The fact is there is no convincing evidence that adoption of the Rome criteria have improved the lives of people with IBS. On the contrary, they may disempowered them by making them overdependant on a bereft medical system that had no satisfactory answers.
‘How can my backache and dizziness be caused by IBS?’ I have tied all medications for IBS, gone on a low FODMAP diet and tried hypotherapy, but nothing works? Can it really be IBS? The constipation and pain is there every day, I’m sure I can’t have just IBS’. These are a few among the many questions we receive at The IBS Network. And when I have listened to groups of GPs, few of them find the Rome criteria at all useful. IBS is, for the majority, a diagnosis of exclusion.
What is needed is a paradigm shift. So it was with a feeling of anticipation that I started to read the primer for the Rome Foundation’s latest initiative, their Multi-Dimensional Clinical Profile (MDCP) for functional gastrointestinal disorders. In his introductory note, the editor acknowledged that making diagnosis of IBS is not sufficient to determine treatment and that there are many other factors that influence the way a patient experiences their condition and how they respond to different treatments. MDCP attempts to identify and classify these components into a treatment plan that suits the need of the individual with IBS. It incorporates not only the Rome diagnostic categories and their subdivisions, but also the personal impact of the disorder on the patient, psychosocial influences and the existence of physiological biomarkers. In doing so, MDCP seems to acknowledge IBS and other functional gastrointestinal illnesses as the expression of the individual patient, their life style, social circumstances, life experience, and their biological constitution, including the composition of their microbiome. IBS it would seem from the latest reincarnation of ‘Rome’ is a very complex condition, which can only be understood by dissecting out its myriad components and treat each of them.
But surely this is more of the same; more division, more categorisation, more control, but is there any real expectation it will be more effective. It just seems that this complicated proposal for multidimensional clinical profiling will require a whole library to accommodate Rome IV, which, depressingly, is due out this year. One might just as well try to classify ‘human life’.
Ancient Rome was sacked by barbarians; its empire transformed into a religion. Are we witnessing the decline and fall of the Rome Classifications, which are in danger of collapsing under their own weights of words? Or are we seeing the transformation of The Rome Foundation into a cult with little relevance or application to the understanding of illness?
IBS is just one expression of a much more widespread illness. Perhaps the future will focus less on the gut symptoms and more on how emotional trauma can be represented in a variety of psychological or bodily symptoms or how changes in the microbiome might affect the function of organs throughout the body.