Professor Jones has been managing PBC for nearly 33 years now and helps run one of the largest clinical services dedicated to the condition in the world, at the Freeman Hospital in Newcastle upon Tyne in the UK. He had had the good fortune to be able to build on the work of two of the true pioneers in the field, Professor Oliver James and Professor Maggie Bassendine. His great interest has always been in the way the disease impacts on the lives of PBC patients. The symptoms and their impact on quality of life (in particular the fatigue that bedevils so many patients). The frustration that many patients feel at the challenge of getting access to up to date treatment in a disease often under-estimated by the general medical community (the more so at a time when treatment options are developing rapidly).

One of his missions, working with the patient groups such as the PBC Foundation and LIVErNORTH who do so much to support patients, has been to help patients and their families understand the disease and the way that it affects them better. A thing that always surprised him was the lack of an easily accessible book explaining the disease aimed at patients and families that he could recommend in the clinic. In 2019 it was easier to buy a PBC T-shirt than a book explaining the disease. After a working lifetime of talking about the disease in ways that people (hopefully) understand he always intended to write that book. In late 2019, on a holiday in the Alps when the snow wouldn’t stop falling he finally decided to do it, and started to write PBC; The Definitive Guide for Patients with Primary Biliary Cholangitis.

When the manuscript was half completed the world changed with the onset of the COVID-19 pandemic. Although the PBC patient community did not appear to be particularly disproportionately impacted by COVID itself, there was a more subtle consequence. The needs of the emergency clinical service meant that even the best clinical services struggled to deliver the same level of care as before to their PBC patients. The need for patients to be in control of their own destiny, to be able to understand and manage their disease themselves as much as possible became clear. This made the need for a book like this more pressing than ever. Chapters 9 and 10, which explore living with PBC and speculate about the future were written once the potential long term impacts of COVID-19 became clear and with the need to make PBC care delivery more resilient very much in mind. This first edition of the book was published in June 2020.  

Our awareness and understanding of PBC, and the application of this knowledge to the development of better treatments, has, however, increased almost exponentially over the last three years (to the huge advantage of patients, of course). It was always in his mind that a one-off book, no matter how useful at the time, could date quickly, and that updated versions would be needed. This has proved to be the case and led to this second edition being written. There is nothing in the original edition which has proved to be “wrong”. However, in some areas it doesn’t go far enough into emerging thinking; something that the feedback to the first edition tells him PBC patients are very keen to hear about. In particular, the range of emerging drugs has continued to expand and more detail is now given on these drugs and how we can best use them. There is also new thinking about the causes of fatigue in PBC and how we can potentially treat it. This is one of the most exciting developing areas in the whole field of PBC. There is a further significant change in what has turned out to be a significantly expanded book. To help you identify the areas where thinking and practice have changed (and to help you to make sure you are benefitting from that new thinking) he has included a new chapter explaining how the world of PBC has changed since the publication of the first edition of the book. In writing the first edition he set out to try and answer all the questions he had ever been asked by patients about PBC. Following the publication of the first edition he has had a huge amount of very constructive feedback and a number of suggestions (all of which he has incorporated). One of these was to try and directly answer the most frequently asked questions in a question and answer format, rather than just including the answers in the text chapters. He has therefore included a “frequently asked questions” section as an appendix. We hope you find it useful.