Paradigm shifts within medicine happen slowly: surprisingly it takes 17 years for clinical practice to catch up with the evidence. This book presents a logical argument for chronic urinary tract infections (cUTI) as the cause of interstitial cystitis/bladder pain syndrome (IC/BPS) arising from 20 years of hard-fought scientific exploration, and it’s time that we pay attention. This is a must-read for those treating incontinence, repeat urinary infection and bladder pain syndrome, with the understanding that the biomedical model presented is but one important element of a complex and dynamic disease process that affects the whole lived experience of the person sat in your in clinic.
But this is more than a textbook, it’s a personal account of the work of Professor James Malone Lee’s team. They became prominent in 2015 with the closure of their controversial LUTS (lower urinary tract symptom) clinic and the subsequently successful patient-led high court battle for its reinstatement. This is also his opportunity to set the record straight on the “dipstick wars” with logical, humorous, well evidenced argument. And finally, it’s a contemplative study in how to do research well in the face of resistance.
The book is split into 10 chapters covering:
1 - The history of UTI
2 - A deep delve into statistics and why we cannot rely on current urine testing
3 - The difficulty the medical community has in changing usual practice in response to evidence, plus the author’s personal frustrated response to all their arguments
4 - Problems with the contemporary theories of bladder pain syndrome pathophysiology and treatments
5 - The tests used for UTI diagnosis and the spurious assumptions they are based upon
6 - What cystitis does to you and the data for cUTI
7 - The innate problems with randomised controlled trial (RCT)-led guidelines and an in depth discussion of their UTI treatment algorithm
8 – Why Anti Microbial Resistance (AMR) isn’t a problem in cUTI treatment
9 – Urothelial exfoliation and why we shouldn’t discard “contaminated” mid-stream urine tests
10 – Treating children with cUTI and patient perspectives
The author starts by covering the history of UTI, making political comments on the state of medicine, and providing historical perspectives in developing critical and mythical reasoning for symptoms not causes. He describes the current state of affairs as “imaginative invention, wrapped in jargon, is often used to answer inconvenient questions”. His writing is engaging and funny, passionate, expansively eloquent and with regular meandering digressions through his vast knowledge from the history of medical research theory to ancient Greek fables.
Chapter 2 should be mandatory reading for all university students. It’s rare that a chapter on statistics makes you laugh out loud: “If the p value were let go, the quack industry would require bereavement counselling.” He uses a sharp wit to both enlighten and explain the statistical failures behind current testing methods, and that assumptions which ignore the skewed data of patients mean 30% of current UTI sufferers are not covered by our current national guidance. He also asserts that we wrongfully rely on the power of tests to provide definitive results. It’s a compelling start that will arm any physiotherapist with the ability to be a better informed advocate for our patients with repeat UTIs.
However the chapter that follows is jarring. His frustration, hurt and disappointment is palpable as he analyses the fallacies of the arguments made against his team’s work. He talks of how the “corridors fill with insults, gossip, rumours, innuendo, and lies.” It makes for an uncomfortable read; a snapshot into the burden of years of unfounded ridicule by the medical establishment. This is his opportunity to set the record straight. He also provides a painfully honest reflection on the difficulties of negative patient feedback, how that feels and more effective responses to difficult cases. Within this open discourse of the clinical trials within their LUTS clinic is the beginning of a case for a very biomedical model of bladder pain. He sweepingly discredits any “psychosomatic” involvement in the disease, a theme we will return to later on.
Chapter 4 delivers more expected topics as he discusses IC/BPS definition and popular treatment. He suggests missed UTI is a fundamental issue that demands more attention, but is crucially not the same as claiming all cases are infection. He debates the illogical use of glycosaminoglycan (GAG) layer replacements, phages, cranberry, D-mannose and urovaccines, comparing common treatments to scams. His explanation of the immune response to infection is a particularly useful addition to the discussion around the significance of Hunner’s lesions and glomerulations; he likens them to a “nosebleed in winter cold season.” Although the prose is enjoyable, the continued airing of frustrations becomes tiring and some of the evidenced statements warrant clear explanations. For example, graphs of pyuria oscillations demonstrating treatment effect and the potential for missed UTIs were displayed, but not fully explained.
Chapter 5 returns to the strength of the book, discussing the tests used for UTI diagnosis and the spurious assumptions they are based upon. Again, this should be mandatory reading for all healthcare professionals working in urology. He defuncts the concept of “mixed growth of unknown consequence,” bemoaning all the patients lost to the system as their samples were unjustly discarded. He makes a reasoned case for why dipsticks are “insensitive and alarmingly unreliable” and that clinicians are wrongly attributing causation to abundance of bacteria, as “just because a bug is there doesn’t mean it caused the disease.” We begin to get a glimpse of the more complex interaction of the urinary microbiome and the difficulties in assessing symptom-causing growth versus reactive alterations to the microbiome that we can assess. “Trying to force the test to fit the disease phenotype” summarises this well.
What follows is a compelling argument that urine culture is hopelessly insensitive, missing numerous genuine infections. He then sets out, with detailed explanations, diagrams and confocal micrograph images how their data shows embedded infection mechanisms and the immune response to infection. Interestingly, he provides logical reasons for symptom flares, and that potentially post-void residual and some urinary incontinence may be due to asymptomatic cUTI. There’s also a persuasive analysis of the correlation between the increasing diagnoses of IC/BPS at the time when antibiotic guidelines were rewritten to advise a shorter 3-day course: “The contemporary situation is the consequence of the blind adherence to dubious guidelines, the insistence on using discredited tests and antibiotic treatments curtailed by misplaced fear of antimicrobial resistance”.
Malone Lee then discusses the initial failures in their treatment approach that led his team through an “error assimilation process” to the development of an individualised treatment algorithm of antibiotics and disinfectants based on the pyuria count from immediate microscopy of fresh unspun urine, and some consideration of patient symptoms. He provides the peer-reviewed evidence of their treatment approach and logical reasoned answers for why they treat for extended periods. It is convincing and provides valuable clinical insights for those of us treating patients receiving his care and also treating bladder pain, IC/BPS and urinary incontinence. However, at no point is there a discussion of multidisciplinary team input.
Chapter 8 looks at antimicrobial resistance (AMR), with a brief diversion through the evolution of orchids. One of the main criticisms of his team’s work with UTI is their use of prolonged antibiotic treatment and the perceived inherent risks. He discusses a more dynamic model of AMR where the presence of an antibiotic may cause some ‘selection bias’ for those microbes able to switch on resistance genes temporarily. Their 20 years’ data demonstrate an initial rise in AMR on culture which does not increase with prolonged antibiotic use, suggesting no greater risk than receiving a short course of antibiotics.
For those of us requesting urinalysis Chapter 9 answers the question of contamination with epithelial cells, allowing us to make more reasoned decisions regarding our testing preferences. Malone Lee takes us through the fascinating process of identifying the genetic source of epithelial cells in urine samples, the pathophysiology of why urothelial shedding occurs in cUTI patients, how his team proved this, and what effect taking a mid-stream urine sample has on accurately assessing for infection. Finally he presents the concerns regarding treating children, and his own experience. The book culminates with a range of powerful patient testimonies.
Without specific technical knowledge in this area we can only take the science presented at face value, and rely on the fact that as it was peer-reviewed and published within a hostile environment the methodology and data must support the assertions made. This is a landmark moment: the evidence for cUTI and a new management model is presented logically and well explained.
However, I was disappointed that a strict biomedical model of pathology was introduced. In discussing a subset of patients with more refractory disease he states “some searching microbiological studies must explain what is happening.” There is no reflection of the wider experience and data in the field of IC/BPS; with the evidenced central sensory and motor changes to neurogenic bladder centres, pelvic floor muscle autonomic neuropathy, vagal tone dysfunction, persisting sensory distortions of the vulva and urethra, or any demonstration of a current dynamic understanding of persisting visceral pain.
I can happily see how within his model these could be rationalised as secondary effects of a dynamic system in response to chronic infection, but they deserve more attention. These secondary effects do not abate with bladder treatment alone - experience and data have shown this. But we as physiotherapists are perfectly positioned to guide patients through this complex rehabilitation. He states “we think that our protocol is a temporary solution; we need a more sophisticated strategy” and I believe this has to include ongoing multimodal treatment within the MDT alongside appropriate testing and treatment for potential cUTI.
This is a book you will want to read to improve your management of incontinence and bladder pain, and to be a better-informed advocate for your patient. I’m left with no doubt that cUTI forms an important part of the IC/BPS picture. However, Professor Malone Lee presents a purely biological view of a complex pathology in a vulnerable population who deserve more than a uni-modular treatment, however compelling the data and argument to support it. Rehabilitation has to focus on more than just biological restoration of the bladder tissues. I would challenge all readers to use this as a launchpad to inspire the development of local cUTI services and ensure that multimodal, individualised therapy is central to all patient care.
Cystitis Unmasked By James Malone Lee
tfm Publishers Limited ISBN: 9781910079638
JPOGP Issue 129, Pgs 57-60