Here is a sample of them:
- James Malone-Lee, (see his prolific Twitter account full of wild claims), a retired 70+ year old ex-army doctor and geriatrician, who has a lucrative private practice in Harley Street, post-NHS, treating people with urinary tract "infections". Malone-Lee sees a bug in every bladder and is regarded with disdain by many people in the medical profession, who think he's a quack.1
- Kiren Gill, a gynaecologist and student of Malone-Lee's, who works alongside Malone-Lee in his clinic, and who wrote her 2016 thesis on "The role of bacterial infection and inflammation in the generation of overactive bladder symptoms."
- Ruth Kriz, an old nurse who has had IC for decades, and now takes antibiotics almost continuously. She is "slowly recovering", she says (update: she now says she has ceased taking antibiotics). She has become a Messiah for people with IC who have an "idée fixe" about infection, and she liberally dispenses her cockeyed advice in the role of physician. So Kriz is a nurse who thinks she's a doctor (and even a researcher) who has "discovered" the link between IC/BPS and bacteria, biofilms, etc. It's the UCPPS world's equivalent of QAnon, that's how dumb this is.
- Stewart Bundrick, a uro in Shreveport, La, treats IC patients thusly: "He does DNA urine tests and treats with long-term high dose antibiotics."
- Others cashing in on this scam: Michael Hsieh (US), and from the UK: Ased Ali, Sohier Elneil, Rajvinder Khasriya, Vikram Khullar, Catriona Anderson
Malone-Lee and his acolyte Kiren Gill are behind a big push in the UK to label OAB as an 'embedded infection'. This is just the latest iteration of something I have seen several times over the last 30 years, starting with people like Paul Fugazzotto (now deceased), a microbiologist who ran a nice little racket from his backyard shed, getting people to mail in their urine samples (a week at room temperature!) for extensive "testing" in his homemade lab. Of course, he always found "infections" and his victims clients were then urged to seek months of antibiotics treatment. Ruth Kriz is a similar figure. Unsurprisingly, she and Fugazzotto were a team. She's also a big promoter of a company I consider to be scammers, MicrogenDx.
These mavericks all announce the "discovery" that IC, OAB or CPPS is infectious in origin, and must be treated with marathon courses of antibiotics.
None of these self-anointed Einsteins knows or admits antibiotics are anti-inflammatories. None of them understands that the urothelium can be inflamed by nerves and not only microbes. And none of them knows (or admits) that a disturbed urobiome can be an effect and not a cause of dysfunction.
Kiren Gill, a Barry Marshall wannabe (Barry Marshall was the Australian H.pylori-stomach ulcer link discoverer), has an 'open access' (read: junky) paper out showing that 64% of women who had taken antibiotics for over a YEAR on average (and some much longer) were "very much better" (not cured). And another 20% were "much better". When you take into account the passing of time, the anti-inflammatory effect of antibiotics, and the placebo effect (worth around 30% of the "improved", according to studies on the placebo effect), the results are horrible. There should be 95%-100% cured, if these patients really had infections.
And then there's the attrition rate: people who are not being helped by the antibiotics, whose genetic makeup makes them less susceptible to the anti-inflammatory effects of antibiotics, drop out of such studies. Would you keep taking gut-disrupting antibiotics after several months of no improvement? No, nor would I. So the researcher is left with a core of patients that has self selected for success (if you can call feeling better but not cured a "success"). Of course, the drop-outs should be reported accurately, but were they? There is immense pressure to sweep drop-outs under the carpet, to fudge the numbers, for grant money and reputational reasons. To me, the study looks like a mess:
The cardinal error Gill and Malone-Lee make is an elementary one: that inflammation must equal infection. Testing OAB patients, they found that OAB patients have more and different bacteria than controls, but the numbers of bacteria still fall well below the log score needed to denote infection. Well, no surprises here: the OAB cohort has an inflamed urothelial lining, so of course the microbiome will differ, and signs of inflammation will be present. To make the huge intellectual leap from pus cells and a differing microbiome to the conclusion that these differences denote infection is wildly unjustified. And when these people are treated with antimicrobials, they don't recover long term. And of course we'd know by now if OAB or IC or UCPPS was an infection. They've been using PCR on these patients for years, and using targeted antibiotics, without durable results.We tested the need for ongoing treatment empirically by stopping antimicrobial therapy. Treatment cessation was permitted once any reduction in LUTS had reached a steady state and pyuria had cleared. If symptoms recurred, the occurrence was documented and treatment reinstated. Thus, we stopped treatment 858 times and restarted 633 (74%) times on recurrence. Amongst patients with pain symptoms, relapses were associated with significantly higher pain scores (mean = 4.2; 95% CI = 3.6–4.9) compared with their symptoms at the beginning of treatment (mean = 2.7; 95% CI = 2.2–3.2) (p = 0.001).
Two hundred and twenty-five women completed treatment and were discharged. The median number of patient visits was five (mean = 6.6; SD = 5), with 40% of women discharged after four visits and 80% within ten. Mean treatment length was 383 days, with a significant variation in duration (SD = 347; 95% CI = 337–428). Some patients required long-term therapy, as attempts to withdraw treatment were associated with relapse.
And let's not forget the downside. What Gill reluctantly admits is that some of her patients developed serious Clostridium difficile bowel infections, and one spent months in hospital because of an antibiotic-induced eosinophilic pneumonitis. You know, trivial stuff like that.
There are many naïve patients who believe that any pus cell in the urine or other genitourinary tract secretions or excretions are signs of infection. But that's simply wrong; sterile pyuria (pus in urine) is common.
Some anecdotal accounts of Malone-Lee's clinic suggest blatant medical malpractice. A Facebook account relates the story of one of his patients who was diagnosed with embedded UTI based on the presence of 2 WBCs (pus cells) in the urine and was then prescribed long courses of antibiotics. As someone said: "Candidly, I'd like to know how many people walk in their doors and don't walk out with that diagnosis and a script for 6 months+ of antibiotics."
Other hallmarks that spike the Quack-O-Meter: He seems to relish the role of disruptor and outsider — just look at his twitter feed, full of self-aggrandizing codswallop. That's typical of quack psychology. What other signs of quackery can we see? Using well known criteria for quacks:
Malone-Lee Quack Score
|Be wary of treatments that allegedly work for a wide variety of conditions.||*|
|Practitioners who reject conventional treatment.|
|Practitioners who can’t provide a suitable answer as to why mainstream medicine or education has not adopted their methods, other than the wider world having competing interests.|
Quack score: 100%
Here are some quotes from Malone-Lee, absolutely dripping with irony:
andIf you must pontificate when you have not, and will not, read the science properly; then you should not complain when others make the mistake of assessing your output as the effluvia of a duck-brained bollocks mangle
And Kriz should be removed from the nursing profession. Here's a quote:The anti-science lobbyists exhibit cult-like behaviours that include a haughty contempt for those who disagree, as with postmodernist critical theorists. Of greater concern, is the poisonous harm they & their acolytes visit on terribly vulnerable people.
She's using tests that identify bacteria over 99% of the time in ALL people (the urinary tract is not sterile) and using these results as "validation of infection", which is completely absurd. As someone said, she's using "bacteria" and "infection" interchangeably, and she's essentially trying to sterilize the urobiome with antibiotics, which is impossible.In the four years that I have been doing the DNA testing of urine, I have found infection 100% of the time in my patients that have been diagnosed with Interstitial Cystitis. I don't have a single person who has an IC diagnosis that we haven't found infection.
Run. a. million. miles.
Postscript: I have contacted the British Association of Urological Surgeons (BAUS) to complain about Malone-Lee's activities, which are bringing disrepute upon them.
1 - "My GP googled Professor Malone-Lee and his ideas and turned to me and said “he looks like a quack that has a fancy address in Harley Street, I’m not going to refer you to him" https://www.chronicutiinfo.com/accordio ... s-stories/