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 Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing

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Jill1947



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PostSubject: Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing   Mon Jul 18, 2016 11:32 pm

I’ve noted several posts on this forum questioning the validity of urine testing. I’m in the UK and there are a number of practicing specialists who have been voicing serious concerns with urine culturing methods for some time. Earlier this month, in a parliamentary meeting room, a group of UK MPs gathered to hear a talk given by Prof Malone-Lee (head of a unique NHS clinic in the UK treating and researching chronic lower urinary tract bladder symptoms) and Professor Maria de Iorio (biostatistician at University College London).

Prof Malone-Lee’s talk focussed on the inadequacy of current urine testing in the UK, and how this can lead to a chronic debilitating bladder disease being missed (eg. recurrent and chronic UTIs, overactive bladder, IC/PBS, prostatitis). Prof Malone-Lee discussed the science behind the condition and the pioneering research work that has led to the condition’s being recognized.

The discussion described the sequence of events for a woman presenting with a UTI.
How treatment follows set guidelines that include dipstick testing and possibly a sample being sent to a laboratory for culturing.
The Professor then focused on the findings that 50% of dipstick tests, and 50% of urine cultures, miss the infection, and that a negative test would be assumed to indicate no infection.
In the event that patients are prescribed antibiotics, they would typically be given a 3 day course, and that, even if they have taken longer courses, 20 – 30% of patients will still fail antibiotic treatment.

The discussion touched on how UK microbiologists acknowledge that urine cultures are inadequate, but that they are the best they’ve got.

The Professor discussed how in the past doctors would take symptoms, examine the patient and make a diagnosis and that this no longer the case. Diagnosis is almost solely based on the urine test.

The discussion moved to the Kass Criteria, which are considered the gold standard in diagnosing a bladder infection. It was explained that the Kass Criteria were based on very sick patients with a kidney infection, so were not generally applicable to patients with bladder infections; that infection is along a continuum so can’t be forced into categories – ie if you are below or above a certain threshold you do or don’t have an infection.

Professor Maria de Iorio talked about the current diagnostic tests and their outcomes and how the methods used in Professor Malone-Lee’s clinic make mathematical (Bayesian) sense in predicting the diagnosis.*

Her presentation showed predictive value of dipsticks and urine cultures – both missing 50% of infection.

She also discussed symptoms and their correlation with predicting the presence of infection.

Voiding symptoms indicate a high probability of UTI.
Voiding symptoms when combined with urgency and stress incontinence symptoms indicate also a high degree of inflammation and high probability of UTI.
Urgency and incontinence alone was found to correlate with a low probability of having an infection.
Large numbers of white blood cells are connected with inflammation and UTI.
The need to consider symptoms and WBC when making a diagnosis.

Three sufferers of the condition (one the father of a 7 year old girl) described the impact the disease has had on their lives and how Prof Malone-Lee's treatment protocol has hugely improved their quality of life.

Some MPs expressed shock at the data on testing and felt it important to bring this to the attention of NHS England.

There was general agreement that this is a good subject for an adjournment debate and that interested MPs present should apply for an adjournment debate in the autumn. (In parliament there is a half-hour adjournment debate at the end of each day’s sitting. These debates are an opportunity for an individual backbench MP to raise an issue and receive a response from the relevant Minister)
Catherine West MP said loud and clear that the way MPs can help is to “make waves” and highlight these kinds of issues.

*Professor Malone-Lee said the best way of predicting urine infection is looking at fresh urine under a microscope; looking at the white blood cell count and also taking into account symptoms. Nurses can be trained to do this. Patients need to be present as it is fresh urine. This way of diagnosing patients is based on Addis’ work (1928) and part of the problem is getting doctors to look back to the past, and take up a past practice, they are reluctant to do so.

I’ve read in another post on this forum that looking for white blood cells under a microscope at the first point of contact (doctor’s rooms) is how a UTI diagnosis is made today in the Netherlands.
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Andi2016

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PostSubject: Re: Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing   Wed Jul 20, 2016 4:14 pm

What a great meeting! You are much further along in the UK than we are in Australia. In my whole experience with this, not one single professional I've dealt with thinks there's any cause to question the testing. I'm the problem ... I'm failing the test. My husband kept telling me I was doing something that affected the test results, and he kept telling me to get off Ural before giving a sample. But now I realise it was the hugely diluted urine sample - and the dodgy testing criteria. After a series of negative tests and then a big huge acute infection that tested positive, one urologist told me I'd had a low grade infection that had been flying under the radar. But still, he didn't think there was a problem with the testing (??).

Thank you for posting. I posted this in another thread, but it's relevant here. This is the UK's Professor Malone-Lee talking about problems with urine testing: http://health.spectator.co.uk/botox-for-your-bladder-and-other-incontinence-treatments-that-work/

The title is: Botox for your bladder… and other incontinence treatments that work. Many regular remedies are worse than useless, warns a leading specialist


"The checking of urine for infection is another vale of tears. If a doctor or nurse dips a test stick into your urine and it turns positive for leucocytes or nitrites, then the nature of the test means that you definitely have a urinary-tract infection. But if the test is negative, the sensitivity is such that there is no justification for claiming you do not have an infection. If your urine is then sent to the lab for culture and a microbe is isolated, it’s likely that this microbe is contributing to your distress. But if the culture is negative it is again wrong to claim this proves an absence of infection; the culture is too insensitive. For these reasons, negative tests are unhelpful and a cause of terrible suffering. Many women with the appropriate symptoms are dismissed as not suffering from an infection when they do in fact have one. This controversial view is supported by much published literature. I am sorry to record this, because in doing so I identify a worrying deficiency in our diagnostic protocols, but the evidence is out there for everyone to read. Science points to clinical history and examination as the best means of finding a diagnosis.

"In writing about miserable symptoms that needlessly blight the lives of too many people, I am critical of the approaches to care that are currently promoted and knowingly risk opprobrium. However, the published evidence persuades me that we should re-evaluate current practices and in many cases replace them.

"I am close to retirement now and I do not believe that this critical reappraisal will come easily from the clinical professions or the health service bureaucracies. I am, however, optimistic. The most impressive change in medicine I have seen in my career is the freedom, gifted by the internet, for patients to become well informed about their own conditions. They can form themselves into campaign and support groups of similarly affected peers and these can be an astonishingly powerful force. Thus, if you are suffering from urinary symptoms, I encourage you towards the Cystitis and Overactive Bladder Foundation (COB) website where the various forums provide more wisdom than I can offer.

"By banding together like this, informed sufferers can campaign for the right to receive rational care, rooted in the practical wisdom of medicine’s ethical history, with technology deployed only when appropriate and after diligent forethought."




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Tina2



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PostSubject: Re: Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing   Sun Jul 24, 2016 6:33 am

It is very sad and concerning we do not even have a COB web site specific to Aus. It seems here in Aus we are way behind the rest of the world in understanding and treating bladder issues.
'I am super sensative to chemicals and this just ads to the frustration. Initially given Vesicare it barely took the edge of the constant frequency but caused cronic constipation. Now given Oxubutinin it took a month of slowly working up from a 1/4 tablet a day to reach 1 tablet a day that worked for a few weeks but now no longer works. I added an extra 1/2 tablet and instant result was muscle cramps and severe pains in my head exactly as the statins I took did, so it must be the fillers in these tablets we are sensative to.
Sorry getting off track. I constantly am having urine tests at the GP who says - no infection but there are raised white cells ?? off to the lab and no infection so no treatment. I managed to get one GP to give me a course of antibiotics that took the edge off things, the repete was made by a different company though the same brand, instant reaction of migraines. Back to the GP to ask for a new script so I could get a second course made by the first manufacturer to be told - oh well if the first 7 days didnt work you dont have an infection and so no script needed.
Why cant we have things like Ozone treatment and Stem Cell treatment available here in Aus ? Why are we so far behind the rest of the world. I am sick of living in the toilet, sick of the looks from GPs, sick of being told to see a Uro who only wants to try more invasive procedures that dont work and just make things worse. Surely in this day and age there must be something that can fix this problem with out making us even sicker and having no impact on the problem. Sorry for the rant but I am so over this destroying my life.
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Jill1947



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PostSubject: Re: Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing   Sun Jul 24, 2016 7:55 pm

Tina, totally empathize with the need for a rant.  This ‘thing’ wrecks lives.  
Professor Malone-Lee is right, the internet has given us a powerful tool with which to pull together and stop the ignorance surrounding this disease.  

The recent meeting with MPs in the UK parliament only took place because sufferers banded together and targeted their MPs to act.  The shocked reaction from some MPs did not surprise us.    I’m thrilled that ‘the little people’ can, if they really try, get their voices heard.    

In my view it’s important that we alert government health ministers, through our MPs, that we’ve had enough;  that we’re informed and increasingly more aware of what might be wrong, and, importantly, what might realistically be changed/improved.  

Also, if doctors won’t listen we have to ‘drip-feed’ them good, evidence based information until they do.  Getting GPs sympathetic is a start, even if they feel unable to go against guidelines.  It’s awfully slow but dogged persistence can sometimes pay off.

I don’t believe this disease is rare.  It seemed clear from the level of MP support and their reactions that some know of a friend/relative with chronic bladder problems.

Below is a copy of the handout MPs received at the end of the meeting.  

“The betrayal of the cystitis sufferer”

Urinary tract infection (cystitis / UTI) affects 150 million people worldwide each year: 33% of women are expected to suffer before they are 24.

Women presenting with symptoms of UTI in primary care will be managed according to a guideline, there are several of these; they are contradictory and most ignore the published science.

The assumption that UTI will always cause pain is wrong, in fact pain may be a late manifestation

The advice to increase fluid intake is not based on evidence. The practice dilutes the urine of natural immune chemicals and antibiotics, if prescribed. The dilution of pathological markers in the urine may falsely imply recovery.

Cranberry juice is not effective

Many practices will test the urine with dipsticks and, if these prove negative, the patient is informed that there be no infection. This is incorrect advice and confuses no evidence of disease with evidence of no disease. The dipstick test will miss well over 50% of all infections.

If a urine sample is sent to the laboratory for culture, and this is reported as negative, it is probable that this will be assumed to refute the diagnosis of UTI. This is also wrong; the standard MSU culture will also miss well over 50% of all infections, so that a negative test is not evidence of no disease.

If the patient is fortunate enough to be diagnosed with a UTI it is possible that she may be prescribed antibiotics, typically for three days. This may not work: 20% to 30% of patients will fail recommended treatment whether prescribed for three days or 14 days. If she complains that she has not recovered is likely to be dismissed: She will have been advised to drink plenty, her urine, suitably diluted, will be devoid of pathological signals. Thus it is assumed that she must be better – The test says so.

These facts have been available in the scientific literature for a large number of years. The standard guidelines seem to ignore this evidence placing people at risk of being denied appropriate treatment. We do not know the consequences of untreated UTI persisting over months or years, but it may reap harm. The current anxieties about antibiotic resistance make it harder to bring sober reflection to this problem.

This may be an orphan subject but a cause of immense suffering for many people

James Malone-Lee MD FRCP
Professor of Medicine, Whittington Campus, UCL Medical School
6th July 2016”
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Tina2



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PostSubject: Re: Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing   Sun Jul 24, 2016 8:35 pm

Thank you Jill, we are blessed to have Prof Marshall and Prof Malone-Lee standing up and trying to help us. I would have like to have seen his letter detail more of what this disease actually does to people and how many consider the S word when things become totally unbarable. I would like to see the reaction of MPs to the fact many of us "live in the toilet" going 20 to 30 times a day is the "normal" for us, that many are up 6 or more times through the night, that we live with constant burning, and pain one finds hard to describe. That shopping trips are based around where public toilets are. That a normal physical relationship is totally out of the question. We dont go out to dinner because there is little we dare eat. There is much more but I am sure you understand.
To top it off to have GPs tell you there is nothing they can do and would you like to speak to a councillor is an insult, and finally if and when a treatment is found it will very much depend on wether one can afford the treatment ( at least here in Aus) Maybe then someone will listen and offer financial help to people like the Profs who are doing there very best to help us with so little financial support
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Andi2016

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PostSubject: Re: Professor Malone-Lee's talk to UK MPs on the inadequacies of current urine testing   Thu Jul 28, 2016 12:59 pm

Tina2 wrote:
It is very sad and concerning we do not even have a COB web site specific to Aus. It seems here in Aus we are way behind the rest of the world in understanding and treating bladder issues.
'I am super sensative to chemicals and this just ads to the frustration. Initially given Vesicare it barely took the edge of the constant frequency but caused cronic constipation. Now given Oxubutinin it took a month of slowly working up from a 1/4 tablet a day to reach 1 tablet a day that worked for a few weeks but now no longer works. I added an extra 1/2 tablet and instant result was muscle cramps and severe pains in my head exactly as the statins I took did, so it must be the fillers in these tablets we are sensative to.
Sorry getting off track. I constantly am having urine tests at the GP who says - no infection but there are raised white cells ?? off to the lab and no infection so no treatment. I managed to get one GP to give me a course of antibiotics that took the edge off things, the repete was made by a different company though the same brand, instant reaction of migraines. Back to the GP to ask for a new script so I could get a second course made by the first manufacturer to be told - oh well if the first 7 days didnt work you dont have an infection and so no script needed.
Why cant we have things like Ozone treatment and Stem Cell treatment available here in Aus ? Why are we so far behind the rest of the world. I am sick of living in the toilet, sick of the looks from GPs, sick of being told to see a Uro who only wants to try more invasive procedures that dont work and just make things worse. Surely in this day and age there must be something that can fix this problem with out making us even sicker and having no impact on the problem. Sorry for the rant but I am so over this destroying my life.

Tina2, this is what I find so astounding. Your GP will allow you to continue on with other medications that aren't helping your symptoms and are causing a number of clear side effects, Yet he/she won't allow you to continue a second week on antibiotics? Only an acute infection could be expected to respond to a short-course.

I followed a post in another group from an Australian lady who suffers chronic pelvic pain. Her gynaecologist has her on a medication that hasn't helped her pelvic pain at all, but she has a list of at least 10 new side effects that she's developed - some annoying, some quite debilitating- but serious enough to stop her from functioning normally. And her specialist tells her to stick it out for at least 6 months before admitting defeat. Go figure that.
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