I've made previous comments about the owner here: https://www.ucpps.men/viewtopic.php?p=56343#p56343
Now, in one of her latest YouTube videos, there's this:
She keeps trying to justify her relentless and unapologetic promotion and sale of MicrogenDx tests at $200 a pop —where you mail in your urine at room temperature— by pointing to the Nickel study of 2016, but she's either lying or simply unable to understand what Nickel is really saying, which is:Jill Osborne wrote: ... it was our own National Institutes of Health who discovered five years ago that many patients who were flaring were flaring because they had Candida in their urine.
- 16% of flaring IC patients had tiny traces of Candida in urine, vs 4% of non-flaring
- Nickel did not claim that Candida is causing the flares. An IC patient in a flare likely has an inflamed urothelium, and an inflamed urothelium is a more receptive surface for a fungus than a healthy urothelium. However the fact that a fungus has taken advantage of the receptive surface does not mean it has caused the situation. Nickel knows this, but Osborne will not admit it, preferring to spread FUD and profit from the MicrogenDx test referrals.
- Nickel admitted that the traces of Candida could be from anywhere, including urethra, introitus and vagina
- Nickel admits the elephant in the room, namely that he did not properly and thoroughly investigate prior antibiotic use in patients (flaring women are MUCH more likely to have taken antibiotics in the last 6 months, which will tend to promote Candida and other fungi). He says: "The available antibiotic use data were not comprehensive (yes or no only) and we could not account for the scope of antibiotic use during the previous 2 years". People forget when they last took an antibiotic, and many do not even know that a drug they are taking is an antibiotic.
- Nickel called for the findings to be replicated. They never were.
And what did he find this time?
- 92.4% of IC patients had no fungal species in their urine, at all
- Comparing Candida in flare vs non-flare patients, the differences were tiny. For instance, Candida was present in 3/128 non-flarers (2.2%), and in 1/28 flarers (3.6%). These are figures that barely reach any statistical significance
- Nickel then admits that "The absence of differences in IC/BPS participants with self-reported flares compared to those with no flares as well as the participants with high vs low pain severity, would seem to negate the importance of fungi in IC/BPS".
- The only area he could find differences in fungal status between flarers and non-flarers was in the "urinary severity" measurement. So no link to pain, a possible link to frequency.
- Nickel tested on two nexgen PCR levels, a basic level and a more complete, "sensitive" level, which looked at all genera of fungi. The more complete tests "did not show any significant associations between fungal composition and flare status, pain, or urinary symptoms severity".
So if you combine these fungal findings with the fact that women with IC flares have no bacteriological differences to women without flares, you have to question the overall utility of PCR testing to IC/BPS patients.A previously published comparison, employing similar non-culture technology, did not identify a difference in the “bacterial” microbiota of women with IC/BPS who reported flares compared to those who did not report a flare
So much for mail-in next generation sequencing for helping to diagnose/treat UCPPS. A waste of money. You could even call the selling of these tests to gullible patients a scam.
Consequently, selling expensive mail-in nexgen tests to the UCPPS patient cohort (whether IC/BPS or CPPS) is really very questionable. I wrote to Osborne advising her to stop doing this to protect her own reputation, but she has ignored me.
"It is difficult to get a man to understand something, when his salary depends upon his not understanding it!" — Upton Sinclair (1935)