Warning about IC Network

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webslave
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Warning about IC Network

Post by webslave »

I feel I have to warn people about the site ic-network.com because the owner Jill Osborne is now targeting men as well as women.

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:
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.
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:
  1. 16% of flaring IC patients had tiny traces of Candida in urine, vs 4% of non-flaring
  2. 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.
  3. Nickel admitted that the traces of Candida could be from anywhere, including urethra, introitus and vagina
  4. 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.
  5. Nickel called for the findings to be replicated. They never were.
The only person who followed up on this study was ... Nickel himself, in 2020.

And what did he find this time?
  1. 92.4% of IC patients had no fungal species in their urine, at all
  2. 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
  3. 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".
  4. 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.
  5. 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".
Nickel also states:
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 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.

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)
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Re: Warning about IC Network

Post by webslave »

In addition to the misrepresentation of fungal infections above, Osborne is disseminating a lot of other medical misinformation. I listened to one of her recent videos and the nonsense was flowing thick and fast. :crazy:

Topical estrogen

Osborne constantly claims that topical estrogen creams have zero systemic effect and are not absorbed into the bloodstream:
Jill Osborne wrote:Topical estrogen is remarkably safe because it stays in the skin ... it is not distributed throughout the body it does not penetrate into the blood vessels where it's distributed throughout your body
But she is simply wrong about this. In fact, topical estrogen stopped my wife's hot flashes. And here's the science:
Intravaginally administered estrogen can have effects beyond treatment of atrophic vaginitis, including improvement of vasomotor symptoms (hot flashes or hot flushes), and possibly lipid profiles and bone density.
Source: Systemic Effects of Vaginally Administered Estrogen Therapy: A Review

Kidney Stones
Jill Osborne wrote:13m:50s — The problem with kidney stones is that they are very very sharp
Fact: 80% of kidney stones are composed of calcium oxalate. CaOx monohydrate stones, the most common type of calcium oxalate, "have smooth surfaces" Source
Jill Osborne wrote:14:30 — They put you on a "very high acid diet" if you have a kidney stones, "they have you taking lots of vitamin C, drinking lemonade, stuff like that"
Fact: Vitamin C is never given for kidney stones, in fact Vitamin C is a well known cause of kidney stones. A high acid diet that makes urine acidic and provokes IC is never used to treat kidney stones. In fact, the only times the diet pH is altered to treat stones is if you have a uric acid stone, in which case alkalinizers are used e.g. sodium bicarbonate, or if you are prescribed citrate (sometimes in the form of natural lemonade, not soda lemonade), which also raises urine pH. So she completely misunderstands what's happening here.

Causes of Male UCPPS
Jill Osborne wrote:1:09:30 — 90% of the men [with UCPPS] I work with have an underlying pelvic trauma
There are simply NO studies that suggest men with UCPPS have underlying pelvic trauma as a cause. It's simply wilful misinformation to claim 90% of men with UCPPS have trauma to their pelvis. This is an opinion sucked from her thumb, there is no confirmation in any study of this. She then backs up this wild claim with several anecdotes that justify her position, but I have dealt with thousands of men over the last 30 years, and trauma is a very unusual triggering event, in my experience.

Chronic Testicle Pain (Orchialgia)
Jill Osborne wrote:1:10 onwards — We had last year a very important research study came out that showed that 70% of the men with testicular pain, pain in their testicles, had a bad hip. They had a bad hip!
She's referring to a 2020 study called "Hip Joint Pathology Among Men Referred to Urology for Chronic Orchialgia: A Source for Misdiagnosis and Opportunity for Quality Improvement". Once again, her lazy approach to studies means she has misunderstood what's being said.

The study looked only at men seen for chronic testicle pain who then had a hip MRI ordered for a clinical indication (for example, hip pain). 80% (not 70%) of such men have problems with their hips, and of those whose hips were treated, most found some relief with the testicle pain. Conclusion: if you have hip pain it can radiate to your balls. But if all men with chronic testicle pain had a routine MRI the incidence would be much lower, about the same as the incidence of MRI findings in aged matched men who do not have testicle pain.

She repeats the nonsense in this video (from 1:12:00):
... research study a couple years ago found that 70% of the men who had testicular pain had an underlying hip abnormality that required referral to orthopedics to fix their hip...
Absolutely wrong.


Conclusion: The "IC Network" is becoming a source of misinformation, and we need to make people aware of this.


Interesting note: She's always flogging her new book "IC 101" ($25 on Amazon) that she says has a low price markup, costs $17 to print, but now claims that if you want to buy it in bulk she'll give you a "huge discount, like a lot of money off". So she claims there's a $8 markup, but huge discounts are possible. 🥴
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Re: Warning about IC Network

Post by webslave »

The misinformation just keeps flowing from the IC Network. The latest howler is the claim that:
IC Network wrote:we have a consumer alert about aspartame and cancer. That's what I love to do is do consumer alert stuff. We now know that aspartame is absolutely linked to cancer, no doubt about it, the more you're exposed to the higher the risk.
She's referring to an old and debunked finding from the disreputable Italian college called the Ramazzini Institute. I best let others describe this place:
The Genetic Literacy Project wrote:What are these new findings? These are old findings from studies done in 2006 and 2007 by the Ramazzini Institute. The Ramazzini Institute has been repeatedly criticized for its lack of quality control. This first came to light over ten years ago when it became apparent that no matter what substance was tested by the Ramazzini Institute, the results were always positive for carcinogenicity.

Several organizations have reviewed the findings from the Ramazzini Institute on aspartame and concluded that they were without merit. In 2013, the European Food Safety Authority (EFSA) concluded that due to uncertainties in the tumor diagnosis and health issues with the experimental animals, there was insufficient evidence to conclude that aspartame caused tumors in these studies.

Another article evaluated the reliability of the available studies investigating possible links between aspartame and cancer. The Ramazzini Institute was the only organization among the nine that was scored “not reliable,” while all the others were found to be “reliable with restriction.”

These issues with the Ramazzini Institute are neither new nor unique to aspartame. In fact, in 2010, the EPA put four of its ongoing chemical assessments on hold while it reviewed data from the Ramazzini Institute used in their assessments. The EPA no longer uses data from Ramazzini.
The FDA and EFSA have rejected the supposed link between aspartame and cancer as flawed science:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8456655/

But this does not stop Ms Osborne from pushing it as "a sure thing". Of course, she sells honey and D-Mannose, in case you need a sweetener replacement.
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