Raising Awareness to Pseudoscience, Quackery and Scams

[TuxedoCat]

@Contrast @JohnAdams @threefirefour

Guys, once in awhile I've gone over to MMP, looked around and noticed that you are quite active in identifying pseudoscience, quackery and scams. So I want to propose an idea to you.

Background

I also belong to a few Tinnitus Groups on Facebook and notice that people are sometimes buying these products like Ringease or Lipoflavonoids or asking others if its worked for them. Sometimes I've posted a response saying, "why don't you donate the money to legitimate research instead of spending it on unproven and ineffective treatments."

Recently Frederic posted a journal article that was directed at ENTs pointing out the fact that some of these products are being recommended by ENTs and suggesting that professional journals should not carry adverts about these products. I think they were targeting Lipoflav0noids in particular.

Well, this got me very annoyed because people are buying this stuff because they are desperate for relief and ENTs are recommending them because they want and need a treatment that will help their tinnitus patients. So, I wrote a letter to the corresponding author on the journal article.

The Idea

I would like to post some version of the letter I wrote to Dr. Jackler on Tinnitus Talk, Tweet about it and have people start a discussion about scams, if they've tried these products and had success or felt like they've been ripped off, if their ENT or Audiologist recommended it to them and your experience with identifying and putting scammers out of business.

Benefits

• Raise awareness of Tinnitus Talk
• Raise awareness of unproven and expensive products
• Raise awareness of the need for effective treatments leading to a cure
• Raise awareness to the possibility of an email campaign to funding agencies alerting them that more money for research is needed (just want to plant the idea, not expecting it to take off)
• Teach TuxedoCat how to use Twitter and Tweet stuff

So what do you guys think?
TC

 

[TuxedoCat]

@C0ntrast @JohnAdams @threefirefour

Here is the letter I emailed to Dr. Jackler -

Dear Dr. Jackler,

I am a member of Tinnitus Talk, the online support forum for the tinnitus community. Recently one of our members posted the abstract of your recent article Over-the-Counter Tinnitus "Cures": Marketers' Promises Do Not Ring True in which you and your co-authors inform otolaryngologists that OTC remedies for tinnitus are unproven and go on to urge specialty organizations in the field to oppose advertisements that claim the products are recommended by otolaryngologists.

While I agree with the message of your article, I would like to suggest that you consider the deeper issue which enables these products to flourish with support from healthcare professionals.

The first records of tinnitus date from the era of ancient Egypt, yet five thousand years later there are no effective treatments for the condition. The American Tinnitus Association reports that nearly 20 million Americans are dealing with burdensome tinnitus on a regular basis and approximately 2 million are struggling with severe, sometimes debilitating tinnitus. The tinnitus community is desperate for relief, making it the target for products based on pseudoscience and quackery. Tinnitus sufferers are seeking medical help from their primary care physicians and ear nose and throat specialists only to be told to "learn to live with it". Tinnitus sufferers deserve better than this. Otolaryngologists are turning to and endorsing unproven OTC products because they need treatments for their tinnitus patients. In order to fulfill this need, more tinnitus research, based in the hard sciences, is needed.

The National Deafness and Other Communication Disorders (NDCD) Advisory Council advises the National Institutes of Health on matters relating to the support of research and health information dissemination. On behalf of the tinnitus community, I urge you, your co-authors, all primary care physicians, otolaryngologists and other healthcare professionals to contact Judith Cooper, PhD, Acting Director, National Institute on Deafness and Other Communication Disorders, cooperj@nidcd.hih.gov, and request funding for more research for effective treatments leading to cures for tinnitus. The availability of effective medical treatment, and not just management strategies, will put an end to the market for nutritional supplements claiming to provide relief or cure tinnitus.

Until this occurs, it is likely that unproven OTC products will continue to be available and the medical community will remain complicit in promoting such ineffective and overpriced products to their tinnitus patients.

Sincerely,

 

[JohnAdams]

@Contrast @JohnAdams @threefirefour

Guys, once in awhile I've gone over to MMP, looked around and noticed that you are quite active in identifying pseudoscience, quackery and scams. So I want to propose an idea to you.

Background

I also belong to a few Tinnitus Groups on Facebook and notice that people are sometimes buying these products like Ringease or Lipoflavonoids or asking others if its worked for them. Sometimes I've posted a response saying, "why don't you donate the money on legitimate research instead of spending it on unproven and ineffective treatments."

Recently Frederic posted a journal article that was directed at ENTs pointing out the fact that some of these products are being recommended by ENTs and suggesting that professional journals should not carry adverts about these products. I think they were targeting Lipoflav0noids in particular.

Well, this got me very annoyed because people are buying this stuff because they are desperate for relief and ENTs are recommending them because they want and need a treatment that will help their tinnitus patients. So, I wrote a letter to the corresponding author on the journal article.

The Idea

I would like to post some version of the letter I wrote to Dr. Jackler on Tinnitus Talk, Tweet about it and have people start a discussion about scams, if they've tried these products and had success or felt like they've been ripped off, if their ENT or Audiologist recommended it to them, your experience with identifying and putting scammers out of business.

Benefits

• Raise awareness of Tinnitus Talk
• Raise awareness of unproven and expensive products
• Raise awareness of the need for effective treatments leading to a cure
• Raise awareness to the possibility of an email campaign to funding agencies alerting them that more money for research is needed (just want to plant the idea, not expecting it to take off)
• Teach TuxedoCat how to use Twitter and Tweet stuff

So what do you guys think?
TC

I like it.
I think we should start a private council thread where the top 13 highest rated users vote to have the hierophants, @Markku, @Hazel, @Steve, etc. of Tinnitus Hub be the ambassadors of this campaign, to be directly e-mailing ATA and BTA etc. They should also send e-mails and make calls to companies that sell things like Lipo-lame-anoids to stop or face a coordinated shaming campaign that @Contrast could help plan like a war general. He has proven himself a fierce warrior. I also think our positive rating score should weigh our votes and @Contrast should have veto power for being the highest rated user and also not affiliated with Tinnitus Hub. I trust his judgement when it comes to scams and the overall world of this condition.

 

[TuxedoCat]

I think we should start a private council thread where the top 13 highest rated users vote to have the hierophants, @Markku, @Hazel, @Steve, etc. of Tinnitus Hub be the ambassadors of this campaign, to be directly e-mailing ATA and BTA etc.

Ok, but before we delegate this up, as they say, let's take a baby step and find out what the wider community is thinking.

They should also send e-mails and make calls to companies that sell things like Lipo-lame-anoids to stop or face a coordinated shaming campaign that @Contrast could help plan like a war general.

Wow! Contrast a war general!?! We need a meme of that. Seriously tho, before we get that far, we need to understand how these products are regulated, especially on the internet, and how they are allowed to make such claims. But if we were to get a discussion going on TT with members and non-members (come to think of it, we need to find out if that can be done) we could certainly get Contrast and his knowledge and instinct involved.

Teach TuxedoCat how to use Twitter and Tweet stuff

Plus, this is an important objective. TuxedoCat is 65 year old and not real adept at things like twitter. So by taking this baby step and maybe even having some fun with it, an old dog will learn some new tricks.

 

[TuxedoCat]

I like it.

BTW, Dr. Jackler is some big mucky muck at Stanford University. There are Youtube videos of him talking about hearing restoration research at Stanford. He mentions Stephan Heller- wasn't he connected to Mimbo at some point?

 

[JohnAdams]

BTW, Dr. Jackler is some big mucky muck at Stanford University. There are Youtube videos of him talking about hearing restoration research at Stanford. He mentions Stephan Heller- wasn't he connected to Mimbo at some point?

Dr. Shim visited Heller Lab, correct. He simply was made aware of the research that was being done there. I don't think Stefan Heller taught him any special techniques or anything.

 

[TuxedoCat]

Dr. Shim visited Heller Lab, correct. He simply was made aware of the research that was being done there. I don't think Stefan Heller taught him any special techniques or anything.

Right, and from the picture I saw Dr. Shim taught them about Asian food! I always wondered about Dr. Shim's use of platelet enriched plasma. Its true that it would have a lot of growth factors, but how or why would they affect hair cells? Platelets are part of the clotting process and help wound healing, which means the growth factors are targeted to fibroblasts and skin cells. When hair cells in the ear die, its from membrane damage usually caused by noise. The membrane damage starts apoptosis- programmed cell death. The cells just die, there is no need for a protective mechanism like clotting to stop bleeding, which is why you don't find platelets in the endolymph or perilymph.

 

[JohnAdams]

Right, and from the picture I saw Dr. Shim taught them about Asian food! I always wondered about Dr. Shim's use of platelet enriched plasma. Its true that it would have a lot of growth factors, but how or why would they affect hair cells? Platelets are part of the clotting process and help wound healing, which means the growth factors are targeted to fibroblasts and skin cells. When hair cells in the ear die, its from membrane damage usually caused by noise. The membrane damage starts apoptosis- programmed cell death. The cells just die, there is no need for a protective mechanism like clotting to stop bleeding.

From my understanding, platelets secrete growth factors that do far far more than just blood clotting.
For instance, and I'm not saying this proves that they heal or regenerate HC's but, PRP is implicated as having an ability to heal peripheral nerves. It has also been shown to regenerate olfactory sensory epithelium and has been shown to be very useful to repair tympanic membrane perforations (myringoplasty). So there is something going on with the growth factors present in platelet for sure. Therefore, I believe that it is not implausible that they could also have a positive healing effect on cochlear tissue perhaps including HC's, which are in fact, classified as peripheral nerves.

There is solid scientific evidence for this to be a least explored further.

 

[Lane]

@Contrast should have veto power for being the highest rated user and also not affiliated with Tinnitus Hub. I trust his judgement when it comes to scams and the overall world of this condition.

Sorry--and no offense--but I do not think this is a good idea. I don't believe anybody should be given the kind of "veto" power you seem to be promoting, and I don't think any one single person should be given the power to ascertain what is a scam and what isn't.

I ate a big bunch of grass-fed beef liver on Sunday, and I swear my tinnitus has been noticeably better since then, and my ability to tolerate it even better yet. Would reporting my experience be considered to be promoting a "scam"? And should any one person (or even group of persons) be making these kinds of determinations? I just don't think this is a prudent road to start traveling down. -- Best...

 

[TuxedoCat]

implicated as having an ability to heal peripheral nerves.

Key word being implicated, but nerves do not regenerate unless the cut axons can be aligned closely and even then its not 100%. If nerves could be regenerated there would be no paralysis. Gosh, about 23 years ago, I cut the side of one of my fingers with a brand new serrated knife. It was a deep cut and severed some arterioles- blood was spurting out. The ER doctor had to "dig around" looking for the severed vessel finally found it and stopped the bleeding. He stitched me up and told me I came into the ER with a lot more blood than I left with which was now all down the front of my jeans- very dramatic. To this day the side of that finger is numb and when we lived in New Jersey I used to get a Raynaud's response in that finger when it was cold out.

regenerate olfactory sensory epithelium and has been shown to be very useful to repair tympanic membrane perforations (myringoplasty).

That makes sense- those tissues are epithelium, different from nervous tissue. There are 4 tissue types: epithelium, connective, muscle and nervous. Both muscle and nervous tissue are excitable tissues. Apologies if you already knew that from an anatomy and physiology course.

 

[TuxedoCat]

Sorry--and no offense--but I do not think this is a good idea. I don't believe anybody should be given the kind of "veto" power you seem to be promoting, and I don't think any one single person should be given the power to ascertain what is a scam and what isn't.

I ate a big bunch of grass-fed beef liver on Sunday, and I swear my tinnitus has been noticeably better since, and my ability to tolerate it even better yet. Would reporting my experience be considered to be promoting a "scam"? And should any one person (or even group of persons) be making decisions such as that? I just don't think this is a prudent road to start traveling down. -- Best...

Hi Lane, Not promoting anything at this point. What is being proposed is a discussion to which your point of view would be welcomed. But not yet, right now we are just talking about posting a letter about products like lipoflavonoids and Ringease that claim to cure tinnitus. Then tweet it out and invite people to comment on the letter. -TC

 

[JohnAdams]

Key word being implicated, but nerves do not regenerate unless the cut axons can be aligned closely and even then its not 100%. If nerves could be regenerated there would be no paralysis. Gosh, about 23 years ago, I cut the side of one of my fingers with a brand new serrated knife. It was a deep cut and severed some arterioles- blood was spurting out. The ER doctor had to "dig around" looking for the severed vessel finally found it and stopped the bleeding. He stitched me up and told me I came into the ER with a lot more blood than I left with which was now all down the front of my jeans- very dramatic. To this day the side of that finger is numb and I when we lived in New Jersey I used to get a Raynaud's response in that finger when it was cold out.


That makes sense- those tissues are epithelium, different from nervous tissue.

Like I said, I think further investigation is definitely warranted. I don't have the answers. I did post a study where they did human trials with IGF-1 in SSHL, not chronic, and the IGF-1 was implicated in restoring hearing loss and the authors of the paper speculated that it could be due to regeneration of HC's. There is plenty of reason for them to at least continue investigating this.

 

[TuxedoCat]

Like I said, I think further investigation is definitely warranted. I don't have the answers. I did post a study where they did human trials with IGF-1 in SSHL, not chronic, and the IGF-1 was implicated in restoring hearing loss and the authors of the paper speculated that it could be due to regeneration of HC's. There is plenty of reason for them to at least continue investigating this.

I'm not familiar with the research but almost never have an objection to it continuing, altho sometimes in pharma projects hang on because of emotional attachments. Not usually the case now, research cost are just too high.

 

[Contrast]

Recently Frederic posted a journal article that was directed at ENTs

Can I see the page

Recently Frederic posted a journal article that was directed at ENTs pointing out the fact that some of these products are being recommended by ENTs and suggesting that professional journals should not carry adverts about these products. I think they were targeting Lipoflav0noids in particular.

yes I know ENT's recommend lipoflavinoids, the reason why is because they are uneducated about tinnitus.

campaign that @Contrast could help plan like a war general. He has proven himself a fierce warrior.

Wow! Contrast a war general!?!

Yes, I am a war general and I will fight for my friends and those suffering.

this could be tinnitustalk support forum battling scammers, but normies are too busy habituating and managing hyperacusis.

@threefirefour @JohnAdams

 

[TuxedoCat]

Can I see the page

Here you go-

https://www.tinnitustalk.com/thread...ke-what-should-i-take.1253/page-9#post-403141

Over‐the‐Counter Tinnitus "Cures": Marketers' Promises Do Not Ring True
Varun Vendra MD
Yona Vaisbuch MD
Albert C. Mudry MD, PhD
Robert K. Jackler MD
First published: 25 December 2018
https://doi.org/10.1002/lary.27677
Presented at the Triological Society Annual Meeting at COSM National Harbor, Maryland, U.S.A., April 20, 2018.
The authors have no funding, financial relationships, or conflicts of interest to disclose.

 

[TuxedoCat]

@Hazel

Thinking about logistics- If we were to post a letter here on Tinnitus Talk, tweet about it which might bring people here to see the letter and talk about supplements, etc., would they be able to post without joining Tinnitus Talk first?

 

[Hazel]

would they be able to post without joining Tinnitus Talk first?

No, they could only view the thread. If they want to post, they need to become a member.

 

[TuxedoCat]

No, they could only view the thread. If they want to post, they need to become a member.

Can we use Tinnitus Hub's Facebook page (not the support group) or Tinnitus Hub's website?