Raising Awareness to Pseudoscience, Quackery and Scams

Discussion in 'Awareness & Fundraising' started by TuxedoCat, Jan 22, 2019.

    1. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @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
       
      Last edited: Jan 22, 2019
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    2. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @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,
       
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    3. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      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.
       
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    4. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      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.

      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.

      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.
       
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    5. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      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?
       
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    6. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      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.
       
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    7. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      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.
       
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    8. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      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.
       
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    9. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      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...
       
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    10. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      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.

      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.
       
      Last edited: Jan 22, 2019
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    11. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      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
       
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    12. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      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.
       
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    13. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      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.
       
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    14. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      Can I see the page

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


      upload_2019-1-22_20-38-54.png
      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
       

      Attached Files:

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    15. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Here you go-

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

       
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    16. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @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?
       
    17. Hazel
      Dreaming

      Hazel Director Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      No, they could only view the thread. If they want to post, they need to become a member.
       
    18. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Can we use Tinnitus Hub's Facebook page (not the support group) or Tinnitus Hub's website?
       

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