ESIT — Landmark Partnership Between the Patient and Research Community

Discussion in 'Research News' started by Tinnitus Talk, Aug 1, 2017.

    1. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I haven't contradicted myself or asserted the above, maybe you have misunderstood.

      I do not particularly rate TRT, I'm not sure why you seem to think that I do, you can search everything I have written and you will not find me supporting it. CBT is not a component of TRT, it is different, TRT has a counselling component. To reduce sound therapy to simply TRT is incorrect. There are a broad range of sound therapies using different techniques that are not based on the theories or teaching behind TRT.

      CBT can be very useful for a subset of people, it obviously isn't going to cure an inner ear disease but it can help with the obsessive part of tinnitus, where we can't stop listening to it and perceiving it as a threat for example. As above CBT is not TRT, it is a different thing. There may be therapists who deliver a form of CBT as part of a TRT course but you will find TRT purists who say this is incorrect.

      Tinnitus can have many different causes, I do not say that one thing can help all and I doubt that it ever will. It is also wrong to say that one particular treatment does not work because it may work for a subset, we just don't have ways of knowing which treatments work for which subsets right now - or indeed how combinations of treatments can work. A common mistake people make is rubbishing something because it did not work for them

      And getting back on topic this is part of the ESIT PhD's, to try and understand the heterogeneity of tinnitus so we can better target treatments.
       
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    2. IAmCalifornia
      Wishful

      IAmCalifornia Member Benefactor

      Location:
      Pennsylvania
      Tinnitus Since:
      this year
      Cause of Tinnitus:
      i wish i knew
      @Steve Hey man just so you know I personally for one appreciate everything with this partnership you have going on, nice to know some of those brilliant minds care and hopefully they can solve this horrifying problem.
       
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    3. japongus

      japongus Member

      Tinnitus Since:
      1998
      Just to be clear, my poor opinion of sound therapy extends to it as the whole notruesondtherapist party, not just TRT, or TRT with ''a counselling component'', or TRT with CBT, or selling a sound machine with waves on it, or selling a machine that zones into the frequencies of the tinnitus, or doing the opposite and selling a machine that eliminates the frequencies of the tinnitus... etc etc etc

      No harm then in pointing out what I said, that there was indeed speakers saying it was a brain thing not an ear thing, and that the chances of it becoming a grimy circus like in the UK hyperacusis conferences where Hashir Aazh is a star are considerable, even though it seems an enormous project and the operculum article I linked to is from the same project.
       
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    4. Goofpod

      Goofpod Member

      Location:
      Northern CA
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Concussion
      @Scott Ross: I truly sympathize.

      I have a very similar experience. Multi frequency tones, oscillating slightly as if between radio stations, but higher in pitch. Also, an incessant midrange Niagara Falls sound in the background. My tinnitus is 24/7 (only exception is when sleeping). I have phases of higher volume and lesser volume, and currently my right here is considerably more "plugged" and louder than normal. No reasonable explanation.

      I recently tried a set of hearing aids for the first time in hopes that it would help. It doesn't. It amplifies sounds around me but does not mask or diminish the tinnitus.

      White noise doesn't do much for me either, it only replaces the noise which continues to be there.

      The only relief I have found is distraction. Being focused deeply on something seems to distract my mind from the incessant noise- until the tinnitus takes over my concentration and then dictates reality. Biofeedback doesn't work either; I cannot tell my brain to stop it.

      Contrary to some negative comments in this thread I am grateful for any study group on this disease. We can use all the help we can get.

      We put men on the moon, we send robots to Saturn, but we cannot stop the noise in our own heads. :(

      - Goof
       
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    5. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
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    6. Frédéric

      Frédéric Member Benefactor

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      Please reassure me: do these three networks, even if they are distinct, work together and share their knowledge with each other?
       
      • Good Question Good Question x 2
    7. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      They are distinct but I know 100% that TIN-ACT and ESIT will. And I understand that Christopher Cederroth is either talking to or involved with LISTEN. LISTEN is slightly different, more of a neuroscience feel.

      We are involved with both ESIT and TIN-ACT so we will be able to interact directly with the projects.

      This has been an amazing year for tinnitus research. These 3 projects, TINNET coming to the end stages and delivering. If only we had a year like this when I got tinnitus...
       
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    8. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
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    9. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
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    10. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Hello to all members interested in research!

      Two weeks ago, I was able to attend an ESIT meeting in Milan. You can read more about ESIT on their website. Tinnitus Hub is an official partner organisation of ESIT; we represent the patient voice and find (new) ways to involve patients in the research.

      Unfortunately, I did not get to learn a lot about the actual research being conducted, as that was not the topic of this meeting. Rather, it was a training event to hone the students' public communication and fundraising skills. If you want to know more about the research itself, there's a description of the 15 PhD projects here.

      As part of the student training programme, I delivered a presentation on involving patients in tinnitus research. You can find my slides attached.

      The poll results included in my presentation came from this thread, where I solicited your input to glean more understanding on how tinnitus patients want to be involved in research. I hope the ESIT students - the future generation of tinnitus patients - will take these findings to heart and actively think about patient involvement going forward. Some of the students did come up to me afterwards, being interested in using our channels (e.g. podcast, blog, videos) to communicate about their research. So hopefully, they will follow up on this!

      Finally, we also created this video as a quick status update on the ESIT programme.


      What we'd really like to hear from you now is: What further communications on ESIT would you like to get? Take a look at their website and let us know what more you'd like to see. Or take a look specifically at their 15 PhD students and let us know who you think would be interesting for us to interview. Or just tell us generally: What do you want to know or learn about ESIT?

      Cheers,
      Hazel
       

      Attached Files:

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    11. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      I'm personally most interested in these four as they seem the most focused on potential treatments. My biggest question would be whether their end-goal is to create an actual device/medical treatment or if it's just going to end in another study saying "more research needs to be done".
      • Project 12 (Marta Partyka) hosted by Paris-Lodron University Salzburg: "Ongoing modulatory effects of transcranial electric stimulation on induced brain activity in persons with normal hearing and tinnitus"
      • Project 13 (Stefan Schoisswohl) hosted by the University of Regensburg: "Activate and fire: Pairing auditory stimulation with repetitive transcranial magnetic stimulationfor the treatment of tinnitus"
      • Project 14 (Shikha Spencer) hosted by Medical University Lodz: "Optimizating extra-cochlear electrical stimulations in tinnitus treatment"
      • Project 15 (Vinay Parameshwarappa) hosted by Centre National de la Recherche Scientifique Marseille: "Developing new strategies of cochlear electric stimulation to suppress tinnitus"
      • How can we as people with tinnitus help ESIT?
      • Is it one of ESIT's goals to create a medical treatment or are they more focused on generally learning more about tinnitus? On their homepage it says "They will develop new treatment solutions for tinnitus" but that could also mean new CBT techniques.
      • When and where will the studies by the four people mentioned above take place and when can we expect results?
      The slides are great, especially the questions at the end!
       
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    12. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Excellent feedback @Autumnly !

      Great, we'll keep that in mind. Maybe we can interview those students when we attend the next ESIT meeting.

      I don't want to speak on behalf of the ESIT researchers, so we should definitely put these questions to them as well, but I can already make some informed guesses as to what the answers might be:

      #1 Your first question is a really interesting one. I think one of the issues here is how do we keep this new generation of researchers interested in a long-term tinnitus career? There is a risk that after their PhD they'll disappear to work on other topics. Perhaps closer relations with patients and seeing how their work can have an impact on people's lives might make a difference. Some of the students already work directly with patients, but when you're doing lab research or analysing big data this is of course not the case. I don't have any ready made solutions though, just random thoughts for now :)

      #2 I think ESIT is being relatively modest about their aims. They don't want to overpromise, and state something like "we will find the cure" because that's likely to lead to disappointment. Nobody can predict at this point how close they might get to that. In terms of CBT and such, only one of the 15 PhD projects is focussed on that. Since their whole 'spiel' is about interdisciplinarity, and getting tinnitus researchers from different fields to work more closely together, I do think CBT has a place in this. Ideally - though I cannot judge to what extent this is actually happening - we would see cross-pollenation between CBT and neuroscience for instance, or between animal and human auditory studies, etc.

      Their premise is that the whole is worth more than the sum of its parts, so you have to take all approaches to studying tinnitus into account, including CBT, and somehow tie them all together. Easier said than done of course, and again I cannot judge to what extent this is really happening. I'm thinking it would be interesting to hear more about how this interdisciplinarity actually works in practice, and get some real examples.

      #3 All the PhD students are about half-way through their 3 year PhD programs, so I guess we should expect most of the results to be published in 1.5 years or so, if all goes well? (But of course it doesn't always go as planned.)

      Hope that helps, but as I said, we'll definitely discuss directly with the ESIT folks as well.
       
      • Informative Informative x 4
    13. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Thank you for everything you do @Hazel. I will have a good read of this and post if I find anything I would like to comment on.
       
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    14. Frédéric

      Frédéric Member Benefactor

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      In my humble opinion: I am just surprised that there is no study (no project) involving drugs, gene therapies or stem cells therapies.
       
    15. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Well, these kind of studies are extremely expensive, and thus probably not covered by this particular EU grant. It would take invesment from a pharma company, methinks.

      Having said that, how about project #4? "The ESR’s project aims at establishing the molecular basis of tinnitus and providing evaluation of environmental and genetic risk factors that will help to potentially identify the first genetic rare variants associated with tinnitus. The interpretation of the molecular pathways will serve as a basis for drug development with hopes to provide a personalized treatment and a cure for tinnitus."

      Her work sounds really interesting, I personally would love to learn more about it.
       
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