In the past year, three of our volunteers – @Hazel, @TuxedoCat, and @gillme – have attended the Tinnitus Research Initiative (TRI) and Association for Research in Otolaryngology (ARO) conferences. You may wonder: What’s it like being the only patient at a research conference? Are researchers open to discussing their research with us? Are researchers open to feedback? What is the general quality of the research presented? Are researchers working on things that will really help tinnitus sufferers? We will answer these questions, and any others you can come up with, during a Zoom call this coming Sunday, 24 March at noon EST! To keep it small and cozy and offer a nice perk to our supporters, this call is for our Patreon supporters only. The good news is that you can → become a supporter ← for as little as 2 dollars per month! If you have any questions that you’d like us to address, you can leave them here below. We hope to see you there!
What kind of roadblocks have you run into when pushing for more tinnitus research and awareness among the medical crowd? Do you feel like your presence there and advocacy as a patient helps impact the direction of tinnitus treatment options? Are there any particular areas of tinnitus research that you felt was a bit obscured or deserved more attention at these research conferences? How do you prepare to soak in all that info during and after the conference? Any strategies for handling the overload and making sure you absorb the most important stuff? What kind of advice would you give to other patients who might be interested in the attending tinnitus research conferences in the future? If the answer is yes, how do you personally navigate the balance between providing feedback to researchers and respecting their expertise? (I think patients have every right to question and scrutinize everything they see). A bonus, but very important question: Do you bring any snacks to power through those conference sessions? If so, what’s your go-to conference snack?
Just some thoughts. One of the joys of Tinnitus Talk is that yous are pretty much breathing down the backs of the researchers and getting to know what they are working on and why. And we poor plodders get to find out about it. I can recall the bad old days of pottering around libraries and archives reading back-issues of "Otolaryngology", "Otology", and "Audiology" from various countries in Europe, GB, and the US. It was pretty dispersed and mixed up with all sorts of other topics. Might be an idea for the each member of the Tinnitus Talk team to specialize in a specific researcher and what he/she is working on. Even develop a good working relationship with him/her. I'm kind of flummoxed by some of the contributors on Tinnitus Talk -- who must be really suffering, by the way -- and their strident demands on some of the researchers. The end result of this is the researchers may end up wanting to keep their distance. But if we have someone with a friendly working relationship with them, that would help.
Wow, some really pertinent questions there from @ZFire, thanks! And good to hear from you @Joeseph Stope, I fondly remember our (all too brief) meeting in Dublin! Thank you for the kind words too Oh and I hope to 'see' you both this Sunday, if you can make it!
Hey, sorry to hear that! If you're really keen to join, and you cannot afford 2 dollars (since you can cancel the month after if you can't manage it monthly), then please contact us here and we'll get you an invite
Kudos to the staff for their hard work in organizing these events and for keeping us in the loop with all the information. This includes sharing posters from the ARO research conference.
Tinnitus Talk is such a great resource; thank you for taking the time to do it for all of us out here suffering. I’ve subbed as a Patreon and I’m looking forward to joining the Zoom on Sunday. Thanks again!
@Hazel, I'm following on from another thread on Tinnitus Talk, but from time to time, case studies and tests seem to be carried out by researchers using scans and EEGs on different patients with and without tinnitus looking for biomarkers to distinguish how tinnitus is impacting the brain. What we never seem to see are scans conducted on the same patient experiencing reactive and variable tinnitus (like mine, which can be incredibly high pitch one day and very low pitch the next, as well as highly variable to ambient stimulus). Using one individual as a control subject may prove much more meaningful in terms of a before and after. I'm happy to be put forward as a case subject and travel if you do come across researchers in this field who are actively looking for patients. I have also been trying to reach out to one researcher (whose name eludes me now, but I am sure has been interviewed on Tinnitus Talk, perhaps) based in Oxford, UK, who is delving into the world of tinnitus research, where sleep causes changes in tinnitus—mine does daily—but I have never received a response. I just feel, at times, some of the more severe sufferers on here could be good test subjects if they are up to the tests and can get to the clinician's location; on the premise, the more severe the tinnitus, the more chance of tests and scans perhaps detecting something.
