Hi Autumnly,
While I sympathise with your frustration, I do feel the need to jump in here and set a few things straight.
My main issue with your comments is that you're making a lot of assumptions about what will or won't be represented at the conference, whereas the truth is you couldn't possibly tell that from just scanning through the programme. For instance, assuming that the message of the habituation talk will be "everyone can habituate if they just want it enough" is really a bridge too far, in my opinion. It's possible of course, but I seriously doubt that this will be the main message; I would expect it to be much more nuanced and multi-faceted (if not, the speaker will have done a poor job indeed).
Similarly, the talk that
@Steve and I will be delivering will portray the significant proportion of people with tinnitus who, like yourself, are unable to attend social gatherings because of tinnitus. We will outline, based on survey data, the profound social effects of tinnitus and the (sometimes severe) limitations that people experience. We might also address the topic of work and tinnitus, since we have survey data on % people whose work has been significantly affected or who are even unable to work at all because of tinnitus. None of this is of course reflected in the summary of the talk, but it's all in the details.
Now what would the purpose of that be? Remember that the target audience of the Expo is
people with tinnitus. I could understand your frustration if the event was targeting healthcare professionals, academics or policymakers, who indeed could use more awareness on the profound psychological effects of tinnitus. But all the people at the Expo already have tinnitus. They are not there to hear about how horrible it is. They either already know this or they don't (because they have a mild case). The reason people visit the Expo, and this is explicitly how the event is being marketed, is to get advice and information on coping, treatments, etc.
The one thing I do agree with you on is that it's a real pity the severe cases will not be able to attend. The best we can do on that front is to make the information available online as much as possible. But those personal connections do add a lot of value imo, and therefore I really wish you
would be able to attend in person. If there's anything we can do to help make this possible, please let me know.
Finally let me just urge everyone who subscribes to the opinion that this event is not sending the right message to get personally involved in making a difference. Tinnitus Talk can have a significant influence in setting the agenda for tinnitus related events, but this is not accomplished by merely expressing your opinion on this forum. We need more volunteers to make a meaningful difference!
(Autumnly, please understand I'm not targeting you directly with the last message, but this is a real and recurring problem that we keep running into when trying to accomplish 'real world' projects).
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