Wow, that's entirely unrelated to the topic of this thread, and only tangentially related to your previous comment that I was responding to. That makes it a bit difficult to hold a conversation, but ok lemme respond:
You're right that the world of tinnitus research is small. I don't really know whether it's as interwoven you insinuate, but even if there is some kind of core group that holds most of the power or influence over research agendas, then it sure as hell does not include us!
You seem to think that we hold some kind of sway or influence that we truly don't. I mean, I wish we had the power - even a little bit - to dictate research agendas and to make research truly patient-driven. We certainly would want that - not for us, but for the patient community at large. But it's currently not the case.
Yes, we have collaborated with Berthold Langguth, but we will collaborate with any serious tinnitus researcher if they want to work with patients (many of them don't have the time or inclination), if we think the research topic is worthy, and if it seems we can somehow add value. I can give you a list of publications that we've co-authored on if you like.
I'm not going to comment on the quality of those ESIT papers, as I've not had the opportunity to study them. Our only direct involvement in one of the ESIT studies is
this paper on heterogeneity - You know, the subtyping that everyone agrees is crucial to finding a cure? We supplied the survey data that the study is based on.
We also don't get any money from ESIT, apart from reimbursement of travel expenses to attend their meetings. Our role in the ESIT consortium is officially as patient representatives, but in practice it's quite limited and unfortunately
we get no input into the research agenda; that's personally something I'd like to see done differently if we're part of any future consortiums. But it's not surprising since patient involvement in research is a relatively new phenomenon and will need time to develop.
You say you're stating facts, but they sound more like assumptions to me. And, as is your usual MO, you don't check the facts with us before making public statements about us. But I guess it's useful that I get the chance to clarify these misunderstandings publicly nonetheless.
So really, I don't know what you're getting at. This all started with you saying that Lenire is getting a suspicious amount of attention from us. I explained why this is the case, and that it doesn't have anything to do with any external parties. Then you go on to say we're suspiciously interwoven with certain third parties, but "hey, I'm not claiming any impropriety!"
It's clear, particularly given that you've made some wild accusations against us in the past, that you
are in fact making some veiled insinuations against us, so why not just state explicitly what you believe to be true about us? Then at least we have a chance at rebuttal. I don't expect you to believe us, but it's important that we clarify our position to all our other members nonetheless.
If you wish to discuss this further, let's do it outside of this thread, because the thread would get too off-topic otherwise.
Member
organizations like the ESIT.
Director
