That is what is so disappointing. This device is not further developed as far as I know, and why couldn´t Dr. Lim incorporate the EEG stuff into the timing on the Lenire device?
I suspect that by "buying" Lim's time and luring him in commercially, Neuromod has done a disservice to the tinnitus population. I mean, at least Minnesota was based on an EEG and other tests, all Neuromod requires is a hearing test up to 8 kHz and then some questions. How can you customize the treatment effectively based on such blunt information? It is a pity, and more than a pity, and worse than a pity, that Lim dropped that device and that it is now getting dust in some lab shelves. My gut feeling is that it could help so many people even though there is no way to prove it.
Yes, I'm sure sadly.
It's so bizarre. They literally cured someone who had tinnitus from birth! How can you possibly abandon that? Is there any other record of a person who was cured from chronic tinnitus? I understand @kelpiemsp is one person and we don't know how it went for others in the trial but curing someone with tinnitus from birth seems to be a great fucking starting point to build off of, not stop the project and leave to work for the Walmart version of your device. Susan Shore's trial results can't come fast enough.
I think I love you.
So is Lim now working with Neuromod to try to resolve their Lenire troubles/make it much more effective?
I was thinking of doing exactly the same at this point. Maybe we can all pen something together so as to feed in various points?
I think unfortunately all we can do is speculate but from what I understand the university based teams are research only and tenured, whereas of course Neuromod is a commercial venture with investors that want to see a return. Lim hopping from UMinn to Neuromod does leave one to wonder about his motives, especially as the UMinn tinnitus research now seems dead in the water but I think the biggest current issue with Lenire is the lack of personalised timing data that was clearly such an important part of the UMinn research. We've been saying for months that we believe Neuromod should find a way to personalise Lenire's timing data. The fact that Lim is advising them, has already demonstrated a device with personalised timing data effectively cured one of our members and yet Lenire continues to be a sort of one size fits all, is a real head scratcher. More questions than answers.
After I added my post yesterday, I e-mailed Dr. Lim via his UMinn address. To my great surprise, he replied within 20 minutes - he's either really efficient or he doesn't have much work on
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Hi, @kelpiemsp. Thanks for the insight you're providing. I could've sworn I read a post of yours a while ago that said you had reactive tinnitus. Is this the case? If so, did this improve along with your "normal" tinnitus?
At the same time, Lim's idea of changing parameters in midstream seems to have been the root cause of the majority of the disimprovement. I'm having a hard time reconciling the seeming superiority of the Minnesota device and it backfiring with Lenire in part due to Lim's ideas for improvement. I mean, I'd like to absolve Lim of blame here and wish he could restart the Minnesota device but I'm not sure it's justified. It's almost like he just got lucky with Minnesota.
Thanks for sharing mate.After I added my post yesterday, I e-mailed Dr. Lim via his UMinn address. To my great surprise, he replied within 20 minutes - he's either really efficient or he doesn't have much work on
His reply was pretty much exactly the same as your thoughts. I don't think I'm being unfair or unreasonable in copying his response below;
That is correct that I have joined together with Neuromod. The main reason is that there are many opportunities both sides could help each other advance the tinnitus treatment with bimodal neuromodulation, and I felt it would be the quickest as well as broader reaching opportunity to help the tinnitus community (i.e., it is challenging for an academic like me or any university professor to move a new treatment to patients on a large scale; you really need a reasonably established company infrastructure to do that in a "decent" time frame). Since I started to collaborate with them, we have been combining great ideas and solutions into the Lenire treatment. I wouldn't view the collaboration as the Minnesota approach taking a back seat but actually the opposite. Many of the things I have learned from my own research, I am pursuing in different ways to integrate into the Lenire device. As you can imagine, the process is very slow because of all of the regulatory and clinical requirements to get new products to the market. We recently performed another large scale study investigating different parameters, in which you can find the protocol paper on the Neuromod Devices website (called TENT-A2 study). We are still analyzing and closing out the huge dataset but there are encouraging results and discoveries from that TENT-A2 study that we are leveraging to guide the Lenire treatment. It takes quite a bit of time to close out and analyze the extensive data from both TENT-A1 and TENT-A2 studies, but we are getting close to publishing the results in a series of papers where the first paper will come out soon, with the other papers following afterwards.
I do want to assure you that we are trying our best to integrate the positive discoveries we are making from these large scale clinical studies as well as from other relevant research and collaborative ideas into the Lenire treatment.'
Pretty sure Lim didn't join Neuromod until after the TENT-A2 trial was complete and he was only analyzing the data and giving presentations about Lenire in the US.
Can anyone verify that? He's not just there as a prop. He had to have had some impact.
Question is whether Hubert Lim actually thought Lenire was going to be better or alternatively whether he joined Neuromod to simply make a quick buck?
It would be a tragic waste and a disappointment to humanity to abandon a successful project in the name of a quick buck. I don't see Lenire going anywhere but, I hope I'm wrong. It would really sad to see actual successful treatment like this thrown to wayside over money or regulations. It's situations like this that the creators of treatments should persist and push harder for the good of everyone they're trying to help.
He's probably getting a ton of cash and can convince himself Lenire gives him the ability to reach a broader audience than he could alone, presumably by implementing aspects of his device into a gen II Lenire product. It's likely the broader reach thing is true if he lacks business acumen, albeit it will take a lot longer for us sufferers.
I agree and actually am of the opinion that Dr. Shore's device will be better because it is firstly going to have the signals patented so they can only be used with her device and secondly she seems to be trying to produce a device that will truly assist us and actually allow people to get comprehensive benefit from it.
You do know that in the context of the UofM device the timings were actually specified exactly for the patient via EEG, right?
That may have been but it actually doesn't have any influence and relevance to the comparison between Shore's device and Lenire.
Agreed. If he did open source everything we'd all be free. It just goes to show you that cash is king and most people will not help others without it. In an ideal world it would be better for more people especially those with abilities to be like Jonas Salk. Some people won't understand that until they are in a similar position and need to reach out for help and the only answer they receive back we could help but that'll be 5 billion dollars, too bad, so sad, live with it. I understand things need funding and other things just take time but after suffering for 10+ years, if it was me I'd make damn sure everyone received the best treatment as quick as possible and at little to no cost (I'm aware that I'd need investors, supporters, etc and would need to keep them happy but I'd fight for every micrometer in favor of helping people).
Well if Lim is aware of the offsets among the population, it means he would have access to knowledge on timings not yet available to Shore. So it actually is very relevant...
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