I would love Lenire to be straightforward but guess it's not. As someone who's more neutral (in my opinion, like I do have an appointment pending so not that impartial I guess…) I'd like to give my two cents on the matter in order for this to help maybe some of you.
The positive:
- First treatment for tinnitus, as in first with data from several clinical trials backing it up.
- Neuromod have been here long time, first with MuteButton that indeed failed. But it's not like they came out of nowhere with the claim of a cure.
- The technology on which it's based (i.e. bimodal neuromodulation) has shown some promise through at least one clinical trial by Dr. Susan Shore (second one ongoing) and one by the Minnesota team albeit for this one we only have anecdotal evidence.
- They do seem committed and appear to care about the tinnitus community. They've been willing to talk with Tinnitus Hub, they were part of the discussion in the House of Commons earlier this month advocating for the need of research, they heralded the dinner between several actors of the tinnitus world to increase the cooperation between them. To me, apart from scientific data and all that, that's the reassurance I need. To have caring people in charge.
- "Negative" people seem to dismiss entirely the stories of remission we've had here were Lenire had a dramatic effect. From both the clinical trials and the final product. « When it doesn't work Lenire is a scam and when it does the people would have had the same results without » Like c'mon it's like you want it to fail.
Now for the negative:
Basically there is a counterpoint to every argument I bring.
- Efficacy for tinnitus treatments are not measured ideally to say the least. We're in dire need of biomarkers; MML and THI are up to the patient and highly influenced by your state of mind. The efficacy endpoints are really questionable right now. But it's not Neuromod's fault, it's the state we're in. So first efficient treatment doesn't mean elimination or reduction, just that overall your tinnitus is more manageable.
- I think that both the community and Neuromod are responsible for the « overhype » of Lenire. They never promised a suppression of tinnitus for everyone but at the same time you come around with the first treatment for tinnitus to a community that's been expecting something for years, you just have to be careful. And boy, have they not been that. I understand they have a product to sell but start to compare what patients call a treatment for tinnitus to what Neuromod propose and the Venn diagram isn't quite a perfect full circle.
- This treatment isn't even a year old. You have to go by anecdotal testimonies and Neuromod claims to make up your mind. The second clinical trial's data is a subject that's brought up every now and then and I have to agree GIVE THE PEOPLE THE DATA. The time it has taken to publish a paper like that is just loooooong. And you can't be blamed for asking yourself if the data aren't as good as they're saying, hence why they're stalling. Or are they gathering more data thanks to this European release? Neuromod says they're hard at work to get it published and I believe them. I also think that at the end of the day, even with the data published, I don't see everyone's mind changing.
- Dr. Susan Shore doesn't target the same nerve and seems to get better results (on a 13 people trial though).
- While positive testimonies shouldn't be dismissed, I can't act like lukewarm ones don't exist. They are the most open to interpretation. The user feels like Lenire did something but can't quite pinpoint it. You also have the one where nothing happened and then the much feared worsenings. Neuromod states that all worsenings by Lenire are temporary, and no serious adverse events were reported.
But then again, as I write this, I read about your experience
@AliceW and feels so sorry… This is a silly thought, but as a fellow frenchman I was really rooting for you (I mean I'm rooting for everyone here but French people gotta be French). I am praying so hard this is just a temporary awful worsening.
So what have we learned here? Well first don't do a write-up about Lenire because there's a strong chance you'll make yourself depressed. I am hopeful for the device though someone other who would do a write-up like this might lean on the other side (maybe do not judge
@GlennS that harsh). As always we lack clarity on what works and what may not work for tinnitus sufferers. The only thing that is different to me is that they at least seem to care and are tinnitus advocates. And that's something? Anyway, it's up to you to test what works for your tinnitus, this one just seems to have more chance of working than what has existed before, with relatively limited risks. Or so we think at the moment.
In the meantime be nice!