I disagree. Over the last 120 pages of this thread and also in the Retigabine - User Experiences thread, the trialees have described the effects of this drug in considerable detail and with as much objectivity as they have been able to bring to the task. While this endeavour does not come anywhere near meeting the recognised standards of best practice for clinical research, it is an impressive effort from a group of volunteers spread all over the globe, some of whom have very limited resources and have needed to overcome many difficult obstacles in order to even obtain this drug. Dr. Nagler has dismissed all this as the work of self-deluded people who have succumbed to a mob mentality. In doing so, I think he does the trialees a disservice and I think he under-estimates the intelligence of other contributors. I do not believe that so many seemingly intelligent people would be so keen to delude themselves.
The point of all this testimony on user-experiences is to produce a body of evidence which demonstrates that Retigabine has an effect upon Tinnitus. I don't think there are many amongst us who believe Retigabine to be the answer to all our prayers but I do believe that the trialees have accumulated compelling evidence that Retigabine has an effect upon T. The reason why this is crucially important is because if it can be proven that Retigabine affects T then it provides the medical research community with a new challenge. The challenge will be to develop new drugs which affect the voltage-gated potassium channels relevant to the auditory system in such a way as to reduce tinnitus but without producing the undesirable side-effects associated with Retigabine. In particular, the concerns about retinal pigmentation change should not be under-estimated. Even if there were no other reported side-effects, that alone would make Retigabine unsuitable for long-term use. Many people are hoping that AUT00063 will be the first step towards targetting voltage-gated potassium channels in a more specific way which affects those channels which produce T but without slurred speech, blurred vision, cognitive impairment and all the other issues which make Retigabine problematic.
I do not question Dr. Nagler's good will and integrity. In some senses, this forum has always been divided into two camps with little interest in each other's ideas. Without intending to be flippant, these camps can be summarised as the "magic-pill" camp and the "change-must-come-from-within" camp. Dr. Nagler is an advocate of psychological approaches to treatment of T and these approaches should not be lightly dismissed. They have an important role to play. However, in the debate on Retigabine, I believe that Dr Nagler will be left looking like those in the scientific community who laughed at Gallileo and continued to insist that the sun revolved around the earth.
PhilB...I fully agree with your well presented summary above. Thank you! My only differences in viewpoint would be some aspects of the last paragraph.
Please just put some of my comments down to pure frustration with an ever recurring phenomenon on TT where threads "blow up", not because of healthy debate or differing viewpoints - as we do that all the time. It is the
how it's done part. Some people do it better than others despite how
well they think they are doing it. In true scientific manner, you could statistically assess that by just doing a meta analysis of TT threads in the last 6 months say, and see how many "acrimonious dogfights" occur with whom, by whom, and whether any useful function came out of it to serve the overall TT community. My opinion on that is clear.
I would prefer to stick to the 'personal facts' presented here in this thread
by trialees, no matter if they are actual physiological, or perceived reality. We are basically trying to assess a
potential pharmacological approach to tinnitus relief - or even cure down the road. Our somewhat novice, but brave trial has all kinds of well known "scientific limitations". Hell, if we had the big $$$ and support of the mainstream Tinnitus organizations, we probably could be doing a much more "acceptable" and controlled version.
But this is all we have got for now...It needs nurturing and indeed critique. Again, it is
how the latter is done that deems whether it is helpful or not. If it just causes acrimony, maybe it would be best to ......... and stick to the gazillion other threads, needs and ways to help on TT as a whole.
Best, Zimichael
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