New paper from Dr. Peter Tass: Has anyone... - Cure Parkinson's

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New paper from Dr. Peter Tass

CBailey11 profile image
12 Replies

Has anyone seen this? More importantly, does anyone have any practical conclusions from it?

frontiersin.org/articles/10...

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CBailey11 profile image
CBailey11
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12 Replies
Gymsack profile image
Gymsack

Sorry

Read it all , understood nothing.

TeamPG profile image
TeamPG

I read it and I have also read most of what Dr. Tass has published over the last few years at least. Essentially this article is saying is that the stimulation patterns used in coordinated reset, e.g. the vibrotactile gloves that he has been hyping for the last few years, can be adjusted to optimize the benefits they provide. That having been sad, the current trials at OHSU in Oregon are still using the same pattern that were used in the Stanford trials. The Stanford trials were terminated without notice or cause and have still have not restarted almost 2 years later. It appears that Sergey Brin has something to do with us but no one really knows. Although the science is interesting, Dr. Tass has been a complete letdown as far as execution and follow up. He’s a scientist who likes to talk and pontificate but the real world implications are few and far between.

SanMateoPD profile image
SanMateoPD in reply toTeamPG

Yep. Lots of hype, strange lack of progress. I hope he figures it out - I'm not sure why someone would do that. How did he get his own lab at Stanford? How does one keep a lab while constantly blowing dates and making little progress?

I feel like he may have had some good ideas early on, and maybe some good early positive results, but perhaps they weren't reproducible. And it's very hard to go back in time, and now this line of investigation has been praised and hyped so much, it's probably hard to admit it may not be as great as initially hoped - and this is even without any mistakes or misbehavior.

TeamPG profile image
TeamPG in reply toSanMateoPD

I think you nailed it with your assessment! It’s shocking that Stanford would allow us to go on but obviously they are. There’s more to the story that hopefully will be revealed at some point, I hope they get their stuff together and do something helpful in the meantime.

SanMateoPD profile image
SanMateoPD in reply toTeamPG

Yeah. So despite my desire to criticize, I think it's actually better to try to lower the pressure, and create a safer environment to move on. i.e. whether or not we ever figure out what the heck was going on over there, if he feels it's safe to admit that research is stalled and he can't repro, at least he can spend a few years w/his grants and grad students trying to do *something* useful. Whereas the more pressure we give him to keep going on it, get results etc, it may just end up making it worse. That's why I've mostly backed off from this. At some point I'll try a DIY glove and see how it works, but it's no biggie.

TeamPG profile image
TeamPG in reply toSanMateoPD

You’re a bit more forgiving than I am. Millions of people are hanging their hopes on this new “discovery “. It’s unethical at best and negligent or worse to string desperate people along. A supposedly reputable organization like Stanford should do better. Much better. The multiple scandals there over the last few years are starting to pile up.

In the meantime, thousands or tens of thousands of people have built their own gloves. Spending time money and possibly doing things that are not helpful or dangerous to themselves. This device could possibly have been in the market by now had Stanford continued with their trials several years ago. Or, showed that it’s not viable and allowed everybody to move on.

I’m trying to be compassionate but I have a little tolerance for people or organizations that prey upon the desperation of the vulnerable, intentionally or not.

Wishing you and everybody on this platform health and happiness.

SanMateoPD profile image
SanMateoPD in reply toTeamPG

yeah, I have a couple of my own views here too.

I actually think people building gloves is awesome and great. People should take initiative and not be reliant on authority figures who mess up and fail in innumerable ways. You and your family will put more effort into solving issues than any bureaucrat who doesn't know you from Adam.

As for Dr. Tass, I just don't know. From looking at other cult-like scientific beliefs, like semiconductor frauds, all kinds of scientific healing claims, to sincere people tricking themselves that automatic writing works to communicate with mute children, I really don't think it's usually an intentional thing. It's hope + mistakes + bad luck + some unclear thinking + secrecy that puts people on that path. Attacking them tends to make people tighten their positions, and view the world as full of enemies. That stops them from even being willing to look at new information. So, I think the university itself perhaps could investigate, and ask questions, probe etc. But towards the Dr himself, it's not like he's done wrong. Everyone is vulnerable to sometimes letting hope get in front of reason. There have been people who showed me I was free to change my wrong beliefs in the past, and I'm really grateful for them that I didn't get locked into a defensive mindset as they patiently asked questions about my weak points, let me know that I wasn't an enemy if I failed, that I still was allowed to swap sides and join a more open, failure-tolerant side. And I wish the same to Dr. Tass. I've never understood why he or any of us tolerate the gigantic gap between the claims and the evidence here. He can come clean by revealing all his notes, evidence, videos, etc in super high quality, publicly. He can hold open symposiums with all past glove physical objects, and by sending them out to Shenzhen to copy, to be scanned etc. That way we'd know what's going on. If it only works on 5% of patients, well, that's still good.

But let's not shame him into keeping that valuable but small achievement hidden while he covers himself in excuses why the original gigantic claim hasn't come out yet.

And also, I can't really rule out that there is a valuable insight related to this research. I think the way it's going is better, regardless. As an American, it's totally ridiculous that the FDA is asserting medical control over a vibrating glove; we should have been doing this on our own, comparing notes, building and testing things quickly this entire time. It's pitiful that people with our level of wealth and freedom let ourselves get tied up in a position of servitude by the FDA and a random doctor. If it works, someone will build it; it's such a dramatic claimed improvement that any truth in there would come out a heck of a lot faster than it'd come from DC + a made man doctor anyway.

TeamPG profile image
TeamPG in reply toSanMateoPD

Well said. Appreciate your thoughts and approach.

BBTKD profile image
BBTKD in reply toTeamPG

Actually, that's not true and there's a lot you and most others are not privy to. It doesn't help to throw out your theories like facts. Here are some facts: the science is solid and in fact award winning. He did similar work using coordinated reset in tinnitus and it was very successful.

TeamPG profile image
TeamPG in reply toBBTKD

Thanks for replying two months later. Are you the PR firm for Dr. Tass? What “theories” of mine are you referring to? If you have a concern, be clear about what it is instead of posting vague comments. For your information, I’ve had extensive conversations with the CEO of the company that holds the patent for and makes the gloves, and is doing clinical trials currently. I think you’re the one that’s not privy to the information here.

Bottom line: you can win as many awards as you want but if it doesn’t translate into the real world and helping people on the ground, then it doesn’t matter beyond academic curiosity. Tass and Stanford dropped the ball on the gloves. End of story unless you have some secret information you want to share with us.

BTW- I tried one of the tinnitus treatments that was based on Dr. Tass’ work and it didn’t do anything for me and many others according to reviews

BBTKD profile image
BBTKD

Thanks for the share. I am seeing it now. It's about a computational model to help explain why something like the vibrotactile glove might work.

BBTKD profile image
BBTKD

The is no practical, immediate significance for readers here. What the paper explains is the insights into how to better use CR stimulation to treat brain disorders by taking into account how neurons are connected and by refining the way pulses are delivered to maximize the therapy's long-term effectiveness by shifting pathological, hypersynschronized oscillations into normally functioning ones.

CR is the only option to date that could offer long-lasting relief post-therapy. Understanding better how to tweak the CR should increase the therapeutic effects. That would have a practical impact on a patient's life.

These are science papers meant for scientists. It's pop neuroscience that sensationalizes every finding. It takes long hours and lots of contemplating to get to what we enjoy so easily. Hopefully, this will all work out and become available sooner rather than later.

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