Hi I've been offered a Cue1 at a cost of nearly £1,000. I was hoping to find an independent reviews body that had tested it but can't.
Can any existing cue1 users advise of the success, or lack of, that they've experienced with it.
Also can you advise on he ongoing cost of the adhesive patches - I'd intend removing it each day.
Thanks
clinical trial listed on clinicaltrials.gov not yet recruiting
clinicaltrials.gov/study/NC...
Thanks Boscoe. The link gives a more practical guide than the sales patter.Just wish their results were available now.
yes although I have been following the info on Cue 1 for years and I don't hold out much hope that it would ever come to the US and if one was sent by an individual I doubt it could make it through customs into the US with no FDA approval
I'm surprised it needs approval. I'd expect it's as harmless as many moving vibrating children's toys.Ì assume because it's branded category medical.
seems likely the medical aspect of it would undergo scrutiny
I've been on the list for Cue1 for about 2 years now. Gave up hope of the product coming to the US.
They say they're talking to FDA.
Devices don't need FDA approval.
Neurotech must just be wasting their time then with this extract from their website"International Availability
The CUE1+ is currently certified for sale in the UK and complies with local medical device regulations. We are working towards obtaining FDA clearance to make our innovations accessible in other countries, including the USA."
Some people will believe anything... I wonder if you ask them for the bibliography of those 25 plus studies that they say are peer-reviewed and published in the actual science. They don't seem to make them available, say prominently they have these studies and the studies or science and the studies support them, which is extremely rare for a supplement, uniquely rare, so you would think it would be a unique selling point for them. But no.
I have used it without a fraction of improvement. May be it works for some people but didn't work for me
sorry to hear it was not helpful
Thanks Farooqi. Did they give a refund?
I am very far away from England. didn't get a chance of refund
Same here 😭
my HWP has had a Cue 1 for nearly 2 years, has had it replaced a couple of times when it stopped working. He changes the adhesive pads every couple of weeks as it would be quite expensive to change it daily. It definitely has helped with maintaining his stride when walking and generally he is doing well after 9 years dx.
Charco have been a good company to use and have always been helpful.
His Cue1 isn’t the newer one. That has only recently been available. If you live in the UK they will return your money if it doesn’t work for you.
Thanks Zelĺa good to hear it's having a positive effect on your HWP and UK refunds.
I presume from the extortionate amount you have been asked for that you are not getting it through Charco, the official providers,where it costs approx.£300.My husband tried it with little success,but the team behind its invention were top notch.They personally delivered it free of charge to us in Scotland,showed us how to monitor it,and refunded our money when it didn’t have any positive effects.The patches are designed to stay on for about 2 weeks if I remember,and cost about £15 for a pack of 12,though I could well be wrong on that,but at any rate they are too expensive for a daily change.We know others who have found the device really helpful,If you haven’t done so already,please look up the Charco site.If you acquire from any other source you won’t get the back up and advice they will give.As you live in the UK you can get onto their waiting list by filling in a request on their web site.
Hi CRMACK It's from the official site (email domain @charconeurotech.com)
after a long wait. They quoted £795 + vat. The vat may be recoverable.
It's also a cue1+ whatever the +adds.
VAT was exempt for my husband, as a PD sufferer.
Wow! That’s an incredible rise since last year,I wonder what the justification is for that much?
Not much I'd use: extended colours and App. An improved motor.
charconeurotech.com/what-is...
Tempted to empty the piggy bank to try it though.
If you watch the Charco utube posts they tell you exactly why the price has risen. The Cue1 at £299 was a trial intro price aimed at getting reports from users on what worked what didn’t. In April this year the Cue1+ was released in U.K. at a much higher price to enable them to fund more research and development. A full refund is offered within t months if the Cue1 doesn’t work for you. It is a WIN WIN situation and the backup service is outstanding
Thanks so much for the update,I must confess once we sent ours back I hadn’t kept up with their site.I have a theory about why Cue 1 didn’t work for my husband,he has no sense of rhythm,cannot walk to a beat,and can’t dance,or clap to a tune,and I wonder if that is why any therapy based on a regular pulse beat has nothing to work on!
You are right this is now the Cue1+ and the original one is no longer available. The £795 is correct and you don’t pay ANY Vat if you have Parkinsons. The service from Charco is outstanding
Good endorsement.
The CUE 2 is releasing soon, price likely to be £750 or so. There's a guy called Tony at my Parkinson's group who swears his CUE1 changed his life.
That's a good sign Grey area.
Good morning, It's too much for cue1, I bought for £300 but never used it, I think meditation helps me to control my emotions and it helps me to control tremor somewhat 😀
Fair comment. Meditation is a good non invasive approach.
If you bought it and never used it that’s a shame because you will never know what it might have helped with. It’s never too late to reconnect with Charco.
i agree, but I am young and feel natural healing process is best , so lets see how long I can carry on without needing any device to control my tremor.. so far I am lucky
Error in my last post ...the new launch is the CUE1+, not the CUE2, and retails at £795, but again there's a waiting list thousands long ...
That's exactly what they're offering.
Did ABSOLUTELY NOTHING TO IMPROVE MY CONDITION....DISAPPOINTED. GUTTED
How long did I you try it for and did you get support in adjusting frequencies to be stronger or weaker.
Tried it for more than two months. Downloaded the app and adjusted the vibration...... disappointing waste of time and money
Sorry to hear. I seem to remember somewhere reading 70% success rate.
Wish that one could try it before purchasing it.
They advise below (though still a significant initial outlay):
If you find no benefit or improvement from using your CUE1+, you can return it for a full refund within 6 months. We will provide support where possible to see if we can adjust anything to make it work for you.
We recommend using the CUE device on the default settings for at least two weeks before changing any parameters, as these have been shown to work for most people with Parkinson’s. Although as mentioned above, everyone’s Parkinson’s is different, so after two weeks if you still do not see any benefit, we would kindly ask you if we can try out different stimulation settings.
Didn't work for my husband but we got full refund with no problem. Its a very simple device.
hi my friend I’m not sure how it works as I’m new to this forum myself but good luck with your journey and god bless
They cost £295 when I bought mine approx 12 months ago. Recently returned it and received a full refund. Bought to see if it had any discernible impact. Sadly, not in my case.
CUE1 getting closer to the US market CUE1: a non invasive device for PD-Recording with CEO Lucy Jung now availableNext NoSilverBullet Zoom session Monday 17th of July: Lucy Jung on "CUE1, a wearable device to reduce slowness and stiffness in Parkinson's"CUE1, a non-invasive wearable device that utilises pulsed cueing and focused vibrotactile stimulation to reduce slowness and stiffnessRecording now available of NoSilverBullet webinar on CUE1, a non-invasive wearable device to reduce slowness and stiffness in Parkinson's .
