"Hi
The SleepCube was a private purchase, as way back then my local sleep clinic assessed patients by filming them overnight, whilst wearing an oximeter, and only issued CPAP machines without humidifiers. There was no remote monitoring and…"
Sleep Apnoea Forum Bringing Help + Support to the Patient
New Treatment For Sleep Apnoea - Please Fill In Survey To Help!
***UPDATE 19TH JUNE 2014***
The survey linked to this original post is closed and the new survey link is https://www.surveymonkey.com/s/Apnoea Please see new post about this treatment http://hope2sleepguide.co.uk/forum/topics/survey-to-help-with-new-n...
Dr Joerg Steier has contacted me regarding a new project they are working on at St Thomas' Hospital in London for alternative treatment to CPAP. Their London Respiratory Muscle Group, around Professors John Moxham and Michael Polkey, have studied non-invasive electrical stimulation of the upper airway in sleep apnoea with successful results. (There are currently some other similar treatments available in the US which require an implant, but this new proposed therapy does not need this (you can see diagrams in the CHEST article). However, in order to further commit to this project they have applied for funding from the Medical Research Council (MRC) to run a randomised controlled trial. This would allow them to offer this treatment to NHS patients and establish a novel alternative therapy for sleep apnoea. So far, the MRC like the idea and the funding proposal has gone through to the 'final decision round'. Before a decision is given though, the MRP would like to know how this project is regarded by existing sleep apnoea patients. To view more details of this treatment, there is a pdf document you can view of an article which was posted in a recent publication of CHEST.
So how can we help them? I have designed a short survey (link below) that we can all fill in and I can then send Dr Steier the results to help them with their project. Whilst the majority of us are satisfied with our CPAP therapy, albeit dealing with a few frustrations along the way, there are people who cannot tolerate CPAP therapy for different reasons and these people would really benefit from this new therapy. Additionally, were it to prove highly successful, there's no knowing whether other CPAP users may wish to change to this therapy instead.
SURVEY LINK
Views: 1468
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Thanks to everyone who's already filled in the short survey. Keep them coming in :)
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You can still fill in the survey Mary to say you're interested, as if it were successful I'm sure it would get to the USA, especially seeing as it was featured in CHEST.
Mary Zimlich said:This is fascinating. I would not be a candidate even if I were in the UK, but this is great news! CPAP may not be "forever"- in our lifetimes a new treatment may become available. Thanks, Kath.
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Permalink Reply by mick mclachlan on
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any idea when this may be available in the uk,i am up for this.would pay privately
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It's in the early stages Mick, but I'll certainly keep everyone informed of progress.
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Permalink Reply by martin mucznik on
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i have completed the survey,but dont know how suitable i would be as i have severe fibromyalgia,which is like ME but more painfull so when i sleep my muscles completly shut down,but i live in hope.thanks for the oppertunity.muz
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I hear of so many people with fibromyalgia as well as sleep apnoea. In fact there are members on here with it too. Most people find an improvement to their fibromyalgia when they're on good CPAP therapy, so hope this is the same for you too Martin.
As for the proposed new treatments - it's too early to say. The first step is getting the funding for it, and if the survey is anything to go by, it will help as up to now 94.4% are interested in it.
martin mucznik said:i have completed the survey,but dont know how suitable i would be as i have severe fibromyalgia,which is like ME but more painfull so when i sleep my muscles completly shut down,but i live in hope.thanks for the oppertunity.muz
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That's interesting Rock - thanks for letting us know.
RockRpsgt said:Dr Park is working on something along these lines as well.
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Permalink Reply by paula jones on
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Ohh..just filled it in..id give anything a go...LOL :)
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Permalink Reply by snoreyhead on
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The survey link doesn't appear to be working.
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Have just tried both links and it's working from my computer. Can you have another check please?
snoreyhead said:The survey link doesn't appear to be working.
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Tried it on my computer with Explorer, Firefox, Safari, Chrome and with my Firewall turned off and can't access it. I can access it on my mobile phone. This is the error I get:-
This error (HTTP 403 Forbidden) means that Internet Explorer was able to connect to the website, but it does not have permission to view the webpage.
By far the most common reason for this error is that directory browsing is forbidden for the Web site. Most Web sites want you to navigate using the URLs in the Web pages for that site. They do not often allow you to browse the file directory structure of the site.
Kath Hope said:Have just tried both links and it's working from my computer. Can you have another check please?
snoreyhead said:The survey link doesn't appear to be working.
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