On looking back through my notes taken at the IPWSO Conference, I want to describe a little further the topic of Vagus Nerve Stimulation and what the study and researchers want to do to take this further. The reason for the research was to see whether there would be weight loss in PWS, as previously discussed. This didn't happen, but there were other positive effects. The slide below summarises:
"Vagus Nerve Stimulation is used in epilepsy and depression. It is surgically implanted and works for 30 seconds on, and 5 minutes off. There have been reports of weight loss as a side effect (in other patient groups).
A study was done (in Cambridge, under the guidance of Professor Tony Holland) for three years from 2009 to 2012 with three participants: Katie, Simon and Jennifer. They travelled to Cambridge on a regular basis for many different tests and measurements." One of the participants was able to negotiate the travel by train and bus by herself.
: What does the future hold? The scientists/researchers want to:
"1. Undertake a formal trial involving 12 people with PWS to test:
"Vagus Nerve Stimulation is used in epilepsy and depression. It is surgically implanted and works for 30 seconds on, and 5 minutes off. There have been reports of weight loss as a side effect (in other patient groups).
A study was done (in Cambridge, under the guidance of Professor Tony Holland) for three years from 2009 to 2012 with three participants: Katie, Simon and Jennifer. They travelled to Cambridge on a regular basis for many different tests and measurements." One of the participants was able to negotiate the travel by train and bus by herself.
Slide showing where the implant was placed, what it looks like, and a picture of the ward (on right) |
"1. Undertake a formal trial involving 12 people with PWS to test:
- Whether VNS reduces the frequency and severity of problem behaviours
- If it results in improvements, how it works;
- Whether any improvement in eating behaviours are secondary to the changes in other behaviours.
2. Outline application to be submitted next week (end of July) for government funding to undertake this research.
3. Researchers would like to hear from anyone with PWS from age 16 years and over and/or their family if they might be interested in being part of this. Contact: Tony Holland ajh1008@medschl.com.ac.uk "
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