NMS QUEST

Dear all,As you know, we are concentrating hard on attempting to answer the lithium question in ALS right now. However, I thought I'd take some time to share with you some of our progress on research surveys that you've participated in over the past 12 months. As you can see, your participation has lead to some very valuable information and we hope you'll continue to take part in future surveys as they arise. Non-motor symptoms in Parkinson's disease (NMS-QUEST):This survey was sent out in January of this year to our PD community and focussed on some of the non-motor symptoms people sometimes experience, ranging from dizziness to hallucinations to loss of sense of smell. We got data from 300+ patients and the anonymised results are currently with the creators of the original scale. They're looking to see how your results differed to those gathered through a large international study. Because we have a tendency to have more of the young-onset PD patients (onset before 50) we're able to pull that out as a subgroup of interest. So far, it's been clear that a number of non-motor symptoms seem to be more common amongst our population than has previously been reported. It could be to do with the number of young-onset patients, disease duration, or maybe some of those items are just quite embarassing and people don't want to talk about them, even with their doctor. One things' for sure though, 96% of you said you'd be interested in sharing this info with your doctor so we're looking at integrating this scale (or one like it) in to your patient profiles. Understanding Fatigue:This study, sent out in January of this year, is the largest cross-sectional study we have ever completed on PatientsLikeMe. We've had responses from some 1,650 users across ALS, MS, PD, and HIV. We'll be starting the analysis on this massive dataset shortly, and particularly interested to compare our communities in terms of the relationship between fatigue and depression, and to look at physical, emotional, and psychosocial elements of fatigue. Gambling and compulsion in PD:This survey, conducted last week, will have some preliminary data presented to neurologists this Saturday at an international conference in London, England. We were comparing the responses of PD patients to those of people with ALS. As you may have heard, there has been a lot of interest in certain PD drugs which can elevate people's tendency to gamble or do other compulsive things. However, in my clinical experience I've certainly come across ALS patients who have gambled away large sums of money too. Therefore we sought to compare the two groups in terms of the prevalence of pathological gambling, the types of gambling people engaged in, and how they felt about it. I've almost finished analysing this and will be able to let you know more soon!Many thanks for your continued participation Paul


Source: PatientsLikeMe