Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Absolutely, the point of the poll for me was to get a sense of how many thought this was an issue worthy of follow-up. If only 23 people have strong enough opinions to even vote then that doesn't tell me it's a big issue at all. I certainly wouldn't proceed with any changes based on such a low sample of voters. I'll leave the poll up until end of September. We should really try to use these polls more, I think they are a great way of gaining more information about our members. Maybe we should put up one asking for what people's actual diagnosis is or was based on what the doctor told them. Some people may have been told Shy-Drager and also heard the words MSA, others may have only heard MSA or OPCA or SND. It would be interesting to see... it seems to me that people who have joined in the last year have been telling me MSA on the survey that I send out to new members. Perhaps this indicates that that term is in fact coming into greater use. Hugs, Pam Poll on name change Hi all, Just a note about the poll on changing the name of the list. I notice that the poll has been active for a couple of days and only 23 of 690 (3.3%) people have voted. Several of those people voted basically - who cares. Don't be afraid to vote, no one knows who is even voting. ) And no one should care anyway as it is YOUR opinion. If I were looking at a poll like that, I would guess that the list was satisfied with the name as it is. Take care, Bill Werre If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Are there any statistician's on the list? How many people should vote out of 690 members in order to be 95% confident that at least 75% of members wanted the name changed? http://www.surveysystem.com/sscalc.htm It's been a long time since I took statistics. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2002 Report Share Posted August 3, 2002 Hey Pam, I'm no statisticain, but its way more than 23. lol From my calculations you would need 655 votes to be at 95% and 517 for 75%. heck 50% would be 345 that seems like lots more than we will get. What % do you consider active participants though? ....Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Pam, I can't seem to get into giving them my opinion it keeps coming back that name has been taken, I know that I am soooooo dumb but I really don't have hours to spend getting nowhere. We have been living with Shy-Drager Syndrome since 1995, so I guess that is really our preference. Ann from Soddy,TN --------- Forwarded message ---------- From: " Pam Bower " To: skyscraper > Date: Fri, 2 Aug 2002 09:30:38 -0300 Subject: RE: Poll on name change Message-ID: AMEMIMBFHEPGMAGHELMAAEANCBAA.pbower@...> Absolutely, the point of the poll for me was to get a sense of how many thought this was an issue worthy of follow-up. If only 23 people have strong enough opinions to even vote then that doesn't tell me it's a big issue at all. I certainly wouldn't proceed with any changes based on such a low sample of voters. I'll leave the poll up until end of September. We should really try to use these polls more, I think they are a great way of gaining more information about our members. Maybe we should put up one asking for what people's actual diagnosis is or was based on what the doctor told them. Some people may have been told Shy-Drager and also heard the words MSA, others may have only heard MSA or OPCA or SND. It would be interesting to see... it seems to me that people who have joined in the last year have been telling me MSA on the survey that I send out to new members. Perhaps this indicates that that term is in fact coming into greater use. Hugs, Pam Poll on name change Hi all, Just a note about the poll on changing the name of the list. I notice that the poll has been active for a couple of days and only 23 of 690 (3.3%) people have voted. Several of those people voted basically - who cares. Don't be afraid to vote, no one knows who is even voting. ) And no one should care anyway as it is YOUR opinion. If I were looking at a poll like that, I would guess that the list was satisfied with the name as it is. Take care, Bill Werre If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Several people have replied and have misunderstood my question. 50% or more members of a group will never reply to a survey which is why statistics are used to project the likelihood that all members of a large group have the same views based on a smaller sampling of members from that group. I was asking if anyone who knew statistics could tell me what a good sample size would be out of 700 group members. For example: If the sample size was 20 people and 15 out of 20 people voted yes then that would be 75% who voted yes. But is 20 people a large enough sample out of 700 people to be able to project the views of the larger group with certainty? With this sized sample could I be 95% confident that all members of the group had this same view? That is my question and I'm hoping someone who knows the answer can help me. If people are just guessing then that doesn't help us. This is a math problem with a real answer. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Pam, They get better results in national polls by choosing the people by RANDOM choice. We do not have that here, we have people with an ax to grind answering only. If you wanted to do a random poll, choose something like a number of 25 and use a random number generator to pick the people you ask the question, then look only at those results. If all did not answer, then you would have to pick more at RANDOM to ask. Sorry I do not remember my statistics well enough to figure the number - but the % is higher for a low number like 700 compared to many millions. Anne is studying statistics right now (and hates it ) maybe she would know, but she dropped off (I think). I do not think there are many on the list who would not like to have MSA added, but I also do not believe there are many who want to see SDS eliminated. Since the idea of the list was to reach as many as possible, I think having as much info as possible is best. I hope more people will use the bookmarks you and others found and put on the website. Ave a good trip, mate ) Hope it is not as hot where you are going as it is here ) Take care, Bill Werre ========================================================= > > > Date: 2002/08/06 Tue AM 09:15:00 CDT > To: shydrager > Subject: Re: Poll on name change > > Several people have replied and have misunderstood my question. 50% > or more members of a group will never reply to a survey which is why > statistics are used to project the likelihood that all members of a > large group have the same views based on a smaller sampling of > members from that group. I was asking if anyone who knew statistics > could tell me what a good sample size would be out of 700 group > members. > > For example: > If the sample size was 20 people and 15 out of 20 people voted yes > then that would be 75% who voted yes. But is 20 people a large > enough sample out of 700 people to be able to project the views of > the larger group with certainty? With this sized sample could I be > 95% confident that all members of the group had this same view? That > is my question and I'm hoping someone who knows the answer can help > me. > > If people are just guessing then that doesn't help us. This is a > math problem with a real answer. > Hugs, > Pam > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 I don't think more or less people will be reached if the group's name is changed. I also don't think more or less people will be reached if the group's name is not changed. This is why I feel this way: Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box type in " Shy-Drager " and see what you get. Then do the same with " Multiple System Atrophy " . If that is the only point of people wanting to change the name then that point is totally moot. Were there other points to wanting the name changed? Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Pam, I haven't tried to vote on this issue, but just a comment to say that I read an earlier post from someone commenting on the " chill " she got when she heard the term " Shydrager " . I have to say that when I was scouring everything I could find to associate illnesses with my brother's symptoms I stumbled on to Shydrager in one source and I thought then that the name had such terrifying sound to it (not that we don't agree that it is a terrifying illness). So, cast my vote for losing that name altogether. I realize it won't change the illness or its consequences, but I still don't like hearing or using the term Shydrager. Regards, Jerry Cash RE: Re: Poll on name change I don't think more or less people will be reached if the group's name is changed. I also don't think more or less people will be reached if the group's name is not changed. This is why I feel this way: Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box type in " Shy-Drager " and see what you get. Then do the same with " Multiple System Atrophy " . If that is the only point of people wanting to change the name then that point is totally moot. Were there other points to wanting the name changed? Hugs, Pam If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Interesting Jerry. You know, I've gotten notes from people before or seen them posting on other bulletin boards looking for information on Shy " Dragon " Syndrome... perhaps the similarity of the word Drager (named for Dr. Glenn Drager) with the word Dragon which we associate with a terrible, frightening beast is the reason that name feels uncomfortable to you. Although... you'd think a " Shy " Dragon wouldn't be too troublesome. RE: Re: Poll on name change Pam, I haven't tried to vote on this issue, but just a comment to say that I read an earlier post from someone commenting on the " chill " she got when she heard the term " Shydrager " . I have to say that when I was scouring everything I could find to associate illnesses with my brother's symptoms I stumbled on to Shydrager in one source and I thought then that the name had such terrifying sound to it (not that we don't agree that it is a terrifying illness). So, cast my vote for losing that name altogether. I realize it won't change the illness or its consequences, but I still don't like hearing or using the term Shydrager. Regards, Jerry Cash Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Pam, Here is what I got: MSA-ILSG · MSA-Illinois Support Group with 5 members ) when I typed Multiple systems atrophy Take care, Bill Werre --------------------------------------------------- > > > Date: 2002/08/06 Tue AM 10:18:05 CDT > To: shydrager > > Subject: RE: Re: Poll on name change > > I don't think more or less people will be reached if the group's name is > changed. I also don't think more or less people will be reached if the > group's name is not changed. > > This is why I feel this way: > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box > type in " Shy-Drager " and see what you get. Then do the same with " Multiple > System Atrophy " . > > If that is the only point of people wanting to change the name then that > point is totally moot. > > Were there other points to wanting the name changed? > > Hugs, > Pam > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Hmmmm... I always type Multiple System Atrophy... No " S " on system. RE: Re: Poll on name change > > I don't think more or less people will be reached if the group's name is > changed. I also don't think more or less people will be reached if the > group's name is not changed. > > This is why I feel this way: > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box > type in " Shy-Drager " and see what you get. Then do the same with " Multiple > System Atrophy " . > > If that is the only point of people wanting to change the name then that > point is totally moot. > > Were there other points to wanting the name changed? > > Hugs, > Pam > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Except for a lot of moslim students associations, a maladivian student association, a married student association I also found msa-angels, a supportgroup for those who lost a beloved one on msa or similar neurological disorder. Timo RE: Re: Poll on name change > > I don't think more or less people will be reached if the group's name is > changed. I also don't think more or less people will be reached if the > group's name is not changed. > > This is why I feel this way: > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box > type in " Shy-Drager " and see what you get. Then do the same with " Multiple > System Atrophy " . > > If that is the only point of people wanting to change the name then that > point is totally moot. > > Were there other points to wanting the name changed? > > Hugs, > Pam > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Did you just type " MSA " or " Multiple System Atrophy? " Re: Re: Poll on name change Except for a lot of moslim students associations, a maladivian student association, a married student association I also found msa-angels, a supportgroup for those who lost a beloved one on msa or similar neurological disorder. Timo RE: Re: Poll on name change > > I don't think more or less people will be reached if the group's name is > changed. I also don't think more or less people will be reached if the > group's name is not changed. > > This is why I feel this way: > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box > type in " Shy-Drager " and see what you get. Then do the same with " Multiple > System Atrophy " . > > If that is the only point of people wanting to change the name then that > point is totally moot. > > Were there other points to wanting the name changed? > > Hugs, > Pam > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 msa Timo RE: Re: Poll on name change > > I don't think more or less people will be reached if the group's name is > changed. I also don't think more or less people will be reached if the > group's name is not changed. > > This is why I feel this way: > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box > type in " Shy-Drager " and see what you get. Then do the same with " Multiple > System Atrophy " . > > If that is the only point of people wanting to change the name then that > point is totally moot. > > Were there other points to wanting the name changed? > > Hugs, > Pam > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Pam, ) It is more than one system ) Charlotte was told multiple systems atrophy at NIH - and I thought " Oh my Lord first PD then possible OPCA and now probable multiple systems atrophy - whatever the hell that is! " I have also seen it as Multi-System Atrophy so we need to get the word out on all the different configurations. Is the Harvard or MGH site still up and running? If so sending them some emails calling it everything we can think of and the list address may help. We did that for a while, but I have not posted there recently. Take care, Bill Werre > > > Date: 2002/08/06 Tue AM 11:05:57 CDT > To: shydrager > > Subject: RE: Re: Poll on name change > > Hmmmm... I always type Multiple System Atrophy... No " S " on system. > > > -----Original Message----- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Yup that site is still there at http://www.braintalk.org I still post under the Shy Drager topic every month or so when I think of it. I've noticed some people and sites calling it " multisystem atrophy " or " multi-system atrophy " but I never noticed the " s " on the end of systems before. I have a friend who calls her unknown brand of ataxia, SOFA which stands for --> " Some other F-ing ataxia " . Maybe we should just give up and use something like that instead. Hugs, Pam RE: Re: Poll on name change Pam, ) It is more than one system ) Charlotte was told multiple systems atrophy at NIH - and I thought " Oh my Lord first PD then possible OPCA and now probable multiple systems atrophy - whatever the hell that is! " I have also seen it as Multi-System Atrophy so we need to get the word out on all the different configurations. Is the Harvard or MGH site still up and running? If so sending them some emails calling it everything we can think of and the list address may help. We did that for a while, but I have not posted there recently. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Timo, If you do a standard search on MSA under Yahoo (not groups) you will find a lot more including the Missouri State Alumnia. ) Take care and watch out for rain in Mellow Yellow ) Bill Werre > > > Date: 2002/08/06 Tue PM 01:20:44 CDT > To: shydrager > > Subject: Re: Re: Poll on name change > > Except for a lot of moslim students associations, a maladivian student > association, a married student association I also found msa-angels, a > supportgroup for those who lost a beloved one on msa or similar neurological > disorder. > > Timo > > > RE: Re: Poll on name change > > > > I don't think more or less people will be reached if the group's name is > > changed. I also don't think more or less people will be reached if the > > group's name is not changed. > > > > This is why I feel this way: > > > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search > box > > type in " Shy-Drager " and see what you get. Then do the same with > " Multiple > > System Atrophy " . > > > > If that is the only point of people wanting to change the name then that > > point is totally moot. > > > > Were there other points to wanting the name changed? > > > > Hugs, > > Pam > > > > > > > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 I would think that a reason to change the name would be to get one encompassing name that we might be able to make more people aware of the problem. I guess I believe that our cause would be helped with numbers. (not that I want any other people to have these problems) Do we know any estimated numbers of people with either any one of the individual illnesses or any of the group of illnesses that appear to fall under the Multiple System Atrophy title? Marilyn > > Reply-To: shydrager > Date: Tue, 6 Aug 2002 12:18:05 -0300 > To: shydrager > > Subject: RE: Re: Poll on name change > > I don't think more or less people will be reached if the group's name is > changed. I also don't think more or less people will be reached if the > group's name is not changed. > > This is why I feel this way: > > Try this: go to http://groups.yahoo.com and in the " Join a Group " Search box > type in " Shy-Drager " and see what you get. Then do the same with " Multiple > System Atrophy " . > > If that is the only point of people wanting to change the name then that > point is totally moot. > > Were there other points to wanting the name changed? > > Hugs, > Pam > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
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