So Is That It for the Videos?
I think I am probably going to sound a lot like TE now, but you know what, I don't care :lol: Now don't get mad, seriously, but this is something Dr. Houser felt we should do as well. There are just too many of us on here STILL complaining and looking for answers to this ENS thing. Well, if you want to do a video, we are still accepting them. There is a poor showing on YouTube. Sure, we got about 7 or so videos on there, but I think we can do better and I think we should do better if we want to bring this to public attention. Won't you please do a small videotape of yourself. So about 7 people have ENS, so what. Is that what you want them to say? I'm telling you, once you do it, you will feel so good about yourself. Any takers? Still waiting for the few who promised to do one. Valerie

So Is That It for Videos?
Carol thank you so much for your support. I could plainly see that I was being ignored, after all, I did post this some time ago. :evil: Thank you to all the others who took the time to make their videos and now I will put this subject to bed. It was a very wasted endeavor. Well, not really, it made me feel damn good! Valerie

Still planning to do it. I am in the middle of exams, and the webcam I bought did not work on my old ancient computer. I need to get through this busy period and will do a video.

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Would love to see it Erikav and I know you probably mean well, it's just that quite a few have promised and given excuses and nothing has materialized. If you have it in your heart to do it, then we will see it. I look forward to it. Thanks. Valerie :lol:

Matt, JR, and Kris all made videos, but have not posted them to youtube. Why?? I check periodically on youtube with the hope that more might have created videos, but see no more added of late. I'd hope that Dr. Houser's post "ENT Meeting" in the Questions for Dr. Houser forum section would further motivate some members of this forum to post videos on youtube. Very sad to say, but a big part of the responsibility for ENS awareness is on the patients. Otherwise, we will continue to be ignored. Do we ENS sufferers want to continue to be ignored by ENTs?

I think everyone should understand that the onus in on patients because of the political nature of this problem. Not every medical problem is the responsibility of patients; this situation is unique and backward in that we have no one to turn to but doctors or our state medical boards -- prob. also doctors -- and we all know why doctors don't want to acknowledge this problem. It's not like Lasik where we can turn to the FDA. I just don't want people to think that it is their fault for getting this problem because others like them have not had the time or ability or desire or whatever to fight for a solution. It should not be on us, but unfortunately it is. Prominent doctors like Dr Houser or Dr Kern cannot make the headway they want about ENS either -- nothing works from inside the medical community. That is the most devastating part. It's taken me time to wrap my head around this and truly understand, and I did not really get it until I spoke to Dr Houser, and even he was powerless inside his own profession. Now that is screwed up. But it happens and I am in it for the long haul. I can't apologize for the pace I have to take to get things done in my life. I hope you all can respect that, too. I am happy for all of you if you are more productive on this issue or other issues in life than I am; but I am doing my best. It may not be your best, but I know I am doing what I can. I have contacted journalist friends about this issue instead of fix my computer/camera problem because that is what I could do and had time for. I hope to accomplish something in both areas, but I know what I can do and don't want to feel worse about it when I come on the boards. I am actually ignoring the guilt trips because they don't work for me....just know I am committed and please be tolerant. I won't give up, even if I get alienated by all of you for being slower. I really don't care; I know in my heart by now what I believe and what i am capable of and what my priorities have to be. I just hope you can respect that, and know that maybe other people feel this way, too. It takes a long time for someone who has already been burdened to also take on the burden of trying to fix the problem more than just personally. Maybe you all grew up on communes, but I did not and my life is not structured that way. I have to take care of myself first, no matter the peer pressure.

I would like to see more positive encouragement about the youtube videos. I know how important this is, but I would like to speak on behalf of those who feel that negativity and pressure for a volunteer effort where the only thing holding us together is misery and camaraderie -- maybe adding negative tone to that is a bad idea? It is just how I feel, maybe I more sensitive, but then again there seems to be a very high standard for participation with such a degree of seriousness that it gets scary. I simply cannot look at a longterm goal that way without getting even more down, and maybe others feel the same. Maybe I can come up with something positive to get people to participatem but right now I am very busy and I am checking this at 2 am because I can't sleep AGAIN because of my NOSE. I am exhausted, as are most of us. So a little less gloom and doom for the already gloomy and doomful...if I have to provide the positivity, I will when I have the time and energy.

Erika, Your points are well-taken and thanks for your efforts behind the scenes. Unfortunately, we do have reason to feel discouraged right now, the biggest one being that Dr. Houser's course on ENS was not accepted. And I should point out that the primary reason people made videos for youtube was the pressure that was placed on them. I think it's fair to ask and wonder why some might make a video, but not place it on youtube. I'll look forward to seeing your video when you get the opportunity. Again, thanks so much for your efforts.

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I agree with CM, we are not unfairly trying to put undue pressure on you, but the most important point is what CM said, Dr. Houser's course was not accepted. why, I'm not sure, but I believe that a little more effort on forum members to show WE EXIST would have helped. I don't want to come down on anyone, but I was pressured, I finally did it and it wasn't so bad, in fact, I would do it over because I left out so much stuff, but from one member, enough is enough. You take the time Erikav and "do you", what you feel is more important to you right now. If it is not ENS, fine. We'll accept it whenever you can do it -- and that goes for the ones who have finished theirs, but have yet to post. I'm sure you have your reasons. You Tube will be there. :? Valerie

I think I would like to pitch in and make a few comments here if I may. I did make a video and did feel that this is a good idea, but to be honest I am not comfortable with mine being put on youtube. I never intended to be put on a "pedestal" in that way. There are various ways of doing things and I would be happy to look at other types of media that could perform the same thing. In my opinion, it's debatable whether making any more videos than are already there will improve the situation anymore. The problem is not that doctors don't know about this (maybe a few), but that they simply do not want to get involved. There are various ways that we could use to improve our cause. I think Erica has come up with several good ideas about contacting Oprah, the Lasik foundation, FDA, congress, etc, etc. Also, I'd like to mention that I think that some pressure has been exerted, as mentioned, to produce the videos that are there, but the decision to do this should be the individual's and the individuals's alone (their decision to do whatever, should be respected). It seems like a few members have left the ENS board because they feel that too much pressure has been put on them to do this (where is Jeff, David, Anthony?). In that case, probably more damage than good has been created from this initiative.

JR, Your post discussion about Erika, some members leaving, etc. is circumventing the real issue of youtube, so I respectfully would suggest it is best to save this discussion for another forum section. However, I will respond to your thoughts on these issues for now. For the record, I am sure everyone here supports Erika's efforts and I probably speak for many in saying that I am very appreciative of them. I could hazard a guess why some members have not contributed to ENS awareness via youtube videos and a few of these members have recently not posted on the forum (while others have come or returned), but these members are always welcomed back. We had about 8 people (out of 314) put videos up on youtube, a 2% contribution rate, however you want to interpret that statistic. Everyone has been emailed more than once on it. And also for the record, like a few others, I am currently exploring alternative, behind-the-scene venues for raising ENS awareness to ENT doctors rather than just the youtube campaign, but any discussion I have of it will go into another forum section. I respect your decision not to post your video on youtube and that's totally your decision, but disagree with you on your feelings that youtube puts you on a "pedestal." If youtube is a high traffic website, isn't that what we want? Don't ENS sufferers need to stand up and be counted? Or should they do their videos at low traffic websites behind "screen doors"? Are you saying anyone that does a video on youtube is automatically on a pedestal? Don't doctors need to hear the message from decent ENS sufferers? Especially since, as you yourself have acknowledged, many doctors still think ENS is just a psychological problem. Doctors may know it exists, but how many actually understand it on a physiological level? If you get on youtube, you will show the world you are a real genuine person with a physical problem and that we merit more attention from the medical field. And if it's done in the right way, that will cause them to feel like they have a moral obligation to help us, even the ones who are currently disinterested in helping us. These are my honest thoughts, and I"m going to leave it at that.

JR, first of all that's a cheap shot to say that those members have left the board because of any kind of pressure. That's nonsense and you know it. Secondly, nobody has left anything, as people come and go as they wish so there is nothing to leave or come too. Third of all, at least one of them, you know who, has stopped posting long before this video campaign ever began, for personal reasons, and I am in constant contact with him, so I know that what you say is wrong. Fourth, if anyone wants to "leave" as in never post here again - it's because they feel they have nothing to contribute. And in that case, nobody looses. Fifth, even if you are right and some cant take the pressure to act and choose to leave, have you ever asked yourself how many have left already in the past three years because of no action what so ever. I think many more got despared from no organised action than for puting some pressure to act. Last, but not least, the fact that some people took a break from posting, for personal reasons, or even if it is because of feeling ashamed by not making their contribution, doesn't mean they don't visit this board, and regularly, trust me. People take breaks, and act out of their own self interest, just like you disappeared for almost a year after you thought you were cured and wouldn't even hear about ENS, but returned once you realized you still had it. Pressure to make this small contribution is a double edged sword. On the one hand it can alienate, but on the other hand what is the alternative? You have all had 3 years of grace when you could come to this board and the ENS website that others had laboured selflessly for all ENS sufferers to find comfort, knowledge and friends in, where you had an ENT and ENS specialist answer any question under the sky, and all this for free and without any of you being required to make even the smallest donation - not money wise and not time wise. I myself have asked many of you over the years, yourself included, for a little help here and there in different projects I tried to move, but almost none of you ever pitched in for anything, even when asked directly in private, and without any pressure what so ever. I left it at that and never held a grudge. Now, 3 years later, facing a possibility to have an ENS course submitted I wanted to supply Dr Houser with a strong weapon: I hoped that a CD of video testimonials of real people would talk to those indifferent ENTs more than words. It was very tough getting each and everyone of them, as I had to appeal to people on and off the board, and eventually only 5, besides me and Chris, pitched in. I said it then and I say it now, that was not enough to work with, as you don't go and tell indifferent ENTs in a conference that ENS is such a big and wide spread problem, as we all know it is, and only show them a collection of 7 patients. Furthermore, as many people mentioned that they would like to make a video but can't keep the dead line, like Erika and Jeff, it became apparent that we need to search for a different platform. So then I thought - what's better than You-Tube: A) The videos there can be linked into any site on the web. B) It's a great search engine, and every time anyone Will research related subjects anywhere on the web they will see those videos. C) Dr Houser and others will have easy and free access to them. Will not have to remind themselves to take a disk or not, and best of all will not need to retrieve any copy rights from the people who make the video. D) I was concerned from the minute go, that having sent those videos to doctors, some of you might change your mind later and besides - once I send it out, I never know where it can end up, including on you tube anyway. So by asking you all to load your videos personally on to You Tube you retain the sole control over it. If you don't like it later on - you can remove it, and no body can copy it from from there or use it without yuor permission. So - where on earth is the problem? - Besides - if you are worried from being recognised - I have uploaded two different videos of myself - one in which my face is shown and a second in which it is hidden. So, you can see how it is very easy to make it so nobody can recognise you if you just make an effort to hide your identity (cap pulled down, a wig and sunglasses, face kept in the dark, etc'...). Plus, if you upload something and change your mind later you can always remove it, so where is your risk??? - there is zero risk!!!!! E) You say that you don't see how videos on You-Tube will change the minds of doctors. But, who said we were counting on doctors to begin with, to change their minds?.... - The rational behind the You Tube campaign is to reach a critical mass of videos - so that the media will begin to take notice of us, so that when the media do finally take an iterest in us - we will be able to direct them to the You Tube videos. Pictures speak louder than words and videos speak louder than both. You yourself say that the media is our best shot - so there you are. You-Tube is the perfect tool for us.

Videos
And on CM's and TE's notes, I rest my case. They both explained the situation so well, there is absolutely nothing to add to it. I am so glad I am on a pedestal -- I want the world to know what I have suffered through due to the inefficiency of a trusted doctor. If I write one more letter to Oprah, I think I will choke. :evil: Pictures speak mountains! Valerie Those of you who disagree, please don't leave, we need you, even more now than ever. Thanks.

Sorry, Have been having really rough time lately - I know that people need reminders to get things done, as do I. I just want you to know I have not forgotten. I don't think other members have left - everyone just gets caught up in their own problems, some related to ENS, and thinking about ENS more is really hard. I know it is not a good excuse but that might be why people are slow with this. So don't get down...this is just going to take time to change. I hope to have a LOT more time after school ends very soon - mid may, and want to devote time to this cause.