The question is what should be done about it? At first I was thinking that the videos should be removed, the site censured. But maybe instead this is an opportunity for a new kind of advocacy. An opportunity to educate by responding with good information. YouTube has the option to post a video response and to post comments.
What do you think? Anyone have more experience with YouTube? I don’t want to publicize the message without there being a counterpoint. There is also the opportunity to post comments.
The question is what should be done about it? At first I was thinking that the videos should be removed, the site censured. But maybe instead this is an opportunity for a new kind of advocacy. An opportunity to educate by responding with good information. YouTube has the option to post a video response and to post comments.
What do you think? Anyone have more experience with YouTube? I don’t want to publicize the message without there being a counterpoint. There is also the opportunity to post comments.
Ah yes Jester (just realized he is signed up as richard st amour on here) showed me this on KidneySpace. Thanks for posting this Bill
I must say yes do a video! I hate to say it but after watching all 3 parts myself and having my fiance also view them and hearing Jester’s input as well as looking into this guy’s name and site I fear that this man is the one pulling the strings and using that dialysis assistant lady’s lack of knowledge on why dialysis is needed, for another purpose, which is to sell his herbal cures (notice his name is tmiherbs. His name stands for ToMorrow, Inc Herbs which creates Common Sense Herbal Products®). So a video reply is VERY much needed! I support you Bill if you go ahead and make one! I am on YouTube as well even though I have not made any videos lately since I am no longer on dialysis (reason I also hadn’t been on this forum lately).But after seeing that video I am sorry but it really upset me and I worry about the general public becoming misinformed. We already have enough trouble with people being misinformed in the first place!
For sure Bill if your up to making a video to counter act this one go for it , and use this University Of Common Sense as a example of poor reporting… would be beneficial to hear from health care sector proffessionals on this matter…seeing that the finger is being pointed right in their direction…they should be up in arms about this… I for one will be sending this video to all whom I know within the sector…
I’m sorry for Kecia…she was obviously and probably easily lead into this video by Tim Morron…you can tell right off that she was forgetting her line… no doubt there was a rehersal before hand…and Morron had to pry the answeres from her…at times she was starting to answer before the question was even finished…That being said and it makes no difference the video is a slap in the face…and is a joke
Oh, gosh. I don’t even know where to start. Part of me says, if we don’t pay attention to this, it might be better than pointing lots of folks to it when there is so much wrong with it.
IMHO, the fundamental issue is the very, very different perspective these two African American people have on the medical system in general and dialysis in particular. The Tuskegee Syphilis Study (http://www.cdc.gov/tuskegee/timeline.htm) which went on from 1932 to 1972, and involved not treating African American men for syphilis (or even telling them they had it) so researchers could study the natural history of the disease is still front and center for many folks. And, who can blame them? Institutional Review Boards (IRBs) now monitor human subjects in research. That study could never be done today, but the damage and mistrust of medicine and doctors remain. So, what came through loud and clear in these videos was the notion that people are “duped” into dialysis. They’re really fine, but they’re told not to drink, then they don’t urinate, and, BOOM, they’re on dialysis so the doctors can make money off of them. <Sigh>
Both Tim Morrow and Kecia (dialysis “assistant”) were so poorly informed that they were basically pooling their ignorance. Morrow is an herbalist and “iridologist.” (http://en.wikipedia.org/wiki/Iridology). Um, yeah. Kecia, as a dialysis “assistant” was not even trained as a dialysis technician–and techs don’t always get as much training as we’d like to see them have. Not exactly an expert source.
Even with all of that, a few shards of truth did stand out. I actually don’t doubt that a low-functioning clinic might choose to start a treatment on a pulseless, non-breathing patient in order to get the treatment. Cynical? Yup. Kecia also noted that, “Nobody got better. Everybody got worse.” Over time, watching poorly delivered in-center HD 3x/week, that’s probably what she really did see. (But she also seemed to have an expectation that dialysis would be a cure. It isn’t.)
The best defense is a good offense, I think. Get videos out there of yourselves being active, feeling good, and doing things you enjoy. Show the other side of the story.
I worry about that as well considering the more visits there it will rank up there as popular on the YouTube list, but then I realized the only way people can comment is if they go directly to the YouTube page. But this is why I think a reply video would be best. Who can make a video here?
[quote=kamalshah20;17120]I have created a video in response to this video and submitted it. But the owner of the original video needs to approve this! Fat chance.
Here’s the link:
Kamal[/quote]Oh no seriously?? I didn’t know how that works … man …
Well you know what? We should all comment on yours and share it with all forums that we have been talking about this on so that people share your video. Thanks for making it! It helps a lot! I contacted my Kidney Foundation but they would not do anything about it since they said there was nothing they could do.
Also I think this other video is very good as well:
So with thinking that Dori might have a point, here are links to just go to the comments and bypass viewing the videos so we don’t add to that guys ratings…[B]
You should also try it out. The more the video responses the better. Of course, Mr. Morrow may not allow them to come up as responses on his video but by putting “The dangers of dialysis” in our description, we can make sure our videos come up in searches related to this.
Thanks you for alerting us to the youtube videos. Like so many others videos and patient information on the internet, there is a lot of material that is erroneous and even dangerous. We advocate fotr people to know their sources and recommend specific sites for kidney health information. We also advocate for people to question where their information comes from and to ALWAYS be wary of anything they find online. The problem with having erroneous information removed from the web is that it’s almost impossible and a never-ending task in light of the amount of articles, videos and blogs out there. Your suggestion with putting a comment on the youtube video page is a good one and as you saw, many people did. Comments can go on for pages and before you know it your thought will end up on page 5 – several clicks away – and the viewer of the video will probably be more concerned with the video and perhaps the comment below on the main page. Policing the internet is tough and our best strategy is to educate people to be well informed and talk to their doctors. I have forwarded your email to our National office and they will looks to see if a National response is in order. I thank you for sending the links so that we can use them as examples in our upcoming newsletter when we talk once again about being an informed participant in health care.
The thing is there needs to be emails from Americans to the NKF because what can Canada do? Of course Alberta seems like the best Province as they do the most advocacy (just what I have noticed personally) but I did email my local Kidney Foundation (Ontario - SouthWestern branch) anyway just to see if they could do anythign like release a statement at least…
Hi Angie,
I can see why this video infuriates you. Unfortunately, as you probably realize, we, or anyone for that matter do not have any control over what gets posted on the Internet. All we can do is hope that anyone who happens to come across this video realizes that it is not coming from a credible source and that it is nonsense. Furthermore, this video was most likely taped in the U.S. The Kidney Foundation of Canada has no power or jurisdiction to advocate on behalf of things happening in the United States, let alone control over stuff on the Internet.
I’m sorry if that is not the answer that you were looking for, but unfortunately that is just the reality. I sincerely doubt that too many people would come across this video anyway, unless they are searching for something specifically about dialysis, so maybe you can take comfort in that fact.
Regards,
Erika
Publicity & Events Coordinator
The Kidney Foundation of Canada,
Windsor & District Chapter www.kidney.on.ca
We’re now on Facebook! Check us out for up-to-date event listing, photos and more! Search ‘Windsor Kidney Foundation’ and become our fan!
Has anyone else emailed their kidney foundation and got a reply?
Also on making a video … I can’t answer all questions and I want to address so much so what I am asking everyone is to give me answers that I can include into a video!
I really hate putting myself on camera so if I am going to make a video it better be worth it! I need information.
One thing I want to address is something that someone mentioned on kidneyfun.net
I heard somewhere (I can’t find the link but it was in reference to this video … maybe it was one of the comments) that the renalin is rinsed out of the tubing and there is no way it gets to the patient so there is no worry. Still … yes this should be mentioned in a rebuttal video. Sadly, I can’t do it because frankly I am in Canada and my unit never used the reuse system.
So what I am asking is from the people who can’t do videos … I need information! A person doing a video is not enough … we need the correct information from everyone to put into a video!!
This Unversity of Common Sense…hahaha… has more video’s on dialysis, kidneys, and dialysis machines… they are just as, and if not worse that the 3 part video sessions…the fool is scary…thinking that herbs are the cure for kidney disease is so far in left field… If that were the case I’d have one mother of a garden !!! …obviously he need schooling …he’s never heard of Alport’s Syndrome and other hereditary kidney disease… that’s for sure. Feel sorry and pray for those who could fall into this … trap
He’s got more videos? Did he just make them recently?? I haven’t had the time to go look myself with going back to work and with my own site’s downtime issues. In a way I don’t even want to bother looking for them because it will just make more people see them. At the same time I am curious … even though I know they would be the same misinformation. I still want to do a video but want a list of what things should be covered and answers as I am not familiar with the American system (for example, I have never seen or used the reuse system).
I still think more people should make videos as a rebuttal and name them something that is similar to his videos so they show up on the related list since he won’t approve rebuttal videos.
The question is what should be done about it? At first I was thinking that the videos should be removed, the site censured. But maybe instead this is an opportunity for a new kind of advocacy. An opportunity to educate by responding with good information. YouTube has the option to post a video response and to post comments.
What do you think? Anyone have more experience with YouTube? I don’t want to publicize the message without there being a counterpoint. There is also the opportunity to post comments.
Thoughts?[/QUOTE]
What does this man want to accomplish by posting a video full of non-sense? Does he just want people to buy his herbal products instead of receiving dialysis treament? I came from a country where herbal medicine is commonly used to treat many conditions and diseases. However, it is used under regulation and as an adjuvant to modern medicine. I do believe many herbs can benefit our health but can not being used solely to treat a serious condition such as kidney failure. Without dialysis, a person with kidney failure will die. When I developed kidney disease, I consulted many doctors including traditional herbal doctors and took herbal medicines prescribed by these doctors for many years. My kidneys continued to fail untill one day I was told that without dialysis or transplantation, I had only two more years to live. Dialysis was the best thing that saved my life.I have been on dialysis for twenty six years. I am still alive, active just like a normal person. I dialyze everyday. I don’t feel good even just skipping one day. Without dialysis, I would have died twenty six years ago. I think this video is very irresponsible because it gives people misleading information and wrong advices in a life and death situation.
Angie just to let you know that I am starting to get responses from branches of the Kidney Foundation of Canada…one suggestion was made that “someone should make a video counter view clip”…well we know that…
So my suggestion was that that someone should be the Kidney Foundation itself…the advocates for kidney and dialysis patients…a unified response is reguired after all it is the Foundations T.V. commercial that says … " after all we watch your backs" … so let’s see
I ask myself were is the National Kidney Foundation… Kidney School …and all organizations that advocate for kidney patients…these video’s are a direct slap and not only to the dialysis patient !! I know that if I where a Dr / nurse/ dialysis unit manager I’d be livid…and I’m not but I am…and hell I’ve never been a dialysis patient
We don’t have video facilities unless we have a funded project to create a video–and I’m not sure that responding is the best way to deal with this. Ignoring it may be best, or we risk driving more traffic to it. Posting comments, and–if you have video abilities–using the same title so you have a shot at a rebuttal are other strategies.
