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Author Topic: Terrible YouTube video series - what should be done? Anything?  (Read 21180 times)
Bill Peckham
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« on: January 26, 2009, 09:08:45 PM »

I came across three videos that I think give dangerously bad information. They are:

The Dangers Of Dialysis Treatment Part I   http://www.youtube.com/watch?v=vpseAHkPPkc
The Dangers Of Dialysis Treatment Part II  http://www.youtube.com/watch?v=jipGr7Q4fbk
The Dangers Of Dialysis Treatment Part III http://www.youtube.com/watch?v=TTmzSz3a5Vs
copy and paste the urls

The question is what should be done about it? Anything? 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.

Thoughts?
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
jbeany
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« Reply #1 on: January 26, 2009, 10:11:05 PM »

I watched the first one - there's 10 minutes of my life I can't get back!

Two completely uninformed people talking about something they don't have a clue about.  I'm not sure it's worth responding to.
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Wattle
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« Reply #2 on: January 27, 2009, 03:01:30 AM »

I couldn't watch more than the first one. Arrggggg    :stressed; :stressed; :stressed; :stressed;

One clueless talking to another clueless. This proves you can't trust everything you read or see on the internet!   8)
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June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Adam_W
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« Reply #3 on: January 27, 2009, 08:57:18 AM »

Oh geeze! I actually watched the entire thing, and that was the most ridiculous piece of shyte I've ever seen. I did leave a comment on the first and second parts.

Adam
« Last Edit: January 27, 2009, 09:13:12 AM by Adam_W » Logged

-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
monrein
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« Reply #4 on: January 27, 2009, 09:12:05 AM »

Good grief!!! 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
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Second trx doing great so far...all lab values in normal ranges
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« Reply #5 on: January 27, 2009, 09:35:16 AM »

Dumb and Dumber talk about dialysis.  That is what this should be called.  I only watched the first one. 

                                :rofl;

Yeah, we should all comment.  Let me know!
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monrein
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Might as well smile

« Reply #6 on: January 27, 2009, 09:38:09 AM »

Bill, I vote that you do a video rebuttal, point by point, the only thing I wonder is...who would be watching this garbage anyway?  So, perhaps you've better things to do.  I know I do, why I think there's some urgent lint in my navel that needs attending to.   :rofl; 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Zach
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« Reply #7 on: January 27, 2009, 09:41:36 AM »


YouTube has the option to post a video response and to post comments.


Posting comments on that YouTube site would be a good step.

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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« Reply #8 on: January 27, 2009, 09:43:26 AM »

I wont even look at it.

I trust my IHD family..
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« Reply #9 on: January 27, 2009, 10:06:00 AM »

I was outraged by that video.  That young lady has not the first idea about what dialysis is about.  When she said that she quit, I said 'Thank you, Lord!'  I was embarrassed too to listen to a brother and a sister spout such fatuous ignorance!
I had to post a comment.  I will post another, because I need to post one explaining what dialysis is about.
Sure we hate dialysis, but we know we need it!
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I LOVE  my IHD family! :grouphug;
Bill Peckham
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« Reply #10 on: January 27, 2009, 03:14:15 PM »

I think it makes sense to post links back to IHD and other nonprofit sites like Home Dialysis Central and Nocturnaldialysis.org.

A video response is more work than I'd want to commit to for this quackery.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
RichardMEL
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« Reply #11 on: January 27, 2009, 06:57:10 PM »

Truly distressing to listen to this talking about her NOT UNDERSTANDING why they dialyise 3x/week - why do they "have" to do that? And how they take "tons" of blood from them every week. She never saw anyone get better in two years and nobody ever gets off it? Hello have you never heard of transplants? or moving to home hemo? or pd? This woman was ASSISTANT to the tech (heavy emphasis on the ASS) and a receptionist so honestly she would have no clue.. but I know our ward clerk would know heaps more than this person. ARGH! And they are talking about a lot of cases of very elderly patients too, which doesn't help.

It's just sad really.

What I'd like to know is who is behind this? This seems a reasonably professionally produced video and there's clearly an agenda there. But what and whom is behind it would be very interesting to learn more about. Maybe lock them in a room with that liver4you idiot....
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
RichardMEL
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« Reply #12 on: January 27, 2009, 07:09:47 PM »

OMG!!! Part 3!!! OMG IDIOTS!!!! "You don't urinate because they don't drink enough water and what little water they're drinking is held onto by the body" OH MY GOD!!! IGNORANCE!!!!!! For crying out loud!!!!

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #13 on: January 27, 2009, 07:20:27 PM »

OMG!!! Part 3!!! OMG IDIOTS!!!! "You don't urinate because they don't drink enough water and what little water they're drinking is held onto by the body" OH MY GOD!!! IGNORANCE!!!!!! For crying out loud!!!!


:rofl; :rofl; :rofl;  OMG Rich are you that bored at work that you are watching that dribble!!!

Don't torture yourself!!   :urcrazy;


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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
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« Reply #14 on: January 27, 2009, 07:24:36 PM »

RichardMel...At the end of this crap it said "Century Cable  Santa Monica University of Common Sense Hawthorne CA" both local communities.

 I think this is a great argument against reuse.  Do you want this woman cleaning your dialyser??  Not me!!  She said she worked at a D center for 2 years and believes patients are being "duped" into D.  The reason they can't pee is because of the fluid restriction...so the body holds on to every last drop!!  I think I have met both of these geniuses working in the ER!
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
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« Reply #15 on: January 27, 2009, 07:29:22 PM »

yeah no common sense there. Holy crap! The worst part is I am sure they both honestly believe they are spreading a good word to "warn" people about dialysis and all that. They probably believe they are Good People (and I am sure the intentions arre there) but the ignorance and rubbish spouted just makes me mad enough to boil (not hard in this heat, despite good work air conditioning).

And well Wattle yeah it is dribble but I wanted to hear the whole thing for myself... wish I hadn't.

horrible, horrible stuff.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #16 on: January 30, 2009, 01:46:02 PM »

well, i'm going to email the admin of youtube. that series is actually dangerous and needs to be deleted. there's already enough ignorance about dialysis around, thanks.
 :Kit n Stik;
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Adam_W
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Me with Baron von Fresenius

« Reply #17 on: January 30, 2009, 02:37:10 PM »

Hmm. I posted a couple comments on those and they're gone now. I wonder what happened.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
paul.karen
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« Reply #18 on: January 30, 2009, 03:43:38 PM »

That figures Adam,
Its not surprising they are censoring it.
The truth makes them look like fools.

Im glad we have the name.
I hate dialysis --but the knowledge to know why.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
Dan.Larrabee
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Dialysis Dan

« Reply #19 on: February 05, 2009, 10:11:41 PM »

At the end of the third video, yes I watched all three, they have some information and I was able to find Mr. Tim Morrow’s website for his business “University of Common Sense”. (he needs to take his own class – Common Sense 101). You can you get his email - tmiherbs@sbcglobal.net or his 800 number ….1-800-527-5682. Maybe if we all call him “toll free” or email him, we could get him to remove his posting on youtube. If we just post a response to his video, people would end up watching the crap first and may never see a video response. If we got him to remove the video it would be better.

Has there ever been an IHD protest march? We have 2935 members….. that’s allot of emails and phone calls. That would teach him to post his crap with a phone number.
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
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« Reply #20 on: February 05, 2009, 10:44:39 PM »


We had a receptionist at Jenna's clinic tell me that she didn't think that Jenna really needed dialysis (this was after 3 years on hemo!)  ???
Yeah, it's just a great big conspiracy to take your money...  :banghead;

YouTube has guidelines about Nudity and Sex, Children, Hate, Shocking and Disgusting and Copyrights...

and this

Dangerous Illegal Acts

While it might not seem fair to say you can’t show something because of what viewers theoretically might do in response, we draw the line at content that’s intended to incite violence or encourage dangerous, illegal activities that have an inherent risk of serious physical harm or death. This means not posting videos on things like instructional bomb making, ninja assassin training, sniper attacks, videos that train terrorists, or tips on illegal street racing. Any depictions like these should be educational or documentary and shouldn’t be designed to help or encourage others to imitate them.


I'd go so far as to say these videos give dangerous and misleading medical advice. More info:

You may not like everything you see. Some of the content here may offend you—if you find that it violates our Terms of Use, then click the button that says "Flag" under the video you're watching to submit it for review by YouTube staff. If it doesn't, then consider just clicking on something else—why waste time watching videos you don't like?

Info from: http://www.youtube.com/t/community_guidelines
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #21 on: February 05, 2009, 11:49:12 PM »


I commented on all 3 videos and I also flagged them as dangerous acts.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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Yes it is that crazy deaf bloke from the Top End!

« Reply #22 on: February 06, 2009, 06:35:36 AM »

He also have produced another video on youtube about Kidneys & The Dialysis Machine - it comes in 3 parts
http://www.youtube.com/watch?v=XYDkFhvIACs
http://www.youtube.com/watch?v=jHgbyRhCZQQ
http://www.youtube.com/watch?v=fNk2rC85xzw
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« Reply #23 on: February 06, 2009, 07:23:29 AM »

If you go to one of his internet pages:

http://mynsp.com/commonsenseherbs/index.aspx

We can see that he is actually an independent distributor of Nature's Sunshine products.

Entirely endorsed by:
http://www.natureshealthypeople.com/Natures_Sunshine_Coinfo.html

Mercola's vision:  To partner with you in your healing process,
 addressing every aspect of your health on a physical and emotional level,
 so you can begin to live the healthy life you were created for
 -- experiencing joy and gratitude, moving well, and living free of toxicity."

As testified by these folks:

http://www.naturessunshine.com/us/opportunity/testimonials.aspx

So, use the herbs to become healthy enough to sell  them and become wealthy in the process!

This is what BusinessWeek has to say about Mercola and his herbs:

http://www.businessweek.com/smallbiz/content/may2006/sb20060523_063274.htm?chan=smallbiz_smallbiz+index+page_today's+top+stories

Mercola has been warned by the FDA:

http://www.quackwatch.org/11Ind/mercola.html

So, perhaps e-mail Mercola about one of his independent distributors?


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Jill D.
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« Reply #24 on: February 07, 2009, 06:38:30 PM »

What a couple of numbskulls!
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
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