MS therapy divides

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby scorpion » Thu Aug 12, 2010 4:15 pm

Someone needs attention....
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Postby patientx » Thu Aug 12, 2010 5:44 pm

PCakes wrote:..please cite an example of 'bullying' someone who had a negative treatment experience? Is offering up support by means of suggesting why the treatment failed bullying? Granted, sometimes we should just 'listen' but it's the nature of this beast to try to help.
Sorry, I've never witnessed such a response on any of these sites? Other forms of attack, yes, but this? I hope you can not prove me wrong.


http://www.thisisms.com/ftopic-9176-day ... asc-0.html
(You only have to read through the first 2 or 3 pages.)
An example:
My bet is the damn loose stent that the one guy had and his complaints that Dake didn't tell him he was even getting it. I'm not a gambling girl but I would bet on this one.


And this type of stuff is probably only the tip of the iceberg. Sometimes the really bad stuff isn't posted out in the forums.
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Postby patientx » Thu Aug 12, 2010 5:46 pm

1eye wrote:I bet Radek likes the list. That's all that matters to me, as far as insensitivity goes.


And you would be very wrong. But I guess all that is important is what matters to you.
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Postby jimmylegs » Thu Aug 12, 2010 6:19 pm

If the opponents of Liberation can make reference ad nauseam to the stent incident, so can I. In fun. I bet Radek likes the list.


it is true that 'the stent incident' is often mis-cited. i think it is done in carelessness, not by intent.

the idea of intentionally making light of the life threatening, terribly unfortunate consequences of an individual's pioneering efforts wrt the process so many here at TIMS endorse, is unacceptable.

if liberation opponents, skeptics, or supporters are making light of the serious sacrifices made by TIMS members in the early stages of CCSVI exploration, please send their comments, including post URLs, to my or NHE's attention via private message.

thank you,

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Postby PCakes » Thu Aug 12, 2010 6:25 pm

patientx wrote:
PCakes wrote:..please cite an example of 'bullying' someone who had a negative treatment experience? Is offering up support by means of suggesting why the treatment failed bullying? Granted, sometimes we should just 'listen' but it's the nature of this beast to try to help.
Sorry, I've never witnessed such a response on any of these sites? Other forms of attack, yes, but this? I hope you can not prove me wrong.


http://www.thisisms.com/ftopic-9176-day ... asc-0.html
(You only have to read through the first 2 or 3 pages.)
An example:
My bet is the damn loose stent that the one guy had and his complaints that Dake didn't tell him he was even getting it. I'm not a gambling girl but I would bet on this one.


And this type of stuff is probably only the tip of the iceberg. Sometimes the really bad stuff isn't posted out in the forums.


hmm..not a great example.. but, i'll give you this one.. if i must. :(

Px.. thank you for bringing this string back to the surface. The awakening to Dr Dake being shut down was a shocking moment. Reading this
reminds me just how far CCSVI has come.. here is an exerpt from marcstck's post on page 3

J., I fully understand your position, as I'm almost as old as you are. My problem in assessing the risk is that we don't have enough information to go on. Right now all we can say is that 1/65 patients required emergency open-heart surgery after undergoing the stenting procedure. If that's a true reflection of the risks involved, they're quite high.


1/65 - then.. 1/2000?- today.. I cared about Radeck then, as I do now. I pray that he is well.
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Postby garyak » Thu Aug 12, 2010 6:38 pm

1eye wrote:
Johnson wrote:Think Kubler-Ross and the five stages of grief.


What are they, anyway?

denial -- actually helpful, for a while. not a river in egypt.
bargaining -- tried to bargain with neurologists who just said "no"
depression -- not with these handy-dandy happy pills
acceptance -- well I'm in the dadgum wheelchair and I take all my meds, so I'm gonna die? bring it on...

anger: that one I have no problem with. angry I am. Not because I have a disease, or that it's gonna kill me, or that I ain't ready. I am. But if I don't live to see the neigh-sayers proved wrong: well then I'm really gonna be mad.

But Kubler Ross left out a few:

1.5 Distraction -- used to facilitate denial. Like turning 40, only much worse.
2.5 Stealing -- used to get more money and better drugs. When caught, see number 2 -- bargaining.
3.5 Disillusionment -- jaded opinions becoming rampant as one finds out about truth, justice, the American Way, and that Superman killed himself because he was typecast, and the Scientific Method and what Really Motivates, and I need a drink.
4.5 Alcoholism -- the second-last stage before death, and I'm leaving on the next one. Buy you a drink?


You are smoking better medicine than I am for sure.
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Postby 1eye » Thu Aug 12, 2010 7:10 pm

I still say he would get a laugh out of it.

I read the thread you pointed me to. Radek would know that I was not making fun of him, much as you would like to imply that I was.

Censoring is your job, JimmyLegs, and your right. But because you believe something, doesn't make it true (as skeptics would remind you). I think the list was sending up the many references to the incident in the press. It was sarcasm, irony, directed at the press. Erasing it and references to it only pleases those who would take even this misfortune and use it as a cynical, out of context weapon at any imaginable opportunity for the latest propaganda.

That neither the moderator nor the usual crowd of skeptics think that is funny I guess isn't a surprise. Those who cannot understand the humour are misinformed or truly jaded people That does not make it any less funny. I was deliberately more accurate than the newspapers usually are, mixing it up at will with a death, and saying it happened in Italy.

I think skins are getting very thin. Maybe desperation applies not to the CCSVI patient, but their former neurologists :D
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby concerned » Thu Aug 12, 2010 7:13 pm

garyak wrote:
1eye wrote:
Johnson wrote:Think Kubler-Ross and the five stages of grief.


What are they, anyway?

denial -- actually helpful, for a while. not a river in egypt.
bargaining -- tried to bargain with neurologists who just said "no"
depression -- not with these handy-dandy happy pills
acceptance -- well I'm in the dadgum wheelchair and I take all my meds, so I'm gonna die? bring it on...

anger: that one I have no problem with. angry I am. Not because I have a disease, or that it's gonna kill me, or that I ain't ready. I am. But if I don't live to see the neigh-sayers proved wrong: well then I'm really gonna be mad.

But Kubler Ross left out a few:

1.5 Distraction -- used to facilitate denial. Like turning 40, only much worse.
2.5 Stealing -- used to get more money and better drugs. When caught, see number 2 -- bargaining.
3.5 Disillusionment -- jaded opinions becoming rampant as one finds out about truth, justice, the American Way, and that Superman killed himself because he was typecast, and the Scientific Method and what Really Motivates, and I need a drink.
4.5 Alcoholism -- the second-last stage before death, and I'm leaving on the next one. Buy you a drink?


You are smoking better medicine than I am for sure.


Well, probably not better than me, so that doesn't explain everything.
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Postby CureIous » Thu Aug 12, 2010 8:25 pm

It's interesting how so little of the press from last year to now concerning CCSVI has been even-handed.

I've said it before and I'll say it again, the press is not our friend, they aren't there to grant you your 15, or frankly much even care what kind of cool new treatment you have for X disease.

They are there to garner/grab and hold on to an audience using whatever means necessary, influenced by the particular leanings of the editor, the shareholders and I'm sure many others behind the scenes.

How many times have I had intimate knowledge of a particular incident, only to see the press butcher it (in the name of "editing") to a barely recognizable charting of the facts? Plenty.

Goes without saying that we all bring our particular bias to the table, some more than others, when reporting, blogging, message boarding or the like. Spin is spin is spin, nobody and no site no matter how circumspect is immune from it's effects. Several examples related to CCSVI come to mind, but I'll just leave the tease where it is...

As with any new source, I like to get a feel for the overall thrust of the writer and his/her context is speaking. Are we talking about CCSVI reporting in the National Enquirer next to UFO's landing on the NMSS's roof, or a particular paper that readily shows where's it's heading before the first paragraph is read, or something a bit more even handed, in the middle, trying to stick to the neutral ground as much as possible?

In this case (getting back to the original post), one quick perusal of the OTHER headlines on the page leaves one with little question of the heavy bias exhibited, before one word is parsed:

'Placebo effect' a concern with controversial MS treatment: Experts
Saskatchewan affirms trials of MS therapy despite doubts of researchers
Sask. plan to fund MS treatment trials raises debate across Canada
Sask. offers to fund trials of controversial MS therapy
I'm a normal person': mother celebrates controversial MS treatment
Don’t base MS cure on hope: Paper (Okay then thanks for the tip on ignoring hope!)
MS patients eagerly pursue their ‘liberation’ (why can't it be "educate themselves armed with the best info available at the time"?, this makes it sound as if we are eagerly running around pursuing anything that looks good, even a "liberation" in quotation marks!)
Promising MS treatment could divide advocacy group (sigh, yes, the "treatment" is dividing people, bad treatment, bad bad bad!)
Liberation or placebo effect? MS surgery (yeah yeah we got it already on the placebo thingy).

Funny how when the much touted oral drugs came out, one could barely find a negative word anywhere, at first blush one would think MS "could now be treated with a pill".

As newspapers go more into decline in this electronic age, expect to see much less journalism and much more "gotcha gotcha gotcha".

Hey I got a good idea, why not track down every Stanford patient who's been treated and interview them 1 year after the fact? Good, bad, ugly or whatever, let the facts as they stand this moment speak for themselves.

Guy can dream right? Maybe do another follow up/ track down of the Zamboni cohort who are much further out than the Stanford pioneers.

Shouldn't be too difficult, if they can resurrect half-truths at a moment's notice surely accurately reporting easily garnered information shouldn't be a problem. It just wouldn't generate much "controversy" though. Bad move, stick with the grab n' go approach!

Mark.

(And since when did some guy on the internet getting into a chat squabble become news worthy?, why not report the other 99.9999% productive discussions too?)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jimmylegs » Fri Aug 13, 2010 2:57 am

px, i went and found that thread and although the sentence you quoted is callously expressed, i'm not sure it constitutes bullying per se, if you read it in context. your quote above is preceded by this:

http://www.thisisms.com/ftopicp-79250.html#79250
This would not have been shut down with zero notice (i.e. people in the waiting room ready to go) without it being because of something major.
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Postby jimmylegs » Fri Aug 13, 2010 3:10 am

1eye, i'm not sure where i pointed you to a thread. please clarify.

i'm not implying that you are making fun, i am stating that you are being inappropriately insensitive to a TIMS member who is a pioneer of the treatment you and many others are eager to have take root.

if i were the editor of all press worldwide there would never have been erroneous print on such an unfortunate incident.

i'm not the editor of the media, but i am a TIMS moderator. radek, if you have read this thread and agree that 1eye is hilarious, please feel free to private message me and i will retract my edits.
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Postby Billmeik » Fri Aug 13, 2010 3:24 am

why is it no surprise that this is from Alberta? Im not saying the whole province has mental problems but in several areas they are out on a limb believing something different. something wrong in my humble opinion.
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Postby jimmylegs » Fri Aug 13, 2010 3:39 am

scorpion, getting back to the point of your original post, this just got posted under general discussion:

http://www.thisisms.com/ftopicp-128869.html#128869

a site for finding commonalities. interesting and well done. check it out!

(also skewed to the UK, that should be easily remedied :) )
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laughs

Postby 1eye » Fri Aug 13, 2010 7:13 am

I'm not sure any press worldwide take themselves as seriously as you do, Jimmylegs, but I doubt Radek is going to see it now. Anyway, at least it was fairly high on the paper's blog for a while.

I think we have to remember that the days of general-purpose newspapers are nearly over, but I really doubt you are correct about that, and still I say if Radek were to read it he would get a laugh. Sorry it has fallen to your censoring; we'll probably never know. A joke that grew way out of proportion, but at least it kept the Gang busy for a while. Thought people might like a laugh, but the rest of the list stands on its own. BTW I got a PM from someone who badly needed a laugh who told me I had made them laugh twice yesterday. That's what it's all about. That, and getting to the bathroom on time.

But I guess all that is important is what matters to you.

I seem to remember someone else telling me that. It must be true. All that matters to me is definitely what matters to me.

BTW it was not JimmyLegs who referenced the thread on the Unfortunate Incident. Also BTW you do recover your sense of humour after heart surgery. It doesn't take that long. The guy at my table in respite care was ninety and he still had his. They may operate on your heart, but they usually leave it in. I wonder what Dr. Dake would say about all this.

I stand suppressed.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby shye » Fri Aug 13, 2010 7:18 am

Jimmylegs,
if liberation opponents, skeptics, or supporters are making light of the serious sacrifices made by TIMS members in the early stages of CCSVI exploration, please send their comments, including post URLs, to my or NHE's attention via private message.

Why are you speaking in terms of sacrifice? No one is making their CCSVI decisions in terms of others--they are doing it first and foremost for themselves. We are all gaining from the info, but that is NOT why the procedures have been done--sacrifice is a totally inappropriate, misleading description.
Isn't this thread (and this runs elsewhere here at TIMS also) taking itself a wee bit too seriously?
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