Skeptic Mentality

prairiegirl · Post by **prairiegirl** » Sat Nov 13, 2010 11:48 am

scorpion wrote: Please quit idealizing eveything that surronds CCSVI because the only thing that it has accomplished is to polarize peopel

I stand corrected

MS_HOPE · Post by **MS_HOPE** » Sat Nov 13, 2010 11:55 am

Prairie girl, you said most of what I was going to! Centerofgravity, good post, and no babbling there! You and I are fortunate to be able to wait till more scientific findings come in to optimize treatment results. Not so for everyone, as you know.

Let's hope the truth is found sooner rather than later. Good studies with adequate funding are needed; some underway now.

It's hard to be patient.

MS_HOPE

Brainteaser · Post by **Brainteaser** » Sat Nov 13, 2010 4:44 pm

Good posts Centerofgravity.

Personally, I'm skeptical of the resident CCSVI skeptics, and I don't seem to be alone. I ask myself why I don't see the same intense level of skepticism about anything else to do with MS. For example, stem cell therapy is at the frontier stage also - yet I haven't seen any criticism along the same lines of CCSVI criticism. I also wonder why some CCSVI skeptics can post incessently the same anti arguments which we have all seen before, appreciate and understand. Their arguments are not rocket science. There is nothing new there. For anyone embarking on a CCSVI treatment, the downside arguments would be a normal component of any rational assessment of a thinking MSer, which we all are. To my knowledge, none of the resident CCSVI skeptics has ever come close to doing a CCSVI assessment or treatment themselves. What first hand knowledge do they have?......zip. For all their thousands of CCSVI posts, if you dissect them, I'm reasonably confident you won't find any proactive thought or point that actually advances CCSVI in any way. I've not seen anything myself that screams, 'yes, I think they are on to something here!'

To me, the skeptics are an idle diversion, who may have a few problems. It almost seems, the more they post, the less impact they have - a bit like a bad commercial or political slogan.

I'll qualify my position by declaring that I've had stem cell therapy twice, which I think has a long way to go for MS, and CCSVI treatments five times, which I think is more promising for MSers. Personally speaking, I would put CCSVI in front of stem cell therapy by a country mile as a potential treatment for MS.

concerned · Post by **concerned** » Sat Nov 13, 2010 5:09 pm

Well, if you would read my posts, when it comes up, I've voiced my skepticisms about current stem cell therapies, but it doesn't come up all that often.

As far as other MS therapies go, my mother is spms and has never taken any dmds, so I have no personal experience or relation to any of those things.

I've never posted anything that screamed "Yes, they're on to something here!" because, I haven't seen anything that has screamed "Yes, they're on to something here!"

Lyon · Post by **Lyon** » Sat Nov 13, 2010 5:20 pm

scorpion · Post by **scorpion** » Sat Nov 13, 2010 5:25 pm

We know that stem cells exist but as of yet CCSVI remains a hypothesis. I would also suggest you read the stem cell forum where I recently questioned someone who stated they were cured after receiving stem cell therapy. My wife is involved in stem cell therapy and she says there is a long way to go before we will know one way or another whether stem cells will live up to the hype(although she is hopeful). Her colleagues who are involved in clinical trials have reported positive results BUT they are skeptical that some people involved in the trials are experiencing a placebo effect. Why Zamboni and his pals have never even talked about placebo is beyond me. [/b]

Cece · Post by **Cece** » Sat Nov 13, 2010 5:30 pm

CCSVI as medical hypothesis, CCSVI as sterile theory...it is indeed a different way to look at it.

Lyon, there's room for you on the bandwagon, when/if that time comes.

Lack of glee noted, for the record.

scorpion · Post by **scorpion** » Sat Nov 13, 2010 5:33 pm

Cece wrote:CCSVI as medical hypothesis, CCSVI as sterile theory...it is indeed a different way to look at it.

Lyon, there's room for you on the bandwagon, when/if that time comes.

Lack of glee noted, for the record.

Don't worry Lyon. Cece is scorpion meat.

Brainteaser · Post by **Brainteaser** » Sat Nov 13, 2010 5:49 pm

To concerned and Lyon, all I'd say, is that in an ideal world, an MS cure for 100% of us would come knocking on our door, all packaged up and ready to go, carried by a jolly fat man in a red suit with snow white beard.

Maybe, sometimes in life we need to put aside our idealistic, macro tendancies and work with what we've got in the here and now. Life moves very fast.

Post by **jimmylegs** » Sat Nov 13, 2010 5:52 pm

enough with the glee already :S hehehe

Brainteaser · Post by **Brainteaser** » Sat Nov 13, 2010 6:15 pm

Scorpion, I think there is an element of placebo in SCT but not CCSVI - but that is just my experience and opinion. What Zamboni, you or Zamboni's 'pals', whoever they are, say about placebo, to me is somewhat irrelevant.

Lyon · Post by **Lyon** » Sat Nov 13, 2010 6:28 pm

Brainteaser · Post by **Brainteaser** » Sat Nov 13, 2010 8:09 pm

Lyon, I'd like to be a lawyer and have you in the witness box. You can choose A or B - there are no other alternatives.

A. You/your loved one can commence a course of action where based on anecdotal evidence, there is a reasonable chance of success.

or

B. You can take no action with dire consequences.

Note that this is not linked to CCSVI or any particular person's circumstances. It's simply a matter of your response to a situation.

Lyon · Post by **Lyon** » Sat Nov 13, 2010 9:22 pm

CureIous · Post by **CureIous** » Sat Nov 13, 2010 10:38 pm

Lyon wrote:Additionally, I've said several times in the past that if my wife's disease course was more progressive, we'd seriously consider venous angioplasty but it's become VERY disconcerting that no one here at thisisms is shouting from the rooftops that venoplasty didn't work or even made their situation worse...that is coming out much afterwords in casual conversation, almost as an afterthough and can't help but make you wonder how often neutral or negative results just aren't coming out at all.
.

Sometimes, you see what you want to see. This canard that somehow the negative is suppressed, while the positive is hurriedly categorized as anecdotal (but negative results aren't anecdotal?) , always makes my mind wander back to a glaringly obvious sticky posted on this very site, called "Sticky: Post if CCSVI treatment did NOT work for you", with 43,000+ hits, the third from the top, only surpassed by the rules of the board, and a thread for newbies. 2 posts under that is "known risks and complications" with 40,000+ views. Between the two, there's 80,000 hits, that's no chump change on ANY site. "The word is out", and it's right there in black and white for everyone to see.

I'd hardly call that background noise, wouldn't you agree?

So you didn't really mean TIMS when you made that characterization, you mean studies? Which studies? I thought there weren't any studies yet besides a few easily dismissed prelims, and the astounding German and Swiss studies which were wholeheartedly accepted without batting an eyelash.

What exactly are you talking about with these characterizations? And where are the people who are being pounced upon for having negative results? Certainly not in here, I see nothing but support for them.

Just trying to get a handle on your source of information for making those statements.