A blow to revolutionary MS therapy

[1eye]

it's a good thing I have experts to support my right to an opinion. my experience with placebo is limited to being on one. it was blinded and I really wanted to believe. you'll just have to take my word that neither the drug nor the placebo had any effect. I think I have done my bit for science, thank you very much. the passive-agressive IF X IOU an apology doesn't cut any ice with me. do me a favour and spare me. to borrow from Missouri, don't just tell me. show me.

three years is a long time to wait, in this worsening condition, and a long time for a drug that doesn't work to be proven not to work.

you haven't had the last word yet, so i expect i'll hear more. oh well. smart people are ignoring, anyway.

[Zeureka]

Listen: If even 10% of these treated people are getting the benefit they appear to, something, other than PLACEBO, is going on. 1 If it is PLACEBO, it will be the first treatment that has ever had any efficacy, by PLACEBO alone. But science is full of firsts. Why should this be any different? 2 They should give Paulo Zamboni a Nobel just for his pioneering work on the extroardinary efficacy of PLACEBO, and discovering that such a terrible disease can be beaten, with PLACEBO alone.

There just isn't a shred of factuality in anything you've said.
1. There are an abundance of treatments which show efficacy by placebo alone and that is a large part of the importance in accounting for the placebo effect of a treatment during the trial process.

2. So far it's far from proven that "such a terrible disease can be beaten" by anything within his capability, placebo or otherwise.

Lyon, nice you're still around...I've been absent for a while.

whatever, for me is important we continue thinking "out of the box" and go on with this route - the link CCSVI and MS is clear and people feel better some more, some less - some for longer some shorter and the issue of restenosis still needs to be resolved. So shame on who intends to stop research based on rumours of unfunded safety issues. Ups and downs, but long-term we will know the reasons behind it all. And important we go on searching for them... I'm sure the puzzle will be solved. And I'm happy got the opportunity to test it on myself.

What a feeling these last days, let it be placebo but don't think so...(because then those transient headaches were placebo as well?) - feel much better, more energy (no fatigue/cloudy brain instability spells) - I'm awake!

[Lyon]

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[L]

but I do agree with the doctors that people treating and people being treated should only do it as part of the testing process and not just treat for the sake of treating.

You advise me not to get treated then? There are no trials near me and none planned.

[Lyon]

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[L]

You advise me not to get treated then? There are no trials near me and none planned.

I'll tell you what, I'll turn that over to the hands of the most revered CCSVI researchers (Zamboni, Buffalo researchers, Sclafani). What have they been saying for the last 6 months?

Seems they are to be revered when convenient and ignored when inconvenient.

Isn't that avoiding the question?

[Lyon]

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[L]

Isn't that avoiding the question?

I'm not a pro-CCSVI'er. I don't and never have professed to revere anyone involved with CCSVI.

At the very base level you are a damned fool if you don't do what your heart tells you and you'll be a damned fool if you kick yourself in the ass afterwards if it doesn't work. Your brain is the most important thing you have. Your brain is ALL you have and ALL that you are.

Still, none of that brings CCSVI a fraction closer to being proven.

Thanks Lyon, I'll take your good advice and get CCSVI treatment.

[Lyon]

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[Zeureka]

You advise me not to get treated then? There are no trials near me and none planned.

I'll tell you what, I'll turn that over to the hands of the most revered CCSVI researchers (Zamboni, Buffalo researchers, Sclafani). What have they been saying for the last 6 months?

Seems they are to be revered when convenient and ignored when inconvenient.

Just to inform that Z. is planning a placebo-controlled trial to start end this year (already has it approved from the region) - including 500 people. So this means only half of the MS patients included will be treated and those not treated will take how long before they will be told?

...and the centralised Bologna/Ferrara CCSVI waiting list in Italy is now already over 2500 people. Who would not realise (if since longer on this waiting list) that it seems to have been set up from start hoping that could calm down MS patients seeking CCSVI treatment. But as noone is informed and the list was opened Oct 2009 for purpose of doppler-testing - in the end most actually get anxious. Timings and no communications at all provided to those included on this list and only voices spread via internet forums/real timings stretched...is this the way how to handle MS-patients?

In my view the bureaucratic limitation of intervention in italy to this only 1 approved placebo trial study to start by end this year (and on such small scale) is absurd...doppler tests will be performed earlier in Italy think on 1500 people (including 500 with MS) within another trial comparing different groups and also comparing doppler with MRV. But again only 500 - the list includes 5x as many...and what if I know my doppler result without being able to get treatment?

I already followed my heart but not without additional costs and efforts. It's sad that others in Italy (their heart certainly beating heavily, you see it on the Facebook forum every day!) cannot all follow it. They still wait to be called for their doppler test which will be performed on basis of first ones on this waiting list: but it all stops there for now...and the messagge is publicly: wait for research. I'm on the list as well since end last year and really curious to see when get a call, if ever...

[sofia]

So we are here left with is:

1) A whole lot of professors saying they can both see structural problems with the veines, that has impact on flow, and they can correct them.

2) A whole lot of profesors that can not find any strucural abnormalities, and if there is any, they do not have any impact on flow.

3) A whole lot of patients saying we feel liberated after professor found ccsvi and did the procedure.


If group 2 is correct, it suggests that group 1 and 3 lies.
If group 1 and 3 are correct is suggests that group 2 needs to take a better look.

[Cece]

Thanks Lyon, I'll take your good advice and get CCSVI treatment.

I trust that you'll keep this between you and I!

Hey I read it too.

[concerned]

I don't think anyone, or many people anyway, are saying your groups 1 and 3 are lying. Confirmation bias, "meaning response" and other problems raised by this research aren't lies, they're real things that need to be worked out in controlled studies.

Setting up a false dichotomy doesn't prove anything.

[sofia]

It is not false, it is bang on!

Change "lyed" with "made up" if you want.

[concerned]

Lied and made up imply conscious intent.