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

Possible new Treatment

Postby ama » Fri Feb 05, 2010 11:41 pm

I wonder what the different treatment is????? Any guesses?

I speculate that it is linked to the iron-deposits. In the newsletter its mentioned that they do a scan for iron deposits. I found in the last days a study from australian researchers, that in alzheimer desease you can find the same iron deposits. But we will know it soon. So we will have to wait for the publication. Its an exciting time.
In may opinion it dont work just with bloodsinners, maybe its contraproductive because of the microbleedings in the brain which are suspected of being responsible for the iron deposits. I think its not just as easy. But there are drugs for reducing iron deposits in other deseases.
Someone mentioned that it dont make sense to make a double blind study with surgery treatment and so its appearing to me.
But just a few days and we know more. Just amazing.
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Postby cah » Sat Feb 06, 2010 4:09 am

Note that there are two types of blood thinners:

The ones that are commonly known as blood thinners actually prevent coagulation. They stop blood from clotting but actually don't make it "thinner" with an effect to its flow characteristics.

The actual treatment for thinning the blood is called "hemodilution" and is completely different.

But I don't think that this is the solution.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby sbr487 » Sat Feb 06, 2010 4:31 am

"First they ignore you, then they laugh at you, then they fight you, then you win." Mahatma Gandhi


Can is this a coincidence?
Your quote can very well apply to CCSVI. It is going through similar phases?
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Postby cah » Sat Feb 06, 2010 4:51 am

This quote from Mahatma Gandhi is quite well known and applies to almost every peaceful resistance or movement. Of course I chose it in reference to CCSVI. So no coincidence but purpose. :)

I'm no pacifist as Gandhi was though. If someone put all those dismissive, close-minded, arrogant Neuros that disapprove the CCSVI theory at the outset without even looking on it in a big conference hall and then burned it down, I'd have no problem with that. :twisted:
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby sbr487 » Sat Feb 06, 2010 5:01 am

then burned it down, I'd have no problem with that


LOL ... :P

You know, one day I would like justice system to atleast question the people who knowingly opposed or stalled CCSVI. EU is well known for its landmark judgements, I hope that happens there one day ...
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Postby cah » Sat Feb 06, 2010 5:21 am

I think when the CCSVI theory proves right and isn't just a theory any more, it will bring justice to them by itsself. The more a neuro is (was) into this autoimmune, eae-mouse, immunemodulating stuff, the more his/her carreer will be pretty much over. Moreover, they will be punished for the rest of their life by knowing that their life's work was rubbish.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby HappyPoet » Sat Feb 06, 2010 7:19 am

1. Regarding possible new treatments -- SUNY-Buffalo has a Hemodynamics Lab and an Engineering Department with bioengineering, biophysics, micro-fluids, and mechanical and aerospace engineering -- perhaps they are involved in the CCSVI research???

2. Regarding so-called "sham" surgeries in double-blinded studies, ethics aside, are the effects the Internet and message boards might have on an MS patient who undergoes the "sham" procedure and soon after realizes s/he isn't realizing the same decrease in symptoms as others in the same study are enjoying -- and then that patient goes to the researchers complaining.

The Internet is connecting MS patients unlike ever before which would make such blinded studies harder to control. But perhaps a somewhat-blinded study is better than an unblinded study?

~HP
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Postby CureIous » Sat Feb 06, 2010 11:31 am

As with most topics, it's been a frequently traveled road, which makes for some great threads from the past to reference!

Another fascinating TIMS discussion on placebos, controls, sham surgeries, etc. Good read!

http://www.thisisms.com/ftopicp-74301-double.html+blind#74301
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blinded surgical studies

Postby fogdweller » Sat Feb 06, 2010 1:18 pm

Happy_canuk wrote:

UBC is only talking of doing angioplasty surgeries and, with a double-blind study, they will need to fake that part too.


I am not sure why this discussion is developing in this thread, and I am not a clinical trials expert, here is what we did at my last company and what I believe what will need to be done here(I think it is correct that sham surgery where the person in anesthetized and anything invasive is done would be unethical):

1. The patient had to first qualify as fulfilling the requirements of the test, i.e. be the right type of patient;
2. An envelope was selected from a number of randomly generated envelopes set up at the beginning of the trial that said either treatment or non treatment, and opened only after the patient had qualified. The ratio of treatment and non-treatment is set up at the beginning of the trial and isn't necessarily 50/50. In our case it was about 1/3 nontreatment, 2/3 treatment.
3. The treatment cases get the new treatmentl The non-treatment get the standard of care. If there is an established standard of care the patient's will always get that, both treatment and non-treatment, and the test results will compare the recipient's of both vs. just the standard of care. That is why in drug cases they are usually comparing a patient that recieves both A and B with a patient that recieves just A. A is usually the standard of care and the doctor won't treat the patient without providing at least the standard of care.
4. The results are blinded. In our case the results were radiographs at 3 months and 6 months, and the people who read and interpreted the results don't know what type of patient they are seeing, treatment or non-treatment.

You may remember that one of Zamboni's trials had the results blinded. All the x-rays from the 254 (?I am not sure) MS patients and all the results from the 600 ort so non-MS patients were shown to researcher's who didn't know, and they were determined to either have 1-5 stenosis. The results were still virtually 100% MSers had CCSVI and 0% nonMSer. Frankly that statistic was what absolutely convinced me.

Where there is no established standard of care and they are evaluating a new technique, as would be the case here, they compare the new treatment to historical data or those who chose non-treatment (which is not random but better than nothing.) In this case I speculate that different doctors will try different things and the results will be compared to each other and over time something will win out. That is what is already happening. Zamboni does veinous angiplasty, Drake was putting in stents, etc.

In case anyone is intertested, in my company's case the radiaologist swore they could tell the difference between testr and nontest with a glance at the x-rays, and the differnece was huge. When the results were unblinded it turned out there was no difference at all, statistically. The company (small start-up)failed and no longer exists. The system works.
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What do you mean

Postby weegie1 » Sat Feb 06, 2010 1:32 pm

Fogdweller,
For someone who has read your post after a couple of glasses of red wine, what is the point you are making?
Are Zamboni's results valuable or not?
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Postby fogdweller » Sat Feb 06, 2010 4:25 pm

Weegie:

Stunningly valuable, groundbreaking, historic, and the first bright ray of hopefullness since I was diagnosed 30 years ago!!!

I was addressing the questions that had been raised about how we would do a valid double blind study involving surgery, and the thought that the researchers might perform "sham" surgery.
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Media

Postby Asher » Sun Feb 07, 2010 11:43 am

Anyone have a hunch why the media, including internet, seem to be ignoring this sensational news letter? Asher, Holland
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Postby zap » Sun Feb 07, 2010 11:47 am

well, it's a "coming soon" kinda release, so any media who noticed is likely waiting on the goods to be delivered shortly ....
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Thx Zap

Postby Asher » Sun Feb 07, 2010 3:48 pm

zap wrote:well, it's a "coming soon" kinda release, so any media who noticed is likely waiting on the goods to be delivered shortly ....
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Postby fogdweller » Sun Feb 07, 2010 3:53 pm

For someone who has read your post after a couple of glasses of red wine, what is the point you are making?


Weegie, I re-read my post and you are right, not very clear. You would think I was the one with several glasses of wine! (Unfortunately not.)

The point is, no sham surgery.

Patients segregated by chance drawing to treatment or non-treatment. After that the pts and Dr of course know which, but the results (x-rays, MRI's or whatever) are shown to blinded people who read them, and their results are blinded until all the patient's have been run through the trial.

Only then the results unblinded and statistically analyzed.
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