Saturday, 24 March 2012

Explaining the Problem of CCSVI Theory and Solution

Here is a recently posted video on the state of CCSVI. It tells you where you can get your updates on the "fact" or "fiction" of the procedure and the state of play on how people are attempting to disprove the hypothesis in randomised blinded trials..............

Yes this is the basis of the Scientific (Karl Popper) approach....You should try to disprove your hypothesis (ideas) not prove it, when you can not disprove it, then you accept it and science moves forward.






If you think it rubbish or great you can comment on Youtube. I know you will say they did not all use the Prof Z protocol, but this really does not matter any more, as the trials are now in place. You should get an answer if venoplasty works or not. You don;t need more work to work out what to do you just need to repeate the reported succes, when in a controlled, blinded scenario.


I think this vidoe gives a fair view of the Scienfitifc Fraternity's approach. The Doc is not a neurologist so is he in the back pocket of pharma? Probably not.... You will say it is not fast enough as ever, but the process is being followed, as it is for every other drug. Until these blinded studies report things are unlikely to change much. Don't shoot the messenger.

16 comments:

  1. So is he in the back pocket of Pharma?.....I meant the MS pharma, he may have his tipples from other non-MS pharma.

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  2. There is one question that was not asked: is it safe to have your neck veins blocked?

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  3. For many healthy people with blocked veins (according to the CCSVI criteria) then you could argue it is safe......that is if the veins really are blocked. But it is kind of a strange comment. The aim of the video is clear.

    What is the evolutionary advantage of designing veins that can block?

    Is CCSVI present in children?, importantly is it present in other animals that do not get MS?

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  4. The video is more about a snapshot in time of the available ccsvi studies, rather than about ccsvi itself. Since it is a work in progress, counting less than 3 years, any effort to make a full picture out of the evolving pieces will inevitably result in blurred images.

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  5. If you want a video of ccsvi here is one uploaded by Prof Z?

    http://www.youtube.com/watch?v=C_RXs5dPh6E

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  6. Regarding scientific approach has anyone tried disproving the autoimmune theory as the cause of MS?

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  7. Re: "Regarding scientific approach has anyone tried disproving the autoimmune theory as the cause of MS?"

    All the time; every trial can be viewed as an experiment. There are still some problems with the theory and in my opinion MS does not tick enough boxes to classified as being definitely autoimmune. This is why we have launched the Charcot Project to test the viral hypothesis.

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  8. A comment about the meta analysis: if one removes one extraordinary result from the analysis (Zamboni's) should one not remove the other extraordinary result from Germany?

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  9. Regarding scientific approach: when does an experiment to disprove a theory become dangerous to the well being of the patient... I'm thinking here of the tysabri deaths and the other disastrous effects of PML.?

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  10. If one removes the extra ordinary result...


    This ia a fair point and one that Dr Laupacis addresses on the web site if you go to www.CCSVIreviews.ca

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  11. When does an Scientific Approach become dangerous?....If you an A from Cambridge...when you get a death threat!

    But seriously PML is of major concern and this is where information is the key. Prof G should be putting up his latest PML figures.

    All procedures carry risks and if you are taking these risks , you should doing this with your eyes wide open. This is for health and the health of your pocket.

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  12. Dear Michele
    Remember Two wrongs do not make a right. So even if the autoimmune theory is wrong........it does not say other theories are necessarily correct

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  13. Re: "Regarding scientific approach: when does an experiment to disprove a theory become dangerous to the well being of the patient... I'm thinking here of the tysabri deaths and the other disastrous effects of PML.?"

    When most trials start off you don't know what the risks are; this is one of the reasons for doing clinical trials. When the PML risk emerged Biogen-Idec halted all treatment with natalizumab and pulled the drug from the market. Once they assessed that the risk was quite low 1 in a 1,000 they discussed the risk:benefit ratio with the FDA and EMA and got a license for the drug. If you have highly active MS the benefit of natalizumab may out weigh the risks. What is risky to one MSer may not be risky to another. In addition, we now have other tools to risk profile MSers on natalizumab. If the drug was pulled off the market and never relaunched we would not have this information and would have denied thousands of MSers access to a very effective drug.

    Some in the CCSVI lobby would argue that natalizumab and fingolimod are not effective drugs. I suggest you ask MSers on these therapies what they think. A lot of them would not stop these drugs for anything in the world. Some say these drugs have given them their lives back. There is no doubt in my mind that these drugs work and they will improve the outcome of MS. The data to support the latter statement is emerging from long-term follow-up studies.

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  14. Can you tell us what is the longest duration of Tysabri treatment up to date? With and without drug holidays.

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  15. Is anyone from Biogen reading?

    Maybe you could answer this.

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  16. Re: "Can you tell us what is the longest duration of Tysabri treatment up to date? With and without drug holidays."

    Just shy of 10 years with a 7 month drug holiday after 2-and-a-half years.

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