This Is MS Multiple Sclerosis Community: Knowledge & Support

This thread proves(/supports) my point that all supplement users should be regulated and licensed.

Before anyone can purchase any supplement they must pass a basic test to measure their understanding of the effects and consequences of taking that item.

Only then can they be permitted to purchase that specific item.

jackD


I am doing GREAT. I do not shop at the "IndiaMart".

Quote:

If CCSVI is resulting in congestion and slowed flow, then the brain cannot self-regulate blood flow as effectively.

Exactly. Great study link, Cece.
Dr. Cooke talks about this in his ISNVD interview, around 2 minutes in.
http://www.youtube.com/watch?v=WZAUloQu4O4

Dr. Cooke will be the featured speaker at the Hubbard Foundation weekend in San Diego. Looking forward to reporting back what he is learning in relation to the cerebral endothelium and MS. Feeling lucky we're having conferences on the west coast this year.

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello Cheer and Cece,
I try to be a cautious skeptical scientist and have a different level of evidence than the one you both appear to accept. For me, the papers you cite are theories or hypotheses not evidence of what CCSVI syndrome does to pwMS and others. My naming theories and hypotheses from leading scientists as speculation was provacative (deliberately so). I hope that the CCSVI researchers will provide evidence that treating CCSVI syndrome changes hypoperfusion, low O2 and cerebral oxygenation levels in pwCCSVI before and after venoplasty. I hope that both of you appreciate we are in the hypothesis stages of CCSVI syndrome. We have have initial evidence that if you treat CCSVI syndrome that many people with RRMS appear to benefit. That is a reason for treating the symptom of stenoses when found. I speculate that the correlation between hypoperfusion, low O2 and cerebral oxygenation levels in pwCCSVI before and after venoplasty will not be 1 (direct correlation). The reasons could be that all stenoses have not been treated or that the link is more complex than we hypothesise at the moment.
I realise you are trying to answer patients questions on CCSVI. My comment is that:
we have have initial evidence that if you treat CCSVI syndrome that many people with RRMS appear to benefit. This is a reason for treating the symptom of stenoses when found, while further research is conducted, which is likely to take 5 years or more. My answer to the question 'does CCSVI cause MS' is 'I have insufficient evidence to answer at the current time'. The short version is 'I dunno'.
MarkW

[quote="cheerleader"]
Mark--it was all this "speculation" (as you call it) that got the doctors to look at hypoperfusion, low O2 and cerebral oxygenation levels in pwCCSVI before and after venoplasty. Researchers are now measuring it and finding a correlation. It is a BIOMARKER and it is important, even if you do not think it so.

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I think we are in a rather fundamental disagreement about what the purpose of the TiMS forum is for. Is it only to educate newcomers? Or are we also here to discuss research to the best of our abilities? If it weren't for discussion of research, would dignan had brought Dr. Zamboni's endovascular treatment trial paper to Cheer's attention back in 2008, launching a series of events that led to where we are now?

Thanks, Cece. Could not agree more. It was "supposition" and "hypothesizing" and discussing research that started all of this, thanks to the open community of TIMS. Dom, dignan, Marie, Sharon, Shayk, Cure, NHE, jimmy, gibbs, and dozens of others were interested in the vascular connection. As new research comes in on oxidative stress, hypoxia, hypoperfusion, etc...we are learning more about neurovascular disease. The stickies are there to educate new comers on what we know about CCSVI.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello Cheer and Cece,
I do not want to change the purpose of TiMS. Some months ago, I had a disagreement with Cheer about how research papers should be used. If you quote papers which include hypothesis as 'fact' I will challenge this. Dr Tucker's papers are a good example of this. They are interesting to read and the equations he is developing are useful but they are not experimental evidence.
I would encourage both of you to learn from 'big pharma' on how to spread medicine usage. Consider the development of cholestrol lowering drugs. The message was 'using these medicines is beneficial' not 'these medicines treat diseases XYZ'. Simply I recommend the approach that 'treating CCSVI syndrome is beneficial' is a fast, tried and tested method. The academic reasearch approach of asking 'why' and developing hypotheses takes many years. Compare using antibiotics for peptic ulcers, it took years.
Unsurprisingly I use my pharma industry as an example. Yes it is hated by many posters on TiMS but it makes billions of dollars every day of the year.
Best wishes,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Mark--Big difference between why I'm here and what pharma does--I'm not selling anything. I don't want people to get treated for CCSVI unless they have done the research, can stay close to home, work with a physician who has an IRB and can follow them. I don't want people treated for CCSVI unless they understand this may not be a one time procedure, and they are willing to make the lifestyle changes in diet, exercise, and lifestyle habits, necessary to maintain a healthy vasculature. Because bad treatment is worse than no treatment...as evidenced by all the people who have restenosed, clotted and have no other treatment options. They come on here and they are hurting. And that is upsetting.

I'm here because I believe venous insufficiency is real, and we need more research.
I'm here because Jeff's doing well three years later---and the success of his CCSVI treatment is due to the fact he
1. stayed local 2. changed his diet and lifestyle 3. had retreatment 4. kept active 5. worked with a vascular specialist.
The only way to move CCSVI forward is NOT more treatments that are not followed or documented in published research. The only way to move CCSVI forward is research and encourage collaboration between practices and keep patients safe. That's what we do at CCSVI Alliance. Check out our new video interview with Dr. Robert Fox and Jeff's doctor, Dr. Michael Dake. www.ccsvi.org

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS