Joan in the British DailyMail

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

Joan in the British DailyMail

Postby Fatima » Mon Jan 11, 2010 4:06 pm

here you are

Congrats, cheerleader, now you reached Europe!


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Postby SandyK » Mon Jan 11, 2010 4:21 pm

You'd think the US would want to celebrate one of their own. Thanks Joan. I celebrate you every day.
Diagnosed 1994, Self EDSS is 6.5
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Postby eve » Mon Jan 11, 2010 10:40 pm

Article is pretty decent, not negative in tone except for the comments of some experts.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby whyRwehere » Tue Jan 12, 2010 1:25 pm

2 things:
From the article:
Dr Alasdair Coles, an academic neurologist at Cambridge University, says: 'We know MS is an auto-immune disease because if you block the immune response with drugs, people get better.'

My husband never responded to immune modulating drugs, does that mean he does not have MS? In fact a lot of people don't respond to those drugs...if they did, we wouldn't be looking for a different solution.
At the end of the article, it lumps a few different ideas together, as though they were wrong or wacky...they include Vitamin d playing a role, which is showing to be correct and not wacky at all, it's just we don't bother taking it, until it is too late.
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Postby ozarkcanoer » Tue Jan 12, 2010 1:29 pm

Dr Zamboni never said that MS isn't an autoimmune disease. In fact in the documentary he said : "MS is an autoimmune disease. We have proof." But he goes on to say that we don't know what causes MS. And he hypothesizes that CCSVI may be the cause. So I don't really know what Dr Cole's point is for bringing this up.

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Postby cheerleader » Tue Jan 12, 2010 2:44 pm

yeah...I had little control on this one :?
loved the plunger pic....ugh.
I was supposed to get a copy of that to "proof" before it ran, and nada. I think Jeff and I are done with "press." Too much misinformation. We're just going to deal with doctors and researchers behind the scenes.
let's let this thread die a natural death in the morass of CCSVI misinformation.....
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby sbr487 » Wed Jan 13, 2010 12:22 am

Dr Alasdair Coles, an academic neurologist at Cambridge University, says: 'We know MS is an auto-immune disease because if you block the immune response with drugs, people get better.'

Are neuros born with some gene deficit?
How difficult is it to understand that erratic immune response could also be triggered by accumulation toxins in brain which immune system is religiously trying to clean up.
I am not saying that CCSVI is the definite answer but how difficult it is to add vein unblocking as one of the treatment methods.
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Postby costumenastional » Thu Jan 14, 2010 3:24 am

Dr Coles has spend the last 20 years along with Dr Compston, developing Campath 1H monoclonal antibody for MS in Cambridge UK. The 3 phase clinicAL trial (as i am sure most of us know) is expected to end 2012.
Can you imagine what it would be like for him, finding out that it was all crap?
I have had campath as well and i surely wouldn't like to do it again.

I must say though that dr Coles is a pretty decent guy, and he is helping however he can. And i am sure that he knows a great deal for ms. Having that said, i hope he is wrong ;)
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Daily Mail

Postby GiCi » Thu Jan 14, 2010 4:58 am

Before this topic dies its natural death, I wish to renew my sentiments of admiration for the formidable work you put into the support of the cause. You are a true inspiration for all of us.
Somebody said "bad publicity is better than no publicity": the Daily Mail article, even with its bits of misinformation, is publicity for CCSVI.
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