This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello yeadonscience,
I am happy to answer questions on CCSVI after you have studied this paper, not before.

MarkW

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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

OK it is not easy but please try to read the originators' ideas...............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

This paper is useful for your family doctor or neuro. It sounds better to say 'here is Prof Zamboni's recent paper on CCSVI syndrome' than I was reading about CCSVI on the web.
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

HOLIDAY READ - CCSVI Syndrome by Zamboni & Galeotti
Use it as a great excuse to avoid relations if needed......................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

Lol, Mark...a great excuse to avoid relations?!

"To be determined" is going to be presenting on this topic on the last day of ISNVD in February: Is CCSVI a disease?

We have a whole thread here explaining that it should be considered a syndrome.

But here is a definition of disease:
http://chronicfatigue.about.com/b/2011/ ... ndrome.htm

and syndrome:

Looking at these two definitions, it seems to me that CCSVI is a disease. Etiologic agent would be congenital vascular malformation. Identifiable signs and symptoms (if we leave MS itself out, which we should, since it complicates things) would be fatigue, weakness, vision impairment, impaired balance, and impaired cognition as symptoms. Reflux in the jugular veins, all the zamboni doppler criteria, and visible signs of congestion in the retinal fundus are signs. Consistent anatomic alterations would be the malformed valves themselves, as well as septums, hypoplasias, compressions of the renal or iliac veins. These are visible upon autopsy.

While we may presently refer to it as a syndrome currently in order to seek treatment, I would say that it is more accurately a disease and that research will bear this out.

Personally, I do not care whether they consider CCSVI a disease or a syndrome or any other name. I guess I would rather know where does CCSVI exactly fit in with "MS". And find a permanent fix for this horrible disease/condition!!!!!!!!!!!

Sorry Cece but Zamboni & Galeotti (Z&G) said it is a syndrome in the name of the paper. I was delighted at Z&G's naming CCSVI a syndrome in the title. As CCSVI is a syndrome it is good medical practise to treat the syndrome while further research is undertaken. (Z&G inform us it is safe to do this in the paper). The research should find out the etiology of the diseases involved, CCSVI could be part of the etiology of MS or part of many neurological diseases. (Personally I go for 'part of many neurological diseases' but there is insufficient data to be definite.)
Z&G received lots of negative press when they suggested the iron hypothesis for MS. This paper avoids giving their ideas on the relationship between CCSVI and MS, instead it focusses on their findings.

Hello Dania,
I think the opposition to CCSVI in Canada is related to the 'liberation treatment' message promulgated by some CCSVI advocates in Canada. Requesting treatment of CCSVI syndrome is less controversial and seems to be working in the UK. Time will tell the more successful approach.

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

In the article I linked, it mentioned that AIDS was named when it was a syndrome (acquired immune deficiency syndrome) and that it later met the criteria of a disease, but was not renamed.

This is the outcome I expect for CCSVI syndrome. Currently it is a syndrome, but as it is fully researched, it can be expected to be established as a disease, since looking at it logically, it appears to meet the criteria for a disease.

I like the 'CCSVI syndrome' paper too, and I like the idea of seeking treatment now.

A Canadian, however, will get nowhere if requesting 'liberation treatment' or 'CCSVI syndrome' alike! Here in Minnesota I currently could receive CCSVI treatment if I needed it in my hometown covered by insurance. That might not last, if insurance stops covering it, but in Canada, as early as 2009 when the CCSVI story broke, this wasn't possible. It's 2012 now. I know the day will come when CCSVI treatment is available in Canada (even if just available for pay, and perhaps at a reduced rate and no travel costs compared to the current need to travel to the US or elsewhere). It will be a day long in the making, and well worth celebrating.

Knowing where CCSVI fits with MS, as dania suggests, is something I dearly want to know too, but that is the long-term research, and the idea behind the term 'ccsvi syndrome' is that there are enough signs and symptoms present to treat, now.

Hello Cece,
I am not sure that CCSVI will be named a disease because it could be involved in many diseases and the medical community likes to give each disease a particular name. Time will tell and your crystal ball could be more accurate than mine.
I am still worried that people do not comment on this paper. I feel sure that it will be cited when the CCSVI syndrome/disease story is being explained in a decade or two.
Kind regards,
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

It seems to me that many of the researchers presenting at Orlando either did not read or did not appreciate (take on board)this paper.
Also bumped for pwMS reading and trying to understand CCSVI in the context of MS.
MarkW

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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

Dr. Zivadinov did a presentation on, "Is CCSVI a disease?"
I can't tell if he was distinguishing between diseases and syndromes.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19265.html#p186879

I think it is interesting because I have struggled with the difference between the terms "stenosis" and "narrowing". Much is made in Dr. Fox's interview, about the fact that he did not find narrowing. Yet, Dr. Zamboni says the stenoses are likely to *be* intraluminal defects, webs, septa, etc. Personally, I don't care what you call them. But I remember in the 2009 CTV program, W5, he seemed to take care to use the word "narrowing." Perhaps he was being careful back then not to call it a stenosis, or perhaps there were translation hiccups. It does seem that the paper referred to here agrees with Dr. Fox that it is what is inside the vein that is causing the haemodynamic problems, not changes in the diameter of the vein. I have the personal opinion that chance, genetics, and individual physiology probably have a lot to do with the problems, making them less predictable than we would like, either way. I think vein hemodynamics can also be affected by things outside the vein, such as bone. There again, it is partly the luck of the draw and genes. In other words, it is just as likely to be both in and outside he vein.. CNS research on the deceased, valuable though it is, can miss some cases due to not enough subjects. Maybe Dr. Fox will find narrowed veins too, farther along.

I don't know if is relevant, or whether or not CCSVI jugulars are collapsed when standing, but I would guess a lot of the people did not die standing up. Would that affect their diameter?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

He found narrowings of the vein wall itself in both groups. (MS patients and healthy controls.) But CCSVI is not a disorder of the vein wall, but of the intraluminal or within-the-vein abnormalities. Valves and septums and membranes and clutter. Those were found predominantly in the MS group. It is helpful to know that this was Claude Diaconu's work, and not Dr. Fox's directly. Claude Diaconu understands CCSVI, even if Dr. Fox does not.

Hello 1eye and Cece,
Interesting points on the work of Dr Fox in comparison to Prof Z. I always take Prof Z's writing in published journals far above his TV interviews. I would never give an interview in a foreign language (even after living in France for 3 years) and think Prof Z is very brave to do so. This is one one the reasons I want to keep this thread on the first page of the forum so we all keep reminding ourselves of Z&G's most recent published paper on CCSVI syndrome.
Kind regards,
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

I commented on a draft paper for the editor of Acta Neurologica Scandinavica. The authors (neuros) were stating Prof Zamboni's ideas, but it was clear that they have not studied this paper. I hope all Interventionalists at SIR 2012 will have studied the paper before commenting on CCSVI syndrome.
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