This Is MS Multiple Sclerosis Knowledge & Support Community

A few days ago, I posted:

In a recent paper in Phlebology, Prof Zamboni discusses the CCSVI syndrome. This may sound like trivial detail to some but for me it is an important step in defining acceptable therapies to be used on the syndrome.

PMID: 21106999
Phlebology. 2010;25(6):269-79.
The chronic cerebrospinal venous insufficiency syndrome.
Zamboni P, Galeotti R.

I was amazed that the CCSVI naysayers believe that the causes of a syndrome must be defined before the syndrome may be treated. The pharmaceutical and medical industries treat symptoms to the tune of billions of dollars/euro/pounds each year. The easiest example for non healthcare professionals to consider is pain. Pain killlers are used and abused for diseases in which the cause is not defined. A symptom is treated.

It is important for pwMS considering de-stenosis to understand they are simply removing a symptom of restricted veins, not treating their MS or being liberated. On the other side, it is completely misleading for MS neuros to demand extensive trials for CCSVI therapy before pwMS are allowed therapy for CCSVI syndrome. They are breaching medical custom and practice in place for many years.

History on: www.thisisms.com/ftopict-14852.html

Moderators please note that if my threads are attacked by naysayers this is not a reason for locking them. A major role of this forum is to educate pwMS, not to shield them from naysayers.

MarkW

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To a large extent the "autoimmune" element in M.S. is also a theory, it has never been proven and to date it cannot be cured, yet we, society, are spending billions of dollars on this "theory". To my simple mind, it seems that Zamboni's "theory" (which is supported by thousands of anecdotal reports of benefit) should definately be given a chance to help in fighting this disease. As Zamboni himself says, it is not a cure, but a possible symptom, so why not treat it ?

There is a theory that CCSVI causes MS.

There is also the syndrome of CCSVI, which can be diagnosed separately from MS.

(Someone help me out: what is the exact difference between a syndrome and a disease again?)

On the other side, it is completely misleading for MS neuros to demand extensive trials for CCSVI therapy before pwMS are allowed therapy for CCSVI syndrome. They are breaching medical custom and practice in place for many years.

This is strongly put and I believe you are right.

Cece I rescued this from the locked thread on this topic.

I might be pessimistic but I think calling CCSVI an entity, a syndrome, or whatever will not help much now. Politics might be a part of the puzzle now, not just medicine.


Mark W wrote

It is important to understand what Prof Zamboni has done by calling CCSVI a syndrome. He has removed the need to identify the underlying cause(s). I hope the definition below helps.
For me, treating the CCSVI syndrome with Balloon Venoplasty before understanding the causes of CCSVI is essential for pwMS. Otherwise we will be waiting for years, maybe decades before therapy is offered to most pwMS.

MarkW

Extract from:
http://www.wikidoc.org/index.php/Syndrome

In medicine and psychology, the term syndrome refers to the association of several clinically recognizable features, signs (discovered by a physician), symptoms (reported by the patient), phenomena or characteristics which often occur together, so that the presence of one feature alerts the physician to the presence of the others. In recent decades the term has been used outside of medicine to refer to a combination of phenomena seen in association.

In technical medical language, a "syndrome" refers only to the set of detectable characteristics. A specific disease, condition, or disorder may or may not be identified as the underlying cause. Confusingly, even once a physical cause has been identified, the word "syndrome" is sometimes kept in the name of the disease. Subjective medical conditions are not supported by evidence of an underlying physical cause.

Moderators please note that if my threads are attacked by naysayers this is not a reason for locking them.

actually it is, per the rule about not turning off readers by arguing ad nauseum.

A major role of this forum is to educate pwMS

true. and oft repeated hostilities can go on in private.

Rox has re-posted a definition of syndromes. From the same source I add:
"Medical usage sometimes distinguishes a disease, which has a known specific cause or causes (called its etiology), from a syndrome, which is a collection of signs or symptoms that occur together."

A basic summary:
Syndrome is a collection of signs or symptoms that occur together.
Disease has a known specific cause or causes (called its etiology).

In my veiw it should be easier for vascular specialists and open minded neuros to offer therapies for a syndrome instead of treating a disease. It may sound like splitting hairs but I see a route emerging through the fog. This could be much faster than waiting for trials to be undertaken.

MarkW