This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,

in the discussion, the new Zamboni paper says:

Another influential factor of the favorable outcome of our RR group could be the continuing immunomodulating treatment, which is well known to be capable of significantly reducing relapse rates as well as MRI-detectable Gad+ lesions. It does, however, appear that endovascular treatment of concomitant CCSVI may have an additional benefit on lesions activity.

I think that's a really clever move and should be considered by everyone who promotes CCSVI and it's treatment. "Selling" it as ADDITIONAL rather than alternative treatment is something even neuros and drug companies can feel comfortable with. (If a trial is set up with only MSers getting CCSVI treatment WHILE taking CRABs, it could even make sense for drug companies to fund it - nevertheless showing the effects of the vascular treatment alone to those who want to read it like that). It could lead to a future where one can choose to have drugs, CCSVI treatment or both (or still nothing of course), all paid by insurance. Which would be just fine for everybody here, I guess.

Although I would be rolling in money if I could bet on which of the four ways people in this forum choose.

I agree Cah. Like politicians, neurologists are a necessary part of the medical system and their skillsets are necessary because MS definitely has a specific immune component. The immune trigger is at issue here.

The endovascular treatment (ballooning/stenting) is designed to restore normal blood flow and drainage, which in itself is a good thing whether or not one is on immunomodulating drugs. Poor oxygenation and blood circulatiion in any organ cannot be good for it's long term health.

In this CCSVI intervention context once a better drainage scenario is established and blood perfusion due to reflux is prevented, the "MS" type immune reactive cascade will diminish and eventually fade away due to lack of stimulation.

This is because the populations of CNS-reactive T-lymphocytes will diminish only with time as they die off probably over several months. Until then they will still be able to cross the Blood Brain barrier and attack the CNS via their antegren binding sites in the capillaries of CNS. This is the principle by which Tysabri operates in limiting inflammation by blocking the binding sites and therefore their movement across the BBB.

Therefore it is probably a good idea to continue immune modulating drug therapy for a good while after CCSVI intervention in order to "normalise" the immune response. If no further re-activating events occur then MS relapses should not reoccur.

Yeah, at least this could be some sort of "official" statement.

BUT: It's just a "The end justifies the means"-thing to say that it should be publicly discussed or seen as an additional treatment, not an alternative. It could be just necessary to push it and not being hindered by the pharma.

I'll try to give an example:

Your company sells, let's say, cookie crumbles as topping for ice cream. You've got one major competitor, selling vanilla sauce. If you say "Ice cream tastes better with our cookies than with this vanilla sauce", then your competitor just has to tell it the other way round. The one with more money to spend on the media wins. But if you say "Ice cream tastes better with vanilla sauce AND our cookies", your competitor will not only have difficulties making a contrary statement, there's also no need for it.

That's why I made this thread.

(I know this is much more serious than selling sweets, but the common thing is that from a laypersons view, the correctness of medical statements is as assessable as taste.)

MY PERSONAL VIEW differs a little bit though, and I want to clarify this.

Personally, I think the CRABs are bullshit, with the only effect of earnings for the pharma industry and the side effects of, well, side effects for the patients. (Tysabri maybe has some little effect but really nobody can be satisfied with that.)

Personally, I think it seems that failure began back in 1947 when the first MS society was founded by a woman who's brother had MS. Her call for help was answered by 20 neurologists - ONLY neurologists.

Personally, I think at least the possitive anectdotal reports of the few who had CCSVI treatment already outnumber (qualitatively and quantitatively) those of thousands being on the drugs.

Personally, I think that BY ITS NATURE the pharma industry cannot be interested in a cure. It just would be contrary to their very reason of existence - making money.

Personally, I think that the findings in the CCSVI paradigm and its treatment are so overwhemingly promising that everything that will promote it is just fine.

Really wanted to clarify this.

Personally, I think that the findings in the CCSVI paradigm and its treatment are so overwhemingly promising that everything that will promote it is just fine.

I concur, cah.