You Tube : MS and CCSVI Research

[TykeMerc]

Ok that's very surprising and I must admit quite alarming.

I've had a fair bit to do with medical scientists and for researchers to doggedly pursue a course of action makes sense, but what doesn't make sense is to ignore the possibility that there are other root causes.

Common sense dictates (admittedly from an engineers perspective) that until you've bottomed out the provable root cause by having a reliable reproducable fix the root cause isn't actually known just suspected.
Keeping an open mind in problem solving is absolutely essential, I would have thought that researchers in any field would know and understand that.

Edit. Just seen your second post...

Not good if the researchers are so totally in bed with the pharma companies that they have no serious benefit in actually finding a cure.

If Zamboni is correct then I'm sure he won't have a hard time finding volunteers and relatively speaking he won't need ludicrous funding to conduct a study. Perhaps the most effective approach would be to start an MS charity with a limited remit to research this specific area of possible cause. Once a clear link is established pushing the mainstream MS charities into this area should be reasonably simple to achieve.

[Board Game Geek]

Ok that's very surprising and I must admit quite alarming.

I've had a fair bit to do with medical scientists and for researchers to doggedly pursue a course of action makes sense, but what doesn't make sense is to ignore the possibility that there are other root causes.

Common sense dictates (admittedly from an engineers perspective) that until you've bottomed out the provable root cause by having a reliable reproducable fix the root cause isn't actually known just suspected.
Keeping an open mind in problem solving is absolutely essential, I would have thought that researchers in any field would know and understand that.

Indeed. It alarms us as well, as we're living with the fekking illness and are fed up. Hence the campaign.

It also makes we wonder if the same repetitive inertia applies to other illnesses as well.

I guarantee you this, if MS does fall and become eradicated, there will be considerable pressure on other researchers to adopt new approaches in researching their chosen diseases.

People will say "look what happened to MS. We demand the people studying Cancer, Aids, etc adopt new approaches too".

I sincerely want MS to be the cause that changes people's perceptions, and what they demand from their researchers.

Edit : Yes, CCSVI groups are forming all over the place. The UK one is aimed a changing perceptions, putting pressure on the charities, getting the government involved.

The North American one in Canada is going one step further and trying to form as a charity for investment and funding. They have already fired a broadside to the American MS Society and said "We don't need them. We are organising our own research and funding, and if they want to join us, they can".

[TykeMerc]

I sincerely want MS to be the cause that changes people's perceptions, and what they demand from their researchers.

Understandable, but the primary desire obviously has to be a cure, the other things are purely incidental benefits that might be exploited.

Cure MS and there will be an awful lot of people with quality of life and a normal lifespan restored.

[Board Game Geek]

I think it was the American MS Society whose recent 2009 General AGM upset a lot of MS Sufferers.

In typical over the top fashion, they hosted a massive fund raiser, complete with marching band and celebrity speakers.

Each table had it's own goodie bag for people, consiting of rubber chickens and tarot cards.

Amid all the revelry, the auditorium hushed, as the token MS sufferers in wheel chairs were brought on to the stage.

Much words of sympathy were said, tears flowed, etc.

Then the crips (as a crip myself, and knowing other crips, we do use this term amongst us, it's a "gang" thing) were quickly wheeled off so the dance troupe could take to the stage.

Then they carried on playing with their freaky rubber chickens and tarot cards.

It was all so inappropriate, and really raised the backs of many sufferers.

[Bagpuss]

Correct me If I'm wrong

The best guess is MS is an autoimmune disease, and we don't know the trigger. We don't have a cure or an effective treatment.

This guy you talk of is hypothesising that it is not an autoimmune disease but caused by a disease of the veins (cause unknown), and that blocked veins and can be fixed by inserting a stent or angioplasty?
Now that is surgery rather than treatment with drugs. The adoption of new Surgical techniques does not require the same level of proof of efficacy that drug research requires, therfore some of today's surgical techniques probably have little benefit, and would not have been accepted were they a drug treatment. But if you are confident of the surgery all you need to do is offer yourself as a guinea pig to someone happy to carry it out.

BTW You don't look like my visual image of you. You are def a geek though, if a piratey one.

[Board Game Geek]

Understandable, but the primary desire obviously has to be a cure, the other things are purely incidental benefits that might be exploited.

Cure MS and there will be an awful lot of people with quality of life and a normal lifespan restored.

Sorry. I didn't make it clear.

I sincerely want a Cure for MS (and the reasons for that are obvious). As a by product, I want the other researchers in other illnesses to look at what the cure for MS has achieved and how it came about by thinking outside of the box, and motivate them accordingly.

[Board Game Geek]

Correct me If I'm wrong

The consensus is MS is an autoimmune disease, but we don't know the trigger.

Correct.

We don't have a cure or an effective treatment.

A cure no. Treatment that sometimes lessens the symptoms or slows the disease, yes.

This guy you talk of is hypothesising that it is not an autoimmune disease but caused by a disease of the veins, and that blocked veins and can be fixed by inserting a stent or angioplasty?

Yes. He came up with the the theory. Then conducted a real trial on patients with Ms over the last 3 years. He went public with the results in Nov 2009.

All the patients had stents in the neck, to correct venous flow. Everyone reported either minor recovery or major recovery. Eg, didn't need a wheelchair any more, or regained the use of a limb or more. Eyesight returned, etc etc.

None were "cured". The lesions on the brain are still there, but crucially, the auto immune system has stopped attacking them, due to their being no more iron in the brain. Depending on the severity of their lesions, some will not be able to "undo" the damage already done. However, they have experienced no more attacks or lesions since. That is very significant.

Now that is surgery rather than treatment with drugs.

Correct. Surgery to correct a venous "wiring" problem. Which as people point out, if you break an arm, or have a hole in the heart, that get's fixed. This is no different.

The adoption of new Surgical techniques does not require the same level of proof of efficacy that drug research requires, therfore some of today's surgical techniques probably have little benefit, and would not have been accepted were they a drug treatment. But if you are confident of the surgery all you need to do is offer yourself as a guinea pig to someone happy to carry it out.

Correct. Which is why 3 places in the world are offering the surgery now, after specialised scans, and people are getting it done and noticing immediate benefits. There is a website where each one speaks of their surgery and how it has helped them. Hundreds of reports on there for the community to read.

BTW You don't look like my visual image of you. You are def a geek though, if a piratey one.

Aye, I'm getting fed up with the patch, and the beard makes it worse. Or is it the other way round, I'm not sure. Going to have a major beard restyle this weekend.

[Bagpuss]

I had a look at the mail article and usual confusing of science seemed to prevail (cause, cure, triiger etc). But it seemed your chap was saying it wasn't an autoimmune response?


Would love to know what the control group had done, as 27% of those patients had the same result (just over half of the ones who had surgery).
As a Medical Statistician I would also like to know if he randomized the patients to treatment or if it were biased in some way. Did the higher responding group have the same disease status, were they a similar age, gender etc. If not we can take these results with a large pinch of salt. He may have operated on the patients most likely to show a response.
To be perfectly honest I would have thought the future would lie with some sort of gene therapy rather than invasive surgery but that's probably a few decades off yet.

[Board Game Geek]

I had a look at the mail article and usual confusing of science seemed to prevail (cause, cure, triiger etc). But it seemed your chap was saying it wasn't an autoimmune response?


Would love to know what the control group had done, as 27% of those patients had the same result (just over half of the ones who had surgery).
As a Medical Statistician I would also like to know if he randomized the patients to treatment or if it were biased in some way. Did the higher responding group have the same disease status, were they a similar age, gender etc. If not we can take these results with a large pinch of salt. He may have operated on the patients most likely to show a response.
To be perfectly honest I would have thought the future would lie with some sort of gene therapy rather than invasive surgery but that's probably a few decades off yet.

Here's the Research PDF and stats, Baggie.

Zamboni is putting forward the suggestion that venous flow problems could be the trigger of the auto-immune response.

He did MRV scans of people who don't have MS, but have neurological diseases, such as Alzheimers, Parkinsons, etc, and found no evidence of stenosis. It was the MS patients who nearly all exhibited stenosis.

Some people are suggesting that the stenois is congenital, and thus as the person ages, the stenosis worsens. Who knows ? That's seperate research and could be years away.

All I know is that people are flying out to Italy or Poland and having angioplasty and many are reporting amazing benefits.

[cojak]

Just one take, and one rehearsal before that.

Flippin' heck (no swearing now! ), I wish I could do that.

At the moment it takes me 3 days to script, create and edit a 15 minute ppt video presentation.

Well done that man...