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The YouTube Cure

Popular demand for an unproved surgical treatment for multiple sclerosis shows the growing power of social media to shape medical practice—for good and ill

By Katie Moisse | January 30, 2011 |

When vascular surgeon Paolo Zamboni reported in December 2009 that inflating a tiny balloon inside twisted veins in the neck provided relief from multiple sclerosis, he created quite a stir.

Read full article at the link above...

ThisIsMA wrote: Read full article at the link above...

Well, they forget to tell that even unproven, it is the most proven treatment to date. All the others medicaments are based in incomplete models that have been proven wrong.

Why don't they complain about the unproven medicines that are besides dangerous for health? (they are known to reduce relapses not to stop nor slow the disease. The manufacturers admit not to have an explanation about how they work)

frodo wrote:

ThisIsMA wrote: Read full article at the link above...

Well, they forget to tell that even unproven, it is the most proven treatment to date. All the others medicaments are based in incomplete models that have been proven wrong.

Why don't they complain about the unproven medicines that are besides dangerous for health? (they are known to reduce relapses not to stop nor slow the disease. The manufacturers admit not to have an explanation about how they work)

I think it's because absolutely no well designed studies of efficacy have been published whatsoever in terms of the "Liberation Treatment", whilst MS drugs undergo vigorous clinical testing.

How do you figure it's the most proven treatment to date?

concerned wrote: whilst MS drugs undergo vigorous clinical testing.

Well, the studies used self-reported data... do you know if any of these studies were properly replicated by outside, unaffiliated entities?

"The YouTube Cure"

That's kinda cute!

The cure has to be working, we've cut the number of people with MS from 500,000 to

Regardless, many people with MS, which affects at least 250,000 people in the U.S.,

That's a dramatic halving! At that rate, by this time next year, problem solved....

As Daniel Simon, an interventional radiologist in Edison, N.J., says of the work: “It wasn’t Bob’s Journal of MS and Autobody Repair; it was the premier journal of vascular surgery.”

Patients taking placebo have often reported substantial improvements, according to Mount Sinai’s Miller.

I looked into this. Regression to the mean. A known phenomenon. Drug studies of pwMS deliberately include patients with the highest degree of lesion activity. I would be excluded from these studies. That high degree of lesion activity is unusual and these patients are expected to experience a reduction in lesions even with no intervention, as they normalize or "regress to the mean." This is not a placebo effect.

In the past year, for instance, hospitals in California, New York, Italy and Poland have offered the Zamboni treatment—at a cost of $10,000 or more because it is not covered by insurance.

In one of the ISET medpage articles, it was also stated that CCSVI treatment was not covered by insurance. Are they just assuming this? Or is that shoe about to drop? It's nervous-making.

One thing in favor of Zamboni’s approach is it has a reasonable scientific rationale, which not all potential therapies touted on the Internet have.

At last, I have found the response I'd like to give next time this is compared to frickin bee stings. "What CCSVI has in its favor is that it has a reasonable scientific rationale, unlike all the other alternative treatments that you just named off in a long condescending string." (Maybe I should switch neurologists after all. Thinking about it.)

Popular demand for an unproved surgical treatment for multiple sclerosis shows the growing power of social media to shape medical practice—for good and ill

Social media is a huge part of the story of how this has unraveled. Go TIMS.

All in all, the article has a negative slant but, hey, it's CCSVI in a major magazine. I subscribe to DISCOVER, maybe they'll do one better.

concerned wrote:
How do you figure it's the most proven treatment to date?

First, because there is a small trial about angioplasty while the other treatments have no studies performed at all about their influence in the course of the disease. The studies of drugs have focused about reducing the gadolinium enhanced lesions, which are known to have no connection with the disease evolution.

Second and more important, because we are speaking about MS patients with venous problems comorbidity. The different clinical trials for drugs have not controlled the vein health of the subjects. We can say that we don't know if they are useful in these patients, and they present harmful secondary effects.

It takes lots of effort to write articles for the media and most of them will get ignored but please do it. If you give an interview prepare a written piece in advance and give it to the interviewer at the end of the interview.
My reflection from across the pond is that North American posters leave all publicity to Cheer and her team, why ?
Its hard with lots of rejection but even my short letter in next month's Multiple Sclerosis Journal is worth it (after 5 rejections from different journals).

MarkW

MarkW, congrats on getting your letter published -- can you share it with us?

I donated to cheer's CCSVI Alliance specifically to help support their mission of the dissemination of accurate information, and I urge others to donate, too. If I could do more than this, I would.

concerned wrote:

frodo wrote:

ThisIsMA wrote: Read full article at the link above...

Well, they forget to tell that even unproven, it is the most proven treatment to date. All the others medicaments are based in incomplete models that have been proven wrong.

Why don't they complain about the unproven medicines that are besides dangerous for health? (they are known to reduce relapses not to stop nor slow the disease. The manufacturers admit not to have an explanation about how they work)

I think it's because absolutely no well designed studies of efficacy have been published whatsoever in terms of the "Liberation Treatment", whilst MS drugs undergo vigorous clinical testing.

How do you figure it's the most proven treatment to date?

Because people say so. No proof needed.

Hello HappyPoet,
My letter to Multiple Sclerosis Journal will probably be available online in March and on paper in April, so I should not circulate it til then.
In the meantime I hope the Daily Telegraph will print a 6 month update on me in the coming weeks.
I realise that writing articles is hard but I really encourage it. We need to increase our profile as patients.

MarkW

scorpion wrote:

concerned wrote:

frodo wrote:
Well, they forget to tell that even unproven, it is the most proven treatment to date. All the others medicaments are based in incomplete models that have been proven wrong.

Why don't they complain about the unproven medicines that are besides dangerous for health? (they are known to reduce relapses not to stop nor slow the disease. The manufacturers admit not to have an explanation about how they work)

I think it's because absolutely no well designed studies of efficacy have been published whatsoever in terms of the "Liberation Treatment", whilst MS drugs undergo vigorous clinical testing.

How do you figure it's the most proven treatment to date?

Because people say so. No proof needed.

Your emoticons are getting more and more anti-social.

The article from the Medical Director of the National Multiple Sclerosis Society of Australia from 2006:
.... there are two peaks on the age of onset graph at 25-30 and 40-45. This is presumably due to a small number in the intermediate age group 35-40. Since this statistic has not previously been reported, it may simply reflect some non-random feature in the case selection process.

http://newsgroups.derkeiler.com/Archive ... 01256.html

I have seen the observation that there are two peaks in the age of onset graph before; there must be more evidence because I have seen it! The explanation given here This is presumably due to a ... etc is utterly nonsense. There actually is a double peak.

Why? How is this double peak explained? Young people who get MS have serious stenoses and get MS onset already by 25-30 years of age. Others who have stenoses but less severe do have a low glucose condition of their brain but not enough to suffer from MS yet. At mid age (around 40) the insulin resistance develops in about 8% of the general population where those people who already had a fairly weak glucose condition (due to stenoses in the neck but no MS ref: findings Zivadinov etc.) will then detoriate quickly further until MS shows up.

The explanation is as simple as it is beautiful and it confirms the picture that MS is the result of a low-glucose condition of the brain. It also confirms the picture found by Zivadinon and others that stenoses are not confined to MS only. I believe there is no way around this. The double peak is not fake, it is not invented, it is real and explained by the ccsvi - glucose/insulin concept.

For further info: http://www.thisisms.com/ftopict-15323.html

concerned wrote:Your emoticons are getting more and more anti-social.

erinc14 wrote:

concerned wrote:Your emoticons are getting more and more anti-social.

let the facts speak!