Reply to: You Tube : MS and CCSVI Research

[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...

[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.

[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]

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.

[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.

[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]

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.

[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]

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]

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]

As to why the MS Charities are not being very supportive.

1. Many MS Charities receive the majority of their funding from Pharmas.
2. Many MS Charities recommend the Pharma drugs.

Simple conflict of interests.

I spoke to my own MS Charity and asked if they were going to conduct research. They replied, "No, nothing is planned, however we have a great new drug pipeline up to 2015 of new drugs on their way !"

That told me all I needed to know, to be honest.

The MS Charities would lose considerable monies, and the Pharmas themselves would be financially crippled by a cure, especially one that is potentially surgical, and not drug-related.

Let me put this in perspective.

Biogen make £163 million a year from their new MS Drug. If MS can be halted or cured by a routine operation, are they going to be dancing in the streets ?

For some Pharmas, MS drugs account for 50% of their overall revenue.

For some strange reason, Pharmas who typically enjoy good PR by donating to Charities which advocate their drugs, to set up new drug pipe lines and help patients are remaining positively quiet about funding research in to CCSVI and Dr Zamboni's findings.

The only winners if he is right are :

1. MS Patients
2. Governments like ours who pay Billions on MS Drugs to the Pharmas.

Part of our campaign is at government level, advocating how much money can be saved. We intend this to be a political hot potato, and we have had several MP's get the message. I can't say any more than that.

Another loser could be those who have significant shares in Pharmas which derive most of their profits from MS Drugs, if this pans out. So keep an eye on your shares and CCSVI research, ladies and gents.

[Board Game Geek]

Hmm, that's befuddling to say the least. Surely in researching a cure understanding the (or even a) cause is important. I admit that I come at problem solving from an engineers mindset, but it's logical to try and understand the causes in order to resolve a problem.

I'm completely confused as to why the MS charities would reject serious investigation into even a remotely possible cause of the symptoms let alone the disease.

I know 3 people with MS (fortunately all have relatively mild symptoms) and I'm sure anything that can offer any hope would be welcomed by them and their families.

Yes, both you, myself, and probably a great of us on this board, approach problems in logical ways, and then are adept at trying new approaches using lateral thinking as well.

It's my experience that the medical community is not like that.

Take MS for example.

For those that hate walls of text, you can skip here.

For those interested in why MS Research is stuck in the Dark Ages, please continue.

*************
Let's try to understand how the vascular connection to MS was dismissed, and why. It's all about EAE (experimental autoimmune encephalomyelitis) and drugs-


"In the early 1930s, Thomas Rivers and colleagues provided the first evidence that immune cells can attack the brain. Their simple experiments established what is now the most well-studied model of autoimmunity—the experimental autoimmune encephalomyelitis (EAE) model of multiple sclerosis.

Studies had shown that injection of foreign brain tissues into the brains of rabbits could cause paralysis (2).

Intrigued, Rivers—then a virologist at The Rockefeller Institute—set out to duplicate these studies in monkeys.

Rivers and his colleagues injected Rhesus macaques with normal brain extracts from rabbits and showed that most of the monkeys developed acute CNS disease with immune cell infiltration and demyelinating lesions. No infectious agent could be cultured from the animals, putting to rest suspicions of an infectious etiology.

Rivers' group also noted that the disease-inducing capacity of the brain extracts paralleled their myelin content, providing the first hint that myelin was involved in disease induction.

Thus, the experimental allergic (now “autoimmune”) encephalomyelitis (EAE) model was born. The group published these observations in three articles in the Journal of Experimental Medicine (3–5)."
+++++++++++++++++++++++++++++++++++++++++

EAE continues to be the medical model neurologists and immunologists study today, even though this model for MS is deeply flawed. Researchers continue to give mice EAE by injecting them with antigen, and then try to "cure" them with a variety of immune blocking or modulating medicines.
++++++++++++++++++++++++++++++++++++++++++

Here's a paper from 2005
http://www.neuroimmunol.org/papers/16153891.pdf

"Experimental autoimmune encephalomyelitis (EAE) is a useful model for aiding the development of new treatments for MS. All therapies approved for MS ameliorate EAE.

Two approved medications, glatiramer acetate and Natalizumab, were developed directly from studies in EAE. Several trials are ongoing in MS after success in EAE, including altered peptide ligands of myelin, DNA vaccines and statins.

However, EAE has failed to predict the outcome of certai n approaches. The reasons underlying such failures are discussed here."

Many scientists interested in developing new therapies for MS criticize the EAE model for its poor record of predicting outcomes in the clinic, especially for those instances when promising therapies indicate that they are beneficial in models of EAE, yet then fail in subsequent clinical trials.

Nevertheless, the EAE models are rapid, and can quickly give indications of whether a particular mechanism of action of a specific drug has merit when taken into an in vivo model that recapitulates many aspects of the human disease, MS"

+++++++++++++++++++++++++++++++++++++

So, the reason we still use the EAE model for MS is because it is a RAPID proof of DRUGS? Because these drugs can cure mice of EAE????

MS researchers continue to use this disease model, to the exclusion of other research, even in light of the fact that these treatments appear to cure mice of EAE...but FAIL IN CLINICAL TRIALS OF HUMANS WITH MS.

Insanity is repeating the same actions over and over again and expecting different results as Threaded quotes from another.

We have had seventy five years of EAE research, and we are not closer to understanding MS.

Perhaps we need to find a new model?
+++++++++++

And that is where this new research is turning the world of MS on it's head.

In nearly 500 test patients with MS, everyone of them showed in MRI scans of their necks of thin, crumpled veins that could not get the blood out of the brain properly, leaving iron to deposit. Iron is very toxic to the brain in such quantities.

Dr Zamboni put forward that Auto-Immunue Disease in and of itself is not the trigger for MS.

He believes the trigger is the hampered venous flow from the brain, which leaves iron behind, and THEN the Immunue System goes on the offensive to attack the foreign objects.

Patients that have had stents via angioplasty are reporting considerable benefits, such as loss of symptoms, etc.

He's on to something new here.

In 1863, a doctor who analysed the brain slices of post-mortem MS patients noticed lesions on the brain. Each one was around a small red dot, which he believed was iron deposits, and caused by incorrect venous flow.

That research was forgotten about, until unearthed recently.

[TykeMerc]

That's exactly what they are saying, and why the MS community worldwide is so up in arms.

Hmm, that's befuddling to say the least. Surely in researching a cure understanding the (or even a) cause is important. I admit that I come at problem solving from an engineers mindset, but it's logical to try and understand the causes in order to resolve a problem.

I'm completely confused as to why the MS charities would reject serious investigation into even a remotely possible cause of the symptoms let alone the disease.

I know 3 people with MS (fortunately all have relatively mild symptoms) and I'm sure anything that can offer any hope would be welcomed by them and their families.

[Board Game Geek]

Interesting video.

Do I take it that some of the MS research charities are completely ignoring a possible avenue of simple investigation that could lead to a cure?

Judging from the very rapid spot of Googling it's not like investigation of this possible cause would preclude investigation into other causes.

That's exactly what they are saying, and why the MS community worldwide is so up in arms.

[Drewster]

Well, you have educated at least one person .
I just wish you had warned me.......

I agree on both counts.......

Well done.........

and you are one ugly flipper.... but you knew that.... RIGHT??