Settings for an Effective Treatment of Multiple Sclerosis

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Settings for an Effective Treatment of Multiple Sclerosis

Postby jencor69 » Fri Jul 10, 2015 5:18 am

WHY ISN'T ANYONE TALKING ABOUT THIS AND IT'S SIGNIFICANCE TO CCSVI??
New research destroys the auto-immune model of Multiple Sclerosis

The Journal of Experimental Medicine said it best in their recent tweet:
“Decades of medical theory which considered the brain as different from other organs of the body and without a lymphatic drainage system were, well...... simply not correct.”

The presence of a lymphatic vascular system:
The University of Helsinki has independently published a paper in the Journal of Experimental Medicine which looks amazingly similar to the University of Virginia's paper on lymph vessels published just two weeks ago. Both universities have found:
A dural lymphatic vascular system that drains brain interstitial fluid and macromolecules.
http://jem.rupress.org/content/early/20 ... 0.abstract

Researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist.
Published on Jun 23, 2015

Louveau said:
“When we started our project, our question was if there are so many immune cells surrounding the brain, how do they traffic there? By addressing this question we found vessels that weren’t supposed to exist. They were very well hidden and we think that is why it took so long to discover them.”
http://www.biosciencetechnology.com/new ... une-system

Creating a myth:
These findings are of crucial importance to many who have been branded with 'Multiple Sclerosis'. The drug treatment of this illness is based on a FALSE premise that no immune cells should be in the brain and if they are there it is because of an autoimmune reaction against the myelin sheath which prevents nerve conduction. Brain and spinal cord lesions are often observed on T2 MRI scans which are blamed for the various pains, tingling, numbness, fatigue, bladder and bowel problems and motor disabilities that such patients experience.

This shibboleth is relentlessly conveyed to the public in spite of serious doubts that even if this was all true, the majority of patient symptoms bear absolutely no correlation to the purported lesions - even in the presence of dozens of such lesions.

- See more at: http://dramir.com/blog/archives/667-The ... IBmFc.dpuf
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby EricDrake » Fri Jul 10, 2015 5:30 am

jencor69 wrote:WHY ISN'T ANYONE TALKING ABOUT THIS AND IT'S SIGNIFICANCE TO CCSVI??
New research destroys the auto-immune model of Multiple Sclerosis

The Journal of Experimental Medicine said it best in their recent tweet:
“Decades of medical theory which considered the brain as different from other organs of the body and without a lymphatic drainage system were, well...... simply not correct.”

The presence of a lymphatic vascular system:
The University of Helsinki has independently published a paper in the Journal of Experimental Medicine which looks amazingly similar to the University of Virginia's paper on lymph vessels published just two weeks ago. Both universities have found:
A dural lymphatic vascular system that drains brain interstitial fluid and macromolecules.
http://jem.rupress.org/content/early/20 ... 0.abstract

Researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist.
Published on Jun 23, 2015

Louveau said:
“When we started our project, our question was if there are so many immune cells surrounding the brain, how do they traffic there? By addressing this question we found vessels that weren’t supposed to exist. They were very well hidden and we think that is why it took so long to discover them.”
http://www.biosciencetechnology.com/new ... une-system

Creating a myth:
These findings are of crucial importance to many who have been branded with 'Multiple Sclerosis'. The drug treatment of this illness is based on a FALSE premise that no immune cells should be in the brain and if they are there it is because of an autoimmune reaction against the myelin sheath which prevents nerve conduction. Brain and spinal cord lesions are often observed on T2 MRI scans which are blamed for the various pains, tingling, numbness, fatigue, bladder and bowel problems and motor disabilities that such patients experience.

This shibboleth is relentlessly conveyed to the public in spite of serious doubts that even if this was all true, the majority of patient symptoms bear absolutely no correlation to the purported lesions - even in the presence of dozens of such lesions.

- See more at: http://dramir.com/blog/archives/667-The ... IBmFc.dpuf


People are actually talking about it in other threads.
I dont understand it why would it mean that it is not an "auto-immune disease". They found that the immune system is connected to the brain/cns, and? As far as I know this autoimmunity means that your immune system attacks your own body they just dont know why and they titled it with auto immunity. The fact that they found a way where it enters still does not change that your immune system is attacking your nerves.

Anyway also ms society pages mentioned the discovery:
http://www.mssociety.org.uk/ms-research ... rch_july15
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby Cece » Fri Jul 10, 2015 6:33 am

There's a dovetailing of the CCSVI theory and the autoimmune theory, in which the poor drainage conditions created by CCSVI require immune system activation to clean up starved neurons, and if the lymph system is not draining well either, it could create a condition in which autoimmunity is triggered. CCSVI theory does not preclude autoimmunity theory, but it provides a possible explanation for why autoimmunity might develop in us instead of someone else. I'm not fond of this theory because it has the rather dooming conclusion that, even if the CCSVI is treated, the autoimmunity triggered by the CCSVI would persist.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby jencor69 » Fri Jul 10, 2015 6:50 am

"I dont understand it why would it mean that it is not an "auto-immune disease"

Autoimmunity in MS is an unproven myth. There is no evidence our immune systems are attacking our nerves. In 2004 Prineas & Barnett proved that the immune cells appeared only AFTER damage occurs in the brain. They are doing what they are supposed to do, clearing up the mess https://dl.dropboxusercontent.com/u/274 ... ion%20.pdf

and Dr Hubbard explains very eloquently what is really going on in the MS immune system in this video.
http://youtu.be/JGfBSLdstQk
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby EricDrake » Fri Jul 10, 2015 7:12 am

jencor69 wrote:"I dont understand it why would it mean that it is not an "auto-immune disease"

Autoimmunity in MS is an unproven myth. There is no evidence our immune systems are attacking our nerves. In 2004 Prineas & Barnett proved that the immune cells appeared only AFTER damage occurs in the brain. They are doing what they are supposed to do, clearing up the mess https://dl.dropboxusercontent.com/u/274 ... ion%20.pdf

and Dr Hubbard explains very eloquently what is really going on in the MS immune system in this video.
http://youtu.be/JGfBSLdstQk


I agree on that MS might not be an autoimmune disease,but I don't agree with that our immune system is not attacking, seriously just think it over, if it would be true then current DMT/DMD which interfere with the immune system would have no effect in patients, but they have, so for rrms this statement makes no sense.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby jencor69 » Fri Jul 10, 2015 7:35 am

EricDrake wrote:
jencor69 wrote:"I dont understand it why would it mean that it is not an "auto-immune disease"

Autoimmunity in MS is an unproven myth. There is no evidence our immune systems are attacking our nerves. In 2004 Prineas & Barnett proved that the immune cells appeared only AFTER damage occurs in the brain. They are doing what they are supposed to do, clearing up the mess https://dl.dropboxusercontent.com/u/274 ... ion%20.pdf

and Dr Hubbard explains very eloquently what is really going on in the MS immune system in this video.
http://youtu.be/JGfBSLdstQk


I agree on that MS might not be an autoimmune disease,but I don't agree with that our immune system is not attacking, seriously just think it over, if it would be true then current DMT/DMD which interfere with the immune system would have no effect in patients, but they have, so for rrms this statement makes no sense.


None of the MS drugs modify the condition - long term natural history studies show that in the long run those taking NO drugs do as well or BETTER than those on the drugs - why do you think these drugs are only available to RRMS patients? The remissions that are the natural course of the disease can be claimed as drug effectiveness! As soon as your disease progresses to SPMS or PPMS, the drugs all of sudden won't be effective. You should seriously think it over. Our neurologists are inflicting side effects on their patients for no meaningful purpose at all (apart from lining their pockets).
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby cheerleader » Fri Jul 10, 2015 7:37 am

Hi Jen--

You are certainly not alone. Have been writing about this extensively, and speaking with the doctors who have discovered our lymphatic system and vessels. Dr. Amir actually took quotes and research I compiled from my blog (unattributed) which is a bit odd.

I have a thread going in the general discussion forum, because I also believe this changes all we thought we knew about MS.
general-discussion-f1/topic26449.html

Maybe you want to check out the three pages we've got going there, as well as links to my blog I'll include below.

We now know the brain is not immune privileged. What does this mean and why is it so HUGE?
In fact, the whole concept of immune privilege of the brain and lack of lymphatic drainage was created 70 years ago and hasn't changed much in ensuing years. This was around the same time EAE was created as the animal model for MS. Why hasn't there been more exploration until recently? I believe one reason is because the old theories have made people very rich.

Let's learn the history:
The theory of immune privilege was invented to explain why foreign tissue grafts placed on brain tissue didn't cause an immediate immune reaction, as similar grafts did in other parts of the body, like the skin. It was believed that antigens in the brain were concealed from the immune system by the blood brain barrier. That's why it was assumed that when immune cells showed up in the brain--if they weren't there fighting an infection or as an inflammatory reaction after a stroke---there could only be one explanation--it was some sort of "auto-immune"and destructive inflammatory reaction.

http://ccsviinms.blogspot.com/2015/06/r ... books.html


The first researcher to publish on the fact that there was a need for t cell entry into the brain was and is Dr. Michal Schwartz. She was told to "throw her research into the trash" by other neuroimmunoligists, because she discovered that immune cells were needed inside the brain to facilitate plasticity and cognition. Her work has shown that it is better to modulate immune cell response, rather than ablate it. It is no coincidence that her student, and a co-author of many papers at the Weizmann Institute, Dr. Jonathan Kipnis, has discovered these vessels.
http://ccsviinms.blogspot.com/2015/06/d ... right.html

And there is also a venous connection to CCSVI--since all of the fluids which are cleansed from the brain--interstitial, CSF, blood and lymph---drain alongside the intracranial veins and eventually into the extracranial veins. And the researchers at the ISNVD are in contact with the researchers behind this (g)lymphatic discovery. It is coming together. :)

So, where does this leave MS research? We now know EAE is not MS, at all. In fact, ablating immune cells may be deleterious to long term gray matter health, cognition and neuroplasticity.

cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby EricDrake » Fri Jul 10, 2015 11:35 am

jencor69 wrote:
EricDrake wrote:
jencor69 wrote:"I dont understand it why would it mean that it is not an "auto-immune disease"

Autoimmunity in MS is an unproven myth. There is no evidence our immune systems are attacking our nerves. In 2004 Prineas & Barnett proved that the immune cells appeared only AFTER damage occurs in the brain. They are doing what they are supposed to do, clearing up the mess https://dl.dropboxusercontent.com/u/274 ... ion%20.pdf

and Dr Hubbard explains very eloquently what is really going on in the MS immune system in this video.
http://youtu.be/JGfBSLdstQk


I agree on that MS might not be an autoimmune disease,but I don't agree with that our immune system is not attacking, seriously just think it over, if it would be true then current DMT/DMD which interfere with the immune system would have no effect in patients, but they have, so for rrms this statement makes no sense.


None of the MS drugs modify the condition - long term natural history studies show that in the long run those taking NO drugs do as well or BETTER than those on the drugs - why do you think these drugs are only available to RRMS patients? The remissions that are the natural course of the disease can be claimed as drug effectiveness! As soon as your disease progresses to SPMS or PPMS, the drugs all of sudden won't be effective. You should seriously think it over. Our neurologists are inflicting side effects on their patients for no meaningful purpose at all (apart from lining their pockets).


Please, look around in the forums of the drugs, I also talked to some people personally who started to take drugs and they could really feel better after taking it, they had much more relapse before taking it and also after 1-2 years of taking them they had no new lesions giving them more time for remission. Please don't tell me that less relapse and lesion during rrms phase is not a good thing and it can't be attrivuted to these drugs. I dont wait much from these drugs I know that they only help during rrms and they are not a cure and I also would like something much safer/effective. Atleast if I can find one that "fits me" then my rrms phase will be better and probably my spms is slightly slower.

I also talked to many people on facebook groups who had CCSVI and for most of them the best thing they could achieve with this a minor symptom relief for a shorter/moderate period of time, some of them even got worse so I dont know what makes it a better choice compared to a DMD.

Anyway founding this lymphatic system is great news because it can help in understanding MS and help to find better and safer treatments or probably even a cure, however I dont think that it will be the CCSVI but I hope that I am wrong because I dont care what it is going to be, I just want them to find a way to treat this disease finally.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby Cece » Fri Jul 10, 2015 12:12 pm

jencor69 wrote:In 2004 Prineas & Barnett proved that the immune cells appeared only AFTER damage occurs in the brain. They are doing what they are supposed to do, clearing up the mess

A very provocative paper, raises a lot of questions about the traditional model. Immune system activation can do damage secondary to an initial event (such as after a stroke) so when an MS lesion forms, then taking a drug that prevents the immune system from inflicting secondary damage might explain the benefits seen from the DMDs, no autoimmunity theory required.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby jencor69 » Fri Jul 10, 2015 12:30 pm

A very provocative paper, raises a lot of questions about the traditional model. Immune system activation can do damage secondary to an initial event (such as after a stroke) so when an MS lesion forms, then taking a drug that prevents the immune system from inflicting secondary damage might explain the benefits seen from the DMDs, no autoimmunity theory required.


The most expensive publicly funded drug trial in history is condemned today as a "fiasco" which has wasted hundreds of millions of NHS cash and raised fresh concerns about the influence of the pharmaceutical industry.

The scheme involved four drugs for multiple sclerosis launched in the 1990s which were hailed as the first treatment to delay progression of the disabling neurological condition that affects 80,000 people in the UK.

It was set up in 2002 after the National Institute for Clinical Excellence (Nice) unexpectedly ruled that the drugs were not cost effective and should not be used on the NHS. To head off opposition from patient groups and the pharmaceutical industry, the Department of Health established the largest NHS "patient access scheme", to provide patients with the drugs, costing an average £8,000 a year, on the understanding that if they turned out to be less effective than expected, the drug companies would reduce the price.

The first report on the outcome was due after two years but was not published until last December, seven years later. It showed that the drugs failed to delay the onset of disability in patients – defined as walking with a stick or using a wheelchair – and may even have hastened it. On that basis, the drug companies would have had to pay the NHS to use them to make them cost effective.

Despite this finding, the price was not reduced and the scientific advisory group monitoring the scheme advised that "further follow up and analyses" were required. It said that disability may yet improve, the disease may have become more aggressive and the measure of disability used may have underestimated benefit. There were 5,583 patients in the scheme at a cost to the NHS of around £50m a year, amounting to £350m over seven years to 2009. The Multiple Sclerosis Society said twice as many patients were using the drugs outside the trial. That implies a total NHS cost of £700m for a treatment that does not work.

In a series of articles in today's British Medical Journal, experts criticise the scheme. James Raftery, professor of health technology assessment at the University of Southampton and an adviser to Nice, said the scientific advisory group included representatives from the four drug companies, two MS groups, and the neurologists treating patients, all of whom had lobbied for the continued use of the drugs on the NHS.

"The independence of this group is questionable," he said. "Monitoring and evaluation of outcomes must be independent. Transparency is essential, involving annual reports, access to data, and rights to publish. Any of these might have helped avoid the current fiasco."

Professor Christopher McCabe, head of health economics at the University of Leeds, writing with colleagues in the BMJ, said: "None of the reasons for delaying the price review withstand critical assessment." Professor McCabe told The Independent: "We should be asking questions about paying for these drugs. In terms of disability avoidance, the evidence is not there."

Alastair Compston, professor of neurology at the University of Cambridge, defended the scheme. He said that despite a disappointing outcome, the scheme had "advanced the situation for people with multiple sclerosis" by improving understanding and care of the disease. Neil Scolding, professor of neurosciences at the University of Bristol, said the proportion of British patients treated with drugs (10-15 per cent) was tiny compared to France and Germany (40-50 per cent). He said the scheme had also led to the appointment of 250 multiple sclerosis nurses.

"[Though] expensive and flawed, if it turns out to have been no better than a clever wooden horse, then the army of MS healthcare specialists it delivered may make it more than worthwhile," he wrote. The MS Society claimed success for the scheme up to 2007 but after publication of the results last December, withdrew its support.

MS: why the drugs don't work

Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results. Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease.

http://www.independent.co.uk/life-style ... 91104.html
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby 1eye » Tue Jul 14, 2015 4:04 pm

To my knowledge the clean-up crew in the so-called immune system is white cells called macrophages, not T-cells. They would be expected after a stroke, or perhaps lesions caused by bleeding and breakdowns in the blood-brain barrier. In fact bleeding is a dangerous situation because of the effect of free iron on living tissue (they also use it to kill weeds).

It is understandable that denizens of this forum could confuse cells, when doctors only weeks ago have for the first time discovered the anatomy by which the cells circulate in the brain.

To me, the expression "everything you know is wrong" carries special meaning.

As far as the British National Health plan goes, the minute any kind of government funding appears, vultures are soon to follow. They will not be easily deterred. You need only look at the debacle over Ontario content being mandated for solar panels. Companies were set up to use Chinese silicon to "manufacture" panels in Ontario. Then some international body ruled that the Ontario rules were unfair to non-Ontario manufacturers (read China). China began dumping panels into this new government-sponsored market. Canada responded by slapping a tariff on the Chinese silicon. Ironically, the aforementioned Ontario panel manufacturers had always used Chinese silicon. Now the dumping is happening through shadow companies in Taiwan, Viet-Nam, etc. to make the silicon less Chinese. And the Ontario "manufacturers" have to raise their prices to cover the tariff!

All that because the laws were set up to provide solar installations with an agreement whereby the grid would buy power from anybody who wanted to install panels, and use the sun to generate it, at higher prices than the grid was selling it for! So stay clear of Chinese entrepreneurs trying to get some free government money!

The National Health is not much different. Drug companies line up and drool.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby jencor69 » Thu Jul 16, 2015 8:00 am

1eye wrote:It is understandable that denizens of this forum could confuse cells, when doctors only weeks ago have for the first time discovered the anatomy by which the cells circulate in the brain.

Sorry but I fail to see your point 1eye. The article confirms the presence of macrophages in the clean-up phase of cell damage in the brain. What is in question is what causes that damage in the first place.
The fact that CCSVI treatment helps to alleviate some but not all symptoms and cranial-dental alignment helps the remaining symptoms proves to me that MS is not one illness. It is a combination of physical, genetic and biological causes. In the article Dr Amir shows the cross-over of symptoms between MS and physical TMJ asymmetry patients.

The similarities are quite profound. We have much to learn about the effects of an asymmetric jaw and spine, Symmetry of the Cranio-dental complex and the skeleton appears to be a key to the proper functioning of our brain, the intake of nutrients, the intake of oxygen and the proper functioning of all the organs of the body.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby 1eye » Thu Jul 16, 2015 11:34 am

People who fail to see my point are neither looking at the top of my head or at my nose.

I was trying to say that T cells have an image problem. Finding out that destroying T cells can actually make you worse is unfortunately also not a surprise.

One problem with people like me who have cognitive problems, is that you can convince us of anything :-). Including the whole song and dance about autoimmunity. We are not our own best caretakers. The "scientific community" only in the last few months figured out that brains have lymph vessels, and still can't tell you what an appendix is for, which seems to indicate they don't know everything either.

I have a lot of confidence in the CCSVI procedure. Discoveries about CSF circulation seem to agree with the notion there is a drainage problem. To this day people are still telling me their other MS patients are doing worse than I am, and people who know me say I have improved. I may still go back for another try. I feel I have started a long journey, which is starting to look like it has some real health at the end of it. Physiotherapy is a large part of it. I went for 3 trike rides in the last 3 days, one for 8 km. Meanwhile, like many my age, my telomeres are shrinking.

I'm not going to tell you or anyone else that CCSVI treatment, or anything else, cures anything. I know I have many problems, no doubt some of them skeletal.

One day I did not have big health issues. It seems like it was a very short time I went from that to confirmed MS. What happened? Nobody knows. At least, nobody I believe, or would give money to.
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Re: Settings for an Effective Treatment of Multiple Sclerosi

Postby frodo » Wed Jul 22, 2015 2:56 pm

Cece wrote:
jencor69 wrote:In 2004 Prineas & Barnett proved that the immune cells appeared only AFTER damage occurs in the brain. They are doing what they are supposed to do, clearing up the mess

A very provocative paper, raises a lot of questions about the traditional model. Immune system activation can do damage secondary to an initial event (such as after a stroke) so when an MS lesion forms, then taking a drug that prevents the immune system from inflicting secondary damage might explain the benefits seen from the DMDs, no autoimmunity theory required.


In fact, I think most researchers nowadays say that MS is "immune mediated", indicating that the immune system is involved, but with an implicit acknowledge that they do not know exactly how. The word autoimmune should not be used.
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