Apology needed from Cheerleader and Cece

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
vesta
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Re: Apology needed from Cheerleader and Cece

Post by vesta »

Greetings:

I have great respect for the contribution both Cheerleader and Cece have made informing us about the CCSVI work and theory and the entire issue of blood circulation through the brain in MS pathology. Had I known this years ago, I wouldn't need a cane today. We don't need censorship, we need experience and information. It is precisely their lack which led to so many misfortunes and I hold those in the Neurology profession largely responsible for that. The FDA forced the Hubbard Foundation to close their CCSVI data base for no good reason that I can see. If people could see the various outcomes, they could make an informed decision. As for the recent study, Dr Traboulsee is known to oppose the CCSVI idea. According to Dr. Sclafani, the balloon to expand the vein was too small, and all MS cases (RR SP PP) were treated the same even though they are very different. In my opinion those with skeletal obstructions (bone, muscle, artery) shouldn't have their veins ballooned.

As for centenarian100's data, she (?) has a chosen a study of no more than 2 years and all that has been studied is if the drug suppresses the immune response, not MS. Dr. George Eber's long term studies have revealed that these drugs don't work to prevent disability which in his opinion should be the criteria of treatment "success". He believes people are being misled by his own profession (Neurology), and after his study came out, he was totally shocked that the study was ignored. So much for respect for science.

So, bravo Cheerleader and Cece, keep up the good work and thank you.

Regards, Vesta

"
On March 21, 2013 it was announced that Dr. Ebers had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis. This freed him to give a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency. ...

His heresy was thus twofold.

1.The study of 1,000 patients over a 30 year period revealed that relapses are unrelated to long term outcome.

2.His 25 year study of Disease Modifying Drugs revealed they don’t stop descent into disability."
Previously published on my site MSCureEnigmas.net

http://www.mscureenigmas.net
centenarian100
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Re: Apology needed from Cheerleader and Cece

Post by centenarian100 »

vesta wrote:Had I known this years ago, I wouldn't need a cane today.
How do you know? Perhaps you would be no better off.
According to Dr. Sclafani, the balloon to expand the vein was too small and all MS cases (RR SP PP) were treated the same even though they are very different
Someone is certainly welcome to attempt a different type of clinical trial using a different procedure or with different patient selection. Technical factors do matter. If subgroup analysis revealed that the procedure was effective in one of the MS subtypes, we would hear about it.
As for centenarian100's data, she (?) has a chosen a study of no more than 2 years and all that has been studied is if the drug suppresses the immune response, not MS. Dr. George Eber's long term studies have revealed that these drugs don't work to prevent disability which in his opinion should be the criteria of treatment "success". He believes people are being misled by his own profession (Neurology), and after his study came out, he was totally shocked that the study was ignored. So much for respect for science.
Ebers is correct in that lesion burden and relapse rates correlate poorly with long term disability. yet, there is some good evidence that disease modifying therapies do have a long term effect on disability

For instance, in the natalizumab (tysabri) extension studies, the placebo group fell behind on disability measures and never caught up when they were measured at 5 years

http://multiple-sclerosis-research.blog ... study.html

It's not really practical to do long term studies because you cannot retain patients in the study, and once the drug is proven to be effective, there is no longer clinical equipoise, so it is unethical to give placebo (at least in countries where treatments are readily available)

-C
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cheerleader
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Re: Apology needed from Cheerleader and Cece

Post by cheerleader »

I'm glad Cece was nice and tactful to Bromley, she is a much better human than I am! Bromley was always condescending and nasty to me on this forum. F him.

I did this all for my incredible husband, Jeff Beal, and I shared info here with friends.. Jeff had actual jugular stenosis, which was documented and repaired. His cerebral perfusion doubled after treatment. All of this has been documented at Stanford.

He has had a reversal of gray matter atrophy and no new lesions and a shrinking of original lesions--his brain has shown OBJECTIVE HEALING on MRI since his venoplasty. He can still jog, downhill ski, and he is conducting orchestras around the world, winning awards, working on incredible projects, all ten years after an MS diagnosis.

We went public and shared info on here--we didn't hide behind some handle and throw accusations. I created the Endothelial Health Program and shared it, for free, online. I hear from people all over the globe who have been helped by dealing with the things they can change in their lifestyle. Nutrition, UV rays, exercise, and a multiplicity of things now have even more peer reviewed science behind them. And the venous research continues. I've met a dozen people from this forum in person. I will have lifelong friendships from this site. But my life is no longer on forums. If anyone cares to read my take on the UBC trial, as well as vascular MS research, it's all here: http://ccsviinms.blogspot.com

Truly, living well is our best revenge.
Good luck to all who battle MS, I'm sorry for your struggles, but I no longer have anything to prove.
And nothing to apologize for,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Apology needed from Cheerleader and Cece

Post by jimmylegs »

cheer :D glad all is going well
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
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Re: Apology needed from Cheerleader and Cece

Post by Rogan »

Thank you Cece, Cheerleader.

For someone who doesn't have MS but thought they would get it your advice and information has been invaluable.

The auto-immune concept for MS sucks for someone to try to think about.
Every time I would sneeze or have allergies I would think I was getting MS.

Blood flow to the brain is something I can affect.

I can eat better.
I can exercise more.

Thanks for changing my life.

I too keep my fingers crossed that everyone recovers and lives long healthy lives.

I believe we all share that hope here.

Thanks again...

Rogan
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Re: Apology needed from Cheerleader and Cece

Post by 1eye »

I will accept any remedy for MS that will give the same results to all the so-called phenotypes. They are merely a way of separating out and ignoring those who have had a more severe course from the rest. It is very convenient to only have to treat the less afflicted. The inconvenient truth is we don't know what MS is, in any form.

When I was diagnosed a nurse gave me the standard lie about how it'll be cured in 5 years. That was 1997.

Unfortunately I'd been hearing the same lie about Cancer since about 1967, thirty years before my diagnosis. I've lost a lot of people to Cancer (and some to MS) since then. I would have a CCSVI procedure tomorrow if I could afford it. I had one in 2010. It worked.

Many people familiar with MS have told me I'm doing extremely well in comparison to most of their other MS patients. A lot of the people they are comparing me to are my friends. I get the same story from my siblings and other people I don't often see. I believe my MS has not progressed since 2010. I have film of myself being interviewed just before my procedure. I had had a heart attack (courtesy of mitoxantrone), but my very visible MS symptoms were not from the heart attack. I was covered in bruises from frequent falls. I could hardly talk.

It's unfortunate that the CCSVI police will persist, but as someone said, it will take the passing of a generation of doctors, and their poor patients, to put CCSVI where it belongs. I haven't got time to waste listening to their drivel. Did the BC neurology mafia accept Dr. Sclafani's offer of help? They must have been doing the procedure right, right? Of course they did. No biases there. Skepticism goes two ways.

Cece and Cheerleader owe nobody any apologies. Keep up the hope. Hope works. Grants from the MS society are suspect from the word go.

My neuroplasticity glasses are in an advanced state of development. Electronics and software can be fun. I guess I'll have to film myself for youtube soon. Meantime I'll post a picture of myself on Halloween.

Image
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
vesta
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Re: Apology needed from Cheerleader and Cece

Post by vesta »

centenarian100 wrote:
vesta wrote:Had I known this years ago, I wouldn't need a cane today.
How do you know? Perhaps you would be no better off.
According to Dr. Sclafani, the balloon to expand the vein was too small and all MS cases (RR SP PP) were treated the same even though they are very different
Someone is certainly welcome to attempt a different type of clinical trial using a different procedure or with different patient selection. Technical factors do matter. If subgroup analysis revealed that the procedure was effective in one of the MS subtypes, we would hear about it.
As for centenarian100's data, she (?) has a chosen a study of no more than 2 years and all that has been studied is if the drug suppresses the immune response, not MS. Dr. George Eber's long term studies have revealed that these drugs don't work to prevent disability which in his opinion should be the criteria of treatment "success". He believes people are being misled by his own profession (Neurology), and after his study came out, he was totally shocked that the study was ignored. So much for respect for science.
Ebers is correct in that lesion burden and relapse rates correlate poorly with long term disability. yet, there is some good evidence that disease modifying therapies do have a long term effect on disability

For instance, in the natalizumab (tysabri) extension studies, the placebo group fell behind on disability measures and never caught up when they were measured at 5 years

http://multiple-sclerosis-research.blog ... study.html

It's not really practical to do long term studies because you cannot retain patients in the study, and once the drug is proven to be effective, there is no longer clinical equipoise, so it is unethical to give placebo (at least in countries where treatments are readily available)

-C
After I wrote “Had I known this (CCSVI theory) years ago I wouldn’t need a cane today.”
Centenarian100 wrote “How do you know? Perhaps you would be no better off.”

My response? “I remember when I began to limp in 1993 I was VERY upset and crying. It appalls me to think a simple back massage or TENS treatment would have stopped the blood reflux to put an end to the neurological symptoms. Ever since summer 2010 when I read about “Liberation Therapy” I’ve reacted to an upset which inevitably leads to neurological symptoms by getting the fluids to flow. That puts an end to the neurological symptoms.

ElliotB asked what I do stop an attack. I replied I ask for a brief back/shoulder massage or do a TENS acupressure treatment on myself. I would revise this response by saying that if one has a serious skeletal obstruction of the internal jugular vein, for instance, the TENS acupressure treatment or massage WONT WORK to open the stenoses. I explained what I do personally to stop an attack, but my solution may not work for others. A vein obstructed by a bone spur won’t open with these treatments.

I don’t believe I have such an obstruction. Dr. Owiesy’s idea that the autonomous nervous system triggers a spasm in the draining vein thereby impeding blood flow corresponds completely to my experience.

I will direct your attention to donnchadh who was posting on the CCVBP thread. An accident caused a bone to obstruct his IJV. He underwent angioplasty for CCSVI which didn’t work. He found a neurosurgeon who shaved down the bone spur, thus freeing the vein. Another venoplasty failed to open the blood flow through the vein because tissue had built up to plug it. Donnchadh was left with a 10 cm plug in the vein which was ruining his life, and apparently a section of new vein can’t be spliced onto the old.

Sometimes it is the cerebro-spinal fluid obstruction which injures the CNS. In fact I believe most PPMS cases fall into this category and once the MS begins to Progress (SPMS) poor CSF flow or direct pressure on the spine injures the axons. Why? As the nervous system progressively degenerates the body structure loses its integrity putting pressure on the spinal cord/CSF fluid causing even more damage in what I call a “positive feedback loop”.

As examples I will direct your attention to Robni who suffered injury “heading the ball” as a boy playing soccer in the Netherlands. Uprightdoc (tragically deceased in 2016) was following Robni’s case under CCSVI CCVBP thread. Another case – Dania whose spine was injured as a young woman in a riding accident. She underwent angioplasty for CCSVI only to see her IJV’s shrivel and die. The vein remained blocked because in fact it was the skeleton causing the stenosis.

I believe one should insist on a FONAR upright MRI to see the condition of the spine and CSF/blood. A neurologist who orders a simple spinal MRI is not doing his job because obstructions are not usually visible in a recumbent position. IF there is an obstruction, specialists like Chiropractors should be called in to see if the disorder can be corrected without surgery. In any case, angioplasty would be a bad idea.

AT PRESENT MS IS BEING TREATED AS THOUGH EVERYONE HAS A SKELETAL OBSTRUCTION TO THE FREE FLOW OF THE CNS FLUIDS AND THERE IS NO OTHER SOLUTION THAN DMD'S TO TREAT THE IMMUNE SYSTEM REACTION.

HOWEVER, if no such obstruction exists one should consider solutions to the CCSVI problem. Dr. Owiesy’s idea that a spasm in the vein impedes blood flow suggests a simple massage to release the spasm or TENS acupressure or various simple solutions. His administration of medication in the area surrounding the vein may provide a more permanent solution.

Angioplasty is another solution which worked very well for the lucky Stanford MS patients Jeff Beal and Mark Miller (with stents). Maybe others as well. Unfortunately the obstacles to research mounted by the Neurology/Big Pharma lobby have retarded development of the procedure as well as stents and vein splicing techniques? The FDA even forbade the Hubbard Foundation to keeo a CCSVI registry which could have provided much needed information allowing MS patients to make an informed decision.

It’s time for these vested interests to just get out of the way.

Centenarian100 suggests (on another thread) that Dr. Zamboni has a vested interest in promoting his idea with the additional hope of financial gain. I will point out that Dr. Zamboni is a European University Doctor. Values differ. Doctors in his milieu find financial motives in medical science to be unprofessional and vulgar.

In years1987 and 2000 WHO (World Health Organization) did a comparative study of world health care systems. France came in Number One, the US ranked at 37. The US ranked No 1 in technology, but other criteria – infant mortality, longevity etc they ranked at the bottom of the class for “developed” countries. At the time a French Doctor wrote that French medicine aspired to “humanist” values. (I can’t remember his exact words, but it was an obvious jab at the USA system.) WHO stopped ranking health care thereafter, presumably under pressure from the USA which had ranked so poorly.

Certainly Dr. Zamboni hopes to be recognized for his insight, as well he should. As motives go, that is a noble one not to be sneered at.

And any Neurologist who takes a kickback from a drug company to prescribe their medication is in my opinion contemptible.
I am suggesting that a massage which relieves a vein spasm may stop an RRMS attack. Is that so outrageous? If it doesn’t work, no harm done, unlike other potential solutions such as steroids. (One problem, MS is a high status disease because of the specialty – Neurology – and all the fancy equipment used to diagnose it and the high priced drugs. The disease category might be demoted if the best therapist is a Masseur.)

It may be that various remedies which seem to help MSers such as LDN do in fact regulate the autonomic nervous system to prevent the spasms. Why not? A field for future study?

In the meantime MSers need to take care of themselves. For starters I would insist on a FONAR upright MRI to ascertain the condition of the spine and spinal fluid flow and have a Chiropractor look at it. I would (do) treat myself with a TENS acupressure daily and at first signs of an attack. I get regular massages, Osteopathic treatment or Acupuncture treatments. Follow a individualized Diet, Supplements.

In conclusion, if a skeletal obstruction prevents free flow of blood or CSF fluids, DMDs may be the only solution. I don't know if researchers took into account damage done by back jets of blood, CSF fluid into the CNS when they developed their drugs. That would seem an obvious consideration. To maintain a healthy CNS which is periodically damaged by setbacks (yes, during sleep for instance I have the impression stagnant blood flow injures brain tissue) I use optimal nutrition, suppléments and raw vegetable juice.

Best regards, Vesta
Last edited by vesta on Sat Mar 18, 2017 2:59 am, edited 1 time in total.
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MrSuccess
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Re: Apology needed from Cheerleader and Cece

Post by MrSuccess »

what happened to the Upright doctor ?

I really liked his posts .... and think he was on to something important.

MrSuccess
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Re: Apology needed from Cheerleader and Cece

Post by Cece »

Centenarian mentioned subgroup analysis! We need a subgroup analysis by percentage of blood flow improvement in the trabalousee study. The one that Dr sclafani mentioned went from 93% or so to 80%. The data can be examined comparing those with small flow improvements like that to those with larger flow improvement s. There had to be some with larger flow improvements? The sham group went on to get treated as well so that is a lot of data if there's anything in there to find.
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Re: Apology needed from Cheerleader and Cece

Post by vesta »

MrSuccess wrote:what happened to the Upright doctor ?

I really liked his posts .... and think he was on to something important.

MrSuccess
Dr. Michael Flanagan died last year (in May?) which is a really tragic loss for his followers on CCSVI CCVBP. His analyses were excellent and he followed, advised individual cases like Robni and Dania. I learned alot from him. He wrote that in his opinion 25% of MS cases were in fact due to skeletal obstructions of CNS fluid flow. His posts are still up on ThisisMS (I believe) and well Worth rreading even if he isn't here to answer questions.

Best regards, Vesta
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Re: Apology needed from Cheerleader and Cece

Post by NHE »

vesta wrote:
MrSuccess wrote:what happened to the Upright doctor ?

I really liked his posts .... and think he was on to something important.

MrSuccess
Dr. Michael Flanagan died last year (in May?) which is a really tragic loss for his followers on CCSVI CCVBP. His analyses were excellent and he followed, advised individual cases like Robni and Dania. I learned alot from him. He wrote that in his opinion 25% of MS cases were in fact due to skeletal obstructions of CNS fluid flow. His posts are still up on ThisisMS (I believe) and well Worth rreading even if he isn't here to answer questions.

Best regards, Vesta
Here's a link to his CCSVI and CCVBP topic...

http://www.thisisms.com/forum/chronic-c ... 14005.html
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Re: Apology needed from Cheerleader and Cece

Post by centenarian100 »

1eye wrote:Image
awesome

:)
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Re: Apology needed from Cheerleader and Cece

Post by centenarian100 »

Vesta:

I appreciate your response, but the point I was trying to make is that you don't know if you would be better off. This is just speculation. Many treatments that are very popular and have significant anecdotal evidence end up being completely ineffective. A good example is blood letting which is still practiced today:

http://phenomena.nationalgeographic.com ... s-of-harm/

there really is no convincing evidence that venous or skeletal anomalies are related to multiple sclerosis. The anecdotes you describe are interesting, but when a person has a treatment and things don't go well, it will always be easy to look for excuses retrospectively. A genuinely effective treatment will beat placebo in a blinded randomized trial. This is the only way to know if a treatment works. Otherwise, we will still be practicing blood letting in 1000 years.
I will direct your attention to Robni who suffered injury “heading the ball” as a boy playing soccer in the Netherlands. Another case – Dania whose spine was injured as a young woman in a riding accident.
These cases are probably coincidental. Many people have MS without significant trauma history. Traumatic accidents are quite common, so we would expect many people with MS to have a history of trauma even if there were no causal relationship. Men have a much greater risk of head injury than women but are less likely to get MS. People with traumatic brain injury don't have a higher risk of MS going forward. People serving in the military don't have a higher risk of MS. NFL players don't have a higher risk of MS.
A neurologist who orders a simple spinal MRI is not doing his job because obstructions are not usually visible in a recumbent position.
The purpose of spinal MRI in MS is generally to see lesions in the cord, not "obstructions."
And any Neurologist who takes a kickback from a drug company to prescribe their medication is in my opinion contemptible.
I agree
I am suggesting that a massage which relieves a vein spasm may stop an RRMS attack. Is that so outrageous? If it doesn’t work, no harm done, unlike other potential solutions such as steroids.
Can you prove that your treatment works? It is harmful if it prevents people from seeking out effective treatments
In conclusion, if a skeletal obstruction prevents free flow of blood or CSF fluids, DMDs may be the only solution.
I don't quite understand this. If you believe that skeletal obstruction and venous back flow are the causes of MS, why would you bother to take DMDs? The efficacy of DMDs is based on the idea that relapsing MS is an inflammatory disease. Do you think people would take immunosuppressants for diseases known to be caused by increased intracerebral pressure or venous obstruction (i.e. dural venous thrombosis or pseudotumor cerebri)? This would be absurd, and the medications would be ineffective.
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Re: Apology needed from Cheerleader and Cece

Post by Cece »

centenarian100 wrote:Many treatments that are very popular and have significant anecdotal evidence end up being completely ineffective. A good example is blood letting which is still practiced today:
Just as an aside, we do have a 78 page thread where phlebotomy (blood letting) is being attempted as MS treatment. There is some logic supporting it. And some personal successes with it.
http://www.thisisms.com/forum/chronic-c ... c9480.html
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Re: Apology needed from Cheerleader and Cece

Post by vesta »

AT PRESENT MS IS BEING TREATED AS THOUGH EVERYONE HAS A SKELETAL OBSTRUCTION TO THE FREE FLOW OF THE CNS FLUIDS AND THERE IS NO OTHER SOLUTION THAN DMD'S TO TREAT THE IMMUNE SYSTEM REACTION.

HOWEVER, if no such obstruction exists one should consider solutions to the CCSVI problem. Dr. Owiesy’s idea that a spasm in the vein impedes blood flow suggests a simple massage to release the spasm or TENS acupressure or various simple solutions. His administration of medication in the area surrounding the vein may provide a more permanent solution.

Angioplasty is another solution which worked very well for the lucky Stanford MS patients Jeff Beal and Mark Miller (with stents). Maybe others as well. Unfortunately the obstacles to research mounted by the Neurology/Big Pharma lobby have retarded development of the procedure as well as stents and vein splicing techniques? The FDA even forbade the Hubbard Foundation to keeo a CCSVI registry which could have provided much needed information allowing MS patients to make an informed decision.

It’s time for these vested interests to just get out of the way...

Certainly Dr. Zamboni hopes to be recognized for his insight, as well he should. As motives go, that is a noble one not to be sneered at.

And any Neurologist who takes a kickback from a drug company to prescribe their medication is in my opinion contemptible.
I am suggesting that a massage which relieves a vein spasm may stop an RRMS attack. Is that so outrageous? If it doesn’t work, no harm done, unlike other potential solutions such as steroids. (One problem, MS is a high status disease because of the specialty – Neurology – and all the fancy equipment used to diagnose it and the high priced drugs. The disease category might be demoted if the best therapist is a Masseur.)

It may be that various remedies which seem to help MSers such as LDN do in fact regulate the autonomic nervous system to prevent the spasms. Why not? A field for future study?

In the meantime MSers need to take care of themselves. For starters I would insist on a FONAR upright MRI to ascertain the condition of the spine and spinal fluid flow and have a Chiropractor look at it. I would (do) treat myself with a TENS acupressure daily and at first signs of an attack. I get regular massages...[/quote][/quote]

DMD's are designed to treat the inflammation of the immune response considering, apparently, that the inflammation erupts from nowhere. The whole CCSVI theory is based on the idea that obstruction and/or abnormal flow of the CNS fluids (blood, CSF fluid) injure the tissue of the CNS - brain and spine. Origins of the malfunction differ as do solutions. Ideally one hopes to overcome the obstruction and open the free flow of CNS fluids. However, if a skeletal obstruction blocks venous blood flow and it really can't be corrected, then one probably has no choice but consider DMD treatments (hoping that they are designed to treat the inflammation caused by back jets of blood, for instance.)

I suggest you read the Abstracts from the 2016 Conference of the ISNVD.

https://isnvd.org/

Best regards, Vesta
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