The alleged research commitment by NMMSS

[HappyPoet]

I would like one person to show that drug companies have been involved in spreading false rumors about CCSVI, or that MS societies are deliberately doing so.

I don't know where to find the video, but these very telling opening words from the first speaker, a neurologist with one of the MS societies I believe, at a panel discussion at the recent AAN meeting with both Dr. Zs as invited speakers, have stayed in my mind...

"MS is an autoimmune disease..."

This was "deliberately" misleading in my book because that doctor, as well as you and I, know that MS has never been proven to be autoimmune. Actually, his words are more than merely misleading -- they are an outright lie, wouldn't you agree?

~HP
.

[bestadmom]

Hi HP,

That doctor was Aaron Miller who runs the MS Center at Mt. Sinai Hospital in NYC. He was going to partner on a CCSVI study with Dr. Sclafani and I went to see him in early December.

He barely knew about CCSVI and didn't think it was possible to be correllated to MS, BUT he did say he could be wrong and needed to approach things with an open mind. He brought up the ulcer story to me.

I was surprised when he said MS was an autoimmune disease at the AAN panel discussion. I didn't expect him to dig his heels in, considering so much more is known about CCSVI and MS in the past 5 months.

[eric593]

There is MUCH evidence to suggest that MS is an autoimmune disease. Our immune systems are having an inflammatory reaction to our CNS. There may be a good REASON why it's doing that, ie, it's getting rid of an iron deposit that shouldn't be there, or something else.

Doctors have a wealth of data to suggest our immune systems attack our CNS. Just because a new theory comes along doesn't mean they automatically throw out the last one that's been held for 100 years. This new one has to be PROVEN and it has to be capable of REPLICATION.

No, I would not hold it against the doctor who said that MS is an autoimmune disease. Our immune systems are certainly involved in the demyelinating process. That's why drugs that suppress our immune system work to varying degrees in us.

patientx - I agree with your thoughts on the article too. I didn't see anything blatantly wrong with it, just minor things that could be considered a difference of opinion. It wasn't a smear job against CCSVI, at least I didn't think so either.

[cheerleader]

Here were the incorrect statements and corrections as submitted to the Lancet:

1. Media hype is driving CCSVI- FALSE.
The US media has been silent, as is most of the world with the exception of Canada. It is patients and caregivers studying the research, getting tested, finding venous malformations, getting treated and sharing their results on the internet. It is doctors who are studying CCSVI and finding venous malformations in MS patients, and sharing their research. This is not "media hype." This is shared reality.

2. Dr. Dake believes CCSVI causes MS- FALSE.
Dr. Dake was treating a venous situation, because I brought him research and my husband wanted to be tested to see if venous malformation was part of his disease process. It was. My husband was treated for VENOUS INSUFFICIENCY and MALFORMATION by a vascular doctor. He was not treated for MS. Dr.Dake was following protocol for treating severe malformation of the jugular veins. Not MS.

3. Dr. Zamboni's research is "questionable" it was not "blinded" FALSE--
Dr. Zamboni tested 65 CDMS and 265 controls with BLINDED RESEARCH and found, using a specific transcranial dopper and doppler US, that 95% of pwMS had CCSVI. It was upon venography --which was unblinded--that he found CCSVI in 100% of CDMS and 0% of controls. Venography is the GOLD STANDARD test....which leads to-

4. Dr. Zivadinov's very different findings show that Dr. Zamboni is incorrect--FALSE.
Dr. Zivadinov explained the difference in findings at the AAN convention. He did not have access to TRANSCRANIAL doppler in 125 patients, due to "technical difficulties. TCD allows researchers to see reflux of blood back into the brain. His study was not the complete Zamboni protocol. And, once again, his study did not include VENOGRAPHY, the gold standard testing. Both D. Zivadinov and Zamboni reported at the AAN convention, that 90-100% of all CDMS patients have CCSVI when tested with VENOGRAPHY. There is correlation of this around the globe.

The Lancet claims that it will correct errors made in any articles. I hope they will amend this "reporting"

cheer

[eric593]

cheer,

I really think your points are incidental and a matter of opinion as opposed to glaring inaccuracies. Media hype here in Canada has certainly driven American interest in this.

Zamboni's research was unblinded because both the doctors and patients knew the patients were being treated. I'm not talking about diagnosis I'm talking about his results of treatment were not blinded.

The other points I think are equally as trivial and not a matter of "right" or "wrong" but just a different interpretation.

[newlywed4ever]

I went to my 1st MS support group last week to share CCSVI research. After being given a few hand-outs, I asked if that support group is under the MS Society and was told that it is. Out of the 10 people there, no one had ever heard of CCSVI, Zamboni or the Liberation Treatment. Can any one tell me if the chairperson of the MS support groups are volunteers or paid? Thanks!

[eric593]

Can any one tell me if the chairperson of the MS support groups are volunteers or paid? Thanks!

Volunteers in my experience.

Our volunteers lead committees, manage projects, even recruit and train other volunteers.

http://www.nationalmssociety.org/get-in ... index.aspx

[HappyPoet]

There is MUCH evidence to suggest that MS is an autoimmune disease. Our immune systems are having an inflammatory reaction to our CNS. There may be a good REASON why it's doing that, ie, it's getting rid of an iron deposit that shouldn't be there, or something else.

Doctors have a wealth of data to suggest our immune systems attack our CNS. Just because a new theory comes along doesn't mean they automatically throw out the last one that's been held for 100 years. This new one has to be PROVEN and it has to be capable of REPLICATION.

eric, your use of the word "suggest" instead of "prove" is very interesting.

Also very interesting is that in your first paragraph, you say "our immune systems are ... getting rid of an iron deposit," but in your second paragraph you say "our immune systems attack our CNS."

Everyone, here's the link to the video of the AAN conference:
http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

~HP

.

[eric593]

eric, your use of the word "suggest" instead of "prove" is very interesting.

Also very interesting is that in your first paragraph, you say "our immune systems are ... getting rid of an iron deposit," but in your second paragraph you say "our immune systems attack our CNS."

All prior MS papers/texts, etc. always call the belief that MS is an autoimmune disease a theory still. Thus, it's not been proven. I also don't know how seriously researchers or doctors have taken the new research that shows that the immune reaction may not be an early feature. I have no idea if it's affected their believe of this autoimmune theory of MS.

Re: your second point. I'm not sure what you are getting at? Demyelination occurs. If there isn't a pathogen involved, then it's our immune system that is causing the demyelination to our CNS. But it might not be an erroneous autoimmune reaction (molecular mimicry) as has been previously thought (but that I've never believed). It could be the new supposition that it's the iron deposits that our immune system is trying to remove.

I'm not sure what your question really was as to the second point?

[bluesky63]

I had a few thoughts swirling around somewhere in what's left of my brain when I was posting various bits of info.

I will try to articulate those.

* I have been struck by the imbalance in how CCSVI is portrayed and described vs. chemo, stem cell transplantation, tovaxin, tysabri, etc. It would be fascinating to see a direct comparison using the same standards -- for instance, warning people using infusion therapies or steroids about every detail of every danger of those, including the danger of infection if they need a portacath, which many people do when they get a monthly infusion. Portacaths are far more likely to have complications and infections than the site of a percutaneous venoplasty.

For instance, I used monthly IVIg, which had serious side effects from each infusion, yet everyone encouraged me and even suggested using steroids -- which carry their own serious side effects -- to deal with the side effects of the infusion reactions. If I saw a chart comparing this to one venogram -- ? And yet every so often the MS newsletter would publish an update on IVIg research, without sending everyone a blurb on the dangers of infusion reactions.

Do you get my point> When we received a newsletter update on CCSVI, the newsletter also pointedly sent info on the dangers of venogram complications -- which we are told by medical experts are actually negligible. If the newsleter were consistent, this would be like sending the package insert every time we get an update on Fingolimod, or Campath, for instance. Clearly they don't do this. Ergo, the imbalance we have seen. THAT is what I am objecting to.

* Second thing -- about the marketing. I also believe that professional marketers are better than amateurs. But it felt uncomfortable to see that they were specifically targeting MS societies with specific goals to "probe" for information about people with MS. It also states that as part of their job performance they will be evaluated on signing up specific numbers of new clients.

Well, these are sales people, not doctors, and it feels like a slippery area to bring them in and have them become part of the financial structure of the MS Society, make it part of their job description to gain trust and "influence" their thoughts and decisions, and sign up as many new people as possible for their drug.

This has nothing to do with CCSVI; it just feels tangled to me. I don't like to feel like someone's job performance depends on treating my illness with a potentially fatal drug. Let's just say there's a chance they may not be completely objective.

Of course I know this is reality. I am just musing out loud about it.

* Third thing -- I am amazed by the extensive structure of the MS Society in the US. I read the bio of Sylvia Lawry. Her commitment to a cure and her accomplishments are incredible. I would suggest that anyone here read those. She started the whole society to find a cure, to be dedicated to research. Then they branched into support as well.

I read the recent annual reports (2004-2008 are available online). Money for research averages 21 percent. Support for people with MS averages about the same. Public and professional education averages 18 percent. They have some high salaries in there, but admin costs stay about 6-7 percent. Overall, really not bad.

I tried to find out how many of their staff have MS but I was not successful. Obviously lots of their volunteers do, but I was curious about actual employees (full or part-time).

More to say but I'm tired.

[HappyPoet]

Eric, just a few points . . .

All prior MS papers/texts, etc. always call the belief that MS is an autoimmune disease a theory still. Thus, it's not been proven.

So, you do agree that the autoimmunity theory has "not been proven" -- glad we cleared up this point.

No, I would not hold it against the doctor who said that MS is an autoimmune disease.

So, you don't "hold it against" Dr. Aaron Miller for LYING -- glad we cleared up this point, also.

It could be the new supposition that it's the iron deposits that our immune system is trying to remove.

So, you do think that "it could be" CCSVI theory -- glad we cleared up this point, too.

~HP
.

[patientx]

Here were the incorrect statements and corrections as submitted to the Lancet:

1. Media hype is driving CCSVI- FALSE.
The US media has been silent, as is most of the world with the exception of Canada. It is patients and caregivers studying the research, getting tested, finding venous malformations, getting treated and sharing their results on the internet. It is doctors who are studying CCSVI and finding venous malformations in MS patients, and sharing their research. This is not "media hype." This is shared reality.

2. Dr. Dake believes CCSVI causes MS- FALSE.
Dr. Dake was treating a venous situation, because I brought him research and my husband wanted to be tested to see if venous malformation was part of his disease process. It was. My husband was treated for VENOUS INSUFFICIENCY and MALFORMATION by a vascular doctor. He was not treated for MS. Dr.Dake was following protocol for treating severe malformation of the jugular veins. Not MS.

3. Dr. Zamboni's research is "questionable" it was not "blinded" FALSE--
Dr. Zamboni tested 65 CDMS and 265 controls with BLINDED RESEARCH and found, using a specific transcranial dopper and doppler US, that 95% of pwMS had CCSVI. It was upon venography --which was unblinded--that he found CCSVI in 100% of CDMS and 0% of controls. Venography is the GOLD STANDARD test....which leads to-

4. Dr. Zivadinov's very different findings show that Dr. Zamboni is incorrect--FALSE.
Dr. Zivadinov explained the difference in findings at the AAN convention. He did not have access to TRANSCRANIAL doppler in 125 patients, due to "technical difficulties. TCD allows researchers to see reflux of blood back into the brain. His study was not the complete Zamboni protocol. And, once again, his study did not include VENOGRAPHY, the gold standard testing. Both D. Zivadinov and Zamboni reported at the AAN convention, that 90-100% of all CDMS patients have CCSVI when tested with VENOGRAPHY. There is correlation of this around the globe.

The Lancet claims that it will correct errors made in any articles. I hope they will amend this "reporting"

cheer

"1. Media hype is driving CCSVI- FALSE."
This is mainly a matter of opinion. Look at how many people called the MS societies and joined thisisms after the first CTV story, many citing the promise of CCSVI. Dr. Zamboni has not been shy about doing radio and tv interviews. And the article was not just referring to newspaper and tv outlets; it included internet sites and blogs, also.

"2. Dr. Dake believes CCSVI causes MS- FALSE. "
Really? I was told otherwise. And your explanation just says Dr. Dake treated your husband for a venous problem. But if assuming this statement is false, why had Dr. Dake only examined treated people with a diagnosis of MS?

my husband wanted to be tested to see if venous malformation was part of his disease process. It was.

You know this how? And are you saying, that all those neurologists who say that the stenoses are a result of the MS (including Rick Rudick in the article), might be correct?

"3. Dr. Zamboni's research is "questionable" it was not "blinded" FALSE--"

Dr. Zamboni's doppler exams were not truly blinded. If a patient had an outwardly physical problem, then it would be obvious to the examining tech or doctor that he or she had MS.

"4. Dr. Zivadinov's very different findings show that Dr. Zamboni is incorrect--FALSE."

Where does it say this in the article? I couldn't find anything like this. It does raise some good points about the lack or correlation, while acknowledging the difference in ultrasound machines. And on the topic of the venography being the gold-standard - in his paper, Dr. Zamboni wrote that all the CDMS patients who met his ultrasound criteria for CCSVI, also showed this on venography, i.e a 100% correlation between the two methods. So, one would think the venography is not a necessary test, and all that is required is the ultrasound.

[patientx]

I would like one person to show that drug companies have been involved in spreading false rumors about CCSVI, or that MS societies are deliberately doing so.

I don't know where to find the video, but these very telling opening words from the first speaker, a neurologist with one of the MS societies I believe, at a panel discussion at the recent AAN meeting with both Dr. Zs as invited speakers, have stayed in my mind...

"MS is an autoimmune disease..."

This was "deliberately" misleading in my book because that doctor, as well as you and I, know that MS has never been proven to be autoimmune. Actually, his words are more than merely misleading -- they are an outright lie, wouldn't you agree?

~HP
.

No, I do not agree those words are anything approaching a lie. Bordering on misleading, yes. But, then again, it might depend on the definition of autoimmune. True, an antigenic target hasn't been identified. But the body's own immune system is involved in the disease process. Besides, in his first CTV interview, Dr. Zamboni was asked if MS is an autoimmune disease. And his answer was yes.

Regardless, I still don't see how a doctor's statement that MS is autoimmune shows he is trying to shut down any other research. He might not believe other theories (including CCSVI) have merit, but that just means he won't be studying anything else.

[HappyPoet]

Hi bestadmom,

Thank you for telling us that the speaker at the ANN meeting is Dr. Miller and for sharing your story and impressions about him.

I have to wonder what caused his complete turn-around from being open-minded with you and almost partnering on a CCSVI study with our Dr. Sclafani to damaging, if not shattering, his reputation by saying "MS is an autoimmune disease."

A change this drastic is very intriguing, indeed -- I wish I was a NY Times investigative reporter or a seasoned private detective.

It is for the best that Dr. Sclafani did not partner with this man.
.

[HappyPoet]

Regardless, I still don't see how a doctor's statement that MS is autoimmune shows he is trying to shut down any other research. He might not believe other theories (including CCSVI) have merit, but that just means he won't be studying anything else.

Oh come now... I refuse to believe that you don't think Dr. Miller was "trying to shut down" CCSVI. Of course he was trying to shut it down -- he was trying to slam the door shut in its face. That was why he was there speaking. That is why he opened his remarks by first saying, "MS is an autoimmune disease."

I know you are more sophisticated than to believe he merely meant that autoimmunity is the only theory he'll be studying, lol.

I wonder why you said these things.
.