This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi folks - I just wanted to share my experience at a conference here in Detroit last night. It was a lovely event, sponsored by Bayer, the makers of Betaseron. The topic was on "Emerging Therapies" and the speech was given by Dr. Omar Khan, a neurologist from Wayne State University. I was not expecting CCSVI to be a part of the evening, but was surprised when it was given quite a bit of talk time. I felt that he was under the impression that everyone in the room was privy to it, but I also felt that not many there were. I think perhaps because of the onslaught of e-mails that Dr. Haacke received. Anyhow, to my dismay, he began the discussion about CCSVI by likening it to when one of his patients insisted on having 20 bees sent to them and how the concern was whether the US mail would allow it, blah, blah, blah. I got the impression that he was trying to say that the flurry of people wanting to rush out and have stent surgery was the same as people wanting to get stung by bees. Insulting! Okay, I wrote down some things that he also said, which I felt was misinformation and meant to scare people out of believing the research:

1) He said that there has been one death already, which was due to a migrating stent.

The truth is, one death occurred that was not related to CCSVI, but due to the coumadin that was taken following surgery, there was hemhorraging from a different condition that could not be stopped due to the coumadin. This has been discussed here and corroboration was given as to what the cause of death was and that it was not related.

2) He said that there have been two stent patients who've required open heart surgery due to migrating stents.

He must have knowledge that we do not have.

3) He said that the problem with the study conducted by Zamboni was that it was not a controlled study. He said that if he had 100 MS patients and 90% had stenosis, and he took 100 epilepsy patients and 90% of them had stenosis, and he took 100 normal patients and 90% of them had stenosis, then what? How could MS be linked to CCSVI?

Did he really read the study?

4) He said that the study does not address the fact that noted vascular surgeons have proven that when the position of the head changes, so too do the veins open and close. He stated that the study was not conducted taking into consideration the patients position and how laying supine affected the results.

Again, did he REALLY read the study?

I have to say that I was very disappointed with the negative spin that was given to CCSVI. He put up pictures, which we have all looked at here, but mainly only to point out that the vein opens up when the head is positioned a certain way ( I think he even used a closed vein pic and then a stented pic to demonstrate this). I thought that a colleague of Dr. Haacke may have presented this in a more unbiased manner, but alas, he is of course a neurologist. I would have loved to have had a vascular doctor there looking at those pictures and telling us the potential outcomes of that damage. Oh well. Just wanted to let everyone know that there is definately a battle ahead in terms of getting any true validation.

When money from big Pharma is involved, the word "collegue" has no meaning. Let's not forget that neuro's have been tackling this issue for decades, and to have someone from outside of their realm, come up with a totally different "potential" solution... Well, it rubs them the wrong way.

I'm glad at least I met a good neuro, specializing in MS, who had a "we'll wait and see" attitude towards Zamboni's findings, instead of an out-right denial of it.

HEY

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"Never argue with stupid people... They bring you down to they're level and beat you with experience"

I am in the Detroit area, and would appreciate notice of any more conferences for MS such as the one you attended last night. We need to start speaking up at these events to keep the momentum.

Dr. Khan should read Dr. F. Alfons Schellings' book, Multiple Sclerosis: the Image and its Message, the meaning of the classic lesion forms. It is available on the internet. His theory was not allowed to be researched, this was in the 1980's, and thus, the current mindset that MS is soley neurological. And,that only drugs will resolve MS symptoms. Dr. Zamboni's study concurs with Dr. Schellings' theory.
So, don't think this fight will be an easy one.

Barry Marshall (of helicobacter pylori fame) had a ten year battle to prove his theory; in his battle he infected himself with the bacterium and cured himself by taking antibiotics to prove that stomach ulcers had little to do with diet or lifestyle but was caused by a bug. During that time many people continued to suffer and some died because no one was prepared to listen to him. Now of course it is a different story, but it was only a couple of years ago that my neighbour went untreated until a young locum spotted the problem and cured it in a couple of weeks.
I can't see anyone voluntarily constricting their jugular veins to cause MS in themselves for the sake of proving the case, so I rekon that this is not going to be a solution for this procedure, but we now have the advantage of the internet and MS sufferers and their families will be stiring the waters and demanding some serious discussion and studies pronto.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Dovechick...I'm a mom whose son has MS. Let no one in the medical world think that they have met a challenge until they have dealt with a MOTHER fighting for her child. We' re in this fight to the finish!!!

Hear, hear, Moom. Sometimes I even have to do battle with my daughter. This is not my style, any one who knows me personally will quite categorically state that I am not a type A personality, but I'm a stayer and I will be quietly active in the background.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Moom - Are you familiar with the MSAA? Scott McDonald is the regional director and was there last night. This organization are the ones who sent me the information by e-mail. It may be something you would be interesting in joining, as you will get notification of similar events in your local area.

Dovechick - I am also familiar with this study. Because of it, my husband and I both were tested and were given the proper antibiotics to control our ulcers and gastro issues. Very thankful for the man who infected himself to prove his theory! He won a Nobel prize for his work, which he well deserved.

I forgot to add that Dr. Khan also discussed using mice as a possible way to prove/disprove whether CCSVI is plausible. He said that their veins could be manipulated to mimic stenosis and we could then see what happens to them. I thought, but mice don't get MS! I am rather shy when it comes to public speaking, so not a great candidate to represent the CCSVI community. There was one man who asked "Isn't this worth pursuing further?" To which he replied, "Of course! Which is what will be occurring very soon, so please, do not run out and get stent surgery! Give the researchers time to explore this further first."

Other than that, no one else asked questions about it and they moved on to other "promising" new therapies and asked many questions about those.

Shannon, I think there are mice bread to mimick MS but of course it is not true MS just that they are bread to show some of the symptoms of MS. With this theory they could start with a healthy mouse strain and somehow constrict their veins to see what happens.
The trouble with medical people is that they don't usually suffer from the diseases they are treating, and sometimes rushing is necessary to maintain some kind of quality of life.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Well... Dr Khan will NOT be on my list of big names supporting CCSVI.

Oh Shannon, that must have been awful. Your blood must have been boiling!

Did anyone in the audience seem skeptical of Khan's speech?

I've already posted above, but I want to say that it is irresponsible and unethical for any doctor or scientist to misrepresent and disparage the research of another doctor or scientist in a large assembly of patients before all the research is complete.

ozarcanoer

It's not just irresponsible and unethical because he misrepresented another's research. From what Shannon said, he either didn't read the research, in which case talking about it at all is irresponsible and unethical, or he did read it, in which case he was actively and knowingly lying because his 'sponsors' wanted him to.

Shannon,

Lets set Dr. Khan straight with a few e-mails, shall we?

Contact Dr. Omar Khan at okhan@med.wayne.edu or 313-745-4280.

Lora

Ozark - I agree. He was very supportive of SWI and the iron deposits that seem to be an important factor, and I even noticed Dr. Haacke's name on a couple of the slides as the lead researcher into this, but I guess he is mainly not convinced of CCSVI as a contributing factor, based on the things that he said about it. Like I said, it seemed to me like he was comparing this to bee venom therapy, which I found very insulting. The chief vascular surgeon of a very reputable research hospital is not the witch doctor that some seem to want us to believe! Also, I didn't like how he made Zamboni's team sound like fools and I got the impression that he must not have really read the details of their work.

Dr. Khan is a well known and liked neurologist for many MS patients in our area. I had heard of him, but others there seemed to know him more personally. This, of course, affected how his speech was received, and I didn't feel that there was much skepticism. He had some very good information about new therapies such as the finglomod study (which he said we may be able to join at WS soon) and many others. The one everyone seemed most impressed with of course was the embryonic stem cell research that he noted would most likely be offered to progressive MS patients when it comes about.

I think that perhaps just as he feels we shouldn't be rushing out to get stent surgery, that he should not be rushing out to give misinformation about CCSVI. There was a survey to fill out at the end, to which I did not hold back on my comments and feelings about the misrepresentation. I was not rude, but I did state that I felt the discussion about CCSVI was not factual and that perhaps he would eliminate the discussion about bee venom therapy as an opening to the topic. Hopefully, he will take my advice. Like I said, I wasn't expecting him to even talk about it at all unless someone asked him about it!

Shannon,

I'm thinking of sending Marie's description of CCSVI to him, it's short and well written. I don't want to send deragatory e-mails, just factual.

Lora