Buffalo Study Healthy Controls

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Lyon
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Post by Lyon »

Dear Fernie;

You might not but others will recognize that there is a huge difference between trying to sell someone on something beforehand and offering encouragement to someone who has already made a decision bereft of of prior input from me.

Read bold below, per the quotes you supplied:
fernando wrote:Lyon said
I'm not sure of the reason but there is no doubt that you actively are trying to talk people into it before safety and efficacy have been proven.
I see that your advice is different from what you do.

Anyone can read for themselves here: http://www.thisisms.com/ftopic-11035-0- ... rasc-.html

You watched and even endorsed the experimentation of an MSer with himself never advising to get under the supervision of a doctor. This man subjected himself to an experiment inoculating helminths in his own body.

You watched it in delight. A few bits will suffice:
Awesome Sheldon! Which helminth are you going to use?
At that point he had just started selling Trichuris trichiura and I had high hopes for that with MS because they don't migrate through tissue so you don't have to go through the coughing jag that you do with hookwork and they've also had an evolutionary long relationship with man so they live up to 20 years so you don't have to dose often and they should have as good an effect on MS symptoms as anything.
It is really disgusting. And you come here to offer advice to people who is treated by qualified doctors?
Yeah, nice try!

Also, you might find it interesting that most of the world's population live in "undeveloped" conditions, are helminth infested and RARELY experience MS. We who are now considered the developed populations RARELY experienced MS before the industrial revolution when we became "developed" and lost our age old human/helminth relationship.

edited*
industrial revolution and our age old human/helminth relationship was lost.
to
industrial revolution when we became "developed" and lost our age old human/helminth relationship.
Last edited by Lyon on Tue Sep 28, 2010 4:52 pm, edited 1 time in total.
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scorpion
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Post by scorpion »

Trying to worm your way out of another one huh Lyon? ewww bad one :oops:
Lyon
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Post by Lyon »

scorpion wrote:Trying to worm your way out of another one huh Lyon? ewww bad one :oops:
I've got to admit, that's a groaner! :x
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Jugular
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Post by Jugular »

The most ardent opponents of CCSVI are those researchers like Freedman who have seen their own ambitious plans for MS world domination swamped in its wake.
malden

Post by malden »

Jugular wrote:The most ardent opponents of CCSVI are those researchers like Freedman who have seen their own ambitious plans for MS world domination swamped in its wake.
Goood plot for new Mike Myers movie ...And then Austin Powers come and save the World from the evil Freedman domination!
Lyon
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Post by Lyon »

Malden wrote:
Jugular wrote:The most ardent opponents of CCSVI are those researchers like Freedman who have seen their own ambitious plans for MS world domination swamped in its wake.
Goood plot for new Mike Myers movie ...And then Austin Powers come and save the World from the evil Freedman domination!
No kidding! Must be getting desperate because that was based only on convenience.
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fernando
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Post by fernando »

Lyon,

Maybe and for sure you really like to play with semantics.

And I didn't know that you have direct access to all the members of TIMS to get their opinions about this matter.

You can say whatever you like about how "helminth infested people RARELY experience MS", but there are no experiments, no trials.

Helminth therapy is not approved for treatment.

There are not large multi center double blinded studies.

It is known that helminths can cause anemia.

It is not known if this therapy will do more harm than good in MS patients. In fact the person had a relapse a few weeks after of being inoculated with parasites.

The case we are talking about is an experiment conducted without even medical supervision by a regular doctor.

I believe that the person is not in any MS medication and as far as I know helminthic therapy is the only "treatment" he is subjected to.

For me, if this person does all of that under medical supervision is fine.

But for you, with your emphasis on "safety and proper conducted trials" before any actions are taken, it speaks of a double standard.

Twist that whatever way you like.
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jimmylegs
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Post by jimmylegs »

buffalo study healthy controls. relevant discussion please.

Rules of the Board:
http://www.thisisms.com/ftopicp-1639.html#1639
Point, counterpoint, counter-counter point, etc. is not useful-- the reality is that after the first disagreement, you will rarely convince another of something they feel strongly about unless you have shocking new information to share. The drawn-out debates also turn people off from reading the messages in the first place. If you really have to get something off your chest, please send that person a Private Message-- there is no need to have a long argument in public.
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Jugular
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Post by Jugular »

Malden wrote:
Jugular wrote:The most ardent opponents of CCSVI are those researchers like Freedman who have seen their own ambitious plans for MS world domination swamped in its wake.
Goood plot for new Mike Myers movie ...And then Austin Powers come and save the World from the evil Freedman domination!
Freedman isn't evil, just far less relevant. And for that he has hard cheese, much like his fanboys. That's why in their desperation they latch on to an issue like CCSVI in healthy controls in the Buffalo study and cling on for dear life.
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MarkW
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Lyon is a smoke screen for some reason

Post by MarkW »

I am open about my professional standing, and have been interviewed by London's Daily Telegraph as a CCSVI advocate:
http://www.telegraph.co.uk/health/78823 ... elief.html
Why are you hiding behind the smoke screen of 'Lyon' ????

Lyon wrote: If the pharmas were smart enough to "plant" me at thisisms back in 2006 due to the future threat that CCSVI would pose to their drug sales, you are fighting a battle you could never win.
I never suggested this, why did you introduce it? I was a management consultant in the pharma industry, so if anyone is a pharma plant it is me.

You repeat asking for more info on safety. The safety of balloon venoplasty, which I recommend is proven. It has been used by vascular doctors for many years. So put up or shut up about saying venoplasty is unsafe, it is safe.

Lyon wrote: If the above was any more than your personal opinion there wouldn't be any need for this conversation. Organized medicine would already be convinced of the merit of the theory of CCSVI, which is far from the reality of the situation.

The argument is between different groups of doctors - MS neuros verses vascular doctors. You say organised medicine is against CCSVI. This is pure garbage.

OK Jimmylegs I understand your point. The BNAC group made some mistakes in their control group selection which is being exploited by nay sayers. This must be countered.

MarkW
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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jimmylegs
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Post by jimmylegs »

i like your last paragraph, mark.

to any and all TIMS members who find themselves conducting the same unresolved arguments with the same people on an ongoing basis here at TIMS, i'm sure you know who you are better than i do.

it's time to take these arguments off the public menu and continue your disagreements privately.
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Cece
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smoking behind smoke screens is particularly bad for ms

Post by Cece »

MarkW wrote:The BNAC group made some mistakes in their control group selection which is being exploited by nay sayers.
I think it is also being misunderstood by the yay sayers. The exact numbers have been available from BNAC for quite some time. The percentage of CCSVI found in the family members is very close to the percentage found in the unrelated controls. So the argument that we can dismiss their findings based on family members being in the controls is not a good one. I much prefer the argument that we can dismiss their findings because the MRV imaging is not being found to be as accurate as it should be when BNAC study participants go in for catheter venogram treatment. I also like the argument that we don't need to dismiss their findings, because BNAC found that MSers have CCSVI at a much higher rate than nonMSers do, which validates that CCSVI is an issue for at least the majority of us.
Last edited by Cece on Wed Sep 29, 2010 9:22 am, edited 1 time in total.
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jimmylegs
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Post by jimmylegs »

all right, this looks back on track!
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patientx
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Re: smoking behind smoke screens is particularly bad for ms

Post by patientx »

Cece wrote:I much prefer the argument that we can dismiss their findings because the MRV imaging is not being found to be as accurate as it should be when BNAC study participants go in for catheter venogram treatment.
But that would be incorrect because the doctors at BNAC used ultrasound, specifically Zamboni's recommended measurements, to gather their data. The MRV's were done as an additional test, in only a subset of the study participants.
Lyon
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Post by Lyon »

MarkW wrote:OK Jimmylegs I understand your point. The BNAC group made some mistakes in their control group selection which is being exploited by nay sayers. This must be countered.
jimmylegs wrote:i like your last paragraph, mark.
I'm not going to accuse you of anything jimmy but I don't understand how that aligns with unbiased moderation.

Could you explain IN PUBLIC, since the statement was made in public?
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