Concerns raised about controversial MS treatment

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

Postby 1eye » Tue Mar 08, 2011 6:38 pm

Lyon wrote:When everything that in your long life has seemed right suddenly turns wrong and contrary to everything that seems decent the masses intentionally defy "logic", at what point after that should a person question their own sense of logic/viewpoint/outlook?

I don't know what you think of as seeming decent, but I have seen a lot of what I would call indecent behaviour around this issue and some even here, of all places. Especially around the dead and dying.

Self doubt is usually a tricky one. (worked for Descartes, but we can't all be that smart) I go by the old ye will know them by their fruit. Doesn't always work, but you can't have everything.

Do you really think that all this reluctance to accept CCSVI only centers on everyone wanting to save the jobs of neurologists or that people who had nothing to do with MS research and have no vested interest in the concept of autoimmunity are only hesitant to let autoimmunity go and embrace CCSVI?

No, I don't. I think ego (some of very powerful men, some of decorated men who have past their prime thinking years) has a lot to do with it. So does money.

In a world of 7 billion people how much does it really point to the veracity of CCSVI that several doctors worldwide embrace CCSVI?


Thinking does not make a thing true, and neither does popularity. Hitler was a very popular guy for a while there.

If CCSVI really were able to stand on it's merit, why do so many people feel that they so staunchly have to defend it?


They don't defend it because they think it needs them, or because they think if they didn't it would suddenly become untrue.

If anyone defends anything staunchly it is because of a few people who persistently needle them into it. The best offense is a good defense. And because money can effectively bury something. My friend died in 1972 of 'MS'. Doctors have been suspicious of some of the dogma of 'MS' since way before that, but the average patient/loved one group seldom questioned doctors because they were their only hope, and not a very high hope at that. The Internet has changed all that. They call them social networks but I believe humanity for good or ill operates quite differently than it did in 1972.

He might be alive today if he'd had the Internet.
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Postby eric593 » Tue Mar 08, 2011 7:16 pm

1eye wrote:I have watched many of the BBC's dramatic productions, and listened to a lot of good music coming from them. I have always, without exception, respected and admired the BBC. But something is wrong with this show.

I watched the Sixty Minutes expose of a scam in Mexico, telling people they could get stem cell treatment, that they would only be charged about enough to pay a house mortgage. They had the man on camera. He did not behave like Dr. Gilhooley did. He coolly took the man with ALS's money and left town. It makes good television. I am usually glad to see these shows. Probably someone like Dr. Rose convinced them they couldn't go wrong.



Is that the same doctor in the 60 Minutes stem cell scam, Dr. Morales, that is also offering CCSVI treatment in Mexico?

http://ezinearticles.com/?CCSVI---The-C ... id=5813776
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Postby Luvsadonut » Wed Mar 09, 2011 4:33 am

A swift and dignified statement from Essential Health Clinic after the BBC accusations...

http://www.essentialhealthclinic.com/website/images/EHC-statement.pdf
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Postby TMrox » Wed Mar 09, 2011 10:48 am

Thanks EJC for providing the link of compalins to the bbc http://www.bbc.co.uk/complaints/

Here another link where one can express the views especifically on the 'Inside Out West' programme on CCSVI. There are 33 comments so far...

http://www.bbc.co.uk/dna/mbpointsofview ... ad=8108628
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Lyon » Wed Mar 09, 2011 11:39 am

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Last edited by Lyon on Thu Jun 23, 2011 4:25 pm, edited 1 time in total.
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Postby 1eye » Wed Mar 09, 2011 2:41 pm

eric593 wrote:Is that the same doctor in the 60 Minutes stem cell scam, Dr. Morales, that is also offering CCSVI treatment in Mexico?


I don't know. But if it is, I predict he will give people treatments but only for a very much larger sum than is being charged for it anywhere else.

I'm no judge but he looked and sounded to me like a white American. I had the impression, possibly wrong, that he was operating in the US.

They said he took the money and ran.

One thing I remember was the IV in the thumb (ugh). I think they showed that he had faked all his 'degrees', and claimed to have attended a school that never heard of him. If this guy is doing CCSVI procedures, he is a crook, to be avoided. I find it hard to fathom, but there you are. The CCSVI doctors in the US I have heard about range from the very good and competent to icons in their field.

Like the Italian guy said in that video, just because it is safe in the right hands does not mean it is easy. If anyone thinks they can get it cheaply, they are wrong. The benefit over cost is astronomical, though, compared to things like interferons.

This is being done all over the US. It is not clandestine or illegal in any way. Why would anybody think they had to go to Mexico to get it? There are enablers who act like travel agents in the sense that they will handle all the details, for a price. They are not scamming dying people, as far as I know. They are making things convenient for those who can afford them. I can't.

I thought at one time about teaming up with them to try to help those who are dying of 'MS', and use fund-raising to get the money. It would not work because for one thing I have no experience, and for another I believe the cost would be too high to ask people to donate. To their credit, they were prepared to let me try.

Many, if not most, US CCSVI procedure providers are doing it as part of clinical testing. The information about these patients is being collected in repositories.

Canadians are a different story. Because of efforts like Rose's and the neurologists', people do have to get this procedure away from home.

I would say, do your homework about the doctor(s) and facilities beforehand, and make double sure, even book an appointment, to get after-care done at home. Maybe somebody like CCSVI Alliance should make up a set of recommendations, if they haven't already, to help people in the US. I don't know if there is such a thing in Canada for those seeking treatment elsewhere, but you could try MSLiberation.ca

p.s. checking further, I found: http://www.stemcellpioneers.com/showthread.php?t=3056

an update: the 60 Minutes guy was Frank Morales. The CCSVI doctor works in a hospital and is Dr. Daniel Morales. He is a neurosurgeon.

But it does seem that too many $ are being made doing the Procedure for all of them to know how so quickly. They are now advertising everywhere. Buyer beware!
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Postby 1eye » Wed Mar 09, 2011 6:29 pm

bump: see update above
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby 1eye » Fri Mar 11, 2011 6:42 am

me again. I just received this:

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This was in response to a posting which was an exact copy of the one you can see from me, elsewhere on this thread, about the BBC show.

I have removed what I expect were the offending names from this forum.

I had noted a lot of people were complaining about their postings being deleted. Now I know why. In future, I would ask that moderators here delete anything from me that they see as defamatory, or if expedient, delete the entire posting. I will endeavor not to repeat this.

I will now re-submit, if they are still accepting submissions.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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