Concerns raised about controversial MS treatment

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

Postby 1eye » Mon Mar 07, 2011 10:51 am

No offence intended and sorry if I tarred anybody with any brush. I was referring to the bad press and bad reputation the word Liberation has received, and how we should forget what we call it, remembering that by any other name, this procedure has helped and holds hope for a lot of people. It does this regardless of what anyone calls it. If we are to make a good assessment of it, we need to stop worrying about its name, in any language.

I also think the press this one word has gotten depends more on its profitability for the press, than it depends on any facts.
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Postby zinamaria » Mon Mar 07, 2011 10:59 am

No offense taken on this end, just like clarity, thanks Leye
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Postby scorpion » Mon Mar 07, 2011 11:13 am

Thanks for posting Squiffy. Your objective reporting is certainly appreciated by many on this site. Funny no one was concerned at all that the primary reason for this article was to warn people about the possibilty of some quack overseas who was performing this procedure yet had no license in his country to do so. As for the "rational" people to start talking to the BNAC at the national level... well I must say I would be honored! :wink:
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Postby EJC » Mon Mar 07, 2011 1:20 pm

Emma will be delighted to talk to the BBC about the Essential Health Clinic having undergone the full procedure and gained a great deal from it.

She will also give them full access to the medical records if they wish....that doesn't make good tele though does it.
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Postby Luvsadonut » Mon Mar 07, 2011 2:33 pm

Just finished watching the program, it was diabolical reporting, gutter reporting at its worst. I think everybody wants to hear objective reporting on the subject but all this report wanted to do was to sensationalise the fact that there have been no clinical results in favour of CCSVI in the UK, normal, healthy people have CCSVI and a Kuwait doctor who is doing the procedure in Egypt isn't licensed in Egypt (Fully licensed in Kuwait - although this wasn't pointed out) . The program was built around Zamboni only finding CCSVI in MS people, the reporter despicably decided not state the fact that the majority (If not all - somebody correct me if Im wrong) of the tests/studies have found healthy people with vein abnormalities, then surprise, surprise the reporter had her veins checked and was found to have CCSVI. Although the woman who had the procedure was very happy with the outcome, the program decided to concentrate time and time again on the fact that it could be placebo. Just to give some context, this was a TV programme focusing on the negative, an equivalent focusing on the positive would be a collage of YouTube clips. Pathetic.
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Postby ikulo » Mon Mar 07, 2011 3:22 pm

Luvsadonut wrote: a Kuwait doctor who is doing the procedure in Egypt isn't licensed in Egypt (Fully licensed in Kuwait - although this wasn't pointed out).


Thanks luv, that clarifies the licensing issue.
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Postby CureIous » Mon Mar 07, 2011 8:28 pm

Hopeful10 wrote:Wow, what a terrible hatchet job by the reporter. She references the U.S. study (at BNAC) that found over half of MSers have CCSVI, but neglects to state two additional important pieces of information from the same BNAC study: about a quarter of non-MSers were found to have CCSVI , and yet the association between CCSVI and MS was still found to be significant.

So when the reporter lets readers know that she was diagnosed with CCSVI, without providing appropriate context, she intentionally tries to create the impression that CCSVI is BS. I don't have the time to delve into the other problems with the article, but this lack of context is a problem throughout the article.

Cece, thanks for the excerpt and the discussion of permissive lesions. For those who didn't see Cece's thread on permissive lesions, Dr. Cummings noted that he expected that a lot of non-MSers would have CCSVI, since there's a similar phenomenon with vericose veins -- a lot of people have significant veriscocity, but only a subset get vericose veins.

Cece wrote:
BBC Inside Out's Sam Smith outside the Essential Health Clinic Nonetheless, vein widening - without stents - is now being offered in the UK by a Glasgow-based company called the Essential Health Clinic.

BBC Inside Out presenter Sam Smith went undercover to be scanned by Essential Health - the first stage in the treatment process which in total costs just under £8,000.

She was diagnosed with CCSVI.

London-based vascular surgeon Ian Franklin said of Sam's diagnosis: "This reinforces the concern a lot of people have that some of these anomalies might be present in the normal population and raises the question that it might not be specifically linked with MS."

That is worth discussing, why would a presumably healthy person be diagnosed with CCSVI? Is the ultrasound dopppler accurate? What would be found on her catheter venogram, would it agree with the doppler? What about the idea of permissive lesions, which exist benignly in some but when coupled with a secondary factor can cause a disease process in others?


Once again (and again, and again), we find out that media coverage for the most part does more harm than good. Relying on corporate profit driven mechanisms to further a cause is a recipe for failure. They do more widespread informational damage in one short piece than all the CR postings combined. It's because it sounds so thorough, so investigative, as if no stone was left unturned, while presenting a rushed, half-baked and incomplete recitation of the truth, whatever version will increase their viewership. Why, one with no knowledge of CCSVI, would come away with "7 studies proved this untrue", and now, the proponents will be painted as "just going after another bee sting therapy".

Don't trust the media, or anyone connected with them, until as such time they have proven themselves trustworthy, to do otherwise is utter foolishness, like handling snakes blindfolded. (that includes internet media).
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Wasted opportunity to test CCSVI under scientific scruitiny

Postby AndrewKFletcher » Tue Mar 08, 2011 10:28 am

Watched the article which was typically presented in an unconvincing manor. The findings were flawed. 1 case of non-ms-ccsvi diagnosis must be dismissed outright! 10 cases out of ten would have been far more interesting and would still require dismissal.
Who is to say the reporter does not go on to be diagnosed with ms a few years down the line, does she have people with ms in her family or maybe lives in an area rife with people who have ms? and was this the reason she investigated CCSVI?

Would have been interesting if she had presented the scanner images as hard evidence but even then it would have not been a revolutionary argument.

The rules attached to controlled studies should reverberate around the BBC along with placebo and white coat syndrome.

Totally unscientific reporting that proved nothing. Shame it was not a group of 20 healthy people compared to 20 people with ms, that could have been interesting.
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Postby scorpion » Tue Mar 08, 2011 11:05 am

I did read the article but the funny thing is I could have just skipped the reading part and guessed by the comments on here that it contained something in it that was critical of CCSVI. I guess it is a coincidence that I went back and pulled as many articles posted on this site as I could find and even the articles that were slightly critical of CCSVI got accused of poor journalism, being flawed, and inaccurracies. Amazingly articles that validated what everyone wanted to hear got raving reviews!!! Go figure.
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Postby TMrox » Tue Mar 08, 2011 1:03 pm

Just watched the whole programme (now available in youtube):

http://www.youtube.com/user/CCSVI2MS#p/ ... BxbQd4FrZ8

Even Dr Colin Rose got interviewed, but none of the doctors doing clinical trials in north america or italy. hmmm

According to Inside Out BBC progamme: If you have been affected by any of the issues in the report you can call BBC ACTION LINE tel 0800 566 065 (add +44 if dialing from abroad). Phone lines are open 24 hours a day and all calls are confidential.

Rox
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 EJC » Tue Mar 08, 2011 1:45 pm

The BBC action Line is just a recorded message giving details or the MS Society etc etc...don't waste your time.

You can complain to the BBC here:-

http://www.bbc.co.uk/complaints/
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BBC Complaints

Postby AndrewKFletcher » Tue Mar 08, 2011 2:52 pm

Have made a complaint to the BBC about the
Programme title:
Inside Out BBC progamme
Transmission date:
07/03/2011
Complaint summary:
Incomplete reporting and coverage of CCSVI
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Postby EJC » Tue Mar 08, 2011 3:02 pm

I posted somthing similar but a little more volumous.

I agree, if you're going to report it at least put some effort into it.

How about asking any of the "80" people treated at the time of broadcast for a comment - I would have been delighted to have taken part.
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Postby 1eye » Tue Mar 08, 2011 3:25 pm

I lived in Oxford for 14 months. I must admit to not having watched their television reporting, as at that time a license was required, so we listened to radio. I listened to the BBC for over a year. During communist regimes, I watched Polish people and Russian people eagerly gather around radios to hear the BBC news, without looking too happy to be doing it, because they were watched.

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 xxx xxxx convinced them they couldn't go wrong.

One thing that is wrong is that I only saw xxxxxx xxxx showing Dr. Zamboni's diagrams, and he's probably never tried to understand them.

But what is really wrong with this show is the lie, dutifully propagated by the interviewed doctors, that the research has not been verified or duplicated. It has. By reputable scientists. Their research takes time, which the foot-dragging neurologists and society fund-raisers, not to mention some politicians, are running out of. The research some claim they have been waiting for will be published very soon. It will embarass the BBC and some scientists. It will not embarass people like xxx xxxx who have no shame or pride, and will continue to lie even if beat over the head with it. Some will deny to themselves that they ever disbelieved it, like the men I met in the Utah bar, watching television when Nixon was resigning. Not a single one had voted for him.

This is not a stem cell scam. People all over the world are doing this. Tens of thousands of them. If it were fake, it would never have progressed this far, especially given the speed with which lies are easily exposed on the Internet. This is not some mass hysteria or gigantic placebo response that is making hucksters rich. This is the real thing, verified by real science.

They did have a vascular surgeon's viewpoint. They did have a Doctor who was actually doing the procedures. Saying they were asked to leave, however, when the supposedly unlicensed doctor came in, was journalistic fakery. He is not running some clandestine operation, and is not hiding anything. Neither is Dr. Gilhooley. He just didn't want to be crucified on TV in a parking lot.

My Canadian drivers' license was accepted in Ireland, though the cars and the roads are both different. I'm sure a doctor who is licensed in Kuwait is legal in Egypt too. Probably gratefully accepted.

I will have to agree with Dr. Gilhooly. In spite of my previous opinion of the BBC, this reporting is despicable. One piece of journalistic trickery like disparagement of the middle eastern doctors, even accepting that they may not be familiar with xxx xxxxxx flat earth blog, makes the whole thing suspect. I am terribly disappointed in the BBC for allowing this pseudo-news to be aired.
Last edited by 1eye on Fri Mar 11, 2011 7:31 am, edited 1 time in total.
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Postby Lyon » Tue Mar 08, 2011 3:49 pm

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