more of the same

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

more of the same

Postby 1eye » Thu Jun 07, 2012 1:01 pm

Click here to see another negative study... if you don't want to, that's ok, too.

Discussed on another thread, this study is just another feeble attempt by a neurologist to misinform the public. It seems to have made some more progress toward that end with the lead neuro and the Health Minister in Newfoundland, who still doesn't have to make any plans (whew).

Well, that's one less province for them neurologists to worry about. Now what are they gonna do about that dang Senate?
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Re: more of the same

Postby fiddler » Fri Jun 08, 2012 8:25 am

Do we have an idea of how the study was conducted? If it was done improperly, then the authour (and minister) should be taken to task. Of it simply measured the "wrong" things, those that the procedure is not known to help (for example, lesions or even mobility instead of the more successful impacts on fatigue, balance and autonomic functions), then we should let everyone (the authour, minister, media) know that, loudly and clearly. But first we need more info on the study... anyone have that?
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Re: more of the same

Postby fiddler » Fri Jun 08, 2012 8:28 am

By the way, 1eye, maybe you should restart this thread with a different title... it could lead to a good discussion of what SHOULD be in the observational studies, so it would be unfortunate if it was missed because of an ambiguous title.
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Re: more of the same

Postby scorpions » Fri Jun 08, 2012 8:38 am

I am sure 1 eye is working hard to locate something in the study that calls it into question. If all else fails it can always be blamed on a neurologist! After reading specifics of the study I think there were some minor flaws but overall it appears to have been ran in an objective manner.
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Re: more of the same

Postby Cece » Fri Jun 08, 2012 8:51 am

http://www.mstrust.org.uk/news/article.jsp?id=5420
Some more details on the study:
In the study, 40 people with MS underwent an array of tests before the venoplasty treatment and then at intervals of one month, three months, six months and one year after the procedure. These tests included questionnaires, MRI scans, and a standardised test used to assess function (manual dexterity, ability to walk and mental acuity).

The researchers found no difference between the 30 people who had been treated by the venoplasty and ten people who had not. The initial benefits reported by people who had received the procedure, such as more energy or better balance, tailed off over time, with a drop-off after three months. After a year, about a quarter had had a recurrence of blocked veins though showed no reduced function when compared to those where the blocked veins did not recur.
Dr. Pryse-Phillips said the study was set up so that he didn’t know which participants had undergone venoplasty and which had not.
Dr. Pryse-Phillips also noted that by the 12-month check up, about a quarter of the patients who had undergone venoplasty had blocked veins – either a clot in or the closure of one or more neck veins. But there was no difference, function-wise, in these patients as compared to the 75 per cent who didn’t have the clots or blockages.

http://www.theglobeandmail.com/life/hea ... cmpid=rss1
Last edited by Cece on Fri Jun 08, 2012 9:10 am, edited 1 time in total.
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Re: more of the same

Postby fiddler » Fri Jun 08, 2012 9:05 am

Thanks Scorpions, thanks Cece.
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Re: more of the same

Postby fiddler » Fri Jun 08, 2012 9:12 am

So, though they don't say it was among the things measured, they do mention reduced fatigue and improved balance (two of the three things that markedly improved for me) as initial benefits that went away in three months. In my case those benefits (plus improved autonomic functions) remain much improved after 26 months. But then, I'm not being studied...
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Re: more of the same

Postby Cece » Fri Jun 08, 2012 9:21 am

I wish it would separate out the 25% who had blockages due to either clots or closures. A closure is unfortunate but can be retreated; a clot is a more serious outcome.

It would also be useful to know if the patients had more advanced MS, as determined by EDSS or duration of disease or progressive vs relapsing remitting disease course.

As fiddler has mentioned, in the self-reported questionnaires, patients reported improvements in balance and energy that lasted for three months, then dropped off. The objective measurements did not directly measure balance and energy. This would suggest that a future study should include objective measurements at least of balance, which should be measurable.
The study done by Pryse-Phillips did find there were subjective psychological and physical benefits, but he described those as “meagre” compared to the costs and the risks.

Well, there you go...self-reported improvements in energy and balance and warm hands (which may be evidence of an improved autonomic nervous system) are dismissed as meagre.

In MS, we are used to paying a high cost in risk and money for seemingly meagre results, every time we take a disease-modifying drug.

And as someone who previously suffered from severe MS- and CCSVI-related fatigue, any reduction in fatigue is NOT meagre.
Last edited by Cece on Fri Jun 08, 2012 9:57 am, edited 1 time in total.
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Re: more of the same

Postby 1eye » Fri Jun 08, 2012 9:55 am

scorpions wrote:I am sure 1 eye is working hard to locate something in the study that calls it into question. If all else fails it can always be blamed on a neurologist! After reading specifics of the study I think there were some minor flaws but overall it appears to have been ran in an objective manner.

Sorry, I prefer a study of the size of Brad Wall's to this one, for reasons of size. Not worth further discussion, since Saskatchewan is underway. What difference would it make who I blamed for anything? For what it's worth, I think neurologists in general may be victims of circumstance...
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Re: more of the same

Postby MrSuccess » Fri Jun 08, 2012 11:35 am

this report is sadly lacking details . MrSuccess sez: Apart from the names of the patients ..... let's start with WHO and WHERE the Liberation treatment was offered.

It is always wise to ..... " Look for the Truth in the LIE ..... and the LIE within the Truth"



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Re: more of the same

Postby Gardenia » Fri Jun 08, 2012 11:51 am

I wouldn't put my faith in a Neufie neurologist for all the tea in China.
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A new approach?

Postby MarkW » Fri Jun 08, 2012 12:29 pm

Hello Canadian CCSVI advocates,
My approach would be to rubbish the study (did not diagnose and treat all stenoses; no leading edge expertise in Canada on CCSVI; etc etc). Then present a dossier of global studies to Federal Ministers and Senators. Focus on safe treatment of CCSVI syndrome and not liberation from MS.
Lots of work,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: more of the same

Postby tiltawhirl » Fri Jun 08, 2012 3:29 pm

Yeah I have experienced these so-called meager benefits first hand. They are definitely not worth the risk.
:?

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Re: more of the same

Postby MrSuccess » Fri Jun 08, 2012 8:22 pm

unless this Neuro is willing to name names ..... this report is worthless.

Did these people undertake treatment at recognized CCSVI clinics ?

Or ..... Fly by night ...... CCSVI quicky marts ?

I'm calling this guy [ Neuro ] out. Give us the names of the CCSVI clinics.

In the event legitimate CCSVI medical professionals were involved ..... I'll wager they may have a different story to tell. Probably the standard 33 .... 33.....33 ..... outcomes.

Dry behind the ears .......

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Re: more of the same

Postby Jugular » Sat Jun 09, 2012 10:32 am

Most MS research is measured against the clinical outcome of slowing or halting progression. But CCSVI treatment can be completely dismissed as valueless if it doesn't cause marked disease reversal?

Here we have one neurologist seeing this small group of chatty Nuffies who are likely to let something slip that would allow a clever neurologist to figure out which ones had the procedure. And then none of his test subjects (control or otherwise) had any improvement? None? Zero? Really?

When I saw my neurologist after my procedure, he made no note of the fact that my planter reflex had returned to downward, after 10 years of being upward and then wrote "no change" about my condition in his clinical note. The MS clinic specialist (who is a rabid anti-CCSVI crusader) attributed my having improved my 20 ft walk time by 100% to a training effect (which I wasn't able to get all the other times I was tested before in spite of any training). When I showed her how I could open my hand where I couldn't before, she asked me to do it rabidly - which I couldn't. "There" she said to me "no improvement".

Before these so-called experts start accusing us of being placebo suggestible flakes, they need to work on their own biases and call balls which cross the plate in the strike zone as strikes.
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