MS liberation therapy fund should end, Parrott says

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MS liberation therapy fund should end, Parrott says

Postby erinc14 » Sat May 25, 2013 7:42 am

I've noticed you can't post a comment .

http://www.cbc.ca/news/health/story/201 ... rrott.html :-x
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Re: MS liberation therapy fund should end, Parrott says

Postby Cece » Sat May 25, 2013 11:17 am

But Parrott says the treatment, which involves opening up narrow neck veins, has since been proven "ineffective" and the fund, which has a budget of $75,000 this year, should now be rescinded.

Proven ineffective. By an underpowered randomized controlled trial of nine treated patients, whose blood flow did not show improvement over the control group and so could not be tested for the effects of improved blood flow, since that did not occur?

It also has not been proven effective, and it is entirely a matter of public policy and it is not clear one way or the other if the travel fund should exist. Certainly I am happy that it has been available for those who can meet the terms of privately fundraising the amount required. It has not been widely used so maybe it is either not known about or those are too high of requirements or everyone who wants to get the procedure and can mostly afford it has already done so?
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Re: MS liberation therapy fund should end, Parrott says

Postby MrSuccess » Sun May 26, 2013 12:47 pm

..... and that's what parrots do ... :lol: ..... just repeat what they hear

seriously now ..... I understand the need to thwart those opportunist's out there that are praying on vulnerable pwMS. This is why there is such an immediate need to 'educate' each other as quickly as possible in all things CCSVI.

A good start is to keep up with all the information available with CCSVI.

Until we learn more ..... the success rate is estimated at 33% improvements after CCSVI treatment ....... 33% no better nor worse ....... 33% ms symptoms continue.

66% is sure as hell better than any DMD can claim as helpful.

I am certain Dr.Parrott means well enough . As a Scientist he wants proof . As do I. And the only way to provide proof is to produce MEASUREABLE data results. I am pleased to say that methods and measuring tools and equipment are under construction.

The MRI was invented in about 1985. It has evolved and improved since then. Today , in it's most up to date form ...... it is only 98% accurate. That 2% is important.

I am very curious about pwMS diagnosed BEFORE 1985. I see an important milestone in MS treatment . Has the MRI helped or hindered pwMS and other neurological problems ?

We have more questions than answers in CCSVI. Dr.Parrott should know that.


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Re: MS liberation therapy fund should end, Parrott says

Postby vesta » Sun May 26, 2013 1:06 pm

I was diagnosed 1980-1981 without the MRI. Lucky me. I turned at once to alternative thérapies which worked (in San Francisco). I consider myself lucky because once one gets trapped into that whole MRI, spinal tap etc diagnosis system which leads inevitably to Medications, all without any real proof they "work" it's hard to escape without a confrontation with the Neurologist and lots of self doubt. I was told the MRI couldn't determine degree of handicap, so why bother once the diagnosis has come down. Every Tom Dick and Harry Neurologist thinks he is going to "discover" the cause of MS by puncturing your spine a few times. Once the Diagnosis has been made, I believe one should wait at least a year before starting medication, and in the meantime inform oneself and begin alternative therapy - thérapies to stop the blood reflex, diet, etc - which in many cases will obviate the need for medication. That way one can put off the Neurologist - politely- and give oneself time.

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Re: MS liberation therapy fund should end, Parrott says

Postby David1949 » Sun May 26, 2013 4:13 pm

I was dxed by two neurologists, one using MRI and one using spinal tap. But I haven't been to see a neurologist for ten years, and I never took the drugs. Why should I? They have absolutely nothing for PPMS.
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Re: MS liberation therapy fund should end, Parrott says

Postby MrSuccess » Sun May 26, 2013 5:04 pm

I would venture a guess that there has been an explosive number of people being labeled as having MS ..... since 1985. After all .....the word means - Multiple Scars -.

And there they are for your viewing . Now which drug would you like ? ..... :twisted:

FACT: Brain lesions are COMMON in the population at large. So ... not a really good thing to base any DEFINITE medical diagnosis on.

FACT: The National MS Society - on their webpage - state quite clearly that white brain lesion matter have been routinely discovered -ON AUTOPSY- on cadavours that were considered of being in good health , until death.

Take away the MRI , take away the ' o bands ' , and what are you left with ? Both of these tests and markers can be caused by other conditions. Such as Lyme Disease.

There is no blood test for MS . Nor is there one for CCSVI.

Make no mi$take about it .... there is an amazing amount of money made [ DMD'$] all marginally based on some white specks on your family photo. :-x

Once again , the numericals will tell the true story.


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looking for mr. push-back

Postby 1eye » Mon May 27, 2013 8:19 am

This is typical of the CBC. They will unquestioningly print anything a politician tells them to, without due diligence, or fact-checking. They don't know that many governments use them and the print media, to gauge how much push-back there is. I would like to see the stats the doctors of New Brunswick have gathered on these travelers, the actual success rate of these foreign procedures, and how much actual taxpayer $ they have been spending.

$75,000 is an interesting number. I would guess there are more than 25 MS patients in NB. It used to be thought there were only 75,000 "MS" patients in Canada. At $10K a pop that would take care of about 8 people, maybe. But if they spent more than $5k each they would have to pay the rest out of whatever else they could raise, because that's where the measly budget would fail each individual patient, and it would only help them at all if they'd managed to scrounge $2500 in "community donations".

Christopher Alkenbrack reckons there are actually 3900 in NB. At $6,000 per, that would be over $20 million. Not $75,000. If they paid 100% that would be 12 and a half people. They don't pay 100%.

My guess is that they have exactly zero idea how well the patients did, and that strangely few of them bothered to ask the government for the money anyway. Bet there were lots of neurologists recommending the trip to their patients. That's why they have to ask the CBC. They certainly won't get the truth without asking the patients themselves. With that budget, the job should be fairly easy. Certainly easier than reading Dr. Zivadinov's papers, rather than relying on UofB press releases, bought and paid for by corporate sponsors. But perhaps too hard for the average health ministry.

Let's say 100 people applied. The trips were cheap, at $6000. That's $600,000, if only 100 "MS" patients went abroad.

But the government will only pay $2.5k if you got donations in that amount. If every one of the 100 did do that, it would run out after $75,000/$2,500 = 30 people. So the fate of CCSVI in New Brunswick would rest on a sample size of 30. If they bothered to ask the patients.

This story is meant for the average CBC consumer/taxpayer, NOT us. NOT "MS" patients. No one tells the truth about us. Very few journalists even want the truth about us.
"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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