Media Coverage on CCSVI!!!!!!!!!

[TMrox]

Canada’s top medical journal is urging politicians and health officials to take a cautious approach toward providing access to a new and not yet well-studied procedure to treat multiple sclerosis.

http://www.theglobeandmail.com/life/hea ... le1621494/

[TMrox]

MS patients create own informal experiment, going in droves for unproven therapy

http://www.winnipegfreepress.com/life/h ... 14584.html

[TMrox]

Researchers at the University at Buffalo are about to launch North America's first clinical trial to test the "liberation treatment," an experimental therapy designed to halt the symptoms of multiple sclerosis.

The landmark prospective, randomized, double-blinded study will test both the safety and efficacy of the endovascular therapy on MS symptoms and progression.

The researchers will examine whether dilating blocked neck veins in MS patients using angioplasty remedies the blockages and improves MS symptoms or progression.

The first leg of the University at Buffalo trial will take two days and will begin Tuesday. Ten patients have already been selected to receive the treatment. They will then be followed for 30 days of analysis to measure the side effects and possible risks of the procedure.

The study will be led by Dr. Adnan Siddiqui and colleagues at the University at Buffalo's Department of Neurosurgery.

http://ottawa.ctv.ca/servlet/an/local/C ... OttawaHome

[TMrox]

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

If angioplasty is proven effective at improving MS symptoms, the resultant implications for the future of MS treatment could be monumental.

http://www.prweb.com/releases/2010/06/prweb4199404.htm

[MS_HOPE]

http://www.nytimes.com/2010/06/29/health/29vein.html?hp

I haven't even read all of this story yet, which was front and center on the NY Times website main page when my husband just visited there!

Not sure how to post whole story - help anyone??

This is a wonderful development!!

[BELOU]

Here is a letter from the College des medecins du Québec. It's in french.

http://www.cmq.org/medias/profil/commun ... nique.aspx

[drbart]

http://www.nytimes.com/2010/06/29/health/29vein.html?hp

I haven't even read all of this story yet, which was front and center on the NY Times website main page when my husband just visited there!

Not sure how to post whole story - help anyone??

This is a wonderful development!!

i dunno. given how late NYT is to the party, it's amazing how much they got wrong. and it's not like people haven't been sending them stuff or that they don't have actual reporters who can find things out.

• - the only mention of simka implies that he makes patients worse
  - the mention of the buffalo study says nothing about their flawed methods or that their control group included family members
  - there is no mention of the canadian parliament hearings
  - the only mention of dake is the aneurism - no mention of it being congenital or the successes of his program

[FlashHack]

I'd cut them some slack. Odds are the reporter wanted to mention such details but there just wasn't the space or perhaps an editor slashed it. It strikes me as a notch in the win column. The fact that it ended with a converted skeptic was priceless.

[AlmostClever]

Added to the Media thread:

2 Parts:




Enjoy!

[MarkW]

Print Headline (large+bold): 'It's a turf war, and we are the losers'
Daily Telegraph CCSVI feature on 12 July 10 page 23 by Liz Hunt.

Available online:
http://www.telegraph.co.uk/health/78823 ... elief.html

Alan 'famous at last' Browne wrote a personal piece on his experience, missing from online version. UK MSS comment is also included for completeness.

‘It is amazing to be a proper Dad again’
Alan Brown, [pictured right], is 43 and was diagnosed with MS in 2001. He lives in Milton Keynes with his wife and three young sons, where he runs an IT software company. He had two obstructed veins ublocked in May this year at a clinic in Poland.

“Two years ago things started going downhill. I had major fatigue, and weak legs and arms. I heard about CCSVI earlier this year and began researching it, emailing everyone I could about testing and treatment. I went to Poland in May [cost including flights and accommodation was £3,200], and they found a blocked right jugular vein and partially blocked left.

I didn’t notice anything immediately, except my left foot, which had always been cold, was warm.

I flew back and had to get a bus and a train back to Milton Keynes, but didn’t feel tired at all. That continued. Usually, I’d get home from work, sit on the sofa, have dinner, then go to bed exhausted.

Now, I get home, play with my boys, cook dinner, help put them to bed, do a bit of DIY –and I’m still not tired at 11pm. I still have MS, I cant’ walk very well or far, my hands are still numb, my arms still ache, but our lives are transformed. I have a new zest for life, my brain feels clear and alert. It’s amazing to be a proper Dad again.”
----------------------------

[Trine]

The Doctors tv show has CCSVI in MS as one of the topics you can vote for as a show topic. You need to register and activate your account before you can cast your vote (top right-hand corner). Altough it's currently third on the most popular list, it is low on votes compared to the the top two topics. So if we and everyone we know voted...

Anyway, here's the link:

http://www.thedoctorstv.com/produce/vot ... no&sug_cat...


/

[Onthelake]

Here is the latest on Dr Sandy MacDonald....great news.

County surgeon to pursue MS trials

County surgeon to pursue MS trials. “I’m working with colleagues to design a double-blinded study for assessing Chronic Cerebrospinal Venous Insufficiency and its treatment,” said county cardiovascular-thoracic surgeon Dr. Sandy McDonald. SIMCOE COUNTY - With health officials clamouring for more scientific research before green-lighting the new liberation treatment for multiple sclerosis (MS), local supporter and cardiovascular-thoracic surgeon Sandy McDonald is stepping up to provide it.
“I’m working with colleagues to design a double-blinded study for assessing CCSVI and its treatment,” he said, anticipating a more extensive test group than the preliminary trials first published by pioneering Italian vascular surgeon Paolo Zamboni.
“We have two neurologists, three vascular surgeons and interventional radiologists interested in being involved.”
In the process of gaining Institutional Review Board approval, McDonald said the trial is moving forward as quickly as possible, but “we have a lot of hurdles to get past before we get there.”
Zamboni rocked the global MS community last November by linking blocked veins in the head, neck and shoulders to the symptoms of the disease – a condition he dubbed Chronic Cerebrospinal Venous Insufficiency (CCSVI). He took his hypothesis a step further when his team performed balloon angioplasties to free the blood flow. The reported results, detailing alleviated MS symptoms, were groundbreaking.
McDonald traveled to Italy to study Zamboni’s unique vein-scanning techniques first hand to avoid the false negatives often obtained through more traditional imaging.
He has since provided the non-subsidized tests at no cost to patients or the health-care system upon physician referral to his Alliance Boulevard clinic.
The actual procedure, however, is currently not available in Canada.?
Earlier this year, McDonald requisitioned six MS-related angioplasties for patients showing the tell-tale vein abnormality and associated iron debris, with follow-up visits revealing encouraging results across the board.
Some reported increased mobility and speech, and another claimed no further symptoms at all.
One young man’s parents had installed an elevator in their house to help their son’s mobility prior to the procedure. Now he is not only able to climb stairs without hesitation, but McDonald reports his patient has since moved into his own home where he lives independently.
After the positive results in his first few cases, McDonald and the interventional radiologists who performed the procedure decided to take a brief hiatus to first establish a method of capturing the data and tracking the results in order to share their findings.
Although the timeframe has stretched on longer than he initially anticipated, the surgeon now hopes to accept qualified patients into a full-scale research trial, complete with a treatment arm, come fall.
In the meantime, McDonald said the approximately 1,000 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients – even if on a pay-per-service basis.

http://www.simcoe.com/community/simcoen ... cle/851147

[AlmostClever]

AM Buffalo News Segment 1

http://www.wkbw.com/programming/am-buff ... 22814.html

[AlmostClever]

AM Buffalo Segment 2:

http://www.wkbw.com/programming/am-buff ... 22949.html

Dr. Levy and Dr. Siddiqui

[erinc14]

Thanks