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Shorter CCSVI explainer: Time to liberate liberation treatment


 

Last week’s shut-down of the Albany, NY clinical trial investigating CCSVI treatment due to lack of patient enrollment is a big set-back on a number of fronts. It’s bad news for the Saskatchewan government, which allocated $2.2 million and recruited patients to travel to the U.S.—and a  blow for those who’d taken part in the trial or were lined up to go. But, like all failures, it’s instructive.

The lesson here? That the best thing for CCSVI research moving ahead would be for the so-called “liberation” treatment to finally be liberated from MS itself.

Maclean’s talked to the people behind the trial, including Saskatchewan health minister Dustin Duncan, principal investigator Dr. Gary Siskin and Saskatchewan MLA Mark Docherty, who has been treated for CCSVI twice. The reasons for cancellations are both systemic and circumstantial–dating back to CCSVI being introduced in media as a “cure” for MS. That set off a chain of events—medical turf wars, research that conformed to drug-research protocols, a disconnect between science and patient experience.

“I think the one thing we can all agree on is that the burden of proof has not been met when it comes to CCSVI yet,” Siskin told Maclean’s.

What emerges is a story of continuing interest in CCSVI research as well as backstage drama: The Saskatchewan government, warned in July that the trial could be cancelled due to a lack of U.S. participants, tried to keep it afloat. Duncan reached out to provincial counterparts to ask them if they would help recruit volunteers, with no luck.

Now Saskatchewan is sitting on slightly less than $5 million earmarked for CCSVI research. Meetings are planned with patients and other “MS stakeholders” to figure out the next move, Duncan says: “Research may involve the “liberation” therapy but we’re realistic that may not be possible in a research context, so we may be looking outside of liberation.” And that would be the ultimate irony.

Longer story: here. 


 

Shorter CCSVI explainer: Time to liberate liberation treatment

  1. You may have written this awhile back and it’s just being published now, but the cancellation was not announced last week — government of SK news release was September 9, and it came out slightly behind the Albany announcement.

  2. Thank you Anne Kingston for further explanation in this very frustrating situation. I have never heard of procedures being treated like this before. If this would have been the case … Heart, kidney and even face transplants would not exist today. Have you ever heard of a double blind study on these procedures? Nonsense and idiotic how this is being treated. This shows volumes on how these Multiple Sclerosis Societies do not advocate for their patients but for Big Pharma. This is not a MS issue but a vascular issue. As long as these MS Societies have a stranglehold on us they will continue this charade.

  3. Everyone in CANADA deserves CCSVI , you are one of the best journalists on this too and have always done so much work for MSers in CANADA . I admire your dedication to help. Everyone knows whats really stopping MS patients getting the help they deserve . Its sick to the core whats going on with many accountable for NOT moving new directions and for the promotion of dangerous MS drugs for profits , shares and commissions on this has gone on too long. Its only right now that many are helped worldwide with unblocking their necks, just as heart patients have angioplasty thats never denied.Its so easy to work out whats really happening and whos involved too . Many people are playing mindless games with MS patients which is disturbing and disabled discrimmination . The list is endless

  4. Spend $4.5 millions sending about 400 Saskatchewan ms ers down to the USA to get their symptoms fixed. and spend a $half million following them up. That is by far the best way to use the money. Once and for all you will know that the procedure works and after a $half million worth of followup you can figure out WHY it works. It is glaringly obvious to me that it works because my wife got it done.

    • Brian, glad your wife is doing well. I live here near Albany NY and had it done back on 10/19/2010 by the Siskin’s group. I feel GREAT. Most of my symptoms are gone and I can contribute back to society and be one again with my family. We all know the REAL reason why this was stopped. If they wanted recruits from the USA, I for one didn’t see any flyer’s or mailings asking for volunteers??? Your idea is a no-brainer by the way, but those (FDA & MS Societies) and BIG PHARMA are the real criminals behind this.

  5. I have talked to my Danish doctor, who adviced me to go to a private clinique, and ask them to make a total angiografy.
    And then go to the publich healtcare and demand that they repair the system, so one can recieve 1 ltr. of blood pr. minute to ones brain.
    I should not mention MS to the private clinique while I was having this done…
    The doctor said that this would force the government to treat me, or admit that they am allowing murder on patient, because a patient will never bee cured, if the change of blood doesn’t happend firm and swiftly under the right condition.

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