MS trials

 I think this article is a but misleading or at least a bit confusing.  I was looking at it further and the MS society is involved along with US MS society in funding several studies about this treatment as well as having a group follow the results of other studies and research occuring in other parts of the world so they aren't saying forget about it altogether.   If I get the gist right from piecing together a bunch of information from different places this 'no' is about conducting a large scale theraputic trial at this time which to my lay person understanding is a particular type of study. The 'no' is more a 'no not yet until we get more results' from the other research studies and more information on whether to conduct this larger type of theraputic study.  

Whether that's a good or bad thing I don't have enough knowledge to form an opinion on at that time.  

However and this is where I will fully admit my personal bias and hope that this treatment isn't just sluffed off altogether without some fairly serious looksee because anecdotally 'something' is going on.    I know of at least two people who have traveled on their own dime to get it done.  With one person I've seen the results with my own eyes and the before and after is pretty cool.  This person has gotten so much mobility and control back and couldn't be happier with the results.  Difference between a wheel chair most of the time and only one usuable hand to walking much more and the hand at least functioning as a hand should.  As the weeks go on this person is seeing more slow improvements.    The other person I haven't seen with my own eyes but has also apparently seen marked improvement in symptoms.   Recently there was an article in our local area paper which covered a few other people who have gone to various parts of the world, had it done and see various levels of improvement.  There are several more people fundraising to do the same.  

I've read various opinions about this treatment that run the spectrum from complete quack science to it's onto something.  I've read that the 'it's a bunch of quack' say the improvements that people do have after getting it are just the results of a placebo effect.   Well in my opinion that is a some powerful placebo and if a placebo like this can get someone from a wheel chair to walking again (even if it's only happening to some people) that in itself is something to look into.  

The Canadian government will not fund a clinical trial of the so-called liberation therapy for multiple sclerosis at this time, Health Minister Leona Aglukkaq says.

Aglukkaq spoke to reporters in Ottawa on Wednesday, a day after a panel of North American experts announced they unanimously recommended against supporting a clinical trial of the treatment in Canada as yet.

Read more: http://www.cbc.ca/health/story/2010/09/01/ms-ccsvi-liberation-aglukkaq.html#ixzz0yIozJGWn

There are some interesting conflicts surrounding liberation therapy, pharmaceutical research, research funding in general, between medical disciplines and MS sufferers and the groups that purport to support them.  Fascinating stuff.

No doubt Zamboni would prefer to see people assessed properly and part of clinical trials.  There's no way to properly assess the benefit (or not) of the treatment without it.  Also, clinics are springing up in places where there are few controls and oversight, and although some will be perfectly fine, I'd be shocked if some of them aren't scamming the vulnerable.

There were a couple of cases where stents were used, although some (including Zamboni, I think) are saying stents are a bad idea in veins, which are more malleable than arteries.  Stents are commonly used in arterial/cardiac surgeries.  Anyway, both serious cases (out of California?) involved stents being put in and then dislodging.

Part of the problem is that MS patients are being denied screening for vein blockages in Canada.  So they have to travel first. 

The trouble is the stents were designed for arteries, not veins, and have not been tested in veins.  When a cardiac patient has stents put into their coronary arteries, their aftercare is also important: they are given clot-busting drugs, like Plavix and ASA, for a period after the stent is installed, that has been verified by clinical trials.  

So you've got stents being put into blood vessels for which they have not been designed, and maybe the patients haven't been getting the correct aftercare, with respect to the drugs I mentioned (again, though, the drugs have not been tested in this specific setting; ie, putting an arterial stent into a vein).  There are too many unknowns.

But if I were losing my ability to walk, I don't know if I'd be willing to wait until all the experts weighed in.  This seems to be a unique situation that calls for some leadership from our health minister or prime minister, other than washing their hands of the whole affair by saying there's insufficient evidence to allow the procedure to be performed in Canada. 

This is my concern as well.  I intended to write more on this topic today - here it is:

Some history: as reported by MacLeans, a panel of 23  medical people and 3 observers met in the Ottawa offices of the Canadian Institutes of Health Research on August 26, 2010.  This group makes recommendations on the federal funding of medical research.  In an 8-hour meeting, they decided that it is premature for the federal government to fund research in "liberation therapy."  Six days later, federal health minister Leona Aglukkaq announced that the government accepted the recommendations of this panel in the interest of patient safety.

Okay, my concern: this government has a record of disrespecting the advice of scientists.  Granted, that doesn't mean they are automatically always wrong about everything, but consider, for example, how they ignore overwhelming climate science, or all the evidence in favour of Insite, Vancouver's safe injection site, because this evidence contradicts the conservative agenda.  What does not contradict a conservative agenda is denying public funding for properly-conducted studies into a crippling and potentially fatal disease in favour of allowing patients to submit themselves to what is essentially free-market research, paying their own way to get treatment in less regulated countries such as Costa Rica, Poland, India, and the United States.

The evidence for this procedure thus far is pretty weak: there's a good post over at Science-Based Medicine:

http://www.sciencebasedmedicine.org/?p=6465

And here's an interesting blog by a Montreal cardiologist, who feels that the treatments are a sham, and patients are experiencing either the placebo effect, or a spontaneous remission in a disease that is characterized by exacerbations and remissions:

http://medicalmyths.wordpress.com/

And here is a thoughtful editorial from the Journal of Neurointerventional Surgery.  Here's what the brain surgeons say:

http://jnis.bmj.com/content/early/2010/10/23/jnis.2010.003947.full

At the end of this editorial, which is largely sceptical, the authors say the following:

Instead, the government won't fund studies, (though the MS society is).  So we've got a situation where large numbers of patients are going overseas, and then posting about it on the CCSVI Facebook page and their blogs.  We're ending up with a huge amount of anecdotal evidence that is scientifically useless.  And I predict more patients will die.

What the government needs to do is fund an investigation into the role of CCSVI in MS, and follow that with randomized clinical trials into the procedure if the data on CCSVI appears to play a role: that's what the brain surgeons say.  To be fair, the evidence is conflicting and weak.  But considering that Canada has one of the highest rates of MS in the world, for the government to wash its hands of involvement in the whole Zamboni matter is doing a disservice to MS patients.

The brain surgeons say, there's no role for the CCSVI-based treatment outside randomized controlled trials.  I'm no nuclear physicist, so instead of contradicting the brain surgeons, I say Canada can take a leadership role in studying this theory, and maybe debunking it once and for all, if that's what the evidence suggests.  

Recall the brain surgeons said this:

Examining the international data, as they say they will do, is appropriate.  But why not do a non-invasive study or two, such as MRI studies perhaps, to see if there's a relationship between CCSVI and MS?  That's the most conservative measure least likely to cause harm.

I'm saying that Canada could contribute some data, in the form of trials, rather than just analyze data from other countries.  We have one of the largest pools of people with MS to work with:

http://www.mult-sclerosis.org/ms_world.html

The New Brunswick government will set up a fund to help people to pay for a controversial multiple sclerosis treatment despite the death of an Ontario man who travelled outside of Canada for the procedure.

Mahir Mostic, 35, of St. Catharines died on Oct. 19 after complications from the MS treatment that he received in Costa Rica.

The Progressive Conservative government announced in its throne speech that it will create a $500,000 fund to help MS patients seeking treatments

Read more: http://www.cbc.ca/canada/new-brunswick/story/2010/11/24/nb-alward-ms-treatment-fund-520.html#ixzz16CY4SIil

Once again, a government is being reactive rather than proactive, responding to political pressure instead of taking leadership.  Rather than just funding this treatment, which is far from being proven as having any benefit at all, the government needs to fund trials looking at the role of blocked veins in the cause/worsening of MS.  By funding trials rather than treatment, health ministries can actually contribute something constructive to answering the questions around CCSVI, AND provide treatment at the same time.  This is what is done in cancer care.

 I think we have to consider the medical industry's resistance to anything that "cures". They are all about treating symptoms on an ongoing basis. A "one treatment" therapy is simply not in their best [financial] interests. The medical industry has a well-funded lobby to influence government, and if this treatment is a threat to their bottom line they would ask government to not fund these treatments.

  But just how much profit could one illness, MS, really mean to the medical industry bottom line?  MS patients often take several medications every day, and maybe it does add up to enough to be of concern to the medical industry.

  I know, I know... that is a very negative view of modern medicine, but it should be considered when asking why governments are hesitant to fund this MS treatment. After all, it seems to work well for many MS patients... in fact, most MS patients who get the Zamboni treatment stop taking most of their medications [at least from what I have seen in interviews on TV with MS patients who had the proceedure done].

 Just sayin'....