Sunday, May 27, 2012

New Health Canada Warning About Tysabri

Here is an interesting e-mail I received the other day:
Hello Ted,
As someone who blogs about MS, I thought you may be interested in sharing the following information with your audience.
Health Canada has approved a change to the TYSABRI Product Monograph to assist physicians and patients with multiple sclerosis (MS) make better-informed decisions about treatment with TYSABRI - for patients with relapsing-remitting form of MS. 
The new label identifies anti-JC virus (JCV) antibody status as a risk for developing an uncommon, but serious, brain infection known as progressive multifocal leukoencephalopathy (PML). 
The new label states that:
·         Anti-JCV antibody negative status indicates that exposure to the JC virus has not been detected;
·         Patients who are anti-JCV antibody positive have a higher risk of developing PML;
·         Patients who are anti-JCV antibody positive, have received prior immunosuppressant (IS) therapy and have received treatment with TYSABRI for more than two years have the highest risk of developing PML.

Kind regards,
Rick Maddalena
Do any of my readers have experience with Tysabri that they can share?

Friday, May 25, 2012

MS Society-funded Study: No CCSVI in MSers!

Contradicting most other studies worldwide, a MS Society-funded study found LESS CCSVI in MSers than in the general public: see CCSVI Facebook page.  This makes it easier to believe the paranoia concerning the real goals of the US and Canadian MS Societies in funding research into CCSVI.

Wednesday, May 16, 2012

When CCSVI Treatment Doesn't Help

Some encouraging words from Marie: Facebook Page.

Diet for Healthier Mitochondria?

Has anyone else with MS tried the "hunter-gatherer" diet to alleviate MS symptoms and (perhaps) heal myelin?  If so, please let me know about it.  In any case, you might want to see this TED talk by Dr. Terry Wahls concerning her experience with it as an MSer and a reseracher:

Tuesday, May 15, 2012

AXON Course

For MSers in the Fredericton area: there's still room in the AXON course I discuss below, and they'll still take you up until this Thursday if you want to join in.

Medical Marijuana for MS

A CBC story about MSers using marijuana to alleviate spasticity and pain:

Friday, May 11, 2012

FDA Ruling Smells Fishy

All folks following the CCSVI story will have heard the news about the FDA ruling concerning the "danger" and "lack of evidence for the utility" of the treatment. Sounds like an argument that Big Pharma and some scared neurologist/researchers were using two years ago: you'd think that they'd making it sound like it wasn't written by the same scriptwriters.  After all, tens of thousands have been treated with no more complications than could be expected from normal angioplasty and venoplasty, which is done every day to treat other conditions.  The "lack of evidence of efficacy" is because the big studies haven't come in yet.  It would be interesting if a good journalist would follow up on this to find out how this strange ruling came about.  Maybe then we'd find out more about the mechanisms and FDA officials that allow dangerous drugs on the market simply because they have the backing of big drug companies.

MS Awareness Month

A speech by Liberal senator Jane Cordy made on Wednesday, May 9th in the Senate Chamber regarding Multiple Sclerosis Awareness Month:
 Hon. Jane Cordy: Honourable senators, May is Multiple Sclerosis Awareness Month. As you all know, multiple sclerosis is the most common neurological disease affecting young adults in Canada. Most people with MS are diagnosed between the ages of 15 and 40 years of age, and the unpredictable effects of MS last for the rest of their lives.

There is groundbreaking research being undertaken in more than 50 countries around the world in the area of CCSVI for MS patients. Indeed, venous angioplasty is being done in over 50 countries in the world. Unfortunately, Canada is not one of them. These studies have shown measurable results in relieving symptoms for those suffering from MS through the improvement of blood flow to and from the brain. Enough evidence exists that we need to look at this treatment more closely and to figure out what is valid and what is not regarding our understanding of CCSVI and MS. Canada owes this to the thousands of Canadians and their families who are afflicted with this disease. Canada should be contributing to this research with our own Phase II clinical trials.

Honourable senators, we need the science. We need the "made in Canada" evidence.  It has been almost a year since the federal government announced it would begin the long process to allow clinical trials here in Canada, but their efforts have fallen far short of what is required and progress is at a standstill.

The MS registry was announced in March 2011 by Health Minister Aglukkaq, and yet information will not be collected until September 2012. We will have lost 18 months of data.

Just as member of Parliament Kirsty Duncan has been doing in the House of Commons, I have been working to raise consciousness about MS in the Senate with my Senate private member's bill, Bill S-204, which seeks to establish a national strategy for CCSVI, and with my inquiry on MS and CCSVI.

As this is Multiple Sclerosis Awareness Month, I urge honourable senators to examine closely the issue of MS and CCSVI so that one day in the near future, Canadian MS patients can benefit from "made in Canada" research and treatment. Honourable senators, talk to those who have MS and listen to their concerns. Canadian MS patients should not be forced to travel to the United States, Europe, Mexico or Poland to be cared for and treated for MS. Canadians expect, and rightfully so, to be treated and cared for in Canada by Canadian doctors. Our government should not be promoting medical tourism.