This Is MS Multiple Sclerosis Community: Knowledge & Support

The Ontario government has announced an "expert panel" to advise on follow-up care for people treated outside the country.

I hope the "expert panel" includes real experts in CCSV and is not another sham "expert panel" like the CIHR one which rejected clinical trials. There is no mention of what patients and physicians should do in the meantime when there are complications!

Here's a link to the article:

http://www.healthzone.ca/health/newsfea ... lp-at-home

"Barry Rubin, medical director of the Peter Munk Cardiac Centre in Toronto and Paul O’Connor, director of the MS Clinic at St. Michael’s Hospital."

My follow up care is ultrasounds by Dr. MacDonald's team, not available under Ontario Health Insurance. Isn't Ms Matthews rather trying to draw a horse with a cart? Have either of these people been to Ferrara, and seen how it even works? I thought this was CCSVI, not MS! Neurologists doctoring veins again. Oooh, I'd be careful of those guys... MS clinics are not *my* favorite place.

A cardiologist, wondered when we'd hear from them... I told the guy who put in my cardiac stents about CCSVI procedures and he was not interested in the least. He recognized that it belonged to a different specialty and didn't mean neurology. Of course he had heard more about it by my last appointment. BTW he discharged me!

But maybe they have to go through some kind of motions before deciding to cover it again. Oversight from neurology in case anyone thinks this might be an endorsement?

Will this mean I get the money back?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Well, no surprise. Some of the "experts" have been outspoken against CCSVI and about Canadians seeking treatment outside of Canada. Dr. Spears was on the very flawed CIHR expert panel who rejected clinical trials.

On a positive note, Dr. Laupacis said the CIHR panel "had several deficiencies" and was too narrow in its approach. Dr. Laupacis also called for the CIHR to involve the public in "scientifically based but patient relevant and emotionally charged issues" where science, advocacy and policy-making intersect. So, perhaps there may be one voice of reason on this latest panel.

Here's the list:

* Dr. Barry Rubin, medical director of the Peter Munk Cardiac Centre

* Dr. Paul O'Connor, director of the MS Clinic at St. Michael's Hospital

* Dr. David Henry, president and CEO of the Institute of Clinical Evaluative Sciences

* Dr. Marcelo Kremenchutzky, director of the MS Clinic at London Health Sciences Centre

* Dr. Julian Spears, co-director of the neurovascular program at St. Michael's Hospital

* Dr. Liesly Lee, consultant neurologist at the Sunnybrook Health Sciences Centre and director of the Sunnybrook MS clinic

* Dr. Andreas Laupacis, executive director at Li Ka Shing Knowledge Institute at St. Michael's Hospital.

From a FB page, about the CIHR panel, who made the infamous "decision":



But this latest panel of Inquisition is laden with neurology when this follow-up care is vascular. I smell a little jockeying going on here. Where are the nutritionists? Where are the caregivers? Do any of them have a loved one who has CCSVI? Or had the procedure? Have they deliberately excluded anybody who knows anything about CCSVI from this one too?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

It appears that's exactly what they have done--once again!

Sounds like another good excuse for the usual suspects to have a few more meals on the taxpayer's nickel.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I am really really angry at how this committee, formed to develop the best follow up after CCSVI procedures, has so little interventional radiology expertise on it much less CCSVI knowledge.

That is absolutely ridiculous.

LET MS. MATTHEWS KNOW WHAT YER FEELIN'

Dear Ms. Matthews,
ccu.moh@ontario.ca

Re: Province looks at aftercare for MS patients

I'm concerned that there are too few vascular specialists on your panel vs. neurologists, who appear to be in abundance. Perhaps a Canadian doctor (Sandy MacDonald) who has treated people for CCSVI might be included in your esteemed panel??

Regards, PN

A Canadian neurologist recently said the following: "Some of the interventionalists like Dr Sandra McdDonald in Barrie have maintained that the problem is vascular, not neurological, so they should be permitted to proceed with diagnosis and management

Since we are the ones doing all the 'killing', we should at least be the ones deciding how to stop it.

Sd that same Canadian neurologist wrote to his patients " Since death is also a risk, then I ask those individuals to strongly consider advising their family of an advanced directive for an autopsy. We should maximize every learning opportunity"'

some physicians must be getting sued over lack of aftercare for patients...College of Physicians and Surgeons have put pressure on government to do something.....again, wrong people on the panel.....but at least CCSVI is becoming something they can't ignore.

Outrageous! Statements like that and the way some Canadian neurologists are speaking to their patients makes me ashamed to call myself Canadian. But, I think Dr. Hubbard also said something about being embarrassed to call himself a neurologist right now. So, maybe it's the profession and not the country--except that neurologists are wielding too much power on this issue in Canada.

Dr. S. I know you cautioned us a while ago not to whine about neurologists. But, the statement you posted speaks for itself. Has he written a similar letter to his patients taking Tysabri? Many more cases of recorded deaths there.

Not one member of this non-expert panel has any experience in testing or treating CCSVI. Ontario MS sufferers need to write to Deb Matthews and express concern if not outrage at yet another panel that excludes the real experts and that simply carries on the work of the CIHR/MS Society alliance.

who picked this panel?..Deb Matthews and cohorts would have no clue who to choose....MS society, perhaps...I'm sure they were consulted.

Paul O'Connor is on the Medical Advisory Committee of the MS Society, he was a member of the CIHR/MS Society non-expert panel along with Dr. Rubin, the token vascular specialist for that group; I would have to check to determine if the Ontario non-expert panel also includes participants in the CIHR/MS Society non-expert panel but I suspect, yes. The point is that the Keep CCSVI Out Club is alive and well.

We are caught in a vicious circle. Whenever someone e.g. media wants to know about CCSVI, their first stop is th MS Society, naturally. Then the Society refers them to one of the many neurologists that sit on one of their advisory boards. My conversations with our favourite Society has revolved around the lack of representation of vascular peeps. I'm sure that no such person wants to sit as a lone vascular doctor in a den of neurologists. You think this might be the reason that nothing has happened in the Great White North?

I think if we have any energy, we should keep up pressure on our local MS societies. From personl contact with one local president, I think they are feeling sandwiched between pwMS and neurologists. Vote for pro-CCSVI board members!! Stay Involved.

I personally keep my friends close and my neurologists closer. Think Gandhi.