This week, we've had a very black and white demonstration of the issues behind the manufactured "CCSVI controversy" and why there is no movement in the research of this vascular condition.
On the one hand, we saw Annette Funicello's lack of venous flow, as reported by Dr. Donald Ponec. Standing in front of CTV reporter, Avis Favaro, and the images of Annette's jugular veins, Dr. Ponec discusses her case. Annette had only 30% flow through her right jugular vein and absolutely NO FLOW through her left jugular vein. Beyond that, the blood was refluxing on the left side of her brain, traveling through her brain and over to the right side in order to exit. No one, including Dr. Ponec, has any idea how long this flow pattern was happening in Annette's brain, nor how a disturbed blood flow pattern like this could potentially harm her brain. All we know is that this is not normal, and slowed perfusion harms brain tissue.
Annette Funicello has CCSVI.
link to CTV story
After venoplasty treatment and a restoration of normal flow, her husband Glen sees color return to her face. She can now swallow on her own, her breathing is less labored. And we can only imagine what might have been if this brilliant woman had been diagnosed and treated in the beginning stages of her disease.
Was this story of America's sweetheart covered in the American press?
No. Not even one word.
How ironic that this story has to be told in the Canadian press.
Instead, what we hear in America is the Reuter's report of death, destruction and the inability of any researchers to find anything resembling CCSVI. It is a myth, and the ECTRIMS conference will prove this! Beware, all ye who seek to study and understand CCSVI. (This message comes to you thanks to the sponsorship of the international conglomorated pharmaceutical industry.)
Thomas Reuters Pharma division
ECTRIMS 2012 is grateful for the sponsorship of Bayer, Biogen, Genzyme, Merck Serono, Novartis, and Teva
link
What can we do about this?
Please take heart. We still have researchers looking at the connection, and they are not stopping. There is one FDA approved clinical trial in the US, and we trust there will be more.
Please support groups like CCSVI Alliance link , the Annette Funicello Neurological Research Fund link and the National CCSVI Society link . If you feel your charity dollars are being wasted at the National MS Societies----give to these groups instead. These independent groups are not supported by pharmaceutical companies, they are run by volunteers and they are looking for answers beyond the EAE model of MS.
Most importantly, take care of yourselves. Live the best, heart-healthy life you can. Be living testaments to the power of endothelial health, good blood flow and healthy cerebral perfusion. Learn about oxidative stress and how to combat it. Find out your vitamin D levels. Ask your docs how your gray matter looks on MRI. Be inquisitive patients.
But most of all, hang in there.
MS is a devastating disease. We've been involved in each other's lives over the past three years, and we've seen many of our loved ones and new friends progress and hurting. We owe it to each other to continue the pursuit of INDEPENDENT RESEARCH into the aetiology of MS. I'm exhausted by all of this created "controversy", and I don't even have MS. But Jeff and I will continue to advocate for more research. Because we see the evidence of Dr. Zamboni's discovery in our own lives, every single time Jeff wakes up refreshed, goes to work, mountain bikes, walks the dog, stays out late with friends. We see it on his MRI. And we want this reality for others.
Joan
