good find: Stroke of Insight

A Case for Clear-Eyed Hope

Why do people sometimes act like hope is blind? Sometimes we must have faith despite the surface. Sometimes that is all we have. I feel like that is brave hope. Other times we research, we arm ourselves with knowledge. Even still there are no certainties. It is much like a lottery ticket. You can't win if you don't play. We choose to hope over the alternative.

Believing helps make it so.

Dashing Skepticism

Why is skepticism healthy and hope false?

Both are gambles.

The trouble with the supposed concern expressed in the Toronto Star article is that it is not evenly distributed. No mention is made of drugs that are routinely prescribed and have many side effects, including death.

The concern that countless dollars are going to CCSVI is not paired with the acknowledgement that many funds have gone towards funding drugs and drug trials for years, fuelled by the auto-immune hypothesis that have lead us to dead ends.

It seems to me that the neurologists are quite happy with the role they have held in the MS story to date. Even though they haven't had many solutions to offer, apart from barely effective drugs, regular check ups and MRIs. I respect that some patients may be content with the status quo.

Many of the brightest med students chose this specialty.

CCSVI and treatment opens the door for a shared limelight.

Experts in imaging veins, Cardiovascular Surgeons and Interventional Radiologists have emerged as players. More expertise may be needed.

MS may now stand for Multiple Solutions. We may be entering a new era that requires many partners to collaborate. Maybe that was always the case unofficially, but neurologists may need to give up the top spot.

Healthy Hope, False Skepticism

I wanted to show my support for a fellow good fighter & MS Champ whose words speak for many of us. It is a response to an article that ran on the front page of the Toronto Star this past weekend.

Here is Peter W's response:

I feel I have to respond to your article "MS Doctors Attacked for their Skepticism".　　 Your article was irresponsible and misinformed its readers.　

I am an MS sufferer and I have been involved in educating myself regarding CCSVI, its treatment. I have been involved in promoting, unsuccessfully, access to treatment for Canadians.　 I have yet to meet another MS sufferer who is not interested in knowing about the pros and cons of this treatment.　 I have also never met a patient who would come close to meeting the definition of vigilante.　 My aunt, who is a patient of Dr Freedman, was not impressed when he told her that the best way to deal with the pain in her foot (from over 50 years of MS) was to amputate part of her foot.　 That sounds like a vigilante doctor to me.

I don’t know where you got your information from but you were way off.　 I find it interesting that you didn’t mention that one patient　 of Dr Freedman’s died in HIS study.　 I think he has had fewer than 20 people in his study so that yields a mortality rate of higher than 5%!　 What is the mortality rate from all the venoplasties performed as treatment of CCSVI?　 Why is the risk of Dr Freedman’s research acceptable but researching CCSVI is not?　 Don’t fall for that line that we are researching CCSVI by funding limited Doppler studies.　 The Doppler study boat sailed from a different port ages ago.　 Even if it hadn’t, do you think that $350,000 a year over the next 4 years is appropriate for a country with one of the highest incidences of MS in the world?　 If you do, welcome to your seat on the board of the MS Society of Canada!

I am not angry with my neurologist for not pushing for CCSVI research.　 I am appreciative that he is not standing in its way.　 I wont disclose his name, but my neurologist is a　 well known MS specialist in Toronto who helped train Doctor Paul O’Connor.　 My neurologist has supported my efforts to help myself, including supporting my desire to have stem cell treatment in Israel.　 He is a wise man and supports any treatment that I opt for as long as I make my decision with full knowledge of the risks and possible benefits.　 That is how neurologists should be helping their MS (and other) patients.　

The MS Society of Canada and the neurologists that it funds are the antagonists in this whole CCSVI debacle.　 Neurologists are not specialists in vascular interventions so they should not be trying to trump them.　 The MSSOC and neurologists should play the role of analyzing the neurological benefits, if any, of venoplasty for their constituents.　 Instead, their egos have gotten in the way and they are creating road blocks instead of pathways.

Your article is terribly misguided in its comments about people travelling to foreign countries only to find that they don’t have blockages.　 I don’t know anyone who has travelled overseas just to have their veins scanned but I am sure that some people have.　 However, I am sure that most people who did take that gamble found that they did have CCSVI.　 90% of Dr McDonald’s patients in Barrie have CCSVI, a very high portion of those studied in Buffalo did and a very high percentage of Dr Simka’s patients showed to have stenosis.　 Your article makes it seem that stenosis is the exception rather than the norm.　 Quite the opposite is true.

I am attaching an analysis of the recent Beaudet Report that was produced by the MSSOC.　 This report was cited by the Federal Government as support for its decision not to push for clinical trials of CCSVI in Canada.　 As you will see, the Beaudet Report is as flawed as your article.　 Perhaps you will do the right thing and consider a sequel to your article that will present the pros and cons of CCSVI treatment fairly and responsibly.

Thank you from a vigilante reader.

Regards
Peter W

The Voice of Reason

A politician with heart, and smarts. She is helping to fight the good fight.

oh, Canada

I have taken a break and now I'm back. if you live in Canada, you may have heard about the various shades of inaction in the CCSVI story. I didn't want to be just be another drop of water in the water fall of cries of injustice of late. Of course it is never fun to face opposition to your beliefs. It is almost like certain words and phrases are getting in the way. Emotion, ego, and politics are shutting down what should be a simple, low cost alternative. Angioplasty has been practiced safely for years. It is considered routine. If an abnormality is identified, why not see if restoring flow helps?

good find: Fear

Words of wisdom that is fuel for my soul. The two things up for grabs are success or forgiveness. Live bravely.