IVCC/CCSVI, articles et liens de ce samedi.

Publié le par Handi@dy

Barre google de traduction indispensable.

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par MS Society of Canada - Alberta Division ccsvi, jeudi 30 septembre 2010, à 19:32
Darcie James: with husband Kevin
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par Ccsvi Transverse Myelitis, mercredi 29 septembre 2010, à 12:34

Ok let me share the discussions that occurred in Belfast it was quite a challenge and I am not sure there was a winner.There were four speakers. Dr. Goianfranco Campalani, an MS patient who is a cardiothoracic surgeon at the Royal Victgoria was first.

Then TWO neurologists spoke back to back.

 

Dr Stanley Hawkins is the senior neurologist in Belfast and is a consulting neurologist in the Royal Victoria Hospital, Belfast City Hospital and the Causeway hospitals. He is a well written MS neurologist. He was followed by Martin Duddy who was also a consulting neuorogist with special interest in MS. He is a busy clinician. Finally yours truly got to speak

 

Dr Campalani gave a detailed account of his disease and the effects of balloon angioplasty on his life. It was the common description of progressive deterioration to the point of dysfunction and his dramatic improvements after balloon angioplasty. Followed again by recurrence, repeated angiopastly and a satisfied patient. Dr Campalani passionately spoke in favor of the procedure as a patient. He acknowledged that existing disease was not likely to be totally reversed and accepted his residual symptoms. He argued in support of universal availability of the liberation procedure.

 

Dr Hawkins then proceeded to state that neurologists understood this disease better than most. Perhaps in a wry joke, he showed a line illatration of the brain and spine and then insisted on repeating this in case it was too complicated for the audience. I could not tell whether he was insulting or just making a bad joke. He then reviewed the natural history of MS, indicated that it took a long time to reach SPMS. He showed various tables indicating the waxing and waining course of MS, indicating that long periods of remision occured without treatment, that placebo was a real problem for assessing research, He pointed out that quality of life scores were not really very scientific and then stated that Zamboni's paper in JVS would not have been published in a neurology journal for its statistical deficiencies.

 

I had a lot of difficulty with Dr Duddy's presentation. He seemed to be mocking the entire subject as irrelevant. He kept pointing out things that proponents put forth and kept snickering and laughing about it. I could not tell whether he was mocking in a conptemptuous way.

 

He then reviewed Zamboni's papers, deconstrucing them as poor science with suboptimal outcomes abd crappy data. He discounted Zamboni's work because he had 100% correlation in ultrasound. He dsmissed zivadinov's confirmation because Zivadinov know Zamboni so "we couldnt really accept that, could we?" biased and all.

 

He showed some placebo studies and argued that the improvements seen by Zamboni were less than those improvements reported for placebo trials. Interesting how he brought up the "unacceptable" Zamboni data and then used that data to prove his point. He then brought out the big hitters, the kahn editorial (lots of good data there) and the doepp paper as proof positive that zamboni was wrong.

 

Finally the commercial enterprises that are performing liberation were charlatons. That a 7,000 pound expense for this procedure was a real hardship. I wondered what he thought of the expense of some of the DMDs.

 

Finally I had an opportunity to speak. I made four major points :

 

1. that ccsvi has many causes although MS was the most common cause

 

2. that other causes of ccsvi are treated. I asked why MS patients could not be treated.

 

3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the lack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins

 

4. I argued that the patients were not satisfied with the status quo. That they were intelligent and could make up their minds about whether it was worth their while to seek treatment. I warned the neurologists that a paternalistic attitude would one day bit them in the ass.

 

A vote was taken at the end and most did not commit one way or the other. The surgeons told me that their minds were opened by the debate.

 

I spoke to dr Hawkins at the evening's dinner. I reiterated my need for collaboration between neurologists and interventionalists. I asked him how he would propose that i create that collaboration. He didnt give me a satisfying answer.

 

was the trip worth it? I thought it was . I think minds were opened a bit. Let's not give up hope about neurologist partners. We really do need them.

 

Dr Sclafani, Sept 28

Info taken from:

 http://www.thisisms.com/ftopic-10680-days0-orderasc-3405.html

 

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par DIRECT-MS, vendredi 1 octobre 2010, à 06:17

Here are the letters sent on Sept 30th to both the president of MSSC and the five MS doctors interviewed for the Toronto Star article. Direct-MS has invited MSSC to join in an initiative to fund the five doctors to visit a CCSVI treatment centre so they can experience firsthand CCSVI testing and treatment.

 

Dear Mr Savoie,

 

We have never met or corresponded but it seems to me, given the current crisis which has engulfed the MS community, it would be best if we started to communicate on subjects of mutual interest. I am the president of Canada's other mainstream MS charity, Direct-MS.

 

Perhaps you saw the recent article in the Toronto Star entitled "“MS doctors attacked for their skepticism”. In the article MS doctors were claiming that they were being unfairly maligned for being skeptical of the CCSVI concept and the safety of CCSVI treatment. We at Direct-MS do not agree with such a position and have written a detailed response to it in which the case is made for the MS doctors adopting a close-minded, negativity approach. This is basically the opposite to true skeptical empiricism which guides all scientific investigation.

 

I have attached the Direct-MS response to the Star article and I hope you will be able to provide me with some feedback on how MSSC sees this issue. I have also attached my published scientific paper on CCSVI and MS in which I have shown that both the autoimmune and CCSVI concepts can be readily integrated into an improved model for the MS disease process.

 

I am writing you primarily to ask if MSSC will join Direct-MS in an important initiative to send the five doctors quoted in the Star article to a CCSVI treatment centre for a few days so that they may gain firsthand experience with CCSVI and its treatment. This will allow them to see for themselves if CCSVI is indeed a real phenomenon or not and whether or not the treatment used to relieve it is a very safe and relatively routine one. I might note you and other MSSC officials might want to join such a fact-finding mission given it is most important that MSSC has the best possible knowledge of CCSVI and its treatment so as to provide the best advice to its members.

 

I would note, I and other Direct-MS board members have already spent time in a CCSVI treatment centre and seen for ourselves the testing and treatment for CCSVI. I have also spent an entire day with the University of Buffalo CCSVI researchers (whom we help fund). They have a most impressive operation and, given it is only a pleasant 2 hour drive from Toronto, this is another place you and other MSSC officials might want to visit to expand your understanding of CCSVI and MS.

 

I assume MSSC will want to join us in this initiative and I suggest we split the costs between us. I expect the total cost will be less than $10K for each and this is a paltry sum compared to the potential results such a trip may well produce. I am also sure the MS patient community will be pleased to see our two charities cooperating in this important venture which will allow the participating MS doctors to speak about CCSVI with much more credibility and understanding.

 

I look forward to hearing from you on this matter and perhaps some time we can arrange a meeting to discuss how else we might cooperate in the future. CCSVI has opened up a huge, new vista for understanding and treating MS and I am sure you are excited as I am about the possibilities it presents.

 

Sincerely,

 

Dr Ashton F Embry

President

 

 

Dear Drs Freedman, Stys, Prat, Knox and Traboulsee,

 

For those of you who don’t know me, I am the president of Canada’s second largest multiple sclerosis charity, Direct-MS. I read with interest the recent Toronto Star article entitled “MS doctors attacked for their skepticism” and especially enjoyed all of your comments. I have written a detailed response to the article (attached) and have taken the position that MS doctors such as yourselves are not scientific skeptics but rather have adopted a close-minded negativity approach. You can judge for yourselves if I have made a reasonable case for such a position.

 

It seems to me if you want to truly be skeptical empiricists, then you want to see for yourselves if the CCSVI concept is valid and if CCSVI treatment is a safe and relatively routine procedure or not. The obvious way to achieve this in the short term would be for each of you to visit a CCSVI treatment facility for a few days and observe the testing and treatment procedures for yourself. Having been a research scientist for 42 years, I know that there is nothing like firsthand observation to help me understand and evaluate a new hypothesis especially when I have limited or no firsthand experience to start with.

 

The main reason I am writing you is that Direct-MS is offering to help fund a trip for each of you to a CCSVI treatment facility. I have also written to the president of the other main MS charity in Canada, the MS Society of Canada, to ask them to join us in this initiative and to co-fund your visits to the CCSVI treatment facilities. I am hopeful MSSC will see the great value in this initiative with the potential benefits far outweighing the minor costs.

 

Please let me know if you are open to actually seeing for yourself if CCSVI is a real phenomenon in multiple sclerosis and if CCSVI can be treated effectively and safely by current vascular techniques. Such a trip will make any future comments you may have on CCSVI far more credible and will certainly impress your critics and raise your profile in the MS patient community. The MS community will be made aware of this proposed initiative and I am sure will be most interested in your replies.

 

I look forward to hearing from each of you on this matter. Of course if you have any comments on my attached essay “Close-minded Negativity by MS Doctors Does Not Equate to Scientific Skepticism”, please include them with your reply.

 

Sincerely,

 

Dr Ashton Embry

President"

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The Liberation Treatment

September 23, 2010

Cardiovascular Thoracic Surgeon Dr. Sandy McDonald sheds some light on the controversy surrounding the “liberation treatment” to alleviate multiple sclerosis symptoms. The Treatment was discussed in the recent Beaudet Report on Chronic cerebro-spinal venous insufficiency (CCSVI). He agrees that this report should be put aside and not used to influence a decision on whether or not to fund a clinical treatment trial for CCSVI.

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CCSVI Study by Wolinsky Team

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N.B. Tory leader says he'd tout controversial MS treatment regardless of vote

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To Bulgaria in November with hope

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