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