This Is MS Multiple Sclerosis Community: Knowledge & Support

This page just seems to say "FORBIDDEN".

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

CCSVI Advocate Christopher Alkenbrack to Yves Savoie, President and CEO of the MS Society of Canada: the pamphet Red Flags and Green Lights is "offensive and manipulative".
WireService.ca Media Release - April 6, 2013

OPEN LETTER

Mr Yves Savoie

President and CEO

Multiple Sclerosis Society of Canada

RE: Publication "Red Flags & Green Lights" http://mssociety.ca/en/pdf/redFlags.pdf

Mr. Savoie,

I have just finished reading this publication in both English and French, and I find it quite disturbing for several reasons:

1. The MS Society of Canada has so often stated publicly that they do not have conflicts of interest with the large pharmaceutical industry, yet in the beginning of this publication on the inside cover page, it is written : «Supported by an unrestricted educational grant from TEVA NEUROSCIENCE ».

2. The general goal of this publication seems to undermine any source of information on Multiple Sclerosis that is not directly related to the MS Society. Please do correct me if I have misunderstood the true goal of this publication.

3. In the introduction of this pamphlet, it is written : «It's another thing if you have an illness and you are mislead - about the nature of your disease and how to treat it. That kind of misinformation can be dangerous and damaging - to your health, your wealth and your well-being. »Taking into consideration the information questioning the auto-immune theory of Multiple Sclerosis, and the opinion of world-renowned neuroscientist, Dr. Peter Behan, when he writes: "However, a false orthodoxy claiming that multiple sclerosis is an autoimmune disorder has developed and formed the present basis of treatment, drug trials and research. The outcome of this misplaced creed has been truly catastrophic."(source of this quote: http://www.expert-reviews.com/<wbr />doi/pdfplus/10.1586/ern.10.69)<wbr />, one must question the role of information provided in this pamphlet, since of course the MS Society is largely influenced by the affluent pharmaceutical industry.

4. On page 4 of this document, we find the following text: "Books may be written by someone who is trying to promote a certain point of view or pet theory (e.g. that MS is caused by a type of diet)"....and then it goes on to state, "Some of these people are con artists or zealots. Some are well-meaning individuals, often people with MS, who honestly believe that making a change in their lifestyle has helped their illness".

When I read this, I was brought to reflect upon what I have personally learned through the writings of Dr. Terry Wahls, an American Physician who is afflicted with MS, and who has written extensively on the role of nutrition and MS. I'm most certain that you have seen her TED Talk that has been viewed well over a million times. http://www.youtube.com/watch?v=KLjgBLwH3Wc Dr. Wahls has also published a book entitled « Minding my Mitochondria » in which she exposes a nutritional regimen to help people with Secondary Progressive MS overcome the challenges that they are facing. Strangely, Dr. Wahls requested funding from the National MS Society in the U.S. to fund her study, and she was refused -the reason given was that she did not understand the etiology of Multiple Sclerosis. I personally think that she was refused because it was not a study that would fill the coffers of some pharmaceutical company charging tens of thousands of dollars for a remedy for a disease of unknown origin.

5. On page 5 of the document in question, a table is presented in which different sources of information are presented as either reliable or unreliable. I personally find this one of the most manipulative, undermining pieces of writing that I've ever seen from your Society. A pat on the back is given to the Society, their affiliate organisations, the neurologists, MS clinics. All of these organisations without question believe that Multiple Sclerosis is an autoimmune disorder, which you know as well as I know, has never been proven.

I could go on for another 30 pages exposing the manipulation in this document, but I'll spare you and myself. As a former chapter president for the Annapolis Valley, Nova Scotia, I cannot express how this pamphlet is offensive and manipulative. I feel I have the right to tell you that this pamphlet is offensive and manipulative and should be re-written or, better still, discarded.

Regards,

Christopher Alkenbrack

Bravo!

I think when you consider the sources of funding and the financial momentum such a well-heeled organization has, a red flag may go up. In fact, where have I recently been hearing about red flags? It is a touch the MSS has added, if they are also including green lights. I can't drive through any of those either.

The drug pushers have easy access to the organization by managing such a large portion of its funding. I wonder just how non-profit it really is. Maybe it's just a part of the industry that is not publicly traded?

I have heard about their being unhelpful, from other pwMS. I have seen them directly distribute drug company largess in the form of well-attended educational seminars, including refreshments. (Also including slights directed at a certain Italian physician). There is almost always an anonymous brown envelope awarded, often to a physician who has explained the latest drugs, or just how hopeless it all is, unless some research can come up with a magic bullet.

Education is important. There are infinite horizons of learning new stuff. Never any shortage of "patients", who have many uses.

Physicians who prescribe these "DMDs" are also prominent in the fund-raising they do. Nobody tries to hide anything. Nothing wrong with it, is there?

I don't have any experience with the national MSS. Mine has only been with the local organization. My membership in the local one has occasionally been helpful, once I was disabled, and could not raise funds. They also have given my fund-raising family some awards, including cash. We also got quite a few T shirts.

We are so lucky it's "MS" and not something worse. With what other disease are you treated so well by drug vendors and doctors? Where else have you heard the phrase "unrestricted grant"? Oh yes, that refers merely to academic freedom. My mistake. All my DMD prescriptions have come with expensive "collateral" - merchandise, video, and that sort of thing. The good fortune is shared. That should be a green flag to anyone.

It should have been a red flag to me when anyone offered hope. If it sounds too good to be true, it isn't, right? I am too old and have had too much disease progression to have anything like hope.

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