My most vivid memory as a member of a local MS chapter concerns the tension between the needs of the local people with MS and the insatiable demand from the provincial office for fundraising so that more and more funds could be sent to the Multiple Sclerosis Society (MS) of Canada (MSSC) national office.
In 2014 the MSSC raised a little over $50 million according to publicly accessible information on the Canada Revenue Agency (CRA) website. Of this, almost $20 million was used in their fundraising activity — that is right, 39 cents of every dollar you donate goes to fundraising and does not directly benefit people with MS.
Where this money goes baffles me since there are so many volunteers fundraising. Over $3 million went to compensation for senior management and administration with compensation for 10 individuals ranging from $120,000 to more than $350,000.
Further, they paid more than $800,000 in professional and consulting fees and more than $1.6 million was spent on political activities.
Only $5.5 million went to research programs and scholarships in Canada. It is not possible from the CRA website to determine how many dollars went directly to help people with MS.
Perhaps it is time that the Cowichan Valley forms its own MS chapter. This way it could decide what proportion of the almost $400,000 raised in the Cowichan Valley is used to help people in the Valley with MS.
One might argue that this leaves less money for research. To this I would argue that despite all the monies going towards MS research over the decades we still do not know what causes MS and certainly not one of the very expensive MS therapies developed have yet been proven to slow progression to disability. That is right, something not generally talked about by your MS Society and your neurologist: to date, no MS drug therapy has been proven to slow progression to disability, and some have caused severe disability and even death of people with MS.
We do know, however, that there are many stories out there of people with MS having remarkable improvements in symptoms when they make major changes to their diet and other aspects of lifestyle. There are people diagnosed with MS who, by changing their lifestyle, regained much of their lost function and have discarded their wheelchairs.
Of course this occurs only in a subset of people with MS but one would think that the MSSC upon hearing this would fund research in this area. This has not happened. According to the MSSC website, since 1999 there has not been one research proposal funded examining how diet can improve the symptoms of MS, this despite the fact that Dr. R.L. Swank published many decades ago in Lancet, one of the top medical journals, that a diet low in saturated fats greatly slowed the progression to disability. To learn how lifestyle changes can ameliorate MS I would encourage readers to go to the website of Dr. Bill Code of Duncan as well as the websites of Dr. Terry Wahls, Matt Embry and Direct MS. You can then pose the question to the MSSC Society and ask why there is so little attention to lifestyle in MS research programs.
Only local pressure can change the direction of MSSC so that the research focus is aimed at actually improving the lives of people with MS and that more of the money raised is used to directly help people with MS.
Bernhard H.J. Juurlink