In an era where many governing decisions are made in the face of incomplete or even deceptive and manipulated information, I can’t let this go.
I don’t expect that anything I have to say will change the government’s decision to not fund the angioplasty procedure for people with multiple sclerosis. They’ve never listened to me before, which is a shame, considering how often those who have gathered around my coffee table have come up with solutions for everything that plagues us.
You, no doubt, have had similar conversations with your friends around whatever table it is you surround, with similar results. We should get together some time and compare notes.
Even in the face of what is a complete absurdity, I can maintain a sense of humour. I never take myself too seriously, which explains why my writing has not been used by serious-minded and responsible individuals as a guide by which one might conduct their affairs.
I know this to be a fact on the basis of the dismal failure of my self-published book that no self-respecting publisher in this province wanted anything to do with, because of my inability to point out to them that it was a parody rather than a serious work of non-fiction.
Clearly, that’s a matter for another day, but if you go to Lulu.com and search my name, you might just find something you weren’t looking for.
Government decided to not fund the procedure on the basis of the year-long study of 40 people in this province with varying forms of MS, 30 of whom went away to have the procedure.
I was one of the 30. The researchers concluded that those having undergone the procedure did not demonstrate any objective improvements that could be measured by the doctor performing the assessments.
That’s a sound conclusion. Nothing wrong with it. If you remember high school science, you’ll recall that facts are developed from theories that can be tested by adjusting any number of objective and measurable variables during experimentation by others, and the recording of the results will follow a predictable pattern from which conclusions can be drawn.
The key word in this process is “objective,” as no weight is afforded to non-quantitative, or unmeasurable, subjective results in scientific analysis. That works well, until you come up against MS, which, by its nature, is highly subjective to begin with. The study had to test people with varying degrees of MS, as no two people are the same.
The overwhelming anecdotal and subjective experience of people with MS is ignored, which is ironic, when studying a highly subjective disease. If the researchers took the time to reference other data, they would have learned that the success of the procedure is highly dependent on the type of MS you have, your age at diagnosis, and the length of time you’ve had it.
In a post-treatment Polish study of 500 people (a tad more than 40, eh?), those younger people recently diagnosed with the relapsing-remitting form of MS of less than five years demonstrated a 77 per cent chance of some symptomology reversal, compared to folks like me who are older, have the primary progressive form of the disease and for more than 15 years and realize only a 17 per cent chance of any symptomology reversal.
I’ll take 17 per cent over nothing. Not one of the improvements I realized post procedure made it on the Newfoundland and Labrador study, as it wasn’t a measurable quantity.
By limiting the parameters of the Newfoundland and Labrador study, researchers can, and do, get the results they may be looking for. Did that happen here? I can’t say, but I know this - the government has concluded not to fund someone young and newly diagnosed who might otherwise avoid many of the challenges I and others have faced over half a lifetime with this disease that, by the way, was initially diagnosed as brain cancer in my case.
I was told I had six months to live.
That was nearly 23 years ago, and I assume the initial diagnosis was made using some sort of objective process doctors here are trained to rely on.
Science is great. But it isn’t everything. I figured everyone must have learned that by now.
And remember, I taught high school science. How humble is that?