Blinded by sci­ence

The Southern Gazette - - EDITOR’S VIEWPOINT - Ed­i­tor; Alex Har­rold, West­port, White Bay

I wasn’t go­ing to bring this sub­ject up be­cause of the criticism I would re­ceive about the self-serv­ing na­ture of the topic.

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 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 se­ri­ous­minded 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 no self-re­spect­ing pub­lisher in this prov­ince wanted any­thing to do with, be­cause of my in­abil­ity to point out to them 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 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 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 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 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?

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