(Opinion) Evan Saugstad: Your health, my health; your belief, my belief?

Are health studies and their science the ‘real deal’ or is it all a cover-up and conspiracy by ‘big pharma’ and ‘big industry’ in their quest for profits?

Who do you believe, or is it better framed, how should we believe?

I do a lot of reading.  Traditional news organizations, online publications, social media posts: if it looks interesting, I tend to read it, no matter the source or the veracity.  And when I find a topic of interest, I will go looking for more.

What my searching tends to do is feed back into my social media algorithms so I get more and more of that topic – the good, bad and ugly – as that is how those algorithms work.  If you read it, they will send you more, and it doesn’t all have to be real or make sense.

In today’s world, it seems many social media platforms are now letting the reader determine what is real and what is not, and this gives those who the love the words ‘conspiracy’ or ‘cover-up’ free rein to say what they may.

This seems especially true when it comes to the topic of one’s health, medical diagnosis, the pharmaceutical industry or the causation of disease and death.  We all tend to pay attention to things that may affect our health and that is when it can become confusing.

Take two stories I have been following.

The ‘mystery brain disease’ in New Brunswick, and U.S. President Donald’s appointment of Robert F Kennedy Jr to secretary of health and his quest to solve the riddle of autism. 

A May 7th National Post headline read: “That mystery brain disease plaguing people in New Brunswick? A new study finds it’s not real.” 

In part, the article reads: “A new study is questioning the existence of ‘an alleged ‘mystery’ neurological illness’ that emerged in New Brunswick six years ago.

“The research, published Wednesday in JAMA Neurology, took another careful look at 25 cases of people previously diagnosed with what’s dubbed a neurological syndrome of unknown cause (NSUC), 11 of whom have since died.

“‘There was no evidence supporting a diagnosis of NSUC in this cohort,’ the study concludes.

“Instead, well-known conditions were identified in all 25 cases, including common neurodegenerative diseases, functional neurological disorder, traumatic brain injury and metastatic cancer.

“‘Based on the 11 autopsy cases, a new disease was extremely unlikely, with a probability less than .001,’ said the study.”

In short, last November, New Brunswick Premier Susan Holt said she wanted the Public Health Agency of Canada to investigate the cause of so many ‘undiagnosed’ brain illnesses in her province. 

Anecdotal information, much of it perpetuated on social media, had claimed it was caused by everything from an unknown prion disease, toxins from cyanobacteria, glyphosate, glufosinate, and heavy metals. 

The completion of this study should now put the mystery theory to bed – but alas, it won’t. Conspiracy and cover-up theories will replace the science of health, and the story will continue, at least in social media terms.

The RFK Jr. vaccines story is very similar.

The difference in this one is that RFK Jr. is on the side of conspiracy and cover-up and not necessarily on the side of traditional medical science and studies, and now, in his position of authority, is setting out to ‘prove’ the cause of autism.

An April 30th headline reads: “The little-known database at the heart of Kennedy’s vaccine conspiracy theory – Robert F. Kennedy Jr. has long claimed a secret database holds the truth about vaccines and autism. Now that he’s in charge, his anti-vaccine supporters wonder — can he deliver?”

In part, the article reads: “For as long as Robert F. Kennedy Jr. has falsely claimed that vaccines cause widespread harm — from autism to sudden death — he has pointed to the one source he says could immediately prove it.  

“In speeches, interviews and writings, Kennedy has repeatedly claimed that the evidence of a massive public health cover-up lies buried in a little-known database of medical records of some 12 million Americans: the Vaccine Safety Datalink, or VSD.  

“‘For decades, the CDC has kept a tight grip on the Vaccine Safety Datalink, concealing vital vaccine safety information from the public,’ Kennedy said in 2023.  

“Kennedy now oversees the Centers for Disease Control and Prevention — including the Vaccine Safety Datalink — and one of his first initiatives as health secretary was to launch his long-dreamed-of study using the VSD to investigate the link between childhood vaccines and autism. It’s a theory that has already been disproven in dozens of studies, many using VSD data. 

“‘We’re going to be able to get into these databases and give answers to the American public,’ Kennedy said last month. He told President Donald Trump at recent cabinet meeting that he would reveal the cause of autism by September.”

So, what do these two very different stories have in common? 

The New Brunswick study concluded that: “Misinformation regarding the New Brunswick ‘cluster has proliferated in both traditional and social media, from not only the predictable and easily identifiable groups coopting the crisis to suit their agenda, such as antivaccine advocates, but also those who are unknowingly amplifying an incorrect diagnosis from their physician,’ said the study.”

It is also very likely much the same could be said about JFK Jr.’s study on vaccines and autism.

New Brunswick had one neurologist who made the “diagnoses” and claims about the mysterious brain disease, to which this new study says they cannot accept or replicate.  Of note, this same neurologist disputes this study and stands by his original diagnosis.

Autism has a similar background.  One medical study concluded childhood vaccines are linked to an increased risk of cases of autism in young children.  Subsequent studies have repeatedly shown they cannot replicate or confirm these results. The lead author of the study says he is correct, and he has an army of followers who claim there is a cover-up and conspiracy perpetuated by government, big business and pharma to deceive the public and increase their profits.

I know what I believe but do say so as one with no expertise in either subject.

I will stick with the majority on both issues. And further to that, we all should believe that the recent uptick in measles cases is directly tied to those who refuse vaccinations. Measle epidemics do not exist with vaccinations.

For all our sakes, I just hope JFK Jr.’s study will be as definitive as the New Brunswick brain study.  Unfortunately, I have little hope that either study will be accepted by all.

Evan,

And if my memory serves me correctly: measles was no fun, even if I got to stay home from school.