The Unspeakable Bits from a Life with MS: Conspiracy Theories

In the profit-driven, 24/7 news cycle of a world in which we live, it’s amazing the number of outrageous theories about multiple sclerosis one hears.

I believe that the internet has become the most powerful tool people living with MS have at our disposal. The access it allows us to previously hard to find research, historical data and others living with the disease around the globe is an informed patient’s dream. To paraphrase Newton’s Third Law of Motion, however: For every action there is an equal and opposite reaction.

For all the good that is out there on the “interweb,” there is an equal (some would say greater) volume of quackery, misinformation, disinformation, and active conspiracy theories.

Just like bad science, if you go to the web looking for specific answers to validate your point of view, you’re going to find exactly what you’re looking for. For instance, are you seeking information about how mercury fillings are the cause of  your MS? You will find loads of people agreeing with your hypothesis and encouraging you to get your fillings yanked. Think your MS can be cured with a specific diet? There is a broad spectrum of individuals with varied credentials on the internet who will tell you exactly that and encourage you to go on their diet.

How is one to tell truth from snake oil?

I go with two rules of common sense. 1) If it sounds too good to be true, it probably is. 2) If it sounds too absurd to be true, it probably is. The third leg of my evaluation process is based on Ockham’s Razor. Plainly put, “all things being equal, the simplest explanation tends to be the right one.” Conspiracies are usually far from the simplest explanations.

The tendency to throw logic to the wind and grab hold of beliefs or conspiracy theories not rooted in fact is based on genuine fear and frustration about a disease that still is pretty much of a conundrum.

I saw the International Space Station fly over my house the other night and I won’t lie: Part of my brain immediately slipped into “We can put people into space but we can’t cure my stupid disease?” (My frustration talking.)

One of the most prevalent and disturbing  theories out there I see recycled constantly on the internet is that “They” are out to keep us sick. “They” being a mix’n’match confederacy of pharmaceutical companies, medical professionals and patient-centered service organizations.

When I look at the profit statements of pharma and the upward spiral of the cost of MS drugs, I get exasperated as well. I can’t, however, accept that a “cure” has either already been found and is being kept from us, or that drug companies don’t really want to find one because they make too much money from their disease-modifying drugs.

Do not get me wrong; MS drugs cost too much and all of us with MS are a great source of profit for a great many people. Full Stop.

But consider this:

There are an estimated 2.3 million people living with MS worldwide and there are currently 10 disease modifying therapies available to those with relapsing MS, the most common form of the disease. The treatment market becomes more fragmented each day.

What company would “hide” or not look for a cure that all 2.3 million people with MS are clamoring for? 

The one who finds the cure for MS gets the whole pie, not just a slice.  I reject the idea that smart people aren’t searching very hard for the cure (and for better treatments).

I know there are those who will say that a certain kind of water has made them better or that their MS is gone because of [fill in the blank]. I say: Good for you. I’m glad that you found something that you feel works for you.  I don’t begrudge you your choices on how best to manage your life with MS.  Just don’t go around making generalizations as each person with MS is unique and experiences their MS in a unique way. You’re doing harm to people looking for genuine answers to real problems.

The world is not out to get us.

Wishing you and your family the best of health.

Cheers,

Trevis

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Trevis

Trevis Gleason, Blogger

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.