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.  

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    31 Comments

  • vivianegauvin  Jul 22, 2014 1:11 PM
    Spot on, Trevis! Thanks for this reality check.
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    marshina  Jul 22, 2014 1:31 PM
    my thoughts exactly.
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    marshina  Jul 22, 2014 1:31 PM
    my thoughts exactly.
  • Mherli  Jul 22, 2014 1:40 PM
    I would agree.
  • koucla1  Jul 22, 2014 1:53 PM
    Yes people will believe anything they WANT to hear, however what do we say to our trusted doctors who bear similar thoughts as those you mentioned. I smile when my doctor asks me what treatment I would like to try next or what I think made my remission occur. My answer is always the same..I don't know..do you? It is a crazy world we inhabit now but it is still better than years past when information was nonexistent. It is great to know I have a voice, a chance to make an informed decision in my journey with 'my' MS, and, with any luck,to see a cure..maybe not for me..but for those who will continue to carry this legacy.....
  • Amy   Jul 22, 2014 1:57 PM
    Agree -I went onto the swank diet and nada. I have had wonderful results with YL Essential Oils but, as I tell everyone. Each person with MS is different, my personal pain management has gone from RX dull minding drugs to being able to use a topical oil. No, it is not the norm. PanAway doesn't help my husband's headaches like it does my tension headaches and our backaches. We have both found that Peppermint has helped his indigestion, but it does a better job of helping my migraines (but not his). Each person is different and there isn't always a 1 drug/oil/diet for everyone, right now at least ;) Be well <3 !!
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    BekcisDoc  Jul 22, 2014 2:03 PM
    Agree with you 100% , Trevis!
  • Shelley   Jul 22, 2014 2:40 PM
    I have to laugh who believe everything they read on the internet. MS is an autoimmune disease that impacts everyone differenty as do the drugs we are given. We are living on blind trust of the impact all these medicines are going to due to a in 20 years, maybe less. What we can do for ourself is police our on health, ask questions, and do our on research. Yes, it great to think we can trust our doctors, but bottom line, it's our body, our future and our lives. If your gut is steering you away, listen carefully. Weigh all your options. If we don't watch out for ourself, who will.
  • Andrew   Jul 22, 2014 3:29 PM
    Good article Trevis, but I can't help feeling that the last part might be telling me to shut up with my theories! hahaha
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    refusetoquit  Jul 22, 2014 4:33 PM
    Understood...............BUT............those waiting for THE answer (where there is none), and those that look for an excuse for not being responsible whith what goes INTO the body, don't 'see' THE BASIC need of the body's nutrition, to start with................so let's just 'do nothing' while we wait for the 'smart people' to discover something tangible..............sorry, I'll go with my GUT, after all, .......disease starts there.............or maybe not............or maybe.................doesn't hurt to try, ESPECIALLY feeling the change.

    But HAY, we're ALL different..............except, we're all HUMAN..........BACK TO BASIC'S...........THAT'S WHAT THE ATHLETIC COACH SAY'S ......WHEN THING'S GET MUTTLED UP.
  • Kolohe  Jul 22, 2014 4:56 PM
    I have had MS for over 30 years. MS patients have been characterized as having above average intelligence, amazing the number of people who are not using it. Thanks, to those who are.

    My experience has been if I eat generally healthy diet, I generally feel better. Swank,Walh and Paleo diets may make people all feel better, however, they do not cure MS, as some imply. The Acid test, If these really worked to cure MS don't you think we would have seen the headlines on the evening news by now? Think about it as this applies to all the other Snake Oil and Quackery out there now and in the future.
  • Maria Teresa Diaz-Gonzalez   Jul 22, 2014 5:02 PM
    I appreciated the time you took to unmask some of the "ignorance" that seems to catch some people's ears... :)
  • Jodi Nicholson   Jul 22, 2014 5:04 PM
    THANK YOU Travis! You say all I've been wanting to say about these 'magic' "cures" and conspiracies. My feeling is that if eating oranges, or not, cures MS we'd all know it and there'd not likely even be any MS. And, yes, whoever figures this out, will, indeed, be THE quitessential.
  • Fran   Jul 22, 2014 5:33 PM
    Extremely well said! Thank you Travis.
  • Fran   Jul 22, 2014 5:34 PM
    Extremely well said! Thank you Trevis.
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    refusetoquit  Jul 22, 2014 6:23 PM
    kolohe, I guess that's my point,...........wouldn't you want to FEEL better with your MS than not do anything? Finding 'the answer' or 'THE cure' will happen in it's own time, but to say "nutrition won't cure MS"..........ok, but you'll feel 10X's better..........common sense knowledge is forward progress. If we wait for THE CURE.........we miss LIFE as it could be.

    We're STILL on the 'merry-go-round' This blog is common sense too............but 'trying' trump's 'waiting for a cure'...........and around and around we go............WHee...............!!!

    Just don't know where it leaves us................appreciate your comment, and others......
  • Ann LaFomtaine, RD, CDE, LD   Jul 22, 2014 7:23 PM
    I am a dietitian with MS. If there was a "dietary" cure for MS, I would be on it. But for now, there is no miracle diet, so I take my meds.
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    refusetoquit  Jul 22, 2014 9:01 PM
    Of course, med's..................diet manages or eliminates the symptom's...........as much as the medical side want's us, natural's, to understand the need for med's,we, 'natural's' need the medical feild's to recognize ...........diet and lifestyle matter's. Cure or no cure in any disease.
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    refusetoquit  Jul 22, 2014 9:14 PM
    Dr. Wahls say's she still has MS, but has found diet to reverse the course...........a Medical Brain Dr. who focused her attention on what the brain need's as far as mitochondrial health, where it all begins.

    Don't understand how we're supposed to feel after reading this blog............is the message, don't try anythig besides drugs or you need to use common sense in information,true or false?
  • Trish   Jul 22, 2014 10:38 PM
    When I was first diagnosed, it was so frustrating to read articles about "miracle cures", diet related cures and anything else with the word cure in it. How can educated adults believe this nonsense?!
  • Sharon McLean   Jul 22, 2014 10:53 PM
    Goodness me what a mish mash of comments, I don't know what to say except there is some truth in what everyone has to say, Trevis I think that some hope is better than no hope, but to chase after things that are obviously ridiculous especially when u place all your faith & trust in that for a cure makes you feel hopeless & depressed, & that is no good
    As for Quackery, Chiropractors & Acupuncture were once in that category, yet, they do help some of us ( but not cure ) we don't call the scientists that test & test & sometimes find help in search for a cure "Quacks" do we ? It does help to have Counsellors, once you would of been seen as mentally unstable "mad" now it's normal, some of the medication prescribed for the general population is now known to be so wrong " my GP said to me one time, that all they are doing is "practicing" generally"
    So it seems to me, that you should use your brain, & maybe even your gut feeling, no one else knows,& you just may strike what is good for you, share it by all means, we will celebrate with you, but it does not mean that you have found a cure for us all but it WILL give us all strength & hope that one day a cure for all of us will be found, or maybe a cure just for us, don't just blandly go along with the "experts" you should be in charge of your own body & be your own healer,but DO work with them, I think I have said enough for you to get my drift "BLESSINGS TO YOU ALL"
  • Anybeth   Jul 23, 2014 12:34 AM
    I actually do tend to begrudge people their "miracle cures" when it comes at the expense of understanding how their MS works.. I mean, relapsing-remitting MS is astounding ripe for people who would tend to believe in such things because the natural course of that sort of the disease includes episodes, improvement after the episodes, and periods of stability between that and the next episode.Too many people, it seems to me, think whatever they were doing during the improvement or stable period was the cause of said improvement or stability, when that would happen anyway. But then, for most, the natural course of the disease would mean another exacerbation eventually comes. And when that happens, so many cure-believers tend to try other things, often more extreme and even dangerous things. I think it's important to understand as much as we can about how our particular disease process works so we aren't as likely to be deceived or to trick ourselves.

    Not having control isn't comfortable and MS can make daily life so unpredictable, to say nothing of the future. I think a lot of the cures are us trying to feel like we have control of things we don't. We launch a kite and if it soars, we pretend we steer the wind.

    My MS was very aggressive from the beginning. I saw my first MRI lit up like a Christmas tree with dozens of lesions and I gained more monthly. No diet or magnets or motions or poisons were going to stop that. Best meds on the market then didn't delay. People like me don't talk about miracle cures because we know there's none for us and if there was, MS would be gone. I hated it when people told me I should just do this or that and then, *POOF*, all better. Like they were telling me that by not doing or thinking certain things, I was choosing my disease. No.

    Yes, a good diet positively impacts health. A good diet for me is eating. And making sure I get the proper vitamins from food and drink if I'm noticing a deficiency. My MS suppresses hunger and makes decision-making (and sometimes spontaneous movement) difficult, all of which make getting food and eating very hard. Unrestricted diet beats starvation, hands down. So I try to eat enough and not to get serious deficient in vitamins or minerals. Gets me more energy. No restrictions, 'cause for me, they're all dangerous.
  • Sue   Jul 23, 2014 4:05 AM
    Thanks Trevis that is the best thing I have ever read about MS. Ever since my diagnosis I have been worried about everything I read but this article really helped me to see the rational side of things. It makes a lot of sense what you say. I feel better when I eat sensibly, stay cool (in every way), and don't push myself too much (how hard is that sometimes). Your blogs also help. X
  • Paula Wright   Jul 23, 2014 4:58 AM
    AFTER 17 YEARS OF AVONEX I STOPPED LAST MAY,2013... I CONTINUE TO EXERCISE DAILY STRETCHING & PEDDLING MY STATIONERY BIKE...
    IT'S NOT THE DURATION, BUT JUST THE MOVEMENT!! & THE P M A POSITIVE MENTAL ATTITUDE!! DO NOT LET THE BASTARDS KEEP U DOWN!!! CARPE DEIM !!
  • Paula Wright   Jul 23, 2014 4:58 AM
    AFTER 17 YEARS OF AVONEX I STOPPED LAST MAY,2013... I CONTINUE TO EXERCISE DAILY STRETCHING & PEDDLING MY STATIONERY BIKE...
    IT'S NOT THE DURATION, BUT JUST THE MOVEMENT!! & THE P M A POSITIVE MENTAL ATTITUDE!! DO NOT LET THE BASTARDS KEEP U DOWN!!! CARPE DEIM !!
  • Tami   Jul 23, 2014 6:58 AM
    Ironic that a post like this was done. I have been a lot of reading regarding disease in general. I have had MS for 20 years now. As Paula writes, a positive mental attitude is essential also for me. Movement is also key. I allowed a label of RRMS to SP interrupt my positive outlook, and now I am thinking that the label is wrong. Until we know the exact "cause" of the diseases, there is not a right answer. I just read that MS is 52% environmental, 48% genetic. I made my life into a time-line to see patterns, and that led me to reading more about hormones. In just a few days, I have increased my strength for walking by getting out and walking again. I had to change my attitude first, and not let others tell me what I should or should not be doing, but lead myself to where I feel what works best for me. MS is not like math, there is more than one answer.
  • Di   Jul 23, 2014 8:52 AM
    Thank you-so well said!!
  • Elias   Jul 23, 2014 9:07 AM
    Excellent posting, Trevis. After dealing with my own MS for the last 34 years, I've gone from RRMS to SPMS in the last ten years. Attitude IS key. I have seen advances in drugs for MS therapy. From prednisone to injectables to finally oral therapies. There are so many more MS patienrs out there now. The internet is such a double edged sword. Every solution must be taken with a modicum of salt, Currently, , there's no cure, or diet for MS. My last words on this, beware what you read on the Internet.
  • Dr. D.H. Cheek   Jul 23, 2014 10:47 AM
    I've noticed that many quacks frequent MS chat rooms...trying to sell their snake oil cures. I have called out many of these people but end up being attacked by desperate MS sufferers who claim they have been cured. I have discovered that many of those that have attacked me where actually shills planted by those trying to sell their miracle cures. Even when I post solid research to counter these absurd claims I was continually attacked. I'll just say caveat emptor! If it sounds too good to be true it probably is too good to be true folks.
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    udatarzanmejane  Jul 24, 2014 9:13 AM
    Love you blog, you really tell it like it is!
  • Nick   Aug 20, 2014 11:27 AM
    If a company finds a cure than that means their income has an end date, it's much more economically sustainable to treat symptoms than to cure disease