The voice of authority

I’m going to bang on, again, about not believing everything you read online.  I know I’ve talked about it before, several times, but it’s worth repeating because when we’re sick we get desperate and when we’re desperate our logic and reasoning can go out of the window.

Some people write with such conviction and authority that they make you question your own mind.  Even cynical old me sometimes reads a comment or a blog post and thinks “hmmm, maybe I should give up gluten after all” even though I know fine well I don’t have a problem with it.  It’s particularly easy to get sucked in if the article ends with research references, after all the author has obviously based their information on evidence.  Or have they?

I try to be savvy about what I read online and I question everything.  In particular I:

  • Learn about the author.   If they are talking about health issues I need to find out if they are a qualified health professional.  If they are talking about science such as genetics or the basis of disease I find out if they are a qualified scientist or researcher.  If they are offering dietary information I find out if they are a qualified nutritionist.
  • Discover their bias.  I have EDS, MCAD, M.E. and Endometriosis, so when I read about people with similar sounding symptoms to me I automatically think they have what I have.  But here’s the thing: I don’t know them from Adam.  I don’t have access to their medical records.  I don’t know what tests they’ve already had done and which diseases they’ve had ruled out.  I am hugely biased because of my own experience, but my experience may not be someone else’s experience.
  • If they include research references read them.  Their reference may be to one unpublished paper written 50 years ago, in which case it is irrelevant.  Fact is only fact when it is unbiased, been conducted in a controlled environment (ie all participants of the research have the same disease, have been measured against either healthy controls or controls with another disease, and the same testing method has been applied to everyone), has been replicated by another doctor or lab, the outcome has been properly scrutinized by other experts in the field (usually through publication in a medical journal) and, most importantly, the research has been conducted on people not rodents.  If this hasn’t happened it is theory, not fact. I believe with total conviction that I am the best blogger in the whole wide world, but my belief doesn’t make it true 😉
  • If you read an article that you feel resonates with you, google the opposing view.  If you read something on inflammatory foods which you find interesting, try googling “debunking anti-inflammatory diets” and read some of the opposing opinions and more importantly facts (I don’t need to add from reliable, medical sources such as the National Institutes of Health or PubMed).

There are several areas which currently really bother me when it comes to pseudo-science and wild claims, including:

  • Genetics.  People without any scientific or medical background write a lot about genes online and they sound really convincing.  But Dr Afrin in the chapter on genetics in his book on MCAD sums up well our current position when it comes to the world of genetics and it’s this.  “The truth is, we really don’t yet know what 99.99% of this stuff truly means………..Diseases are complex systems, each with many, many interlocking/interacting phenomena and to think one can understand the entire system by knowing merely a few tiny parts of it is the height of naiveté.”  So bear that in mind the next time you read stuff online about c-KIT and Methylation from some convincing author without a single medical or scientific qualification or access to a laboratory let alone human DNA.
  • Food, in particular gluten, dairy, sugar, “plant-based diets” (so long as the plant isn’t wheat, rye or barley) and “anti-inflammatory” foods.  My regular readers will know all the pseudo-scientific crap proliferated online about food and its role in health and disease drives me to absolute distraction.  Please be more savvy about what you read and believe online and balance this with the opposing view before making any decisions about what you eat.  Jeff Schweitzer, Scientist and former White House Senior Policy Analyst with a Ph.D. in neurophysiology, makes some valid points about inflammation in this blog post for example.  I categorically state that my pages about low histamine food on my blog are based on my own experience and not fact.  I actually takes pains to point out there are NO reliable low histamine food lists online or anywhere else and very little research has been conducted on the histamine content of foods.  If a website contains a low histamine food list you need to be asking where the list has come from, the testing which was carried out to determine the level of histamine, by which methods, if it was replicated by another lab and if the data is publically available to view.  Good luck with finding a single website containing this information because I guarantee you it doesn’t exist.

The reason we lose our reason and have a tendency to believe the unbelievable, is that we’re desperate.  Sick, exhausted, baffled, frustrated, angry, lost and/or frightened.  We want someone, anyone, to tell us what’s wrong with us and how to put it right but sadly life isn’t that simple.  Patients online, persuasive and passionate as they may be, don’t know more than the leading doctors and researchers in the world on their chosen subject, however much they delude themselves that they do.  And currently, researchers in the fields of EDS, M.E. and MCAD freely admit they don’t have the answers.  They’ve recently found some interesting things, which may or may not be part of the puzzle of our diseases, and there are exciting developments in the pipeline but no-one has reached any definitive conclusions as yet, hard as that is to hear.

The one thing I know for sure is that the answers to my health issues aren’t going to come from Bob Smith in Nebraska who has no medical or scientific qualifications yet proclaims from his sick bed that he knows something the leading physicians in the world do not and that the answer to all our ills lies in methylation/a paleo diet/an anti-inflammatory diet/ingesting worms/the vagus nerve/[insert your next wildly unproven theory here].  In fact, that Bob Smith even thinks he knows more than the leading brains in the international scientific world is bonkers yet we, the reader, often believe the Bobs of this world – the stranger on the Internet we know absolutely nothing about – without even questioning or challenging them.  But we need to.

 

 

 

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6 thoughts on “The voice of authority

  1. Glo

    You have taught me well. When first diagnosed with MCAD I was handed a list of foods I shouldn’t eat and came right home and cleared my cupboards. This left me with next to nothing to eat. Then I found your blog. I learned that everyone may react to different things and even when we react it may be from a combination of things eaten in the last several days. By paying attention I’ve learned of things I definitly react too. High on my list are heat stress cheese tomatoes processed sugar and bleached flour. Some of those things were on the list and some not. It’s trial and error. So thank you for giving me sound info and expanding my diet. 😸

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    1. Jak Post author

      Awww thanks for the kind words Glo. You are so right about us all being different when it comes to our triggers and that it’s a matter of trial and error. I stuck rigidly to the ‘low histamine’ diet for the first year too, until I did a bit of research and discovered that, for the most part, it’s based on thin air! Jak x

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  2. Karen, The Walking Allergy

    Still trying to describe it for a similar blog post… Religion has started to play a part in this area- especially in the states. People who believe in ‘intelligent design’ don’t believe in genetic causes for illness. Because our genetics can’t be ‘wrong’- God would never have designed it that way… I know you can immediately see the potential ripple effect of THAT one! It scares the hell out of me. Stay tuned for a more complete post!

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    1. Jennifer in LA

      I have never heard Anjeanette Roberts the molecular biologist say that she doesn’t believe in genetic causes. If you find a quote from her that I can read or listen to on the web I’d like to know. The same for Dr. Jeff Zweerink or Hugh Ross, astrophysicists. Also Dr. Fazale Rana the biochemist. They are all here in California so I know more about them and read their articles the most.

      There are many doctors and scientists that believe in Intelligent Design and the numbers are growing. I met Hugh Ross in person over 20 years ago. He has never said he doesn’t believe in genetic causes for illness.

      Just remember we can’t make sweeping accusations about people. Be specific. Point to the doctors by name so I can research what they are telling their patients and avoid them.

      Just to be clear…I believe in Intelligent Design and I believe in genetic causes. So do all my believing friends. Now you know of someone. Hope that helps.

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  3. Laetitia Lalila

    Hi Jak, THANK YOU!
    It’s really hard to find some reasonable view in the world of disease. You write with fun and wit about something not many people seem to get. I think being cronical ill exposes us sadly even more to the glaring faults in our society.

    So far, what helped me more than any medication/diet/supplement is acceptance. It helped my wallet, too.

    Hugs and kisses,
    xoxo

    P.S. You might just be second best! 😛

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