Busting IBD Misinformation: Tips for Patients

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A huge number of patients who have a chronic illness will turn to the internet to get their information. Unfortunately, most of the information they come across won’t be true.

Misinformation has always been a problem, but the rise of social media and the simplicity of creating a platform to spread bad information has made it more difficult for patients to

In this article, I’ve put together tips to help protect yourself from misinformation and frauds.

Video

Here’s a video recorded in Orlando, Florida during the week of AIBD 2016. Me and some of my patient advocate friends shared our experience when dealing with IBD cure claims and misinformation.

https://youtu.be/UcnJfzNCFI4

You can find my friends at:

Dan Sharp: http://dansharpibd.org/

Sara Ringer: http://www.inflamed-and-untamed.com/

Megan “The Front Butt YouTuber”: https://www.youtube.com/user/TheFrontButttuber

Tips That All Patients Should Know

Nothing can send your life into a whirlwind like navigating life as a new patient.

  • Educate yourself. Being an informed patient should be one of the first steps to take after being diagnosed with a chronic illness. Not only can learning about your illness and the available treatment options help you with making decisions about your care, but it also allows you to separate fact from fiction more easily.
  • Be skeptical of information that sounds too good to be true. Cure Crohn’s in 30 days? Yeah, that’s just BS.
  • Don’t believe everything you read. Whether it’s found on Google or not, not all information needs to be believed. I provided some tips for the newly diagnosed in THIS article.
  • Ask questions about treatments or claims you come across. If these can’t be answered or the answer is vague, it’s probably not true or someone has something to hide.
  • Remember that feeling better does not always equal clinical remission. When you come across testimonials from people who’ve tried a new diet or supplement to “heal” their IBD, remember that symptomatic relief doesn’t mean any actual healing took place. It’s also common for people to experience the placebo effect when trying something new and they often misplace their reduced symptoms with the change they’ve made.
  • Always look for sources for claims when reading an article. A lack of sources often means poor information, and low-quality sources usually mean a bias or lack of understanding. If the author of an article you’ve read can be reached for questions, ask them to provide sources for any claims you’re curious about exploring.
  • Nothing is easy when it comes to treating serious chronic illness. If an ebook claims to have an “easy cure” for your illness, it’s probably bullshit.  Even with the best treatments we have available, there may be a lot of trial and error before things get better.
  • Find treatments that have a proven track record. Ideally, you’ll want to gravitate towards treatments that have been shown to provide benefits in multiple studies with large groups of patients living in different countries.
  • There are no single treatment options that work for everyone. Anyone claiming to have a “cure all” remedy is trying to scam you.
  • If you share articles on social media, be sure you understand what you’re sharing. Often times misinformation is shared (and believed) on social media because people tend to trust what their family and friends share.  If you’re the type of person who shares based on the headline of an article, stop and read the article first, or simply don’t share it.
  • Shares and likes don’t equal accurate information. If you come across an article about a potential treatment, remember that the number of likes and shares don’t always speak to the accuracy or quality of the content. I’ve seen many very misinformed posts being liked and shared by thousands of people on social media, and it makes me wonder if anyone’s actually paying attention to what they are liking and sharing.
  • Not all medical professionals are qualified to diagnose and treat IBD. Sorry, but your Chiropractor shouldn’t be treating your bloody stools brought on by Crohn’s Disease.
  • Homeopathy is 100% bogus, and most alternative therapies are unproven to benefit patients who have IBD. While I understand that there are many people who promote these things as forms of treatment, they are often unproven to work and sometimes shown to do nothing at all (beyond placebo).
  • Remember that only you are responsible for your own health. Use that knowledge as an incentive to seek out good information.
  • Follow up with patients in testimonials of products that claim to cure IBD to see if they are still in remission. Many don’t realize that it could take months or years to relapse after discontinuing your medication. Just because someone claims to have been cured a few weeks after trying a new herb and discontinuing their meds, doesn’t mean it’ll last.

Red Flags

Most bad information share the same patterns, which are often quite easy to spot.  If you find yourself reading an article with some of these red flags, be sure to use caution.

  • Clickbait or Sensationalized Headlines. “5 Health Secrets Your Doctor Doesn’t Want You to Know” may sound interesting, but the article may disappoint you.  Anytime I see these “they don’t want you to know” headlines, I cringe. I wrote an opinion piece on why misleading headlines harm patients HERE.
  • Words like “Healing”, “Cure”, “Detox”, “Cleansing”, especially when they are not clearly defined. Does “detoxing” actually mean anything? Can you “cleanse” yourself into better health? Unless buzzwords are clearly defined by the author, don’t take them too seriously.
  • “Cures” available through ebooks or expensive online courses. I’ve seen this time and time again: You come across a website or YouTube video where someone claims to know the cure for IBD (or any other illness for that matter), but they kept their little secret tucked into a $30 ebook or $200 online course.  And they also sell their own supplements, too. I’ve wasted thousands of dollars pursuing these ‘cures’ only to still be stick and out of money. Don’t fall for these traps.
  • Articles/videos without sources. It’s easy to say something works, but harder to prove it. If someone claims to have “10 Ways to Control Your IBD Flare”, they sure as hell better come with proof by linking to published research or validation from an expert in the field.
  • Claims that are based on a few anecdotes. It may be entertaining to read about someone who ate stale bread to cure Crohn’s Disease, but that doesn’t mean it’s true. Even a handful of anecdotes may not make the claim true. Use caution when exploring treatment based on testimonials (rather than research).
  • Articles that use IBD and IBS interchangeably. I mean holy shit. It’s amazing that this still happens, but it does – over and over again. This shows a lack of understanding by the author and it tends to discredit much of the information that follows. I became so fed up with seeing this mixup that I even whipped together a parody video.
  • When someone backs out of a claim they made once they are challenged on it. Have you come across a social media post where someone claims to be able to heal your illness, but when questioned for evidence they either avoid answering you or block you entirely? Yeah, they are scammers.
  • Success stories that are based on short-term results. I see this often on forums where someone may explain that they just started a new diet and are “cured” or “healed” after a week. Not only does this show a lack of understanding about how IBD affects us, but it makes assumptions that a) the new diet made them feel better b) they are cured without any internal investigation (i.e. a colonoscopy).
  • Guilt trips (i.e. “Don’t you want to feel better?”). This dirty selling technique gets you try a bogus therapy out of guilt. The seller wants you to believe that unless you’ve tried their “cure”, you haven’t done everything to make yourself get well again.

Summing it Up

Misinformation and scams will always be around if there’s money to be made.

It’s crucial that as a patient, you can detect when your bullshit meter goes off and act accordingly. It’s totally fine to ask questions, ignore misinformation, or even call it out (and I suggest you do in a public forum to help protect others).

Follow reputable doctors and patient advocates on social media to see what kind of information they are sharing, and ignore the stuff coming from media outlets that are known for clickbait or low-quality content.

In the end, we need to make decisions about our health and treatment plan, and only you can be the one responsible for those decisions.

Question: Do you have any tips for spotting scams and misinformation?
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4 thoughts on “Busting IBD Misinformation: Tips for Patients

  1. Great article Eric! A few things that I come across are stories making claims and include sources and references that may come from fake or predatory journals that supposedly support their claims. The source may even be an another article or newsletter that has no research behind it. If the questionable article cites a source from a reputable journal it often taken the findings out of context or they results they found were weak.
    Even some research journals can use p-hacking which is taking data and manipulating it to generate statistically significant relationships without an underlying hypothesis. It is the essentially trying to prove causation through correlation.
    My favourite are new stories which start out as ” Research has come out…….” (or variation of) which mostly exaggerate or flatly get the original research wrong. A more humorous take on scientific research is by comedian John Oliver;

    https://www.youtube.com/watch?v=0Rnq1NpHdmw&t=578s

    Here are a couple of articles and sources on fake journals;
    http://beallslist.weebly.com/uploads/3/0/9/5/30958339/criteria-2015.pdfhttps://
    http://www.newyorker.com/tech/elements/paging-dr-fraud-the-fake-publishers-that-are-ruining-science

  2. Morning all, watching the video has brought back some memories of all the newspaper clippings and facts I was given when first suffering with IDB. From possible causes ie having tonsillitis as a child, former sin in my life.I had friends and family (every one meant well) bring me every weird pill and potion you can think of. I have to add some of them where so bad they made me worst. I have also come across patients who have put them selves in danger and have went against the good advice of their doctor. As stated these quacks are trying to gain for themselves and not worried about your health

    • It really is unfortunate that we become so desperate for relief that we literally turn to anything that sounds like it might help, despite the risks that come with it.

      I wish more was done to prevent snakeoil from being sold or promoted.

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