One of the most annoying things we face as people with chronic illnesses is people who decide they know how to cure us, while having no idea what we are going through. People who don’t realize how condescending their advice ends up being, and frequently how wrong or even dangerous it is. The constant need to give advice or to become the recipient of every single article on the subject of our conditions is something a lot of us put up with, if not actively struggle against.
Most of the time, the urge is spurred on by good intentions. So it gets me particularly angry when it is the failure of science reporting that is the cause of the most recent flood of misinformation being pushed my way.
In the last two months, Crohn’s Disease has trended on Facebook twice: once to brag that a vaccine against Crohn’s has been discovered (it hadn’t) and once to let everyone that they’ve discovered what causes Crohn’s (they haven’t).
In both cases, the articles were written in a way that suggests that the authors (or their editors) had no real understanding of science. That or they willingly inflated a story knowing it was fraudulent, and supported their claims with information that appears significant when it isn’t.
Vaccines against Crohn’s.
In the case of the vaccines article, the whole thing was based on the idea that a link between Crohn’s and a certain bacteria found in cattle had been conclusively found. This wasn’t the case. Rather, there were interesting results found in some studies that suggested a more extensive study could yield more conclusive results.
The case that it was conclusively proven was supported with the lie of more diagnoses based on correlations and not conclusive causations. The diagnoses of Crohn’s disease has significantly increased in the last 50 years, as has the number of people who have access to and who consume cow’s milk. Since there exists a disease among cattle that has similar symptoms in cattle as in patients with Crohn’s disease.
While that correlation is interesting, as is the presence of certain bacteria in a small tested population of crohn’s patience, it is also important to note that there are several other key factors that have led to the increased diagnosis of crohn’s disease including: greater doctor awareness, more access to healthcare, better testing and imaging developments, and so forth. The same argument for example has been used to suggest hyper-immunity imposed by poverty responding to increasingly sterile conditions.
If however the link is proved conclusive after more years of study, it is possible that a vaccine may be able to be developed that would prevent crohn’s in future generations sometime in the next decade or two.
Fungus as cause of Crohn’s
This newest trending discovery talks about the fact that they found a certain fungus present in a local population of crohn’s patients that wasn’t found in the local non-crohn’s patients. Clearly the link is proven right? Nope. The study consisted of what appears to be less than 100 people. In terms of science “proofs” that barely merits a blip. It is a study that shows a further area to look into but is hardly conclusive.
Crohn’s patients are often recipients of immunosuppressive therapy. Perhaps that is why they had the fungus when others didn’t. The same reasoning can be used for the bacteria for that matter.
The point of studies like this are not to FIND THE ANSWER once and for all, but rather to see whether a certain area of research is worthy of further exploration. If they had not found a difference in the two populations, it would have meant that it wasn’t worth further study. This study showed that that wasn’t the case.
It’s interesting and certainly a worthy avenue for research but it makes for boring copy. It doesn’t sell articles if your headline reads: “Scientists have discovered that they can’t rule out fungus as a possible cause of Crohn’s, along with bacteria, history, milk, and evil eyes cast by jealous neighbours” or perhaps “Grad student discovers that thesis they came up with in order to apply for school was not completely implausible but professor will still get all the credit.”
I understand that science writers have a difficult task presenting important but less sexy discoveries as worthy of interest to a populace that is increasingly spoiled for entertainment. It’s a tough beat. But the hyperbole that is created around these stories does real harm to patients.
Imagine being in the middle of a flare, being in pain, being constantly sick, then reading that there is a cure for crohn’s. Finally some relief. Nothing else has worked. You call the doctor only to find out not only can’t you get the so-called cure, it’s not going to be available any time soon because actually, it doesn’t exist yet.
Now imagine that happening regularly.
Not everyone is science literate enough or familiar enough with how scientific studies work to be able to recognize where the article is being hyperbolic. It’s not just the patient either. It’s family, friends, coworkers, all of whom get hopeful, only to discover that it was a false lead.
As patients, we already deal with a lot of disability and illness shaming a victim blaming. We get told we don’t look sick, or that it can’t be as bad as we say. We get told that we aren’t trying hard enough to get better. When these articles come out, it adds additional ammo to the slings and arrows of those looking to add to our disability guilt.
Now we have to deal with people telling us that we wouldn’t be sick if only we had gone vegan.
Now we have to deal with having to explain to people that no, it’s not that I haven’t asked my doctor for the cure or badgered him enough to give it to me. It’s that it actually doesn’t exist anymore. Except no one believes us because they read in the huffington post, or in science daily all about how they found a cure. So we must want to be sick.
I need science reporting to get better. I need it to start helping people actually gain an understanding of medical science rather than selling us Unicorn Tears. I’m sick of having to spend time explaining to multiple people why the article they sent me is wrong. I’m sick of having to waste the precious little energy I have on correcting the record because I can’t trust journalists to do their job right. We need to fix science reporting or at the very least, I need people to apply a little more skepticism to the articles before they send them to me and start sharing them on their pages.