In this months blog I wanted to focus on the
many Crohns forums and discussion groups, and how we can fall in to the rabbit
hole of information, misinformation, and personal opinions.
With chronic illness comes the need for
answers, with the advent of connectivity we can sometimes find ourselves
overwhelmed with the sheer amount of information out there. In the past (pre
internet) one had to be content with the 20 minute appointment with our
consultants, or maybe a trip to the library. However, we now find ourselves
with multiple sources of information at hand, that being the online forums and
groups discussions. Over the years I have been a member of at least twenty Crohns
forums and discussion groups and at times found myself spending hours at a time
sliding further into the rabbit hole.
The positives and negatives of online
forums is that anyone can post anything, no matter how accurate, insightful or
reasonable it may be. Moreover, simply posting a comment gives it a form of
credibility, with even the most compiling comment fading into obscurity as
additional comments accrue on the topic.
You will also find that some questions are
asked over and over -- perhaps only a month or two apart -- each time, no
doubt, by someone new to the forum. Annoyed readers scold that you should
review prior topics before adding your own post. I wouldn't think to do so and
I don't fault others for failing to search history. People want an answer to
their own question rather than someone else's.
I find myself concerned with posts I read from
members on certain forums who post with the authority of a GI but have the
credentials of a shop assistant. As an example I followed a discussion regarding
diet and IBD, the thread began with a newly diagnosed member asking if diet had
any impact on their IBD. Then came the reply from the admin of the group who stated,
Diet has absolutely no bearing on the status of IBD, he even attached a study
to back up his claims. If you’re a regular follower of this blog, you will know
my entire and most successful approach to dealing with CD is diet! So I was interested
to read the paper
The paper was flawed in many ways; firstly it
was out of date with current thinking regarding diet and IBD. The study was a
small cohort of subjects who tried the SCD diet for only three months and of
course the outcomes were unsuccessful. As we now know diet plays a massive role
in IBD;as a veteran of CD my concerns with this thread like many threads are
they are simply not accurate, but posted with confidence and a paper to back it
up immediately gives it credibility.
Another example I came across recently was a
thread discussing Calprotectin levels, a subject close to my heart!! The thread
discussion was basically that one couldn’t rely on the results of a faecal
Calprotectin test because it’s not accurate enough? This is of course totally
wrong and the implications of the discussion could discourage CD patients from
asking for the test and not feeling confident that the results are accurate. I
don’t want to get evangelistic about IBDoc, as you know I find it a remarkable
product. But these kinds of threads can be unsettling to an already vulnerable
person.
When used correctly forums can help with the
isolation of chronic illness you can connect with other suffers and share ones
own experience, also they can offer valuable recourses and research papers. So
my advice is to research any claim of treatment, or cure with hard evidence.
Look for peer-reviewed papers on the subject, and get a general over view of
the forums posts and attitudes. Hopefully this way you will avoid “ going down
the rabbit hole”