Wednesday 1 May 2019

Down the rabbit hole anyone?



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The paper was flawed in many ways; firstly it was out of date with current thinking regarding diet and IBD.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”

www.calprotectin.co.uk

 

https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing












No comments:

Post a Comment