Time to say goodbye

Over the past few years I have noted that misinformation has become far more prevalent on the internet than actual information.  A person can painstakingly read academic articles, distill from them what is relevant and write about that and about their lived experience.  Or a person can just make stuff up, because they want it to be so, and write that instead.  More and more, I’m beginning to understand that most people cannot tell the difference.

I’ve been writing about CIL for ten years.  I wrote a lot about what I was going through with Louie back when he was still alive and these problems were ongoing, at a blog called “Save Louie,” and you can read about my experiences here.  The posts on that blog will give you a blow-by-blow account of what it was like ten years ago to try to save a dog with this disease.

After I stopped writing there, I started this blog, and continued writing articles to share with people what I had learned.  Back then, this was a frontier that had not been traveled successfully very often, and there was nothing online about it except a few articles that referenced some very outdated research.  I was working in a medical research department for a big university, which gave me access to scholarly journal articles in veterinary medicine (and human medicine, too).  I did a lot of research and was determined that other people with dogs that had this diagnosis would not need to go through the processes I had gone through to gather information, so I wrote articles about dietary needs, how to cook for them, how to care for them, what to watch for, when to not get discouraged.

I started a couple of online forums to try to create community so that we could share our experiences.  Then Facebook came along and made forums obsolete, because no one wanted to learn how to use a forum.  So Facebook it became.

Somewhere along the line, the lines between information and misinformation became blurred, and the misinformation on Facebook went from a trickle to a flood.  I began to notice more and more people coming to the Facebook group who demonstrated little to no willingness to learn about this disease, its treatments, its relationship to other related diseases, despite being encouraged to read everything on this blog.  Then I noticed a more recent trend to start labeling everything “PLE” and to start assuming that treatments that work for CIL will work for any protein losing enteropathy.

I honestly do not know where this has come from, but it has become difficult for me to keep up with the misinformation and the potential harm it can do.  When I see anyone whose dog is sick, I only want that person to understand better how their dog can be helped.  And when I see people coming to the Facebook group whose dogs do not have CIL being advised about treatments for CIL, it seems to me to be a big problem, and one with potential to do harm.  So I attempt to address these things by writing additional articles, and by advising everyone to read the articles in order to become better informed.

Some have done this, but many will not.  And to that, I say, that’s too bad.  Because I do not have the time to handhold everyone through developing an understanding of this disease so that they can help their own dogs or lead them through the flood of misinformation to a better understanding. What I’ve always tried to do is to provide information by writing articles with the idea that, if I wrote articles, people would be interested, read them and then make better decisions.

There are elements out there that seek to confuse you, because they have not done the research or lived the reality and are more concerned that their feelings were hurt because I or someone I know told them they were going to have a problem with trendy diets or something else they didn’t want to hear.  Let’s take raw feeding as an example.  I’m not anti-raw by any stretch, but raw diets are problematic for CIL dogs because you cannot eliminate enough fats from an uncooked diet, and because raw foods contain pathogens that these dogs, with compromised immune systems, may not be able to fend off. However, when I speak up about this, there’s always an outcry from people who are slavishly attached to raw feeding and view any attempt at reasoning through this as an attack on their preferred feeding method.

So sometimes people get offended and stomp off in the name of “freedom of speech” to start other groups where misinformation is welcomed.  And if someone wants to find their own corner of the internet and start a group where members are free to suggest you feed a raw diet to dogs with CIL, I can’t combat that.  I do know that dogs will die because of it, but at least they aren’t dying because of my group.

If someone wants to stomp off and start a group that throws all the forms of PLE together and suggests they are all to be treated the same, I can’t stop that, either.  Those people are free to make up anything they want, based on no research at all, and there are people who will gladly go with them.  And, as long as this group is open, I also can’t stop those people from coming back to this group and spreading the misinformation they’ve “learned” to our membership here.

I believe this is what has been happening in this group. The only cure for any of that is for you to get educated so that you will recognize fact from fiction.  I’ve always tried to keep those kinds of misinformed opinions to a minimum on the Facebook group, but  I really don’t have the time to police them anymore, nor do I have the energy or time to deal with the fights that they provoke, and I am not responsible for the health of your dog.  You are.  And if I can’t convince people to even read the information they need to understand what’s helpful and what’s harmful anymore, it’s time to let go.

Someone said to me recently that people just come here and ask questions because they are frightened and confused and just want answers.  Well, yes, that’s reasonable. And the answers they need are generally contained in the articles I have written, but you have to read them.  And I’ll admit that it’s hard to even know it’s there because there are too many voices shouting over each other on Facebook and not enough dedication within the membership to just putting the information in people’s hands.  I can count on one hand the number of times I’ve seen any good article reposted on the group, whether written by me or by anyone else.

So my conclusion is this:  Facebook is a terrible platform for support.  The better way to support this community is to just leave this information here on this blog so that people who need it can search for it and find it.  And that’s what I’ll do.

This is likely to be my last post here, unless something new occurs that inspires me to think about CIL again.  Louie’s been gone for six years now and my struggle with CIL is a fading memory.  This blog and connecting with the CIL community have been two parts of a rewarding  journey, but I have an active and busy life and I am ready to move on.  Louie’s legacy has been active for ten years and hopefully there will be a few who will stumble upon these pages and find them helpful in the future.  And if I ever read about a cure or a great new treatment for CIL, I will be sure to write about it here.  But I am no longer interested in maintaining a community under the mounting pressures of misinformation that is so prevalent on today’s internet.

To all whose paths I have meaningfully crossed here over this past decade, I thank you.  I hope someone else will take up this cause and carry it into the future.  And I hope it is someone with the knowledge to do it the way it needs to be done, and the fortitude to weather the tides.

Louie and I wish you all the very best.



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