After reading comments on a story about a young woman suffering from Scleroderma, I became frustrated reading all of the comments on how she could be cured if she only tried 'this diet', or 'that therapy', or went to yoga regularly. It is incredible how often the idea of "anecdotal evidence" is confused with proof.
Let's play a game about "Anecdotal Evidence".
Here is a fun fact:
I was once diagnosed with a liver condition. Fully diagnosed. With scans, bloodwork, and biopsies of my liver - multiple times.
Every single one of those tests concluded, unequivocally, that I suffered from a liver disease called Primary Sclerosing Cholangitis.
It is a severe auto-immune inflammatory liver disease that usually requires a liver transplant at a young age, and is very closely related to other diseases like Ulcerative Colitis.
I took medication for this disease for over 3 years, and my bloodwork would fluctuate. Most of the time, with medication, it was relatively stable, but without medication (whenever they tried to ween me off of it) it would go haywire. Blood tests were done twice a week to monitor the symptoms and enzyme levels.
Then some interesting things happened. Some interesting things were going on.
- 3 years later, I had an emergency surgery to remove my large intestine due to the severity of my Ulcerative Colitis.
- During that time I had also been on a diet of bland, boiled, unseasoned chicken, and bland, boiled, unseasoned white rice.
- After that surgery I was eventually removed off of Prednisone.
- Due to that surgery I also could not play volleyball, basketball, or any true contact sport that year.
- That year I enrolled into dance classes so I could remain active.
- Our family had also moved into a new house in another part of the city we lived in.
- After surgery I stuck to a gluten-free, dairy-free diet.
7 months later, I had the internal J-Pouch created and reconnected.
While they were in there performing another massive abdominal surgery, they took more biopsies of my liver. There was no sign of deterioration - NO sign of the disease anymore. They did bloodwork for several more months, then removed me off of the medication, and have been monitoring my liver enzyme levels ever since. Only a handful of times did my enzymes ever go wonky - so the diagnosis of Primary Sclerosing Cholangitis was removed.
Now, in the medical world, this is impossible.
So - should I start going around telling people with PSC that they can cure their disease by one of the various things I was doing at the time? Because of my - very odd - experience, should I go to support group sites and tell them that if they just get their intestine removed they would be cured? Or if they ate chicken and rice for a few years they would be cured? Or maybe the HOUSE they live in is causing the disease - some environmental factor or housing materials caused it? Or that because I went on a gluten-free diet they would be cured??
Do you see how ridiculous that sounds?
Now the question is, what do I believe?
Well, if it is truly impossible that you can suffer from a degenerative liver disease and be magically rid of it, then I believe it has somehow gone into remission (almost a dormant state in this case), and may, one day, come back. I also wonder if my HAE had affected my liver, and my body's response to my intestines transferred there, mimicking the disease.
In short, I do not believe I was cured at all. I believe that I either have it and it is in hiding somehow, or that I never had it at all - that something in my body completely mimicked that disease for three years on every possible diagnostic test.
The point is, my experience is the exception, not the rule. This situation has baffled all of my physicians and no one has an explanation for it.
But if I truly believed that I was cured of this incurable disease because I went on a gluten-free diet, then I guess I should go out and tell every single person who ever had any liver disease that this diet will cure them...obviously...because if it worked for me it will work for everyone else right?? <note sarcasm>.
**Anecdotal evidence is NOT proof**
Aside:
If I wasn't SO against the spread of misinformation, I would actually perform a social experiment. I would go onto every single liver disease support group (from liver Cancer patients to PSC patients to cirrhosis patients) and comment on each one a different opinion about what 'cured' my PSC. See how quickly that information got out, see how those patients react, see if any healthcare 'specialists' latch onto my claim and see how long it takes for them to peddle it to the masses for insane monetary expenses.
Before you claim you were cured and that someone else would be cured if they did what you did, read through 100+ comments (takes 5 minutes). Someone else has probably already written it, and the patient may have very well already said it was something they already tried.