TOPIC:

I thought this was good - we need to remember that not all we read via the web is correct whether it's for a cold, ITP, broken bone, lupus, or whatever.

Melinda wrote:

I thought this was good - we need to remember that not all we read via the web is correct whether it's for a cold, ITP, broken bone, lupus, or whatever.

... and when you hear hoofbeats, it's probably not zebras!

quote; "and when you hear hoofbeats, it's probably not zebras!"

Yep, stupid zebras........someone please hand me Occam's razor.


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Occam's razor a theory I live by!


KISS

Keep
It
Simple
Stupid or Silly!

So in other words if you can't kiss don't do it!

On another message board someone uses the name occamsstubble (Occam's stubble). I wish I had thought of it!

Interesting that Occam's razor is often in conflict with not looking for zebras. When presented with seemingly unrelated symptoms, we go looking for one condition that will explain them both, no matter how rare the condition. We are looking for zebras to satisfy Occam's razor. I bet Sandi wishes she had $1 for everyone whom she has reassured that, no, it is probably not Lupus, it's just that if you have an autoimmune disease it is more likely that you will get another.

Zebras are cute, and more fun to play with.

And Jack, you know that you are not allowed to have sharp objects!

"And Jack, you know that you are not allowed to have sharp objects!"

Wait...What? I'm not? Well damn!




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The reason I placed the original post was to remind people that what they find on the web [and testimonials] are not gospel. We have that on here a lot where just because it is on a website it is believed to be fact.

Sorry Melinda, I did kinda distract from your point. I totally agree with you.

My initial zebra comment was to the point, though: I tend to go crazy on the internet trying to find a "unified theory" for a constellation of symptoms, and often some bad theories out there provide easy answers. I think there are others on this site who might recognize that trait in themselves.

First rule: know your source: message boards tend to be unreliable. Even what you learn on THIS (PDSA) terrific website should be taken with a grain of salt, although there are enough really knowledgable people here who will call BS on BS, so that erroneous information has a short life cycle on PDSA.

Second rule: consider the source. If it's Mayo Clinic it's probably legit. But not always (see Rule 3).

Third Rule: take EVERYTHING with a grain of salt REGARDLESS of the source. For example, plenty of blue ribbon sources still promote splenectomy as the best second line treatment.

Fourth rule: If they are trying to sell something, whether a book, some pills, or their services, they cannot be an unbiased source.

Any others?

Depends on the website. Some are credible, some are not. Reading and researching is the only way we get to find out what's going on in ITPLand and to a large extent, we have to rely on that info, assuming it's current. Things change so fast that info from a few years ago could be obsolete. I agree though, there is a lot of garbage on the Internet and these days, you have to sift through pages of that junk to even get to the valid sites. Too much Internet clutter.

Rob, you're right, people do tend to try to find an explanation for symptoms by lumping them together. That can work in two ways; people either assume any and all symptoms are ITP-related just because they have ITP or, they assume that they have something worse than ITP because they also have symptoms unrelated to ITP. Sometimes, the problem is two completely unrelated medical issues but people don't want to see that for some reason. Over the years, Melinda has also spent a lot of time telling people that an odd symptom is not related to ITP.

I think people in general have a tendency to fear the worst (although some can handle things with an amazing calmness). Occam's Razor is a good theory to live by because if you can grasp and believe that, you can lose a lot of the fear that causes stress, worry and panic. Sometimes you have to learn to live with the assumption that everything is fine until the day that it isn't. When that day comes, you will definitely know it.

As far as message boards go:

First, do not laugh at the next sentence! I think that the PDSA is a very helpful and knowledgeable source of information. I say that not because I am Admin, but because this Forum is filled with people who are caring, experienced and well-informed. It's been this way for quite a while now; there have been times in the past when it was not for various reasons. Some of you might remember those times.

I've been to some other message boards and can honestly say that I was not impressed. I'm sure there are good ones out there other than the PDSA, but not the ones that I've seen. I was once even kicked off of a Lupus Message Board because a woman on there was freaking out that she was just diagnosed with ITP and thought she was going to die. I directed her here, without using the link, and was booted off by Admin. My post to her was deleted. I thought that was a bit harsh and appealed, but was not reinstated. I would never have handled things that way here...literally deny a person the help they could be getting in a seemingly dire situation. Things have to be weighed on an individual basis and yes, there are rules here, but there can also be exceptions.

People come here for help and we give our opinions and suggestions. It is up to them to make decisions based on what they read. Most of the regulars know what is crap by now and we don't really allow that to sneak in. If we didn't expect people to take what we say seriously, then why would any of us take the time and effort to post a response and why would we keep coming back? I take all of this very seriously. If I didn't, I wouldn't have been here nearly every day since 1998 (I think I may have only missed about 20 days in all that time). I've lost sleep, I've cried and I've been stressed out by things that happen here. It would have been easier to quit at times than to keep trying to help. I've actually considered it over the years, but I haven't. I've stayed because I know that we DO help people....we really do. That is evidenced any time we see a 'thank you' and over the years, there have been many. I have seen newbies come here frantic and upset, then a few years later those same people are passing the 'calm down' torch to another newbie. You all know who you are. You stay for a reason too.

Well, that is what I think, take it or leave it.

A few thoughts about this thread.

First, the PDSA has proven to be one of the most accurate, helpful, and useful communities I've been a part of since I started using the Internet in 1991. As a result of being involved in various family members and friends' illnesses as well as my own issues, I've been sifting the proverbial wheat from chaff and like Sandi and others, have had my share of bad experiences. Maybe it's in part because ITP is obscure, not glamorous or glorified or otherwise a fascinoma, or because it's generally a chronic condition, the PDSA seems not to suffer from the flaws mentioned earlier in this thread.

Second, Occam's razor, zebras, and other such phrases often discount the importance of conditional probability (also known as Bayesian statistics). This topic is subtle enough to confuse professionals (e.g.: the kerfuffle about the Monty Hall Problem when Marylin vos Savant wrote about the correct solution in Parade Magazine in the early 1990s).

A concrete example: You don't hear hoof beats in a vacuum. You are in a location. If you are in the American Southwest, probably horses. If you're in Africa, more likely zebras. If you're in the right part of Montana, maybe buffalo. And in Jurassic Park, maybe velociraptors. In other words, Occam's razor and zebras work when all other things are equal and when you are a typical member of the sample population. Life is rarely so simple, and conditional probability in the form of Bayes theorem is the tool to use to calculate odds in such situations.

Sorry if that seems like a rant. I've had this argument with several of my doctors over the years. They wouldn't consider things that they thought were zebra (e.g.: ITP), and because of this issue, they delayed treatment.

Last, as Sandi said, do your research. Use PubMed, read the journal articles yourself, and if you need, brush up on your bioscience. Good general science discussion groups can be found at Stackexchange, if you need clarification on something. The hardest part: keep doing it. New research reveals new ideas, standards of care evolve, and new treatments emerge. Also, share your findings here or wherever else doing so may help.

One other point: I often hear, "Why can't they cure this thing already", like it's some simple fix that is being totally overlooked by the medical community. A good place to start would be to read about the immune system. There are sites called "Immune System 101" that are so basic and a very good spring board for the more difficult aspects of the immune system. Once you grasp that, you begin to understand why it's more complex than it appears to be.

Aoi - you did not sound like you were ranting. Not at all.

So, you can't even trust the research papers:

Why Most Published Research Findings Are False
journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0020124

Summary

There is increasing concern that most current published research findings are false. The probability that a research claim is true may depend on study power and bias, the number of other studies on the same question, and, importantly, the ratio of true to no relationships among the relationships probed in each scientific field. In this framework, a research finding is less likely to be true when the studies conducted in a field are smaller; when effect sizes are smaller; when there is a greater number and lesser preselection of tested relationships; where there is greater flexibility in designs, definitions, outcomes, and analytical modes; when there is greater financial and other interest and prejudice; and when more teams are involved in a scientific field in chase of statistical significance. Simulations show that for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias. In this essay, I discuss the implications of these problems for the conduct and interpretation of research.

I wonder if this applies to published research findings finding public research findings false?

This may be true and probably is. Everything I post here are articles provided by the PDSA, Blood Journal or the NIH. That is about as credible as it gets. All we can do is try to rely on the information we are given or stop researching altogether.

The study Rob16 mentions is well-known ins mathematical circles, though it's meaning is still debated today (see "How Not to Be Wrong" by Jordan Ellenberg for one good discussion). It doesn't mean that most findings are false, but rather demonstrates the lack of reliability in the studies.

In simple terms, we can show that a lot of the studies may not be particularly reliable, but we don't know which ones they are. The difficulty centers around the "level of significance" or "p value" in statistical studies. The popular 95% level (p at 0.05) is a bit arbitrary, and data is sometimes tortured until it confesses or forced to fit a desired/preferred outcome. So the usual caveats apply: find results that have been reproduced several times by competing groups and published in major journals. That reduces but doesn't eliminate the possibility of error.

On the topic of reliable medical info online, I found this handy resource earlier today:

caphis.mlanet.org/consumer/index.html

It lists the "Top 100 Health Websites You Can Trust" based on simple criteria and includes sites such as the DCD, Medline Plus, and Cochrane Review.

I posted that tongue in cheek, but your responses are spot on.

I trust PDSA more than any other source, as it is the amalgamation of a variety of sources sifted through some very intelligent and knowledgeable minds.

Rob16 wrote:

I trust PDSA more than any other source, as it is the amalgamation of a variety of sources sifted through some very intelligent and knowledgeable minds.

That's one of the many things I like about this group.