So, what you are saying is that giving a person who is experiencing a
side the opportunity to put it words that make sense to them is a bad
thing? I disagree. People who live with these side effects daily and
cannot articulate to a medical provider how they feel carry a huge
burden because of this. This is not in anyway shape or form
misinformation. This is accurate information provided in a way that
makes sense to the people who take these meds everyday. To the medical
community this may be misinformation. To us, it makes perfect sense
because we live with it everyday.

Thank you for taking the time to reply.

On Feb 2, 8:57 pm, BrainD...@PiratesCave.gov wrote:

Thank you Braindead

I think alot of the posters here are missing the spirit and mission of
this site.

Here is what it is not.

It is not a place for people to slam drug companies.

It is not a place for people to discuss treatment for their illness or
for their side effects ( They need to do this with their doctor, not
on a website).

Here is what it is

A repository of information compiled on side effects in patients own
words.

Here is what the goal of the site is meant to achieve

1st phase

Compile this information based upon patient contribution into the
wiki.

2nd Phase utilize the information compiled from the wiki to allow
patients who are experiencing a certain side effect to tag it to a
medication, and then use the information provided by patients, along
with the side effect definitions provied by patients in their own
words to identify any trends that the medical community is unable to
identify due to the prescribing of some meds on a global scale.

This information that patients submit """Anonymously""" will be fed
straight back to the wiki and attached to the side effect.

It is the intention of the site to be used in this manner once it is
populated with data. I will use an example.

John is experiencing a side effect due to medication he has been put
on. The side effect is not common, and when he has shared it with his
doctor, his doctor really has no idea how to treat it and is not
really able to understand what is John is experiencing as he cannot
really put it into words.
At this point John is faced with a decision, he can quit taking the
med and possibly die or at the very least his life will have to be
alterably changed....or he can deal with the side effect, and make
other changes in his life.

At this point John is referred to our wiki by a friend. When he comes
to the wiki he begins to read through the side effects tagged to his
medication, and finds a side effect described by another patient that
is as the patient describes it is very very similar to what he
experiences. He notices at the bottom, that he can fill out a profile
and add his information to our database to help increase the
understanding of this side effect.

While filling out the profile, he selects the listbox which says that
he smokes. After completing his profile he runs a report which
compares his data such as age, weight, race, height and sex to others
who have the same or similar physical characteristics.

Once he has completed the profile, he can now run off the report with
the data showing all those similar to him in physical characteristics
along with the description of the side effect he is experiencing which
was provided by another patient on the wiki.

He then takes this report to his doctor, and they both notice that
every single individual who has this side effect is a smoker. Also, as
the doctor reads the other patients description of the side effect it
really clicks, and the doctor is able to identify how it may be
treated, or they may be able to identify it as another illness or
whatever.

***Please remember...........this is a hypothetical situation. Whether
tobacco could cause medication to cause a side effect I have no
clue.***

In closing, here is one thing that I want to point out to anyone
reading this. Some of the responders to this post have said that our
wiki will fill up with misleading junk data that will confuse the
patients. My response to them is, the nature of the site prevents that
from happening. If a person enters junk data, no one will tag it as a
valid side effect because they are not going to reply to it unless
they experience it themselves. The site is user driven, and the
patients themselves will validate or invalidate a side effect.

I hope I have helped bring some clarity to this post, and that if you
are a person who would like to contribute to this site by adding valid
content it is something that has the ability to benefit all of us.

Best,

Dave

They are certainly not perfectly representative. But, they are much more
representative than the type of anecdote-gathering that is being done here.
You can't call this a study.

So are you saying that the drug companies and FDA don't do proper studies,
so it is ok if someone else does a totally unpresentative data-gathering
with no quality control at all?

No, but the limitations of the studies are described in the papers. And, not
being representative is one of their strengths.  For example, a study that
looks at the incidence of cancer in people who have a gene that is linked to
colon caner would bring in more useful data than one that is
"representative."

And this anecdote-gathering is an even weaker design.

And this ancedote-gatherign has even poorer data-gathering. At least the
drug companies and FDA have an idea of what side-effects to look for and try
to determine which events are side-effects of other drugs.

You are free to do what you want.

However, the anecdotes gathered here will be practically worthless. The only
thing worse than no information is harmful information. And I think this
site falls into the latter category.

Is there even a scientifically-vetted rational for this anecdote-gathering?

Jeff