Patients Experiences | Arthritis Information

Share your Medical and Alternative Medical experiences with others "The purpose of this website is to provide the opportunity for those who have one of the above enumerated medical conditions, to make public any event which either relieved, aggravated or caused the condition.

Who Benefits?

We have also provided a mechanism for you, the public, or the medical profession to search the entries for information written about any of these medical conditions.

It will be both valuable and interesting to see the frequency of events that affect each one of the medical conditions.

The results of our analysis will ultimately be sent to the medical profession in order to encourage their analysis."

Without knowing more about you, I would not provide the personal information that you request here:

<> Joie, I suspect you're right. I'll go a step further and say that I think that this may be related to the website Belinda Shale posted a few days ago......which incidentally is down now.We don't know who Belinda Shale is nor does this website has no relation her.

It's good to see suspicions about websites. However there needs to be a basis for suspicion. Please note that no personal information is required to make an entry to patient'sexperiences.com, not even your real name or e-mail address. The purpose of this website is exactly what it is described to be. All of us who have been afflicted with one malady or another should have an opportunity to learn what has helped others with the same malady. The medical profession does not provide this information and the most alternative medicine advocates seem to only want to sell a book. This website attempts to build a bridge to information that is otherwise unavailable. Your user name "webads" is enough to make me suspicious. Sorry. For what it's worth, your website is too generalized, covering too many conditions and non-specific information. In short, it's synonymous to going to a GP when one needs a Rheumatologist.

With that in mind, and given the AMA's propensity for reliable scientific and clinical data, I don't see how the information would be useful to any medical group as you indicate.

As far as sharing information with other patients, I much prefer coming to a website such as arthritinsight.com where the forums are disease specific and I can get all the feedback I want, not to mention being able to talk about my experiences with meds or conditions or treatments.

I need to tell those that visit this website that the goal of this website is to develop alternative medical treatments that have shown to be of benefit, even though ignored by the medical profession. I know, from history, that the medical profession will probably not adopt any of these remedies.

It is becoming obvious from the comments above that this may be an exercise in futility. It is apparent that even though no advertising is being done on website, we have no connection as an affiliate or otherwise with anyone selling anything medically and we aren't even attempting to develop a mailing list as demonstrated by the fact that we don't ask for anyone's real name or require an e-mail address for any entries. The readers are looking for evil intent regardless.

It could be that, as a result of the political dishonesty of our leaders, our society has developed into a knee-jerk society of suspicious citizens. Maybewe are beyond honest help.

The website may not be perfect as it stands. Our intention has always been to see what happens and smooth out and improve it as time indicates the necessity. At the beginning it was our intention to acquire enough entries from the citizenry to guide the further development of this website.

Unfortunately it is beginning to appear that the public's fear of the risk of doing something that may benefit others financially or otherwise (volunteering anonymous information) is more than they can handle. We are therefore going to maintain this website for another week or so and if this suspicion continues we will remove the website from the Internet and on to other things which may benefit the public in other ways.

Finally, for the information of those who have posted to this forum, I am a retired attorney 83 years old and I need your money like I need a hole in the head. [QUOTE=webads].......the goal of this website is to develop alternative medical treatments ..... I know, from history, that the medical profession will probably not adopt any of these remedies.

........The readers are looking for evil intent regardless.

It could be that, as a result of the political dishonesty of our leaders, our society has developed into a knee-jerk society of suspicious citizens.

The website may not be perfect as it stands. Our intention has always been to see what happens and smooth out and improve it as time indicates the necessity. At the beginning it was our intention to acquire enough entries from the citizenry to guide the further development of this website.

Finally, for the information of those who have posted to this forum, I am a retired attorney 83 years old and I need your money like I need a hole in the head. [/QUOTE]

I certainly didn't understand that your goal involved alternative treatments. My understanding was that it was a place to share medical and alternative experiences. That said, it would be of no interest to me since my personal belief is that with RA you need time-honored medical treatments and not alternatives, which only delay treatment and result in degeneration.

If you know from history that the medical community will not adopt them, why do you state in your website, or perhaps it was a post on this forum, that you would turn info over to the medical society?

Looking for evil? Suspicious? Not at all. The problem is that you are in the early stages of development and soliciting contributions is way premature. The way I see it, if I'm driving a Mercedes and you have a new car you want to sell me that the world has yet to read about, you need to market it in such a way where you point out how it's better than what I'm driving. You haven't done that. Instead your website seems to be a potpourri of cars, tanks, planes, trucks...... In fact, your website isn't specific at all, which leads to confusion.

Consider that many people have been victimized by identity theft, I for one. Even though your website claims not to collect real information modern technology is such that it wouldn't be that difficult for you to collect it by covert means. While your intentions may be pure, the reality is that we are indeed a skeptical public by necessity.

You might want to think about your target audience first and your objectives and incorporate all of them BEFORE you launch such a website.

This site seems redundant. There already is one that has been around quite awhile that has areas for 6 + kinds of arthritis (plus dozens of other diseases). You note what your treatment choices have been (alternative included) and they compile it and you can see what treatments people are using and how they rate the success. They also match symptoms between diseases and give the percentage of things they have in common.

It was "A Winner of the Mayo Clinic iSpot Competition for Ideas that Will Transform Healthcare (2009)" It's got it all, it's free, it's anonymous. I think you should kick in with them and let your site go. It's called CureTogether, I'm not posting the link because I'm not trying to promote anything.

Good luck to you fellows. Excuse me for asking you to anonymously share our good and bad experience with others. The ostriches win. Careful now, don't learn from the experiences of others. Don't anonymously share your experiences with others. The Goblins might get you. I've learned my lesson. I'll only contribute to the Salvation Army. The health issues I can find out for myself and it's not ONLY from the medical profession! Talk about parochial attitudes, whew.
Webads,

I really resent you calling us ostritches or declaring that we have parochial attitudes. Why on earth would you think our heads are in the ground? Our membership has more knowledge about autoimmune diseases, treatments, drugs, clinical trials, etc., than you could possibly hope to integrate into your website. Apparently you haven't been paying attention to THIS forum, in which we share empirical experiences with treatments, pain, etc., etc.

My perception is that you cannot take any constructive criticism.