Sunday, October 11, 2009

The Knee Geek/Guru Site

A friend of this blog contacted me last week. The The Knee Geeks/Guru forum deleted their profile, which resulted in the removal of their posts. This came without a warning, yet accused them of being "flagrantly commercial" for suggesting nontoxic solutions to pharmaceutical viscosupplementations. This poster first sought help from The Knee Geeks/Guru forum immediately following a life-threatening reaction to Synvisc. There they discovered that they were not alone. Their posts progressively turned into the solutions they'd found to help improve their health and other options for joint problems that worked for them, and others they know...including me. The Knee Guru's apparent tolerance for posters who approve of Synvisc or other viscosupplementations in a repetitious manner leads one to speculate whether they singled this poster out. Yet their "site ethos" states:

"Site ethos - this site is run by a medical professional, and professional standards apply.
Although the content may be couched in lay terminology as far as possible, the material is sufficiently educational to be relevant even to medical professionals themselves.
There is no skew of content due to pressure from sponsors. Every attempt is made to be honest with opinions."


If this is true, then why delete a profile from someone who truly suffered and offered their solution to those who have suffered, might suffer or will suffer?

The Knee Guru also site claims:

Funding - currently the site has no direct commercial sponsors. The site is owned by ftmg Associates Ltd. The site has a key philanthropist who wishes to remain anonymous, and who has a special interest in building the KNEEguru into a quality information resource for patients. We hope in time to attract academic funding from offering the site with its vibrant bulletin board as a fieldsite for academic study.

Yet the forum is surrounded by advertisers, including those promoting Synvisc/Synvisc One--hidden behind "OA Knee Pain Treatment--one injection gets up to 6 month..." and many others.

The deletion of this poster's profile also happened within days of disclosing that the FDA no longer allowed the public to read the actual "event descriptions" from patients or health care providers on the MAUDE data base. [Discussed further on Sept 28 post ] Note: this change in public access took place ONLY on the MAUDE site for "medical devices", which is how the FDA classifies Synvisc. [Which is also questionable since it apparently is metabolized and anything injected into the body will cause a chemical change.]

The goal of this blog is to make known the things that people SHOULD KNOW BEFORE they consent to Synvisc. And to let those who reacted and were dismissed by their physician(s) know--YOU ARE NOT ALONE. If I, along with the many others in contact with me had this information PRIOR to our Synvisc injections, our lives would be MUCH healthier today. We are ALL still struggling to return to our "pre-Synvisc" health status...years out from the injections.

Read this blog and MAKE AN INFORMED choice. And be careful who sponsors the clinical trial studies that you believe...follow the money!

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