Ethics check at:…”MSworld”

 

A few of my MS comrades have suggested a “Forum” be put in place dedicateted exclusively to the procedures of  Stem Cells worldwide.

Many members of MSworld are for the idea. (cuurent score: 16 for vs. 2 against in just 10 hours) Currently these posts are lumped into the “Medications and Natural Supplements” section of the site. The information is in demand. Over 53,000 views of the stem cell threads alone as of the last few months.  Recently (about a year and a half ago) the site went through some guideline changes.  It makes communication with other MS’ers very difficult.  I have posted my distaste for their new guidelines many times.

A few times…….my words never were heard…..they never put up my post that included links that would have help another MS’er make and informed decision about future treatment.  That sort of cencorship pissed me off real bad.

It’s now 1:50a now and I will post what I posted at MSworld just :20min ago.

The post is critical of  “Ken” (a moderator at MSworld) who refer’s to stem cell as “Snake Oil”.

I apologize if some of you find my comments “contriversal”.  But I am commited to helping other MS’ers find a way to fight the disease.  That is always my motivation.  That……and to help other MS’ers that are unable to pay for treatment…..find a way to fight the same as I.

“Hope”….for people stricken w/ MS is like pouring gasline over a campfire.

 

 

The following is my post last night at MSworld (in case it doesn’t make the board again):

 

                                                          “I respectfully disagree Ken”

 

It is this sort of conservative ideology here at MSworld.com… that has lead me to other places to find (in my opinion) more reliable, quantifiable information.

I think some of us here would take offence to the “promoting snake oil” reference you make when it comes to Stem Cell.

I…on the other hand… would throw in the fact that at least your line of thinking is consistent with the new “shackling” guidelines that now are in place here at MSWorld.

These guidelines are not that old.  It wasn’t always that way here.

I have mentioned before that trying to communicate here with….. “One arm tied behind your back” is very difficult.  My posts must always first be viewed by a moderator before being put up, the inability to post helpful links for people, the inability to PM people, even the language censorship. A mature audience wants to really know someone’s frustrations with the disease. 

It sometimes makes me wonder about what motivates the directors of the site.

Is it patient wellness?  I hope so.

Maybe it’s a volume capacity thing.  Site software technology?  We have been here a long time. Things maybe outdated.

I still hold out hope for this site.  There are some very smart people here.  We are very well self governing.

I wish I knew how to do one of those poll things.  The democracy should always win.

Be Well

Todd

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