I agree Melody! I would be your friend on FB if you did that! Heck, I would be your friend on Facebook anyway! My Facebook name is Terri Dobkins. Anyone on this Neuropathy page who wants to be my friend on Facebook is MORE than welcome to freind me! I am friends with some already.

Hi, I just friended you on FB. I HOPE IT'S YOU. lol

And I absolutely tried to create my own Neuropathy Group. I'm still learning how to do this. I followed all the steps but got nowhere.

But I joined another neuopathy group on FB. Let's see where THAT takes me.

lol

Melody

i dont think i would last too long on that facebook page or group. i never even thought of facebook for that actually. maybe someday ill enter the 21 st century.

Hi Melody,
I was on the FB site the day you were on, I follow about 5 of these sites plus a couple in Yahoo groups. I seldom post as I read a lot of comments being posted, 1 thing I do is suggest this forum stating the amount of documentation pertaining to PN that this site possesses. There seems to be a who's in control issue on these sites and I don't follow any suggestions thats not documented. I guess it serves its purpose by letting folks vent about their pain issues which seems to be the main topic. I hope no one gets hurt as its possible some disinformation appears. Anyway you might find some benefit by hosting a site. Good Luck

--in that a lot of these Facebook sites for causes and such (not just for neuropathy) seem to be set up so that they become the mouthpiece or organ of individuals pushing a particular point of view, and such individuals often do have control issues and are not tolerant of alternative viewpoints.

I do think that one way in which Neurotalk is different is that we do try, to the extent we are able, to document our own individual experiences with scientific evidence, and over time we have built up quite a database of information; certainly the knowledge base rivals any other website and the level of expertise rivals that of any university medical center. And I think Dr. John, the moderators, and other experts do a very good job of "curating"--allowing discussion to be wide-ranging and exercising reasoned judgment as to what constitutes greater or lesser evidence (not an easy job).

Facebook? No thanks.

Well, I just got blasted again. I went to a completely different Neuropathy Page on FB. I posted a message saying how Methyl B-12 worked for ME. I was very careful. First I said "google Methyl B-12 and neuropathy", read the info and decide if you might be interested. I then explained my experience with it.

Well, I just got a good blasting by some guy who said "I would appreciate it if you would NOT give people false hope, blah blah, and stop pushing YOUR supplement".

You don't want to know what I told him.

And even if I started my own group, this guy would probably come along and post the same message.

You can't win. I now know this.

I'll stop opening my mouth.

But, on another note, two people did thank me, and went to Puritans and got the Methyl B-12.

Hope it helps THEM.!!

lol

Melody