Posted by Margi (184.108.40.206) on November 08, 2000 at 10:22:39:
In Reply to: Please Fill me in on what is going on....... posted by Jackie on November 08, 2000 at 03:36:16:
I'll be the first to admit, it is a personality clash and I'm totally guilty for playing into the hand.
I'd also be the first to jump on the bandwagon if someone posted here that rolling in frozen reindeer poop and pasting chicken feathers to your forehead cured clusters. I don't care WHAT folks find to alleviate their pain, honest. If it feels good, do it. If we have only learned one thing here it is that there is, so far NO universal treatment for cluster headaches .
My problem is two-fold and spans a couple of years of history here. I guess my biggest concern is the question as to the validity of the nature of the sufferer's "illness". This has been a question for a long time here at ch.com whether the opiates being used are actually treating clusters or migraines or sinusistis. Way back when, Waterdog posted his symptoms and a lot of us questioned at the time whether or not he is indeed a CHer. This was at a time at ch.com that there were a multitude of, what we called 'CH Wannabe's' posting and those of us that actually live with cluster headaches (sufferers AND supporters) were desperate to hold on to our newly found oasis that actually dealt with what had never been given specific, accurate attention before. Remember how YOU felt when you first found ch.com? We got pretty possessive of the site and tried our best to keep it "pure" at the expense of being labelled "cliquey". No one WANTS to belong to this clique, we are forced to because of the nature of CH.
My second area of concern is with Waterdog's methodology in getting his "message" out. And this is where it gets personal, so I'll not clutter the board with my opinions. I'll only warn you, Jackie. There are people out there who have been banned from chronic pain sites and have forced the webmasters to password-protect their sites because of certain posters. This was actually a consideration here at ch.com for awhile and there was a worry about the safety of the convention.
Now, I can pretty much guarantee you that my email box will soon fill up with threats and that there will be a response to my post. I probably could have just emailed this to you, but by the response you will see, it will prove my point. If you like, I can discuss this further with you off the board.
Like I said though, Jackie - I really don't have a problem with ANY treatments out there. That isn't the point.
I apologize if I've upset you.
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